10 Legal Myths About Advance Medical Directives

Transcription

ABA Commission on Legal Problems of the Elderly
10 Legal Myths About Advance Medical
Directives
by Charles P. Sabatino, J.D.
Myth 1:
Everyone should have a Living Will.
Living Will, without more, is not the document most people need. As a threshold goal, most
people should have a Health Care Power of Attorney (or Health Care Proxy) that names a trusted
person as agent or proxy. A still better alternative is to execute both documents or a single,
combined "Advance Directive" that names a proxy and provides guidance about one's wishes.
Unfortunately, because of statutory restrictions or inconsistencies within state law, many
practicing attorneys advise clients to execute separate rather than combined documents. State
advance directive laws are slowly moving toward acceptance of flexible, combined advance
directives, but the states differ significantly in this regard.
The reason for the primary importance of the proxy appointment is simple. Most standardized
living will forms are quite limited in what they can accomplish and what conditions they cover.
For example, most provide instructions that apply only if the individual is in a terminal condition
or permanently unconscious, yet the majority of health care decisions that need to be made for
patients lacking capacity concern questions about day-to-day care, placement options, and
treatment options short of "pulling the plug."
Moreover, most boilerplate instructions express fairly general sentiments about not wanting
treatments that serve only prolong the dying process. Relatively few people disagree with this
sentiment. However, applying it to a particular set of facts is more difficult than at first meets the
eye. Virtually no interventions only prolong the dying process. Any intervention can produce
multiple consequences, some predictable, some not so predictable. If an aggressive and possibly
painful course of treatment will give the patient a 1 in 3 chance of recovering to the point of
being able to converse again with loved ones for a least a few more months, is that hope enough
to treat aggressively? What if the odds were 1 in 25?
Living will instructions always need interpretation, even when the terminal nature of an illness is
clear. An agent or proxy under a health care power of attorney can do precisely that. The proxy,
who should know the patient's values intimately, can respond to the actual facts and variables
known when an actual health care decision needs to be made. Short of possessing a crystal ball,
no one can anticipate the specific and often complicated circumstances fate will place them in.
The proxy acts not only as legal decisionmaker, but also as spokesperson, analyzer, interpreter,
and advocate.
One caveat: if there is no one close to the individual whom he or she trusts to act as health proxy,
then the health care power of attorney should not be used. In this circumstance, the Living Will
is safer, despite its limitations.
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Myth 2:
Written Advance Directives Are Not Legal in Every State.
False. Every state recognizes both the proxy and living will type advance directives, although the
laws of each state vary considerably in terminology, the scope of decisionmaking addressed,
restrictions, and the formalities required for making an advance directive.
A more frequently raised question is whether an advance directive written in one state will be
recognized in other states. In other words, is the directive portable across state lines. Many states
expressly recognize out-of-state advance directives if the directive meets either the legal
requirements of the state where executed or the state where the treatment decision arises. Several
states are silent on this question. If there is doubt, the rules of the state where treatment takes
place, not the state where the advance directive was signed, will normally control. However,
even if an advance directive fails to meet technicalities of state law, health providers still should
value the directive as important, if not controlling, evidence of the patient's wishes.
The threshold problem with most state provisions addressing portability is that they presumably
require providers to be fully knowledgeable of the other state's law. Most use language derived
from the Uniform Probate Code and similar to the following provision included in the now
defunct Uniform Rights of the Terminally Ill Act:
A declaration executed in another state in compliance with the law of that state or of this
State is validly executed for purposes of this [Act].
Colorado and Utah offer a more user-friendly approach to recognizing out-of state
directives:
Unless otherwise provided therein, any medical power of attorney or similar
instrument executed in another state shall be presumed to comply with the
provisions of this [Act] and may, in good faith, be relied upon by a health care
provider or health care facility in this state.
Thus, in these, states providers may assume that the out-of-state directive is valid unless they
have actual knowledge to the contrary.
Myth 3:
Just telling my doctor what I want is no longer legally effective.
False. While it is better to have a written Advance Directive, oral statements remain important
both on their own and as supplements to written directives.
Oral instructions may take many forms. A person physically unable to execute an advance
directive may provide oral instructions that are reduced to writing by the doctor or another
person, acting for the patient. Several states treat such statements as formal Advance Directives
if witnessed properly. Less formal instructions in the nature of conversations with family,
friends, or physicians will not have the same legal status of a written Advance Directive.
Nevertheless, informal oral statements have two important attributes. First, good health care
decisionmaking requires good communication among all interested parties, and oral
communication is our most natural and, indeed, primary mode of communication. Ideally, a
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formal advance directive serves to aid this kind of communication, not to replace it. Second, oral
statements constitute important evidence of one's wishes and help expand upon, clarify, and
reinforce individual preferences. The contents of the written Advance Directive should reflect a
continuing conversation among the individual, physician, family, and close friends.
Myth 4:
An Advance Directive means "Don't treat."
False. While it is true that most people use Advance Directives to avoid being kept alive against
their wishes when death is near, it is a mistake to assume that the existence of an advance
directive means, "Don't treat." Advance directives are also used to say that the individual wants
all possible treatments within the range of generally accepted medical standards. What is said
depends upon one's particular wishes and values. Moreover, even when an advance directive
eschews all life-sustaining treatments, one should always assume (and insist upon) continuing
pain control, comfort care and respect for one's dignity.
Myth 5:
When I name a proxy in my Advance Directive, I give up some control and flexibility.
False. An individual gives up no authority or choice by doing an Advance Directive. As long as
the person remains able to make decisions, his or her consent must be obtained for medical
treatment. Health care providers cannot legally ignore the patient in favor of one's agent or
written instruction. Indeed, in most states, health care advance directives are "springing." That is,
they have no legal effect unless and until the patient lacks the capacity to make a health care
decision. In a minority of states, immediately effective directives are permissible, but the maker
always retains a right to override the proxy or revoke the directive.
There are situations in which a competent patient abdicates decisionmaking by saying, for
example, "Do whatever my daughter thinks is best." However, this form of delegation of
decisionmaking is effective only from moment to moment and needs to be rechecked at every
significant decision point. Neither the proxy nor a written instruction can override one's currently
expressed choice.
Myth 6:
I must use a prescribed Advance Directive form for my state.
Usually false. In most states, you do not have to use a specific form. About 37 state statutes
include forms for appointing proxies or for creating comprehensive advance directives. In the
majority of these, the forms are optional. In about 18 states, the forms must be "substantially
followed" or certain information disclosure language must be included in the form. Even with
these requirements, changes and additions to standard language are permissible. Indeed, any
form can and should be personalized to reflect the individual's particular values, priorities, and
wishes. If you do not agree with language contained in an approved form, change the language.
If changing the language creates any doubt about the validity of the form, then further legal
consultation is in order. Above all, it is a mistake to pick up an "official" form and just sign it
unchanged, without first being sure that it truly reflects one's specific wishes.
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Myth 7:
I need a lawyer to do an Advance Directive.
No, a lawyer is not needed. Yes, a lawyer is a helpful resource, but not the only resource, nor
necessarily the best resource for all persons. Advance directives are not difficult to complete, but
they require a few steps to do well. Try these steps for yourself, even if you already have an
advance directive.
First, obtain an "official" or generally accepted form for your state, plus at least one or two
additional advance directive forms from other sources. See the attached resource list for forms.
This helps you see the variations in topics different advance directives cover and the alternative
instructions they provide. The form-publishing business may be burgeoning, but most are
inadequate in one respect or another. Even with the best drafting, there is no perfect form for
everyone. People are different.
Second, discuss the contents of the forms with your physician, close family, and the person you
may name as proxy. Most people find these discussions difficult to initiate, but they are
extremely important. Gather information about your current medical condition and its
implications for future medical problems; clarify your own values and wishes; and ask your
physician, close family, and proxy if they are willing to support you in the way you want.
Third, complete the form you choose, being sure to add or modify language to reflect your
wishes more accurately. Be sure to follow the witnessing instructions for your state exactly.
Most, but not all states, require two completely disinterested witnesses. If you have a potential
family conflict, special legal concern, or unusual request, additional legal drafting help may be
needed. These circumstances call for consultation with a lawyer experienced in personal
planning.
Myth 8:
Doctors and other health care providers are not legally obligated to follow my Advance
Directive.
Legally false, but as in many endeavors, reality muddies the waters. As a matter of law, it is clear
that medical providers cannot treat an individual against his or her wishes. Consequently, if a
physician acts contrary to a patient's clear instruction directive or contrary to the decision of the
patient's authorized proxy, the physician risks the same liability he or she would face if the
physician were to ignore a refusal of treatment by a fully competent patient. Treatment would
constitute a battery. However, a few factors complicate the situation.
First, the doctor or health facility sometimes do not know about the existence of an advance
directive. While federal law requires hospitals, nursing homes, and home health agencies to ask
about and to document your Advance Directive, the document often does not make it into the
appropriate record. It is up to the patient and those close to the patient you to ensure that
everyone who might need a copy of the directive in fact has a copy.
Second, as noted earlier, people often do not express their wishes very clearly or precisely in
advance directives. Simply using general language that rejects "heroic measures" or "treatment
that only prolongs the dying process" does not give much guidance. Therefore, interpretation
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problems may arise. Giving a proxy broad authority to interpret one's wishes will help avoid this
problem, except that sometimes proxies themselves are not quite sure what the patient would
want done. This fact underscores the importance of discussing one's wishes and values with the
intended proxy.
Third, in most states, if a physician or facility objects to an Advance Directive based on reasons
of conscience, state law permits the physician or facility to refuse to honor it. However, facilities
must notify the patient of their policies regarding advance directives at the time of admission. If
a refusal occurs, the physician and facility should provide assistance in transferring the patient to
a provider that will comply with the directive.
Fourth, persons who are dying, but living in the community, may face problems in having an
advance directive followed if a crisis occurs and emergency medical services (EMS) are called
(for example, by calling "911"). EMS personnel are generally required to resuscitate and stabilize
patients until they are brought safely to a hospital. States are beginning to address this situation
by creating procedures that allow EMS personnel to refrain from resuscitating terminally ill
patients who are certified as having a "do not resuscitate order" and who have an approved
identifier (such as a special bracelet).
Myth 9:
If I do not have an Advance Directive, I can rely on my family to make my health care
decisions when I am unable to make decisions for myself.
This is only partly true. If an individual does not have an advance directive naming a health
decisions agent or proxy, several states expressly designate default "surrogates," typically family
members in order of kinship, to make some or all health care decisions. Only a few of these
statutes authorize a "close friend" to make decisions, and then normally only when family
members are unavailable.
Even without such statutes, most doctors and health facilities routinely rely on family
involvement in decisionmaking, as long as there are close family members available and there is
no disagreement. However, problems can arise because family members may not know what the
patient would want in a given situation, or they may disagree about the best course of action.
Disagreement can easily undermine family consent. A hospital physician or specialist who does
not know you well may become the default decisionmaker.
In these situations, patients risk having decisions made contrary to their wishes or by persons
whom they would not choose. Moreover, family members and persons close to patients
experience needless agony in being forced to make life and death decisions without the patient's
clear guidance. It is far better to make one's wishes known and to appoint a proxy ahead of time
through an Advance Directive.
Myth 10:
Advance Directives are a legal tool for old people.
False. Don't think of this as an "old" people's issue. It may be natural to link death and dying
issues with old age, but that is a mistake when it comes to advance directives. Consider that
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perhaps the most well known landmark court cases those of Nancy Cruzan and Karen Ann
Quinlan involved individuals in their 20's. The stakes are actually higher for younger persons in
that, if tragedy strikes, they might be kept alive for decades in a condition they would not want.
An Advance Directive is an important legal planning tool for all adults.
Commission on Legal Problems of the Elderly
American Bar Association
740 Fifteenth Street, NW
Washington, DC 20005-1022
Telephone: 202-662-8690
Fax: 202-662-8698
Email: [email protected]
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Do You Need an Advance Directive?
If you are young and healthy, do you need an advance directive?
If you are in poor health, do you need an advance directive?
If you have discussed your wishes about health care decisions with your family, do you
need an advance directive?
The answer is to each of these questions is "yes."
You are at risk unless you have taken the simple but necessary step of signing an
advance directive that will protect you if you are ever unable to make your own health
care decisions. This is known as a durable power of attorney for health care.
It’s not the same as another type of advance directive known as a "living will." (The
living will -- sometimes called a "directive" or a "declaration" -- is downright dangerous.
It actually gives power over your life and death to an unknown physician.)
In a durable power of attorney for health care, you designate a trusted family member
or friend to make health care decisions for you if you are unable – either temporarily or
permanently – to do so for yourself.
Most people think such a document is only for those who are very sick or very old.
That’s not true. It’s absolutely essential for anyone who is 18 years old or older.
Some (but not all) states have laws to cover a patient who hasn’t designated someone
to make health care decisions. Such laws contain a "priority listing" of those who can
make decisions for an incapacitated patient. But, in some states, those decisions may
be limited to withholding or withdrawing treatment. They may not give the necessary
authority to protect a patient. In other states, the law gives doctors the power to decide
for patients if there are conflicts among those on the list.
Here are just three illustrations of what can happen if you haven’t specifically named
someone to make your health care decisions:

Bob is a 19-year-old college student. He is seriously injured in a sports accident.
His condition is now stabilized. He is expected to improve, but he is not able to
communicate yet. Some decisions must be made about his therapy and
treatment.
Bob’s parents are unable to get information from his medical records and
have no authority to make decisions for him because Bob is in a state
that does not have a priority listing of decision makers.

Joe and Sally are married with three children – 15-year-old Bob, 18-year-old
Tom and 20-year-old Mary. Driving home from a local restaurant, Joe and Sally
are hit head-on by another car. Joe is killed. Sally is in critical condition.
Sally’s twin sister, Sue, who is very close to Sally and with whom Sally
had often discussed her wishes about health care, rushes to the hospital.
She attempts to get information about Sally’s condition. She is told the
law prohibits disclosing such information to her. Instead, the information
can be given to Tom and Mary who, under state law, have the authority
to make medical decisions for their mother.
Unfortunately, Tom and Mary do not get along with each other and the
law requires agreement between them before any action can be taken.
This leads to a delay in authorizing treatment that could have vastly
improved Sally’s ability to recover fully.

Alex is a 57-year old truck driver. While mowing the lawn, he has a heart attack.
Due to a lack of oxygen, he has sustained brain damage. He hasn’t named
anyone to make health care decisions but he lives in a state with a priority
listing that gives his wife, Anna, first priority in making his decisions. Anna
knows that Alex would not want a ventilator but would want to be tube fed if
necessary.
Alex is breathing on his own and is being fed by tube. His brother, Dave,
objects to the tube feeding. The doctor in charge of Alex’s care thinks the
tube feeding should be stopped.
In the state where Alex and Anna live, the attending physician or an
advanced practice nurse can select a decision-maker who is ranked lower
in priority if, in his or her judgment, that person is "better qualified."
Because Dave agrees with him, the doctor decides Dave is better
qualified than Anna to make decisions for Alex. The tube is removed and,
12 days later, Alex dies of dehydration.
To be certain that a person you trust will be making decisions for you if you
can’t do so yourself, you must have a durable power of attorney for health
care that specifically names that person.
As with any legal document, the wording of the durable power of attorney for health
care is critically important. And it must comply with the laws in your state.
That’s why the International Task Force formulated the Protective Medical Decisions
Document (PMDD). The PMDD is a durable power of attorney for health care that has
been drafted to protect you.
It gives the person you name to make your health care decisions the authority to act on
your behalf. That person is generally referred to as your "agent."
The PMDD limits your agent’s authority in one specific way. It clearly states that your
agent does not have the authority to approve the direct and intentional ending of your
life.
For example, your agent may not authorize that you be given a lethal injection or an
intentional drug overdose. Further, your agent may not direct that you be denied food
or fluids for the purpose of causing your death by starvation or dehydration.
This limitation not only protects you, but it also protects your agent from being
subjected to pressure to authorize such actions.
The PMDD also has specific directions that are necessary in the current medical climate.
For example, some health care providers have taken it upon themselves to put Do Not
Resuscitate (DNR) orders in place without the patient’s or agent’s authorization.
Similarly, some health care providers, ethics committees and health facilities are
making decision about what is "appropriate" or "beneficial" based on institutional costcontainment considerations, not on the basis of what is best for or wanted by the
patient.
The PMDD makes it clear that DNR orders and decisions about what is "appropriate" or
"beneficial" are to be made only by your agent (if you’re not able to do so).
There’s something else.
Some states require that, when a durable power of attorney for health care is
distributed in printed form, it must have a specifically printed "notice" or "warning." The
ITF distributes state-specific PMDDs for those states as well as a Multi-State PMDD for
use in other states.
A PMDD protects you.
When you have a PMDD, you or someone you’ve selected – not some unknown
physician or nameless bureaucrat – will make your health care decisions.
Filling out a PMDD takes only a few minutes – far less time than applying for health
insurance, car insurance or even applying for a credit card. And it can be even more
important.
Having a PMDD can mean the difference between life and death.
Each PMDD packet contains: detailed questions and answers about the PMDD, a
checklist to use when signing your PMDD; three PMDD forms (so that you can provide
documents with your original signature to your agent and to any alternate agents); and
a wallet card on which you can write the names and phone numbers of your agent and
alternate agents so they can be reached in case of an accident or emergency.
If you don't already have an advance directive, the PMDD packet is a must. If you have
another type of advance directive, review the PMDD and decide whether you may wish
to replace your existing document.
And, if you already have a PMDD, now is the time to see to it that each and every
member of your family and all of your friends have one as well.
While you may never be in a situation where a PMDD will be needed, isn’t it a good idea
to prepare for the worst while hoping for the best?
Isn’t it better to be safe than sorry?
............
Protective Medical Decisions Document
What is the Protective Medical Decisions Document (PMDD)?
The PMDD is a protective Durable Power of Attorney for Health Care which is available
from the International Task Force. It is a document in which you name someone you
trust (a family member or a close friend) to make health care decisions for you if you
are ever permanently or temporarily unable to make such decisions for yourself.
What makes a PMDD necessary?
The following are some of the reasons that a PMDD is necessary:
1. Federal regulations require every hospital and health program that receives any
Medicare or Medicaid funds to inform you, upon admission, of your rights regarding an
advance directive. As a result, many facilities are giving patients a Living Will or
Durable Power of Attorney to sign at the time of admission -- when you're naturally
under stress and you're filling out other paperwork.
2. Many hospitals are instituting "futile care" guidelines which may preclude the wishes
of a patient who is unable to communicate. The PMDD specifically states that the
meanings of "beneficial" and "appropriate" care are to be left to the agent who knows
the values and wishes of the signer.
3. An effort is underway across the country to add euthanasia and assisted suicide to
end of life options. The PMDD specifically prohibits euthanasia and assisted suicide.
4. Previously, family members were automatically considered the decision makers for a
loved one. This is rapidly changing. Unless you have named someone as your agent to
make decisions for you if you can't give informed consent, a health care provider or
court appointed guardian who doesn't know your values and wishes may make critical
decisions for you.
5. Ever since the federal Health Insurance Portability and Accountability Act (HIPAA)
went into effect, some health care facilities have refused to provide information to
anyone - even family members - about a hospitalized adult unless the patient has given
written consent. The PMDD gives your agent the authority to obtain necessary
information in the event that you are unable to give written consent at the time of
hospitalization.
Taking the time now to sign a PMDD will assure you that you have carefully chosen the
family member or friend who will protect your best interests if you can't speak for
yourself.
Who should have a PMDD?
It's a good idea for every person who is 18 years old or older to have a PMDD. Many
people assume that such a document is only necessary for the elderly or for the
seriously ill, but people of any age or health condition could be in an accident after
which they could be temporarily or permanently unable to make their own health care
decisions.
How does the PMDD differ from a "Living Will"?
The PMDD is a Durable Power of Attorney for Health Care. A Living Will is a document,
often called a "declaration" or a "directive," in which the signer gives power and
authority to an "attending physician" to withhold or withdraw medical interventions
under certain circumstances. Because the "attending physician" may be a total stranger
who is completely unfamiliar with the signer's values and wishes, terms in the
document may be interpreted by the physician in a manner that was not intended by
the signer. Also, with the Living Will, family members and others -- who are familiar
with the signer's values and wishes -- have no legal standing to interpret the meaning
of the directive.
Are there any limitations on my agent's authority?
Yes, the PMDD limits your agent's authority in one specific way. It makes it clear that
your agent does not have the authority to approve the direct and intentional ending of
your life.
For example, your agent may not authorize that you be given a lethal injection or an
intentional lethal drug overdose. Further, your agent may not direct that you be denied
food or fluids for the purpose of causing your death by starvation or dehydration.
This limitation not only protects you but also protects your agent from being subjected
to pressure to authorize such actions or omissions.
If I'd like to give my agent other directions or express other special
provisions, should I add these in writing to my PMDD?
Although you may legally add other provisions in writing, you are advised not to do so.
The "Statement of Special Provisions, Directions and Limitations" found in the PMDD
lists those areas where specific language is necessary in the current medical climate.
For example, some health providers have taken it upon themselves to put DNR orders
in place without the patient's or agent's authorization. Similarly, some health providers,
ethics committees and health facilities are deciding what is "appropriate" or "beneficial"
based on quality-of-life decisions that may be at variance with a patient's values. Thus,
the PMDD makes it clear that DNR orders and decisions about what is "appropriate" or
"beneficial" are made only by the agent (if the PMDD signer is not able to do so).
Since it is not possible to predict all circumstances that may be faced in the future and
it is not feasible to cover all possible interventions, adding specific written directions
may severely limit the discretion and flexibility that your agent needs and may restrict
your agent's authority in a way you didn't intend. In addition, if you add specific written
directions you won't be able to alter them through discussions between you and your
agent. You would have to execute an entirely new document.
Instead of including any additional provisions or directions in writing, discuss them in
detail with your agent both when you sign your PMDD and after periodic review of your
document.
Who may serve as my agent?
It is important to select your agent carefully. Although an agent is also called an
attorney-in-fact, that person need not be an attorney.
You may wish to select a spouse, other family member or close friend as your agent.
Your agent should be an adult who shares your values and whom you trust to make
decisions on your behalf. He/she also should be a person who will be comfortable
asserting your rights.
Do I need more than one agent?
You are not required to name more than one agent but it is a good idea to name one or
two alternates so that, if your agent is not available or is incapacitated, an alternate
may act on your behalf. Alternates should be selected with the same degree of care as
your primary agent.
How many sets of PMDD documents should I sign?
You should give a completed, witnessed and signed PMDD to your agent and to your
alternate agent(s) since they would need it to prove that they have the authority to
make decisions for you.
You may also wish to make photocopies of the signed, witnessed document for your
own records and for a friend, neighbor or health care provider so that they could easily
contact your agent in the event of an emergency.
(Do not keep your PMDD in a safe deposit box or any other place that is inaccessible.)
Why does the PMDD specify that photocopies of my signed document aren't
considered valid?
Your PMDD limits the use of photocopies to use for informational purposes only. By
requiring valid documents to have original signatures, you are protected if you decide
to revoke your PMDD or designate someone else to be your agent. You need only
retrieve and destroy those few signed documents. On the other hand, if photocopies of
your signature were valid, you would have no way of knowing how many photocopies
were made by others or to whom they were given.
Is the PMDD valid in every state?
The Multi-State version of the PMDD conforms with the laws of most states. Some
states, however, have specific statutory requirements for a durable power of attorney
for health care. For those states, the ITF distributes PMDDs specifically drafted to meet
the state's technical requirements. Those states include: AK, AL, CA, CT, DE, FL, HI,
IN, MI, MN, MO, NC, ND, NE, NH, NV, OH, OK, OR, SC, TN, TX, UT, VT, WV and WI.
If I have signed a PMDD in one state and move to a state that has different
statutory requirements, do I need to sign a new PMDD? No. If your PMDD was
valid in the state where you signed it, it will be honored in another state.
PMDDs can be ordered from
Protective Identification Card
Wallet sized card stating that the signer opposes euthanasia and assisted suicide and
wants no intervention or drugs intended to end life.
For a single card, send a self-addressed stamped envelope and a request for the card.
100 cards - $7.00 (includes postage and handling).
Protective Medical Decisions Document (PMDD)
International Task Force's Durable Power of Attorney for Health Care in which the
signer names an agent to make health care decisions in the event that the signer is
unable to do so. The document expressly defines and prohibits euthanasia.Available
only in sets.
Each PMDD set includes questions and answers, a checklist, 3 PMDD documents and
one Protective Identification Card.
Available in Multi-State version and state-specific versions. For AK, AL, CA, CT, DE, FL,
HI, IN, MI, MN, MO, NC, ND, NE, NH, NV, OH, OK, OR, SC, TN, TX, UT, VT, WV, WI,
order state-specific version. For all other states, order Multi-State version.
$8.00 for postage and handling.
Be sure to specify version when ordering.
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Print, Complete and Mail to:
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International Task Force
P.O. Box 760
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All orders must be prepaid in US funds.
Orders outside US add 5%.
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Make checks payable to "The International Task Force" and mail to:
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Alternatives To Guardianship
By Marsha Katz, Project Director
The Rural Institute, University of Montana
Preface
There is no question asked more often by the parents of a disabled child
than, “What will happen to my son or daughter when I am no longer
around?”
The combination of love, fear and concern as a child approaches adulthood
often has parents questioning whether or not they should pursue legal
guardianship. This parental inner struggle is made even more difficult by the
lack of information available regarding what a guardianship can and can’t
do. In fact, most people have many misconceptions about what a
guardianship really is... and isn’t. This article will offer parents, teachers and
support providers information they don’t typically receive about
guardianship. In addition, it will offer students and families alternatives that
can allow families to remain respectfully involved in their children’s lives as
they transition into adulthood.
Reality and Myth
First and foremost, it is essential that parents know that the best protection
for their child and their child’s future is a caring involved family, and a
network of community connections. With these two things in place, aided by
appropriate estate planning, parents can truly achieve some peace of mind
as both they and their child with a disability age. This same peace of mind
cannot be achieved merely with a legal peace of paper, which in reality
offers a mostly false sense of security, and provides for an unnecessary
amount of control.
Why is it a “false” sense of security? Typically, parents and others believe
that a legal guardianship document can prevent bad things from happening,
can insure good things will happen, and will fix things that go wrong.
Unfortunately, none of these commonly held beliefs are true. Even when
people have guardians, they can be abused, exploited and hurt by others.
Just like any of us, they can be physically hurt by friends or strangers, they
can be hit by a car, they can choose the wrong foods, destination and
friends. Further, having a legal guardian doesn’t guarantee receiving
needed services and/or supports, nor does it assure a great job or enough
money. If something bad does happen, or if the hoped for good things do
not occur, a guardianship document is not the one and only way to attempt
to “fix” things, seek recourse or provide advocacy.
The best and most respectful way to minimize harm, increase the prospect
of a quality life and provide advocacy is not the removal of someone’s
rights. We often hear the term “giving someone a guardian,” making
guardianship sound like some benevolent act, or the presentation of a gift.
In reality, “giving someone a guardian” means taking away their rights. In
guardianship, some or all of a person’s rights are taken away and given to a
third person. If someone has a full (plenary) guardian, they don’t have the
right to choose their own clothes, leisure activities, friends or even food.
Another person has the legal right to tell them what they can and can’t wear,
what movie they can see, with whom they can associate, and how many
times a week they may eat potato chips. The reality of a guardianship is
actually the opposite of what we as Americans have historically said we
cherish. We have long and fervently believed that our personal protections
lie in having and exercising our rights, not losing them, or having them taken
away. We hold individual rights and the control of our lives very dear. That
being true, it becomes difficult, if not hypocritical, if we seek to justify
guardianship by saying we want to “protect” our children. How can we
protect them by removing their rights, the very things we go to war to
maintain for ourselves? Doesn’t it make more sense, in the alternative, to
partner our strength and rights with those of our sons and daughters and,
thus, have an increased joint power, rather than a diminished singular one?
Alternatives
How then can students and adults with disabilities partner with others to
exercise joint power? There are a number of ways. The least intrusive is
simply by being connected and present. Go to meetings and planning
sessions, and participate together. Family members and friends, by their
very presence and advocacy, can assure that a person with a disability has
every opportunity to communicate, is treated respectfully, and that
professionals focus on supporting a person’s dreams and on recognizing
and nurturing a person’s strengths, not deficits.
When access to records, and routine invitations to meetings are important,
an adult person with a disability can empower a family member or friend to
participate by signing a “Release of Information” or “Advocacy
Authorization” (samples follow). Any of us can sign a “Medical
Power of Attorney” that allows another to advocate on our behalf, give and
receive information, and, in certain appropriately limited situations, actually
make our medical decisions for us. This is another tool that persons with
disabilities can use as well to partner with others while retaining all their
legal rights.
Another great tool for partnering with persons with disabilities is the use of
the “person-centered planning” concept. This can be utilized in transition
planning, job development/self employment and delivery of services from
the Development Disabilities, Mental Health, or other systems. Briefly, the
person planning process might contain the following steps/components:
1. First, the individual chooses who to invite. Typically this will be those with
whom the person feels a connection- family, friends, clergy, neighbors, coworkers, teachers, etc.
The more people participating, who are NOT paid to be in someone’s life,
the better.
2. Everyone meets in a comfortable, non-institutional setting (preferably with
food), and, assisted by a facilitator, shares the person’s strengths and
dreams for the future. Everyone contributes, and family members are
always surprised at some of the new things even they find out. Also
refreshing, is having many different perspectives help to produce a picture
of a whole person who is the sum of many parts, rather than a limited
picture of a single part.
3. An action plan and timetable are developed which address how to deal
with any real or perceived barriers to achieving the dream. Everyone leaves
with one or more tasks, and a time to reunite to monitor progress.
This person-centered method accomplishes several things. First, a network
of naturally connected friends and family assure that a person doesn’t make
decisions in a vacuum, or worse, have all decisions made “ in their best
interest” by paid service providers. Secondly, it assures that tasks and
support are shared by a number of people so no one person has the weight
of another’s happiness entirely on their shoulders. Third, it permits the
person and everyone else to be thoroughly conscious of the person’s
strengths and gifts and dreams and humanity, all of which increase the
likelihood of inclusion. The person-centered approach is a very natural way
to partner with someone to work toward and then achieve their dreams.
What If...?
There are many “what if...?” questions asked by families. For instance I
have often heard, “Shouldn’t I become my son’s guardian, just in case?”
If someone with a disability is in an accident, circumstances are not any
different than they are for the rest of us. If a person is injured in a car crash,
and is taken unconscious to the hospital emergency room, medical
personnel are legally empowered to take any action necessary to save life
or limb, regardless of the person’s inability to consent. If the situation is not
an emergency, but is nonetheless urgent, medical personnel typically ask
next of kin for treatment permission, regardless of whether or not the person
had a disability before the accident or urgent situation.
What if a written or verbal authorization is legally required for medical
treatment, and someone is not able to give one, and there is no medical
power of attorney in place? In such cases, a temporary guardian can be
immediately appointed at any hour by the local judge on-call, and the judge
can grant the temporary guardian only the power to sign the medical
authorization. The procedure is the same whether or not a person has a
disability, and a judge’s order can be very narrowly defined so as to achieve
authorization for needed treatment that lasts only until the person
her/himself can resume exercising their own power of consent.
What If.....Scenario #2
“What if I want to have my daughter sterilized so she can’t get pregnant?”
This is one concern that is often the real “hidden agenda” when parents
seek guardianship. In many states, sterilization, like a heart transplant, is
considered an “extraordinary procedure”, and is not covered by a typical
guardianship. In addition, if family and friends are concerned because a
woman is “too cognitively disabled to care for herself”, then perhaps more
than pregnancy, people close to her need to worry about and guard against
abuse. If sexual abuse of a very vulnerable person is prevented, then most
likely, so will unwanted pregnancy be prevented. If a woman is able to
engage in consensual sex with a partner of compatible ability ( whether or
not he passes muster with her family), then a more typical solution might be
birth control, including methods like the underarm implants, which offers
protection for months at a time. Of course, all of this is assuming that the
woman is actually able to conceive ( is not biological sterile), and is actually
sexually active, or even interested in sex.
Sometimes the prospect of sterilization can actually be overkill by parents
who want to assuage their parental fears. It does not address the more
basic issues such as biological ability to conceive, interest in sex, having a
partner, how to meet people, developing and maintaining healthy
relationships, and how to say “NO” to unwanted touch. Unless a guardian is
joined to a woman at the hip and can monitor her 24 hours a day, then
guardianship alone cannot prevent abuse, exploitation or unwanted
pregnancy or sexually transmitted diseases. If a woman is under her
family’s watch 24 hours a day, then guardianship is unnecessary because
there will be no opportunity for wanted, or unwanted sexual contact. A
family’s best chance at long term peace of mind is helping to facilitate
friendships and connections to people in the community who are not paid to
be in their daughter’s life.
“What If....” scenario #3
“What if my son or daughter is pressured or enticed into signing a lifetime
contract for new siding by some fast talking con man?”
First of all, since guardianship doesn’t come with a magic shield, your son or
daughter might still be persuaded or coerced into signing something. It will
just be unenforceable. Instead of guardianship, advocacy is an appropriate
situational solution. All of us have 3 days within which we can withdraw our
consent to any sales contract we may have signed. Beyond that time frame,
a call by family, a friend, an advocate or attorney explaining the situation
should result in voiding the contract by the issuing company. Most
companies do not want their salespeople exploiting or taking advantage of
vulnerable people. If your son or daughter does not own property and
receives only SSI and/or SSDI, their benefits cannot be attached legally to
satisfy a debt. The parents of adults with disabilities are also not responsible
for any debts their children incur, unless, of course, they are co-signers. If
all else fails, legal services or your state’s Protection and Advocacy agency
can assist with legal help to explain in court how your son or daughter was
exploited.
In all of these very common scenarios, guardianship is not able to prevent
bad things from occurring. In addition, there are other ways available to deal
with nearly all of the possibilities that are of great concern to parents, and
which leave your son’s and daughter’s dignity and rights intact. Some of the
possibilities for typical supports, available to everyone, or disability-specific
supports that can provide support and serve as alternatives to guardianship
include:
1. Supports Available to All of Us
A. Family and Friends
B. Circles of Support
C. Releases of Information; Advocacy Authorizations;
Appointment of Personal Representative
2. Scheduled Checks and Alerts-Generic Community Assistance
A. Postal service checks
B. Unpaid utility bills/meter reader observations
C. Telephone reassurance programs
3. Generic and Disability Supports
A. Food and prescription drug deliveries
B. Meals on Wheels
C. Home visitors and “Pets on Wheels”
D. Service animals
E. Transportation to medical and other appointments
F. Personal Assistance/Home Health Services
G. Home sharing/roommate
H. Home and Community-based Services (HCBS) or other
Medicaid Waiver
4. Legal Assistance Requested and/or Authorized by the Person
A. Advance Directives/Protective Medical Decisions
Document (PMDD)/Living Will
B. Surrogate decision making/Health Care Proxy
C. Durable Powers of Attorney
5. Assistance with Finances
A. Banking services
B. Joint ownership of bank accounts, or two-signature
checks
C. Authorization of a specific banking transaction
D. Living and/or other Trusts (Amenities Trusts/OBRA
Trusts)
E. Representative Payee (appointed by Social Security for
SSI/SSDI benefits)
F. Conservatorship
6. Assistance Where We Live
A. Case Management/Supports Coordination
B. Senior Care/Adult Day Care
C. Respite Care programs
D. Continuing Care Retirement Communities
E. Assisted Living facilities
F. Group/Foster Care Homes
Utilizing a combination of the above alternatives, families have a
full toolbox to help them stay involved with their son/daughter,
assure respectful and meaningful support for their
son/daughter, and protect their son’s/daughter’s rights.
12
Amenities Trusts for Individuals with
Developmental Disabilities or Mental Illness
Joel S. Welber
I. Overview
A. Terminology §12.1
B. The Use of Trusts for People with Developmental Disabilities or Mental Illness § 12.2 C.
Understanding the Need to Blend Public Programs with Private Resources
1. The Cost of Personal Assistance § 12.3
2. Poverty as a Prerequisite for Access to Essential Services § 12.4
II. Drafting the Amenities Trust
A. Protection of Medicaid Eligibility § 12.5
B. Defining Amenities § 12.6
C. Understanding an Amenities Trust in the Context of the Grantor's Estate Plan § 12.7
D. Funding the Trust
1. Finding the Correct Funding Level
a. Developmental Disability § 12.8
b. Mental Illness § 12.9
2. Avoiding Double Funding § 12.10
3. Funding at the Death of the Grantor §12.11
E. The Need to Retain Flexibility in Trust Instructions
1. Drafting Considerations § 12.12
2. Recognizing the Irrevocable Life Insurance Trust Trap and Learning to Avoid It §12.13
III. Selection of a Trustee
A. The Case for the Corporate Trustee § 12.14
B. The Role of Siblings as Advisors § 12.15
IV. Disposition of the Trust on the Death of the Beneficiary
A. The Misconception Concerning the Obligation to Repay § 12.16
B. Charitable Opportunities §12.17
V. OBRA 93 Trusts
A. In General
1. Statutory Background § 12.18
2. When to Use an OBRA 93 Trust §12.19
B. Technical Requirements § 12.20
C. Judicial Approval § 12.21
D. Disposition on the Death of the Beneficiary § 12.22
VI. "Solely for the Benefit of Trust
A. In General §12.23
B. Requirements § 12.24
12-1
06 Supp.
12
Forms
12.1
12.2
12.3
Exhibit
12.1
Qualifying Language for an Amenities Trust
Language to Avoid Double Funding
Language for an OBRA 93 Exception A Trust (Partial)
A List of Amenities
I. Overview
A. Terminology
§12.1 This chapter describes and discusses amenities trusts for individuals with developmental
disabilities or mental illness. The term amenities trust describes a trust that is designed to provide
benefits to the individual who is disabled or mentally ill other than basic support. It is intended to
coexist with means-tested benefits, specifically Supplemental Security Income and Medicaid. An
amenity is anything that is not food or shelter and does not involve a direct distribution of cash to a
Medicaid recipient. This chapter describes when to use such trusts and how to create them. These trusts
are an essential part of the estate planning process for parents who have a child with a developmental
disability or mental illness.
For the practitioner who does not routinely work with families that include children with
developmental disability or mental illness, the name amenities trust may be confusing as most authors
and practitioners refer to the trusts described in this chapter as special needs trusts, often SNTs. I do not
use the term special needs trust and I raise the issue of terminology for practitioners to consider for the
reason that this term is viewed by parents of children with disability or mental illness as an
exclusionary term that undermines the movement for inclusion led by advocates in this area over the
last three decades. Beginning with the deinstitutionalization of people with developmental disabilities
in the 1970s, advocates have struggled to ensure the inclusion of people with disabilities in communitybased living, in mainstream education, in employment, in the self-determination of community-based
supports, in the maintenance of legal rights, and in many other areas. Because the casual use of the term
special needs individual may hinder the ability to focus on each individual's particular requirements,
advocates who understand the global consequences of the use of this term object to it.
The term special needs highlights the perceived differences between those with disability and those
without disability. The term amenities trust, on the other hand, accurately describes the purpose of the
trust without unnecessarily evoking the condition that has resulted in the exclusion of those with
disability or mental illness. While special needs trust may be a more familiar and convenient term,
familiarity and convenience should yield to a concern for the sensibilities of clients who seek services in
this area and the efforts and goals of advocates for persons with disability or mental illness.
B. The Use of Trusts for People with Developmental Disabilities or Mental
Illness
§12.2 A family that has a child with a developmental disability or mental illness faces planning
challenges that are decidedly different from other families. Early in the child's life, parents realize that
their child is not likely to attain economic self-sufficiency through sustained gainful employment.
Depending on the severity of the disability, parents also understand that their child will likely require
extensive personal support simply to engage in the ordinary activities of daily living.
06 Supp.
12-2
12
Predictably, parents begin to worry about their child's long-term future almost immediately on
discovery of the disability or on the onset of mental illness. While a child with a developmental disability
is young, parents are usually able to provide personal care and support in the family home. Often,
mental illness does not manifest itself until a child is in his or her late teens or early 20s. Therefore,
many individuals with mental illness are also raised at home in their childhood years.
However, as both children and parents age, parents understand that they will not be able to
provide continuing personal support throughout their child's entire lifetime. Parents also realize that the
cost of purchasing services required to support their child is well beyond the means of all but the
wealthiest families. Inevitably, most parents conclude that their child will need to qualify for and
receive public benefits to pay for basic yet essential personal services. In fact, well over 90 percent of
adults with developmental disabilities who reside outside the family residence qualify for and receive
public benefits. Dohn Hoyle, CEO, The ARC Michigan. For adults with mental illness the percentage is
slightly lower but still exceeds 85 percent. James Haveman, former director, Department of Community
Health, State of Michigan. These benefits include Social Security Disability Insurance, 42 USC 401 et
seq., Medicare, 42 USC 1395 et seq., Supplemental Security Income (SSI), 42 USC 1381 et seq., and
Medicaid, 42 USC 1396 et seq.
Despite the substantial reliance on public benefits that fund basic services for people with disabilities
and mental illness, privately funded trusts are an important tool in the planning process. Trusts
provide a resource from which to purchase amenities to enhance the quality of a person's life without
interfering with his or her access to essential public benefits. Trusts can be useful in developing residential
options to a child and in assuring that his or her needs are monitored following the parents' deaths.
Trusts are the private contribution to the financial challenges that accompanies developmental
disability or mental illness.
From the perspective of money management, a child with a developmental disability or mental
illness cannot be considered a good candidate to receive an outright inheritance. Parents understand
that some person or entity will be needed to administer any inheritance that the parents expect to leave
for their child. Regardless of which public benefits their child may qualify for, trusts are virtually
always used to receive the private funds that are transferred by parents for the benefit of the child.
Omnibus Budget Reconciliation Act of 1993 (OBRA 93) trusts are used to shelter unexpected lumpsum financial distributions to a person with a developmental disability or mental illness, while
protecting Medicaid eligibility. 42 USC 1396p. These distributions, which might consist of unstructured
inheritances, personal injury settlements, or even lump-sum payments from the federal government,
would otherwise interrupt the flow of public benefits and would add marginal value to the person's
life. The creation of an appropriate trust to administer and preserve these assets creates additional
potential for the enhancement of the recipient's life.
C. Understanding the Need to Blend Public Programs with Private
Resources
1. The Cost of Personal Assistance
§12.3 The use of amenities trusts for the benefit of people with developmental disabilities or
mental illness is best understood in the context of the living arrangements provided for these individuals.
Historically, if a family had a child with developmental disabilities, the options for long-term
residential care were to (1) keep the child at home for as long as possible and then move the child in with
relatives or (2) place the child in a state institution. Large state institutions warehoused people with
developmental disabilities. State psychiatric hospitals were used to provide treatment and residential
services to people with mental illness.
06 Supp.
12-3
§ 12.4
Michigan Revocable Grantor Trusts
People with developmental disabilities or mental illness no longer make their primary residence in
state institutions, psychiatric hospitals, or nursing homes. Michigan began closing its institutions in the
early 1970s, and since then thousands of people have moved from institutions into group homes or
other supported living arrangements in communities throughout the state. In addition, there is still a large
number of adult individuals with developmental disabilities who reside at home with their parents.
Families who keep their child at home undertake the burden of providing care and personal assistance
for far longer periods of time than families whose children do not have disabilities_ Most children
with a developmental disability, such as mental retardation, do not leave home to go to college, get a
job, or get married and have children of their own. They remain at home because they lack the cognitive
skills to live anywhere other than where substantial personal supports are present. Some families
deliberately keep their child at home because the parents do not want to face losing control over their
child to the mental health system that contracts for group homes and supported independent living
arrangements. Other families have placed their child on a waiting list for group homes or apartments
and are awaiting suitable placement.
Regardless of why a child has remained at home, the reality is that a community-based placement is
almost inevitable unless some other relative undertakes the obligation of providing care for the child.
Parents naturally tend to become incapacitated or die before their children. For many families, the issue
of long-term residential care, outside of the family home, remains to be addressed.
The private home, the group home, or the supported independent living arrangement share one
common element. These are environments in which a person with a developmental disability or mental
illness is provided with essential personal assistance by third parties. The amount of personal assistance that an
individual requires can vary from minimal assistance to full-time care. Personal assistance needs are related to
individual cognitive and psychological ability.
The essential point is that when personal assistance is provided by nonfamily third parties, the
cost of staffing personal assistance needs becomes prohibitive at a very modest level of need. An
adult with a high level of cognitive ability who requires only modest support, for example four or five
hours per day, represents a substantial economic challenge to a family trying to fund his or her needs
privately. In fact, many adults with developmental disabilities require far more personal assistance.
Some people require assistance 24 hours a day, 365 days a year. The cost of this assistance can exceed
$100,000 or more annually if privately funded.
Most parents understand that they are not expected to be the primary funding source for their child's
personal assistance needs throughout his or her lifetime. Personal assistance provided in a supported living
arrangement outside of the family residence may be funded through Medicaid. Medicaid is a needs-based
program funded over 50 percent with federal general fund dollars and state matching funds and
administered by the states.
In addition to personal assistance needs, Medicaid is the primary funding source for a number of
additional mental health services provided through community mental health agencies. These include
case management, medical care, some transportation related expenses, respite for families providing
primary care, specialized equipment, hospitalization costs in facilities not operated by the State of
Michigan Department of Community Health, and other benefits.
Medicaid has additional value to people with mental illness. Even for individuals who are capable
of living on their own with minimal personal assistance needs, Medicaid is an invaluable resource because
it pays for medication and psychiatric services. People with chronic mental illness are not likely to earn
medical benefits by engaging in sustained gainful employment, thus Medicaid becomes an irreplaceable
source of funds to pay for these medical necessities. All of the
Benefits described above are in addition to the resources required to provide for the food, clothing,
and shelter of the individual.
06 Supp.
12-4
Amenities Trusts
§ 12.8
2. Poverty as a Prerequisite for Access to Essential Services
§1.2.4 Medicaid has evolved into the primary funding source for the personal assistance and medical
needs of people with developmental disabilities and mental illness. However, Medicaid eligibility is needs
based. 42 USC 1396 et seq.; MCL 400.105 et seq. To be Medicaid eligible, a person can have only
limited assets and income. If a person has resources from which he or she may provide for his or her basic
support, eligibility for needs-based benefits is denied.
In 2006, a person with a developmental disability or mental illness who has nonexempt assets greater than
$2,000 is not Medicaid eligible. PEM Item 400, at 4 (Michigan Program Eligibility Manual). The income
test is substantially more intricate, but it is sufficient to point out that unearned income in an amount as
little as $30 per quarter can begin to impact on Medicaid eligibility. PEM Item 500, at 4. Medicaid requires
that all income be counted whether or not the income is earned unless the income is specifically excluded.
PEM Item 500, at 1. Until excess countable assets are spent down or converted to exempt assets, the flow
of benefits is jeopardized and the mental health delivery system is potentially disrupted.
Accordingly, parents who have a child with a developmental disability plan to assure that their
child does not have excess resources. At age 18, a person with a developmental disability or mental illness
can qualify for SSI payments. SSI is used to provide an income stream for an individual who is disabled
and does not have "excess" income or assets. When a person is SSI eligible, he or she is also Medicaid
eligible in Michigan. Advocates advise parents to make certain that their child does not have excess assets
when he or she attains majority, so that SSI and Medicaid can be obtained at the earliest time.
When mental illness first manifests itself, a process of divestment usually occurs. Expenditures are
made for essential care, medical expenses, and other necessities of life. An uninsured hospitalization might
result in impoverishment, or any other number of factors or events can culminate in the spend down of life
savings. Usually the capacity to earn sufficient income to sustain an unsubsidized standard of living is
impaired by the mental illness. Once excess assets are exhausted, Medicaid eligibility is attained.
For people with developmental disabilities or mental illness, Medicaid is the sole, credible source of
funds for the purchase of personal assistance and medical necessities. But Medicaid eligibility comes at a big
price. The reality, of course, is that the "system" by which essential personal assistance, mental health services,
and prescription medication is delivered to people with developmental disabilities or mental illness requires
categorical personal impoverishment as a prerequisite to admission.
The present mental health system, designed by bureaucrats, legislators, and advocates has created a
large class of people with developmental disabilities or mental illness who are systematically
impoverished. For these individuals, deliberate and continuous divestiture of "excess assets" is a
prerequisite to access essential personal assistance services. Politically, people have difficulty accepting a plan
to protect private funds when public funds are being received. Unless an attorney fully comprehends the
extent of impoverishment that the mental health system requires, he or she might not have a clear
understanding of why amenities trusts are important to the basic quality of life of the beneficiary.
Amenities trusts exist in the context of a Medicaid-dependent mental health system. The
amenities trust begins to mitigate the dependence on public benefits by providing a source of private funds to purchase goods and services that enhance the quality of the beneficiary's life. This
trust, when included in the parents' estate plan, allows parents to provide a meaningful inheritance to their
child without disrupting the flow of benefits that is so critical to a child who requires substantial personal
assistance and medical treatment.
12-5
06 Supp.
§ 12.6
A. Protection of Medicaid Eligibility
§12.5 First and foremost, amenities trusts protect Medicaid eligibility. Next, these trusts provide a
source of funds to purchase amenities, which enhance the quality of life of the beneficiary without
impacting the flow of public benefits in any way. Drafting the amenities trust requires strict
attention to the regulations and case law that define what are countable assets and that the Michigan
Department of Human Services (DHS) uses to determine whether the trust assets or income affect or
disqualify the beneficiary from Medicaid eligibility. The mere existence of a trust is not disqualifying, in
and of itself. The issue in determining eligibility is whether the beneficiary has an ascertainable interest
in trust assets that the beneficiary can direct toward the beneficiary's needs. PEM Item 401 states that a
trust created with resources of others (e.g., parents in their estate plan) is an available asset "of the
person who is legally able to direct use of the trust principal for his needs, or direct that ownership of
the principal revert to himself" PEM Item 401, at 12. Otherwise, the trust is not a countable asset. See
also Miller v Department of Mental Health, 432 Mich 426, 442 NW2d 617 (1989).
As to the income that a trust generates and expends, PEM Item 401 states "Count as a person's
unearned income any payment received from the trust." PEM Item 401, at 13. It is obvious that this
simple description of "unearned income" has significant implications regarding a trustee's ability to
make a direct distribution of cash to a beneficiary. What advocates do not necessarily agree upon is
whether or not every other distribution from the trust except a direct payment to the beneficiary is not
countable. For example, PEM Item 500 defines income as "benefits or payments measured in money."
PEM Item 500, at 1. It then states, "Count all income that is NOT specifically excluded." Id.
Third-party assistance is specifically excluded. "Payment of a person's bills by a third party directly
to the supplier using the third party's money is NOT income to the person." PEM Item 500, at 32-33.
The example used in the PEM illustrates the point:
Example: Sally's father, Joe, pays Sally's rent. Joe uses his own money. Joe does NOT owe Sally
any money. The payment is NOT income to Sally.
PEM Item 500, at 3.3.
This section of PEM Item 500 and the accompanying example appear to authorize trusts to pay
for essential needs (food and shelter) in the trustee's discretion. However, the author does not find
sufficient authority to satisfy himself that monthly expenditures for Sally's rent, made from a trust wherein
Sally is the sole beneficiary and made at the discretion of the trustee, would not be considered countable
unearned income triggering a spend down. See, for example, PEM Item 500, at 5, which states "[e]xclude
that portion of income received from another person, an agency, or an organization that covers past,
current, or future expenses when all of the following are met: The payment is NOT for normal
household living expenses such as rent, mortgage, personal clothing and food eaten at home."
The sample language provided with this chapter represents the author's conservative approach
with respect to the discretion to provide for food and shelter. If the matter was settled, this approach
could be safely abandoned in favor of a more liberal approach. In any event, the issue is clear with
respect to SSI. Third party payments for food and shelter are countable income that reduce SSI payments
accordingly.
06 Supp.
12-6
Amenities Trusts
§ 12.8
B. Defining Amenities
§12.6 Some attorneys attempt compile a comprehensive list of amenities to include in the trust
instrument. These lists are often accompanied by detailed instructions to the trustee concerning regular
visitation of the beneficiary and similar matters. The language provided in form 12.1 represents a
different approach to the definition and description of amenities.
An amenity is any good or service that provides a benefit to the beneficiary and is not prohibited by or
disqualifying from Medicaid. A well-drafted amenities trust provides as much latitude and flexibility to the
trustee as possible, constrained only by the technical restrictions that accompany Medicaid eligibility. Exhibit
12.1 is a partial list of appropriate expenditures from an amenities trust. As of March 9, 2005, the Social
Security Administration (SSA) no longer counts gifts of clothing as income for SSI-related purposes. The
ARC Michigan.
C. Understanding an Amenities Trust in the Context of the Grantor's Estate
Plan
§12.7 The amenities trust is a disposition for the child of the grantor that belongs alongside the
dispositions for other children. There is no need to create a separate, freestanding trust apart from other
dispositions. Generally, the amenities trust is a part of the family or credit shelter trust in a standard twotrust estate plan. The funding of this trust will occur following the death of the surviving spouse of the
grantor or following the death of the grantor if there is no surviving spouse.
a. Developmental Disability
§12.8 In an estate plan for a family that has no child with a disability or mental illness, parents will
commonly split their estate equally among their children. Occasionally one child is favored or disfavored,
but fundamentally, most parents want to treat their children equally.
When a family has a child with a developmental disability, the issue of a funding level for his or her
trust becomes important. Some parents are inclined to leave all of their assets in trust for the child with a
developmental disability, even to the exclusion of other children. Other parents have been advised to
disinherit the child with the disability to avoid interference with needs-based programs, particularly Medicaid.
Neither of these extreme approaches is required to accomplish the goals discussed in this chapter. In fact,
disinheritance in favor of other children may create adverse consequences for the child with a developmental
disability.
An alternative approach is to work backward from the perceived financial need and to calculate a
principal amount required to fund that need. Parents advise the planner about the types of amenities the child
presently enjoys. The planner then calculates the cost of these amenities and additional needs, such as
monitoring services, financial management, advocacy, and other services that parents presently provide.
Using these numbers, a planner works backward and determines the amount of money required for
funding a trust to provide for these needs. This calculation need not be exact but rather is used as a ballpark
figure to be used in funding the trust. This approach is used by planners who have experience interacting
with people with disabilities and their families.
For a planner who has less familiarity working with people with developmental disabilities, an
attempt to calculate the cost of amenities might not work as well as simply dividing the estate equally
among the children. In general, there is no correct or incorrect funding level for amenities trusts. A child with
a developmental disability or mental illness can usually receive an equal share of the grantor's estate without
creating undue problems because the funding range for these trusts
12-7
06 Supp.
§12.9
is quite broad. In the range between $100,000 and $500,000, the income that the trust generates is
usually sufficient to provide a nice source for amenities while keeping the principal intact.
A small trust is funded at less than $100,000. These trusts present the problem of finding a
corporate fiduciary to administer the trust because the banking relationship is too small for most
commercial banks. The solution is to rely on siblings, advocates, or other trusted persons to act as
fiduciaries and to take the risks attendant to that relationship.
A large trust might be funded at greater than $500,000. With large trusts there is a possibility
that the trust will generate substantially more income than is required to meet the amenity needs of the
beneficiary. People with developmental disabilities tend to be very modest consumers. They do not
require expensive toys or excessive vacations for their individual happiness. Often, a summer camp
experience or a trip to Disneyland will be more than adequate to please the beneficiary. The trust can pay
for both the beneficiary and the personal assistant who is required to accompany the beneficiary to make
the trip possible.
In general, expenditures tend to be modest, and the trust should provide that the trustee may
accumulate income if there are no appropriate distributions. At higher funding levels, amenities trusts
for people with developmental disabilities can reach a point of diminishing financial returns. Parents may
be justified in funding this trust at a lower level and diverting the excess assets to other children. For
example, if a family has three children and a net distributable estate of $1.5 million, the child with a
developmental disability might not need to have $500,000 funding his or her amenities trust. As a result,
parents can favor the other two children by giving each of them a greater share of the estate without doing
any harm whatsoever to the child with a developmental disability.
For many families, a trust as large as $250,000 or more might seem excessive. However, an
amenities trust can be used to purchase a residence to be occupied by the beneficiary and require the
beneficiary to pay rent to the trustee. If the rent payment constitutes a reasonable share of the expenses of
maintaining the home, it will satisfy the provision that the trust not be used for the
shelter of the beneficiary. The source of the rent payment will generally be either SSI, Social Security
Disability Insurance, or both. Also, roommates (who are acceptable to the beneficiary) might be used
to share the expenses associated with maintaining the house. The use of amenities trusts to provide a
residential alternative for the beneficiary is common and benefits both the beneficiary and the state.
See Joel S. Welber, The Use of Trusts to Compliment Essential Governmental Benefits In
Residential—Life Care Planning, 75 Mich RI 402 (1996).
b. Mental Illness
§12.9 The funding level that is appropriate for a child with mental illness will reflect the
capabilities of the child. Many children with mental illness drive cars, attend college or community
college, travel, live independently, and manifest needs that are more intricate than those of people
with developmental disabilities. Because the consumption needs of the child with mental illness can
be somewhat similar to those of their siblings, an equal division of the estate among the grantor's
children is often appropriate. However, the planner should not be lulled into thinking that the
cognitive ability of the child with mental illness affects the need for an amenities trust. Unless a child
is capable of sustaining long-term gainful employment without reliance on public benefits, the
disposition should always be in trust.
2. Avoiding Double Funding
§12.10 One small problem for the drafter who is not accustomed to funding a trust in a specific
pecuniary amount is that it is possible to double fund an amenities trust. This is not desirable. The
amenities trust is usually a subtrust of the family or credit shelter trust to be fully funded on the death
of the survivor of the grantor and the grantor's spouse. Usually the husband's and wife's
06 Supp.
12-8
Amenities Trusts
§12.24
grantor trusts contain mirror-image language concerning the division of the family or credit shelter
trust into shares and the allocation of the share for the child with a developmental disability or mental
illness to his or her amenities trust.
If a grantor has decided to fund an amenities trust with a specific dollar amount of assets, for
example, $150,000, the problem of double funding arises. At the time of the first death, a credit shelter
trust will receive assets of up to $1.5 million, which will be more than enough to fund the pecuniary
amount of the amenities trust on the subsequent death of the grantor's spouse. However, if the survivor's
trust is not changed, the possibility exists that a second trust, funded in the amount of $150,000 will be
created on the death of the surviving spouse from the assets in his or her family or credit shelter trust.
Language can be inserted into the trust to avoid this double funding problem. A sample of that
language is contained in form 12.2.
3. Funding at the Death of the Grantor
§12.11 One misconception that is common among parents of a child with a developmental
disability or mental illness is that money has to be allocated to the trust for this child during the
parents' lifetimes. In reality, there generally is no reason to fund a trust for this child before funding a
disposition to any other child—in other words, at the time of the parents' deaths. Obviously, an
amenities trust contained in the parents' grantor trusts cannot receive annual exclusion gifts or other
transfers. The creation of a freestanding amenities trust for the sole purpose of receiving $12,000 or
$24,000 gifts is possible but not common. The main problem with doing this is that the parents cannot act
as trustee, and the size of the trust is too small to justify professional management. Most parents
realize that during their lifetimes their natural inclination is to purchase amenities for their child and no
trust is required for them to do so. Usually parents are relieved to know that the trust can be funded on
their deaths.
E. The Need to Retain Flexibility in Trust Instructions
1. Drafting Considerations
§12.12 Trusts for beneficiaries with developmental disabilities or mental illness need to be
flexible. The concept of what constitutes an amenity should be developed in the most general and flexible
manner possible, without provoking a challenge from the DHS. In the language provided in form 12.1,
the restrictions on the trustee are clear and unequivocal. There is no attempt to make the trust available
for "food, clothing, or shelter" if the state fails to provide a public benefit. The accommodation of present
Medicaid law is a paramount consideration in drafting.
However, the scope of what constitutes an amenity is very broad. For example, the trustee can
purchase "personal services that are not otherwise available to the beneficiary from any other source."
Because the trust is not a countable asset and because the beneficiary is Medicaid eligible, the trustee
should be free to expend trust income on whatever amenities are determined to be desirable to enhance the
quality of life of the beneficiary. The document gives the trustee the opportunity to be creative in
assuring that the beneficiary's needs are met.
The trust should not attempt to look too far into the future to tie the beneficiary to a particular
living arrangement or caregiver. The trust should contemplate that the beneficiary with a developmental
disability or mental illness will survive all of his or her siblings. Finally, the document should provide
for the ultimate disposition of assets following the death of the beneficiary, generally without
providing the beneficiary with a power of appointment for the reasons discussed in §12.16.
12-9
06 Supp.
§ 12.13
2. Recognizing the Irrevocable Life Insurance Trust Trap and Learning to
Avoid It
§12.13 There is an almost unacceptable conflict between amenities trusts and documents that
cannot be modified during the lifetime of the grantor. During the past 25 years, substantial changes
have occurred in the public's perception of and approach toward people with developmental disabilities
and mental illness. For example, advocates have made substantial gains in the development of supported
independent living arrangements for people with considerable cognitive and physical disabilities.
Often, the impetus for change comes from outside of the family and sometimes in spite of parents'
efforts to find a "secure" placement for a child with an agency or in a group home. Trust instruments that
are inflexible may present an obstacle to lifestyle changes that are inevitable for people with
developmental disabilities and mental illness. Also, a lack of flexibility might prevent a trust from
compliance with a change in eligibility requirements for needs-based benefits to the detriment of the
beneficiary, even though there have been very few substantive changes in eligibility regulations over
the past two decades.
The irrevocable life insurance trust (MIT) trap arises in one of two circumstances. First, a family
with wealth decides to create an ILIT to create additional wealth, which is not subject to federal estate
tax. In this context, the estate planner drafts an amenities trust into the ILIT to be funded on the death of
the insured and perhaps his or her spouse. Unfortunately, this trust is irrevocable. If the trust contains
disqualifying language, it cannot be changed. Even if the trust is a perfectly drafted amenities trust, it
might contain provisions that a subsequent grantor trust would not contain.
One easy solution to this ILIT trap is to give the trustee the right to amend the trust or name a trust
protector for this purpose. Another easy solution is to include the amenities trust in the grantor's grantor
trust even if the beneficiary with a developmental disability or mental illness is disinherited from the
proceeds of the ILIT. The funding of the amenities trust can be given priority in the grantor trust if the
fear is that there might not be enough assets to create shares that are equal or fair among all of the
children. Often, families that have the resources to create an ILIT will have sufficient assets to fully fund
an amenities trust from noninsurance sources.
The second potential ILIT trap is less obvious. In recent years, financial planners have discovered that parents of children with developmental disabilities or mental illness constitute a fertile
market in which to sell planning services and products. These parents desperately seek assurance that
their child will be safe and fully provided for following their deaths.
Some financial planners espouse the view that a freestanding trust for a child with a disability should
be created separately from the grantor trust used in the estate plan. They argue that if the grantor
requires long-term nursing care, the depletion of the grantor's estate could adversely affect the grantor's
ability to provide an inheritance to the child with a developmental disability or mental illness.
Often, a parent's concern for his or her child is so great that the parent is induced to purchase a
separate life insurance policy or some other financial product to assure funding for this freestanding trust.
When life insurance is added to an estate, whether it truly adds value or not, there is a tendency to lock
the insurance into an irrevocable trust to cement the assurance that the death benefit will be available for
the beneficiary. The estate planner is brought into this plan to draft the documents and in essence, to
ratify the plan.
The mere fact that a child has a developmental disability or mental illness does not justify a
purchase of life insurance or the use of an irrevocable trust. Attorneys should be objective and analyze the
estate plan to determine whether the estate will benefit from the purchase of life insurance or whether
parents are being sold a product from which marginal benefit will be derived.
06 Supp.
12-10
§12.9
Sometimes life insurance is an appropriate product to add to an estate to provide additional
funds with which to fund an amenities trust. For example, a young couple with small children and little
savings might benefit from life insurance that can be used to provide for income replacement or even to
fund an amenities trust on the second death. An older couple who can afford a secondto-die policy
might want to add additional coverage to fund an amenities trust.
In other cases, a family may have more than adequate funds to provide security to the parents
and to fund an amenities trust on the parents' deaths. If this is true, a child's security does not depend on
the parents' willingness to buy a fmancial product from the planner. Freestanding trusts funded by life
insurance should only be used when the planner can articulate a clear and credible rationale for such a
plan. Moreover, if the proposal is to use an irrevocable trust, whether funded with life insurance or
otherwise, this option should almost always be avoided, absent some extraordinary circumstance that
justifies this loss of flexibility.
A. The Case for the Corporate Trustee
§12.14 Choosing a trustee is a very important part of the planning process when a beneficiary has
a developmental disability or mental illness. A fiduciary will be required to manage assets
throughout the lifetime of the beneficiary. There will be no sprinlding of principal and the trust will
remain intact as long as assets remain and the beneficiary is living. The choice of fiduciary may
determine the success or failure of the funded trust. See Joel S. Welber et al., But What Will Happen
To My Child? What Is the Role of the Trustee in the Administration of a Trust for a Beneficiary with
Developmental Disabilities? Trusts & Estates (June 1992).
When the beneficiary is a person with a developmental disability, many parents lean toward using a
sibling or other relative as a trustee. They correctly presume that the beneficiary's sibling will be in the
best position to know the needs of the beneficiary. There is also a tendency for parents to want to save
fiduciary fees; they perceive, albeit often without much investigation, that trust company fees will be
large and will diminish the ability of the trust to provide adequate amenities for their child.
Banks are commonly criticized for being too conservative in their investment philosophy. Based
largely on anecdotal evidence, parents will argue that banks are not good at investing for growth and
are slow to distribute income once earned. Some older parents continue to question the safety of deposits in
banking institutions. Among other things, these parents do not understand that trusts do not constitute
general deposits. All of these factors and others predispose many parents toward a noncorporate
fiduciary, usually a sibling. In spite of these objections, when drafting an amenities trust, a planner can and
should make a case in favor of a corporate fiduciary. The reasons and arguments that support this case
are as follows:
1. A corporate fiduciary provides certainty and stability to the administration of the trust and will
definitely outlive the beneficiary. In many cases, parents simply assume that the sibling that
they want to act as fiduciary will outlive the beneficiary or that the sibling will remain in the area,
never be transferred in his or her job, or never lose interest. Of course, once these possibilities are
raised, parents begin to understand the benefit of naming a corporate fiduciary.
2. A corporate fiduciary is accountable and insured. Ultimately, a sibling may not be accountable, as
a practical matter. Most beneficiaries with developmental disabilities are incapable of understanding
the nature of the trust arrangement; many have no comprehension of money. They are certainly
not in a position to protect themselves against trust mismanagement. If trust assets are
squandered, mismanaged, lost to the sibling's creditors when commingled, or
12-11
06 Supp.
§12.9
converted by the sibling, a planner must assume that there will be no recourse. In fact, a beneficiary
with a developmental disability will probably not know that he or she has been injured.
On the other hand, a corporate trustee is accountable and collectible. A sibling or guardian can
exercise oversight and provide protection for the beneficiary when a corporate fiduciary is used.
This issue needs to be discussed with parents in the planning process.
3. A corporate fiduciary provides professional money management. Generally, most people may do an
adequate job of investing their own money, but investing someone else's money, in trust, requires
skills and understanding that many, if not most, people do not have.
4. The cost of professional management is not a significant consideration when the beneficiary is a
person with a developmental disability. Most corporate fees are set between 1 and 2 percent of the
trust principal, per annum. In fact, this fee is reasonable considering that the assets are
professionally invested and there is full accountability. Most beneficiaries with developmental
disabilities are not consumers of large-ticket items. Generally, they do not require funds for
expensive houses, cars, vacations, computers, tuition, or other items that trustees are commonly called
on to fund. A conservative investment strategy designed to produce sufficient income to meet the
modest needs of the beneficiary and grow with or better than inflation is well suited for most
amenities trusts.
The combination of professional management, accountability, perpetual existence, and a conservative
approach to money management works well for amenities trusts for people with developmental
disabilities. The challenge is to find a corporate trustee who is willing to manage a fund that may be
less than $250,000. One approach to this problem is to use the same trustee for a substantial number of
trusts. Another approach is to use the trustee as successor for the entire estate plan and to give the
trustee the right to settle the estate. The ability to offer this incentive to the trustee is another reason for
folding the amenities trust into the family or credit shelter portion of the parents' grantor trust rather than
creating a freestanding document. If large banking institutions continue to combine and form yet larger,
less personal entities, the use of a bank as corporate fiduciary may indeed diminish. Parents and
planners most certainly will balance the positives recited above with the negatives associated with the
large, impersonal organizations that banks are seemingly becoming.
When the beneficiary is a person with mental illness, parents are far less likely to hesitate in
naming a corporate fiduciary. Many parents do not want to name a sibling as trustee when the beneficiary
has a mental illness because the parents perceive that the sibling is put in a difficult if not untenable
position. Mental illness presents very different challenges than mental retardation, autism, or other
developmental disabilities. People with mental illness are often quite aware of financial matters; they
understand what money can do for them and they are also acutely aware of their own poverty. A
sibling, charged with the responsibility of a fiduciary, is placed in the unenviable position of
withholding access to trust assets or income from his or her own sibling. The beneficiary's reaction to the
acts of the sibling trustee can be very damaging to the relationship between the siblings.
B. The Role of Siblings as Advisors
§12.15 Siblings play a very important role in the operation of the amenities trust. One very
important part of the estate planning process is to make sure that the primary beneficiary's needs are
closely monitored after the parents' deaths. Communication between a corporate fiduciary and a
beneficiary with a developmental disability can be highly problematic. In many cases, an intermediary or
advisor is the best answer to the problem of identification of needs facing the trustee.
06 Supp.
12-12
Amenities Trusts
§12.24
As previously noted, most parents assume that a beneficiary's siblings will be in the best position to
know the needs of the beneficiary.
Even though siblings might not make the best trustees, they are invaluable as advisors to the
corporate fiduciary. Language is provided in form 12.1 that can be used as a part of the amenities trust
to name a sibling or siblings as advisor. Corporate trustees are very comfortable when interacting with
family members. Trustees welcome input concerning the beneficiary's needs when
there is a developmental disability or mental illness.
However, a sibling should usually be named as an advisor rather than as a cotrustee. Naming a
sibling as a cotrustee introduces an unnecessary element of complexity into the relationship between
corporate fiduciary and sibling. Siblings do not need to be consulted about every investment decision
that the corporate fiduciary makes. Usually, a trustee's expression of a willingness to consult with a
sibling as an advisor is sufficient to address the parents' concerns about monitoring the beneficiary's
needs.
If the beneficiary has no siblings, language should be inserted into the trust to permit, if not
require, the trustee to hire a person or an agency to regularly monitor the beneficiary's needs. The
estate planner drafting the amenities trust has to understand that the communication between the
trustee and beneficiary will be very different in an amenities trust from other trusts for children.
Accordingly, the issue of naming advisors or giving instructions to monitor needs is a part of each
amenities trust.
A. The Misconception Concerning the Obligation to Repay
§12.16 Amenities trusts are designed to last throughout the lifetime of the beneficiary. On the
death of the beneficiary, an amenities trust can provide for the payment of reasonable funeral and burial
expenses of the beneficiary. Often, this trust is the primary source of funds for these purposes. The trust
should contain provisions for the disposition of the remaining assets and accumulated income
following the payment of these expenses.
There is no present case law or regulation that precludes giving the beneficiary of an amenities
trust a power of appointment over the disposition of the remaining trust assets. However, as a practical
matter, this is rarely done. The power to dispose of the remaining trust assets would make a very
attractive target for states that engage in estate recovery. Also, because the beneficiaries are people with
developmental disabilities or mental illness, they may not have the practical ability to exercise such a
power and when they attempt to do so, their capacity is subject to challenge.
Rather than bring the issues of capacity or estate recovery into play, a grantor can direct the
disposition of the trust assets that will remain following the death of the primary beneficiary. In
many cases the primary beneficiary will not have issue surviving, although this is not always the case.
There is a possibility of a generation skip making its way into this trust, and the drafter should be
careful to plan accordingly. Generally, however, the grantor is likely to dispose of the trust to siblings of
the primary beneficiary (or their descendants).
Contrary to a widely held misbelief, there is no obligation to use the remaining trust assets to
reimburse the State of Michigan for Medicaid benefits received by the beneficiary during the existence of
the trust. The repayment requirement only applies to OBRA 93 trusts, discussed in §§12.18-12.22.
A trust that is not an OBRA 93 trust but that is drafted to require repayment to the state nonetheless
arguably breaches the applicable standard of care for drafting amenities trusts.
B. Charitable Opportunities
§12.17 The disposition of the amenities trust provides an opportunity for a charitable disposition
of assets by the grantor. The beneficiary is not given a power of appointment; generally,
12-13
06 Supp.
§12.9
§ 12.18
there are no surviving issue, and siblings have already received their shares of the grantor's estate. The
grantor's most compelling interest, the well-being of the child with a disability or mental illness, has
been addressed. As a result, it is common for a grantor to use this opportunity to make a charitable
disposition to the entities that have provided care, advocacy, research, or other services that benefit
the person with a development disability or mental illness during his or her lifetime.
V. OBRA 93 Trusts
A. In General
1. Statutory Background
§12.18 In 1993, Congress adopted important provisions concerning Medicaid trusts as a part of
OBRA 93. 42 USC 1396p. A Medicaid trust is a trust created by a grantor, or by someone acting on
behalf of the grantor, using assets countable to the grantor. PEM Item 401, at 3-7. Usually a transfer into
a trust is made in an attempt to shelter assets and subsequently to qualify for Medicaid benefits. Medicaid
trusts had begun to creep into the planning process for the elderly, in anticipation of the grantor
entering a group home or long-term care facility Assets found in Medicaid trusts are countable, and
income generated by the assets is also countable using Medicaid eligibility criteria.
Congress has created two important exceptions to the Medicaid trust provisions. These are
known as Exception A trusts, 42 USC 1396p(d)(4)(A), and Exception C trusts, 42 USC
1396p(d)(4)(C), and are intended to benefit people who are disabled as defined under the Social Security
Act, 42 USC 1381 et seq. In Michigan's PEM, Exception C trusts are referred to as Exception B trusts.
However, outside of this one awkward reference, they are known throughout the estate-planning world
as Exception C trusts.
Under both Ekception A and Exception C, assets may be transferred to a trust for a person with a
disability and create or protect Medicaid eligibility as of the time of the transfer. This protection
permits the uninterrupted flow of benefits if countable assets are received that place an individual over
the eligibility limit. However, OBRA 93 does provide that on the death of the beneficiary of the trust, the
trust assets will be paid either to the state or states that have provided Medicaid benefits (Exception A) or
to a nonprofit that has acted as trustee during the lifetime of the beneficiary (Exception C). See Patricia K.
Dudek & Jan M. Peronis, OBRA-93 Expansion of Trust Options for Persons with Disabilities (1997).
2. When to Use an OBRA 93 Trust
§12.19 OBRA 93 trusts are used to shelter unexpected lump-sum distributions received by the
person with a developmental disability or mental illness. They are not a typical part of a parent's estate
plan for a child. OBRA 93 trusts are specifically used to protect settlements from personal injury cases,
receipt of retroactive Social Security benefits in excess of spendable amounts, matured Uniform Gifts to
Minor Act (now Uniform Transfers to Minors Act) accounts that interfere with Medicaid eligibility and
unexpected inheritances or gifts from relatives that are not put into otherwise properly funded
amenities trusts.
OBRA 93 protects Medicaid eligibility when disqualifying assets are received by a person with a
disability. The substantive provisions of the trust must require that neither the income nor the principal
be available for the support of the beneficiary, otherwise there will be an impact on ongoing eligibility. In
other words, the OBRA 93 trust is an amenities trust with OBRA qualifying provisions.
06 Supp.
12-14
Amenities Trusts
§12.24
B. Technical Requirements
§12.20 Exception A provides that a trust created by transfer of (otherwise countable) assets by
trust
must be a trust containing the assets of an individual under age 65 who is disabled (as defined in 42
USC 1382c(a)(3)(A)) and which is established for the benefit of the individual by a parent, grandparent,
legal guardian of the individual, or court if the state will receive all amounts remaining in the trust on the
death of such individual up to an amount equal to the total medical assistance paid on behalf of the
individual under a state plan under this title. 42 USC 1396p(d)(4)(A); Patricia K. Dudek & Jan M.
Peronis, OBRA-93 Expansion of Trust Options for Persons with Disabilities (1997). See form 12.3 for
sample language.
An Exception C trust contains similar provisions concerning the transfer of countable assets to a
trust. However, under Exception C, the trustee must be a nonprofit organization and the exception
contemplates a pooling of assets by people with disabilities, with separate subaccounts for each
subscriber. On the death of the primary beneficiary, who is the person with a disability, assets that are
retained by the trust may be used for the benefit of others with disabilities. The nonprofit organization that
is the trustee is not required to pay the state unless it relinquishes the assets that remain in the
beneficiaries account. Exception C trusts are just beginning to become available in some regions of
Michigan.
or on behalf of a person with a disability is not a Medicaid trust if the following criteria are met. The
C. Judicial Approval
§12.21 Technically, OBRA 93 does not require judicial approval for the establishment of either
an Exception A or an Exception C trust. As noted, an Exception A OBRA 93 trust may be created by
the person's parent, grandparent, guardian/conservator, or by a court. Under Exception C, the trust may
be created by the person himself or herself, in addition to the persons mentioned above.
As a practical matter, an attorney who participates in the creation of an Exception A trust may want to
obtain probate court approval. Specifically, a guardian or conservator of a legally incapacitated person
(under the Estates and Protected Individuals Code (EPIC)) or a guardian of the estate of a person with a
developmental disability (under the Mental Health Code) would want to obtain a single protective
order permitting the creation of an OBRA 93 trust. When there is no guardian or conservator
appointed, the same relief is requested. A single protective order is obtained that authorizes the creation
of the trust on behalf of the legally incapacitated person.
There are several reasons why court approval should be obtained:
1. The present statutory basis under which a conservator or guardian of the estate can create an
irrevocable trust without court approval is tenuous. OBRA may permit this transfer as a matter of
federal Medicaid law, but neither EPIC nor the Mental Health Code clearly empowers the
fiduciary to divert assets of the ward to such a trust without court approval. In fact, under EPIC, a
hearing and determination that a basis for a protective order exists appears to be mandatory if a trust
is being created for a protected person. See MCL 700.5407(2)(c)(v). Further, under EPIC, a
conservator does not have the express power to create a trust without court approval. MCL
700.5423.
2. A parent may create an OBRA 93 trust for a child who is disabled. However, a parent who is not a
guardian or conservator generally may not exercise legal control over assets belonging to an adult
child to create an irrevocable trust and commit the child's assets to it. There is no reason for a parent
to use his or her own assets to create an OBRA trust under most circumstances, for reasons
previously discussed. Perhaps there are circumstances under which a parent would want to create
an OBRA 93 trust for a child, but absent assets that are jointly
12-15
06 Supp.
§ 12.22
owned by parent and child, there are not a lot of circumstances wherein a parent would properly
transfer a child's assets into an OBRA 93 trust. With court approval, this problem disappears.
3. An OBRA 93 trust requires that trust assets remaining on the death of the beneficiary be paid to the
State of Michigan or any other state that provides Medicaid benefits during the existence of the
trust. This specific disposition of trust assets may have an adverse impact on the intestate or other
rights of heirs and creditors of the beneficiary.. For this simple reason, court protection of the
conservator is obtained by seeking approval of the trust.
D. Disposition on the Death of the Beneficiary
§12.22 Under Exception A, trust assets must first be paid to the state or states that have provided
Medicaid benefits to the beneficiary. The repayment provision is mandatory. The trust instrument
must require repayment regardless of whether a state files a claim or lien against trust assets. The
state's claim must have priority over all other debts and expenses except those given higher priority by
law. See PEM Item 401, at 5-7. However, once the state is fully repaid, there is no impediment to
distributing any remaining assets to family members or to some other named beneficiary. During 2000,
the Social Security Administration adopted the position that an OBRA 93, Exception A trust, which did
not name a specific beneficiary after the required repayment provision to the state, constituted a
revocable grantor trust under Michigan law. As such, the trust was available for the support of the
beneficiary and adversely affected the beneficiary's eligibility for SSI. Of course this administrative
opinion ignored the clear language of the trust that prohibited modification with respect to those
provisions that qualified the trust as an Exception A trust. The opinion also ignored the fact that
Michigan law permits the creation of Exception A trusts and excludes them as countable for Medicaid
purposes.
In late 2001, the SSA changed its position on this legal issue with regard to trusts created in Michigan.
Under present SSA policy resulting from federal litigation, OBRA 93 trusts are permitted to name the
beneficiary's estate or intestate heirs as remaindermen following the death of the beneficiary.
Nevertheless, the Exception A beneficiary should not be given a power of appointment regardless
of where the remainder interest will pass. The trust may name a specific person or entity to take upon
the death of the primary beneficiary and following the repayment of the Medicaid super-priority lien.
Exception C trusts do not encounter the issue of remainder beneficiaries because the nonprofit agency
share constitutes the remainder interest.
The planner considering the use of an Exception A trust should also bear in mind that the
repayment provisions apply only to assets remaining in the trust at the time of the death of the beneficiary;
there is no requirement that assets actually remain. The trust may be exhausted for the benefit of the
person with the disability during his or her lifetime, and OBRA 93 will be satisfied.
Under Exception C, the trust assets are paid to the nonprofit organization in conformance with
a pooled account agreement. Exception C is attractive when there is little likelihood that trust assets would
remain after the payment of the Medicaid super-priority debt. Under Exception C, the trust assets remain
"in circulation" to assist other persons being served by the nonprofit organization. However, it should
be noted that the nonprofit organization is the trustee and is also a remainder beneficiary. Care should be
taken to assure that this conflict of interest is understood before the irrevocable transfer of assets to the
trust. Finally, although an Exception C trust might seem attractive because a nonprofit organization and
the people that it serves benefit, some parents will balk at relinquishing control over the assets to an
organization, whether or not it is nonprofit. Parents can be trustee under an Exception A trust but not
under an Exception C trust.
06 Supp.
12-16
Amenities Trusts
§12.24
VI. "Solely for the Benefit of' Trust
A. In General
§12.23 Another trust arrangement that practitioners need to be familiar with is the "solely for
the benefit of trust. This type of trust is created "solely for the benefit of a person who is disabled under
federal law (and Medicaid regulations, specifically PEM Item 260) and is in the amenities trust format.
A distinguishing feature of the "sole benefit" trust is that the transfer of assets to it, generally by a
parent, is used to qualify the parent for Medicaid without disqualifying the person with a disability or
mental illness.
"Transfers to the client's blind or disabled (see PEM 260) child, regardless of the child's age or
marital status, are not divestment. This includes transfers to a trust established 'SOLELY FOR THE
BENEFIT OF' the child." PEM 405, p 7. Also, "Transfers to a trust established 'SOLELY FOR THE
BENEFIT OF' a disabled (PEM 260) person under age 65 are not divestment." Id.
In other words, a parent who is heading into long term care and who may need to qualify for Medicaid
can create a trust that is solely for the benefit of their child with disabilities or mental illness and can fund
the trust during the parent's lifetime. The transfer of the parent's assets to the trust is not a divestment
subject to a look back with respect to the parent's Medicaid application. The assets are transferred to
the trust and are removed from the parent's countable assets.
As a result, the parent becomes immediately eligible for medical assistance assuming there are no
other disqualifying assets and all other criteria are met. The beneficiary of the trust need not count the
trust assets and, assuming that the trust is properly drafted and expenditures are handled correctly by the
trustee, the income that the trust generates is not countable as well.
B. Requirements
§12.24 The conditions for a trust solely for the benefit of a person with a disability are stated in
PEM Item 405, p 8:
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The arrangement must be in writing and legally binding on the parties.
The arrangement must ensure that none of the resources can be used for someone else during the
person's lifetime, except for "Trustee Fees."
The arrangement must require that the resources be spent for the person on an actuarially sound
basis. This means that spending must be at a rate that will use up all the resources during the
person's lifetime.
Sole Benefit trusts are commonly used in Medicaid planning in addition to planning for the wellbeing of persons with disabilities or mental illness. The use of such trusts in the elder law—planning
context is generally beyond scope of discussion in this chapter. However, the "sole benefit" trust can be a
very effective tool to fund a trust for a child with disabilities or mental illness during the lifetime of
the parent when the parent's estate is at risk of depletion due to the parent's medical and long-term care
needs.
12-17
06 Supp.
Form 12.1
Form 12.1
1.1 Amenities. Trust For Person with Disability. The following provisions will control the
administration of the amenities trust for [person with disability] .
1.1.1 Specific Instructions, Limitations. [Trustee] will, in its sole and uncontrolled discretion, expend
so much of the income and principal of this trust for the sole benefit of [person with disability] as [trustee]
deems to be in the beneficiary's best interest. Expenditures may include but are not strictly limited to the
purchase of furnishings, payment of costs related to entertainment, nonreimbursed dental and medical
expenses, travel/vacations, transportation, enrichment classes or lessons, periodic evaluation of the living
conditions of the beneficiary by [trustee], direct services billed to the trust by the provider or through an
agency that may contract for or employ a person providing direct services to the beneficiary and such other
amenities as are not available to [person with disability] from any other source. [Trustee] is authorized to
hire a consultant to provide information to [trustee] concerning the needs of the beneficiary with respect to
expenditures under this paragraph.
It is [grantor] 's express intention that neither the income nor the principal of this trust will be used for
the food or shelter of [person with disability]. This is a trust for amenities only; distributions are wholly
within the discretion of [trustee] but will not be made for the "support" of the beneficiary.
1.1.2 Power to Accumulate Income. No payments of income or principal, other than small amounts of
income advanced for incidentals, are to be made directly to [person with disability] . Any income not
expended by [trustee] for the purchase of amenities will be added to principal from time to time and
reinvested by [trustee]. [Trustee] is expressly authorized to accumulate income.
1.1.3 Advisor. To the extent that it is practical, [sibling] is requested to serve as the advisor to the
successor trustee. The advisor is requested to monitor the beneficiary's needs at such time or times as it is
practical to do so and to advise [trustee] directly if the need for expenditure of funds arises. [Trustee] is not
required to consult with the advisor on every decision concerning the expenditure of funds. [Trustee] is
expressly authorized to reimburse the advisor for any expense reasonably incurred in monitoring the needs
of the beneficiary and in providing information to [trustee] concerning those needs. In the event of a
disagreement between [trustee] and the advisor, the decision of [trustee] will be final.
1.2 Death of Person with Disability. At the death of the beneficiary, [person with disability], this
trust will terminate. [Trustee] may pay the reasonable burial and funeral expenses of [person with
disability], in [trustee] 's discretion. The remaining trust assets will be divided into shares, and distributed
among [the surviving siblings of the beneficiary and/or The Arc Michigan / the National Alliance for the
Mentally Ill /some other charity].
06 Supp.
12-18
Amenities Trusts
Form 12.2
Form 12.2
1.3 Limitation on Funding Amenities Trust. Notwithstanding the preceding provisions of this
article (concerning funding this amenities trust, ("Trust A"), in a specific pecuniary amount, e.g.,
$150,000), if an amenities trust has been created and funded (or will be fully funded on [grantor] 's
death) through a trust created by [grantor's spouse], ("Trust B"), and if Trust B will be administered at
the time of or following the death of [grantor], and if Trust B has or will have assets having a value
equivalent to the value of the allocation to Trust A (the trust created for the benefit of [person with
disability]), the distribution of assets to Trust A will not occur. If Trust B will be administered
following [grantor] 's death but if the principal and accumulated income of Trust B is less than the
value of the allocation to Trust A, as described in this article, [Trust A trustee] will allocate assets
sufficient to increase the value of Trust B to the value of the allocation described in this article. The share
created will be transferred to [Trust B trustee] to be administered in conformance with its terms and
conditions.
Alternatively, [Trust A trustee] is authorized to receive assets from [Trust B trustee] and to
administer those assets in conformance with the provisions of Trust A. For purposes of clarification, the
[grantor] intends that one amenities trust be created and funded either as a part of the grantor's credit
shelter trust as Trust A or as a part of the grantor's spouse's credit shelter trust as Trust B.
12-19
06 Supp.
Form 12.3
Form 12.3
1.
DECLARATION OF TRUST
This trust is made and approved by an order entered by the [court] on [date] in the matter of [person
with disability] , who currently resides at [street address], [city], [county], [state], through [his /her]
mother, designated by the court, as "grantor" and initial trustee named in this trust agreement.
A TRUST IS DECLARED AND CREATED AS FOLLOWS
ARTICLE 1: PROVISIONS DURING THE LIFETIME OF
[PERSON WITH DISABILITY]
2.1 General Authority. See form 12.1 (Amenities Trust for Person with Disability).
2.2 Trust Is Unmodifiable with Respect to Certain Provisions. The trust created pursuant to
this agreement cannot be modified with respect to those provisions that qualify the trust as an Exception A
Trust under OBRA 1993. 42 USC 1396p(d)(4)(A).
2.3 Specific Instructions, Limitations. See form 12.1. 2.5
Power to Accumulate Income. See form 12.1.
2.6 Death of Person with Disability. At the death of [person with disability] , this trust will
terminate. [Trustee] will pay so much of the principal and accumulated income of the trust to the State of
Michigan (or any other state) as may then be required to reimburse the State of Michigan (or any
other state) for any and all Medicaid benefits paid to or on behalf of the beneficiary from the date of
the creation of this trust to and including the last date that the State of Michigan has then expended
Medicaid funds to or for the benefit of [person with disability]. [Trustee] will determine the extent of
Medicaid payments made to or on behalf of the beneficiary in conjunction with the appropriate agency of
the State of Michigan. The State of Michigan will be entitled to reimbursement for Medicaid payments
regardless of whether it has filed a lien against this trust. If [person with disability] receives Medicaid
payments or benefits in any other state in which [he / she] may reside during [his / her] lifetime, the
obligation to repay benefits in this agreement will apply to those benefits received in any other state or
states. The remaining trust assets will be divided into three equal shares. One share will be distributed to
the living siblings of the beneficiary in equal subshares; one share will be distributed to The Arc
Michigan to be used for advocacy purposes to benefit people with developmental disabilities; and one
share will be distributed to AMI of Michigan to be used for advocacy purposes to benefit people with
mental illness.
06 Supp.
12-20
Amenities Trusts
Exhibit 12.1
Exhibit 12.1
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A List of Amenities
acupuncture/acupressure
advocacy
appliances (TV, VCR, stereo, microwave, stove, refrigerator, washer/dryer)
bottled water
bus pass/public transportation fees
clubs and club dues (record clubs, book clubs, health clubs, service clubs)
computer (hardware, software, programs, Internet service)
courses or classes (academic or recreational)
curtains, blinds, drapes
dry cleaning and laundry services
elective surgery
fitness equipment
furniture, home furnishings
gasoline for automobile
haircuts/salon services
house cleaning/maid services
insurance (automobile, home, and/or possessions)
linens and towels
massage
musical instruments (including lessons)
nonfood grocery items (laundry soap, bleach, fabric softener, deodorant, dish soap, hand and
body soap, personal hygiene products, paper towels, napkins, Kleenex, toilet paper, any
household cleaning products)
over-the-counter medications (including vitamins or herbs)
personal assistance
pet, pet supplies
physician specialists
private counseling
repair services (appliance, automobile, bicycle, household)
retail store charge accounts (gift stores, craft stores, hardware stores, pet stores)
sporting goods/equipment
taxi cab scrip
tickets to concerts or events (for beneficiary and and accompanying companion)
transportation (automobile, motorcycle, bicycle, moped)
utility bills (telephone, cable TV, electric, heating)
vacation (including paying for a companion to accompany the beneficiary)
This list was compiled by Marsha Rose Katz, formerly of the Washtenaw Association for Community
Advocacy, and was enhanced by Teryl J. McCoy, a paralegal assistant in the Law Office of Joel S. Welber.
12-21
06 Supp.
MICHIGAN REVOCABLE GRANTOR TRUSTS, SECOND EDITION
Chapter 12: Amenities Trusts for Individuals with Developmental
Disabilities or Mental Illness
JOSHUA R. FINK
JOEL S. WELBER
© Copyright 2007 The Institute of Continuing Legal Education
Reprinted with Permission
I. Overview
A. Terminology
§12.1 This chapter describes and discusses amenities trusts for individuals with
developmental disabilities or mental illness. The term amenities trust describes a trust
that is designed to supplement benefits that an individual who is disabled or mentally ill
may be entitled to and therefore differs from a basic support trust. An amenities trust is
intended to coexist with means-tested benefits, specifically Supplemental Security
Income (SSI) and Medicaid. An amenity is anything that is not food or shelter and does
not involve a direct distribution of cash to a Medicaid recipient. This chapter describes
when to use such trusts and how to create them. These trusts are an essential part of the
estate planning process for parents who have a child with a developmental disability or
mental illness.
For the practitioner who does not routinely work with families that include
children with developmental disability or mental illness, the name amenities trust may be
confusing as most authors and practitioners refer to the trusts described in this chapter as
special needs trusts, or SNTs. Practitioners should be aware that the term special needs
trust is viewed by parents of children with disability or mental illness as an exclusionary
term that undermines the movement for inclusion led by advocates in this area over the
last three decades. Beginning with the deinstitutionalization of people with
developmental disabilities in the 1970s, advocates have struggled to ensure the inclusion
of people with disabilities in community-based living, in mainstream education, in
employment, in the self-determination of community-based supports, in the maintenance
of legal rights, and in many other areas.
The term special needs highlights the perceived differences between those with
disability and those without disability. The term amenities trust, on the other hand,
accurately describes the purpose of the trust without unnecessarily evoking the condition
that has resulted in the exclusion of those with disability or mental illness.
B. The Use of Trusts for People with Developmental Disabilities or Mental Illness
§12.2 A family that has a child with a developmental disability or mental illness
faces planning challenges that are decidedly different from other families. Early in the
child’s life, parents realize that their child is not likely to attain economic self-sufficiency
through sustained gainful employment. Depending on the severity of the disability,
parents also understand that their child will likely require extensive personal support
simply to engage in the ordinary activities of daily living.
As both children and parents age, parents understand that they will not be able to
provide continuing personal support throughout their child’s entire lifetime. Parents also
realize that the cost of purchasing services required to support their child is well beyond
the means of all but the wealthiest families. Inevitably, most parents conclude that their
child will need to qualify for and receive public benefits to pay for basic yet essential
personal services. These benefits include Social Security Disability Insurance, 42 USC
401 et seq.; Medicare, 42 USC 1395 et seq.; SSI, 42 USC 1381 et seq.; and Medicaid, 42
USC 1396 et seq.
Eligibility for these essential benefits requires the beneficiary to meet strict
income and asset qualifications. Parents of children that receive these benefits are then
faced with trying to maximize the quality of life for their impoverished child. Privately
funded trusts are an important tool in this process. Trusts provide a resource from which
to purchase amenities to enhance the quality of a person’s life without interfering with his
or her access to essential public benefits. Trusts can be useful in developing residential
options for a child and in ensuring that his or her needs are monitored following the
parents’ deaths. Trusts are the private contribution to the financial challenges that
accompany developmental disability or mental illness.
Amenities trusts not only enhance the quality of life for the child but provide the
control, asset protection, and money management parents desire. For reasons similar to
those that motivate parents to place their children’s inheritance in trust until the child
reaches a certain age and expected maturity, a child with a developmental disability or
mental illness cannot be considered a good candidate to receive an outright inheritance.
Parents understand that some person or entity will be needed to administer any
inheritance that the parents expect to leave for their child. Regardless of which public
benefits their child may qualify for, trusts should be used to receive the private funds that
are transferred by parents for the benefit of the child.
C. Understanding the Need to Blend Public Programs with Private Resources
1. The Cost of Personal Assistance
§12.3 The use of amenities trusts for the benefit of people with developmental
disabilities or mental illness is best understood in the context of the living arrangements
provided for these individuals. Historically, if a family had a child with developmental
disabilities, the options for long-term residential care were to (1) keep the child at home
for as long as possible and then move the child in with relatives or (2) place the child in a
state institution. Large state institutions warehoused people with developmental
disabilities. State psychiatric hospitals were used to provide treatment and residential
services to people with mental illness.
People with developmental disabilities or mental illness no longer make their
primary residence in state institutions, psychiatric hospitals, or nursing homes. Michigan
began closing its institutions in the early 1970s, and since then thousands of people have
moved from institutions into group homes or other supported living arrangements in
communities throughout the state. In addition, many adult individuals with
developmental disabilities still reside at home with their parents.
Families who keep their child at home undertake the burden of providing care and
personal assistance for far longer periods of time than families whose children do not
have disabilities. Some families deliberately keep their child at home because the parents
do not want to face losing control over their child to the mental health system that
contracts for group homes and supported independent living arrangements. Other families
have placed their child on a waiting list for group homes or apartments and are awaiting
suitable placement.
Regardless of why a child has remained at home, the reality is that a communitybased placement is almost inevitable unless some other relative undertakes the obligation
of providing care for the child. Parents naturally tend to become incapacitated or die
before their children. For many families, the issue of long-term residential care, outside
of the family home, remains to be addressed.
The private home, the group home, or the supported independent living
arrangement share one common element. These are environments in which a person with
a developmental disability or mental illness is provided with essential personal assistance
by third parties. The amount of personal assistance that an individual requires can vary
from minimal assistance to full-time care. Personal assistance needs are related to
individual cognitive and psychological ability.
When personal assistance is provided by nonfamily third parties, the cost of
staffing personal assistance needs becomes overwhelming at a very modest level of need.
An adult with a high level of cognitive ability who requires only modest support, for
example four or five hours per day, represents a substantial economic challenge to a
family trying to fund his or her needs privately. In fact, many adults with developmental
disabilities require far more personal assistance. Some require assistance 24 hours a day,
365 days a year. The cost of this assistance can exceed $100,000 or more annually if
privately funded. Most parents understand that they are not expected to be the primary
funding source for their child’s personal assistance needs throughout his or her lifetime.
Personal assistance provided in a supported living arrangement outside of the family
residence may be funded through Medicaid. Medicaid is a needs-based program funded
over 50 percent with federal general fund dollars and state matching funds and
administered by the states.
In addition to personal assistance needs, Medicaid is the primary funding source
for a number of additional mental health services provided through community mental
health agencies. These include case management, medical care, some transportationrelated expenses, respite for families providing primary care, specialized equipment,
hospitalization costs in facilities not operated by the State of Michigan Department of
Community Health, and other benefits.
Medicaid has additional value to people with mental illness. Even for individuals
who are capable of living on their own with minimal personal assistance needs, Medicaid
is an invaluable resource because it pays for medication and psychiatric services. People
with chronic mental illness are not likely to earn medical benefits by engaging in
sustained gainful employment, thus Medicaid becomes an irreplaceable source of funds
to pay for these medical necessities. All of the benefits described above are in addition to
the resources required to provide for the food, clothing, and shelter of the individual.
2. Poverty as a Prerequisite for Access to Essential Services
§12.4 Medicaid has evolved into the primary funding source for the personal
assistance and medical needs of people with developmental disabilities and mental
illness. However, Medicaid eligibility is needs based. 42 USC 1396 et seq.; MCL
400.105 et seq. To be Medicaid eligible, a person can have only limited assets and
income. If a person has resources from which he or she may provide for his or her basic
support, eligibility for needs-based benefits is denied.
In 2007, a person with a developmental disability or mental illness who has
nonexempt assets greater than $2,000 is not Medicaid eligible. PEM Item 400, at 4
(Michigan Program Eligibility Manual). The income test is substantially more intricate,
but it is sufficient to point out that unearned income in an amount as little as $30 per
quarter can begin to affect Medicaid eligibility. PEM Item 500, at 4. Medicaid requires
that all income be counted whether or not the income is earned unless the income is
specifically excluded. PEM Item 500, at 1. Until excess countable assets are spent down
or converted to exempt assets, the flow of benefits is jeopardized and the mental health
delivery system is potentially disrupted.
Accordingly, parents who have a child with a developmental disability should
plan to ensure that their child does not have excess resources. At age 18, a person with a
developmental disability or mental illness may qualify for SSI payments. SSI is used to
provide an income stream for an individual who is disabled and does not have “excess”
income or assets. When a person is SSI eligible, he or she is also Medicaid eligible in
Michigan. Advocates advise parents to make certain that their child does not have excess
assets when he or she attains majority, so that SSI and Medicaid can be obtained at the
earliest time.
When mental illness first manifests itself, a process of divestment usually occurs.
Expenditures are made for essential care, medical expenses, and other necessities of life.
An uninsured hospitalization might result in impoverishment, or any other number of
factors or events can culminate in the spend down of life savings. Usually the capacity to
earn sufficient income to sustain an unsubsidized standard of living is impaired by the
mental illness. Once excess assets are exhausted, Medicaid eligibility is attained.
For people with developmental disabilities or mental illness, Medicaid is typically
the sole, credible source of funds for the purchase of personal assistance and medical
necessities. But Medicaid eligibility comes at a big price. The reality, of course, is that
the system by which essential personal assistance, mental health services, and
prescription medication is delivered to people with developmental disabilities or mental
illness requires categorical personal impoverishment as a prerequisite to admission.
Amenities trusts exist in the context of a Medicaid-dependent mental health
system and become a source of private funds to purchase goods and services that enhance
the quality of the beneficiary’s life. These trusts, when included in the parents’ estate
plan, allow parents to provide a meaningful inheritance to their child without disrupting
the flow of benefits that is so critical to a child who requires substantial personal
assistance and medical treatment.
A. Understanding an Amenities Trust in the Context of the Grantor’s Estate Plan
§12.5 The amenities trust is a disposition for the child of the grantor that belongs
alongside the dispositions for other children. There is no need to create a separate,
freestanding trust apart from other dispositions. Generally, the amenities trust is a part of
the family or credit shelter trust in a standard two-trust estate plan. The funding of this
trust will occur following the death of the surviving spouse of the grantor or following
the death of the grantor if there is no surviving spouse.
B. Protection of Medicaid Eligibility
§12.6 First and foremost, amenities trusts protect Medicaid eligibility. Next,
these trusts provide a source of funds to purchase amenities that enhance the quality of
life of the beneficiary without impacting the flow of public benefits in any way. Drafting
the amenities trust requires strict attention to the regulations and caselaw that define what
are countable assets and that the Michigan Department of Human Services (DHS) uses to
determine whether the trust assets or income affect or disqualify the beneficiary from
Medicaid eligibility. The mere existence of a trust is not disqualifying, in and of itself.
The issue in determining eligibility is whether the beneficiary has an ascertainable
interest in trust assets that the beneficiary may direct toward the beneficiary’s needs.
PEM Item 401 states that a trust created with resources of others (e.g., parents in their
estate plan) is an available asset “of the person who is legally able to … [d]irect use of
the trust principal for his needs, or [d]irect that ownership of the principal revert to
himself.” PEM Item 401, at 13. In the absence of this control by the beneficiary, the trust
is not a countable asset. See also Miller v Department of Mental Health, 432 Mich 426,
442 NW2d 617 (1989).
Regarding the income that a trust generates and expends, PEM Item 401, at 13
states, “Count as a person’s unearned income any payment received from the trust.” It is
obvious that this simple description of “unearned income” has significant implications
regarding a trustee’s ability to make a direct distribution of cash to a beneficiary. What
advocates do not necessarily agree on is whether any distribution from the trust except a
direct payment to the beneficiary is not countable. PEM Item 500, at 1, defines income as
“benefits or payments measured in money.” It then states, “Count all income that is NOT
specifically excluded.”Id.
Third-party assistance is specifically excluded as income. “Payment of a person’s
bills by a third party directly to the supplier using the third party’s money is NOT income
to the person.” PEM Item 500, at 32–33. The example used in the PEM illustrates the
point:
Example: Sally’s father, Joe, pays Sally’s rent. Joe uses his own money. Joe does
NOT owe Sally any money. The payment is NOT income to Sally.
PEM Item 500, at 33.
Likewise, in-kind benefits are also excluded. “Exclude as income any gain or
benefit in a form other than money. This includes meals, clothing, home energy, garden
produce and shelter.” PEM Item 500, at 20. PEM Item 500 therefore appears to authorize
trusts to pay for essential needs (food and shelter) in the trustee’s discretion.
For the purposes of SSI, however, it is clear that the trust may not pay for any of
the following basic support obligations of the beneficiary: rent, basic utilities (including
gas, water, electricity, sewer, and garbage removal), mortgage payments, property taxes,
and property insurance if required by the mortgage holder. 20 CFR 416.1120–.1141.
Because the practitioner cannot know what benefits the trust beneficiary will be eligible
for and cannot predict how Medicaid laws may be changed, a conservative approach
restricts the trust from ever paying for basic support, i.e., food and shelter.
C. Defining Amenities
§12.7 Some attorneys attempt to compile a comprehensive list of amenities to
include in the trust instrument. These lists are often accompanied by detailed instructions
to the trustee concerning regular visitation of the beneficiary and similar matters. The
language provided in form 12.1 represents a different approach to the definition and
description of amenities.
An amenity is any good or service that provides a benefit to the beneficiary and is
not prohibited by or disqualifying from Medicaid. Typically, the amenities provided by
an amenities trust include entertainment, travel, clothing, and support services that are not
otherwise paid for. A well-drafted amenities trust provides as much latitude and
flexibility to the trustee as possible, constrained only by the technical restrictions that
accompany Medicaid eligibility. Exhibit 12.1 is a partial list of appropriate expenditures
from an amenities trust.
In addition to purchasing amenities, an amenities trust may be used to purchase a
residence to be occupied by the beneficiary. If the beneficiary pays rent to the trust and
the rent payment constitutes a reasonable share of the expenses of maintaining the home,
it will satisfy the provision that the trust not be used for the shelter of the beneficiary. The
source of the rent payment will generally be either SSI, Social Security Disability
Insurance, or both. Also, roommates (who are acceptable to the beneficiary) might be
used to share the expenses associated with maintaining the house. The amenities trust
may purchase a home in the beneficiary”s name if the beneficiary’s income is sufficient
to pay for the basic utilities, and property taxes. The use of amenities trusts to provide a
residential alternative for the beneficiary is common and benefits both the beneficiary and
the state. See Joel S. Welber, The Use of Trusts to Compliment Essential Governmental
Benefits in Residential-Life Care Planning, 75 Mich BJ 402 (1996).
a. Developmental Disability
§12.8 In an estate plan for a family that has no child with a disability or mental
illness, parents will commonly split their estate equally among their children.
Occasionally one child is favored or disfavored, but fundamentally most parents want to
treat their children equally.
When a family has a child with a developmental disability, the issue of a funding
level for his or her trust becomes important. Some parents are inclined to leave all of their
assets in trust for the child with a developmental disability, even to the exclusion of other
children. Other parents have been advised to disinherit the child with the disability to
avoid interference with needs-based programs, particularly Medicaid. Neither of these
extreme approaches is required to accomplish the goals discussed in this chapter. In fact,
disinheritance in favor of other children may create adverse consequences for the child
with a developmental disability.
An alternative approach is to work backward from the perceived financial need
and to calculate a principal amount required to fund that need. Parents tend to be the best
source for determining the funding level for the amenities trust. Parents are most familiar
with the needs and desires of their children and typically have been spending their own
money to provide amenities to their child. The planner and parents can then calculate the
cost of these amenities and additional needs, such as monitoring services, financial
management, advocacy, and other services that the parents presently provide. This
calculation need not be exact but rather is used as a ballpark figure to be used in funding
the trust. In general, there is no correct or incorrect funding level for amenities trusts. A
child with a developmental disability or mental illness may usually receive an equal share
of the grantor’s estate without creating undue problems because the funding range for
these trusts is quite broad. A trust funded between $100,000 and $500,000 will typically
generate sufficient income to provide adequate amenities to the beneficiary while keeping
the principal intact.
Individuals with developmental disabilities tend to be very modest consumers.
Therefore, the trust should provide that the trustee may accumulate income if there are no
appropriate distributions. At higher funding levels, amenities trusts for people with
developmental disabilities can reach a point of diminishing financial returns. Parents may
be justified in funding this trust at a lower level and diverting the excess assets to other
children. For example, if a family has three children and a net distributable estate of $1.5
million, the child with a developmental disability might not need to have $500,000
funding his or her amenities trust. As a result, parents can favor the other two children by
giving each of them a greater share of the estate without doing any harm whatsoever to
the child with a developmental disability.
Parents whose only child is developmentally disabled or mentally ill face a
different funding question. If the parents wish to leave their total estate for the benefit of
their child, putting all assets into an amenities trust may not make sense. Instead, these
parents may wish to leave the majority of their estate in an unrestricted trust for the
benefit of their child with the remaining assets in an amenities trust that protects the
child’s eligibility for means-tested benefits once the unrestricted trust has been exhausted.
For example, if parents with total assets of $1 million wanted to leave all their assets to
their only child, who has a developmental disability, the parents may choose to fund an
unrestricted trust in the amount of $700,000 and an amenities trust in the amount of
$300,000. The unrestricted trust would be used for the child’s basic support and would
disqualify the child from means-tested benefits but give the trustee greater flexibility to
provide the highest quality support and care for the child. Once the unrestricted trust is
exhausted, the child will again qualify for means-tested benefits and will also benefit
from the $300,000 amenities trust.
b. Mental Illness
§12.9 The funding level that is appropriate for a child with mental illness will
reflect the capabilities of the child. Many children with mental illness drive cars, attend
college or community college, travel, live independently, and manifest needs that are
more intricate than those of people with developmental disabilities. Because the
consumption needs of the child with mental illness can be somewhat similar to those of
their siblings, an equal division of the estate among the grantor’s children is often
appropriate. However, the planner should not be lulled into thinking that the cognitive
ability of the child with mental illness affects the need for an amenities trust. Unless a
child is capable of sustaining long-term gainful employment without reliance on public
benefits, the disposition should always be in trust.
2. Avoiding Double Funding
§12.10 One small problem for the drafter who is not accustomed to funding a
trust in a specific pecuniary amount is that it is possible to double fund an amenities trust.
This is not desirable. The amenities trust is usually a subtrust of the family or credit
shelter trust to be fully funded on the death of the survivor of the grantor and the
grantor’s spouse. Usually the husband’s and wife’s grantor trusts contain mirror-image
language concerning the division of the family or credit shelter trust into shares and the
allocation of the share for the child with a developmental disability or mental illness to
his or her amenities trust.
If a grantor has decided to fund an amenities trust with a specific dollar amount of
assets, for example, $150,000, the problem of double funding arises. At the time of the
first death, a credit shelter trust will receive assets of up to $2 million, which will be more
than enough to fund the pecuniary amount of the amenities trust on the subsequent death
of the grantor’s spouse. However, if the survivor’s trust is not changed, the possibility
exists that a second trust, funded in the amount of $150,000 will be created on the death
of the surviving spouse from the assets in his or her family or credit shelter trust.
Language can be inserted into the trust to avoid this double funding problem. A
sample of that language is contained in form 12.2.
3. Funding at the Death of the Grantor
§12.11 One misconception that is common among parents of a child with a
developmental disability or mental illness is that money has to be allocated to the trust for
this child during the parents’ lifetimes. In reality, there generally is no reason to fund a
trust for this child before funding a disposition to any other child—in other words, at the
time of the parents’ deaths. Obviously, an amenities trust contained in the parents’
grantor trusts cannot receive annual exclusion gifts or other transfers. The creation of a
freestanding amenities trust for the sole purpose of receiving $12,000 or $24,000 gifts is
possible but not common. The main problem with doing this is that the parents cannot act
as trustee, and the size of the trust is too small to justify professional management. Most
parents realize that during their lifetimes their natural inclination is to purchase amenities
for their child and no trust is required for them to do so. Usually parents are relieved to
know that the trust can be funded on their deaths.
E. Trust Instructions—Recognizing the Irrevocable Life Insurance Trust Trap and
Learning to Avoid It
§12.12 There is an almost unacceptable conflict between amenities trusts and
documents that cannot be modified during the lifetime of the grantor. During the past 25
years, substantial changes have occurred in the public’s perception of and approach
toward people with developmental disabilities and mental illness. For example, advocates
have made substantial gains in the development of supported independent living
arrangements for people with considerable cognitive and physical disabilities.
Often, the impetus for change comes from outside of the family and sometimes in
spite of parents’ efforts to find a “secure” placement for a child with an agency or in a
group home. Trust instruments that are inflexible may present an obstacle to lifestyle
changes that are inevitable for people with developmental disabilities and mental illness.
Also, a lack of flexibility might prevent a trust from compliance with a change in
eligibility requirements for needs-based benefits to the detriment of the beneficiary, even
though there have been very few substantive changes in eligibility regulations over the
past two decades.
The irrevocable life insurance trust (ILIT) trap arises in one of two circumstances.
First, a family with wealth decides to create an ILIT to create additional wealth, which is
not subject to federal estate tax. In this context, the estate planner drafts an amenities trust
into the ILIT to be funded on the death of the insured and perhaps his or her spouse.
Unfortunately, this trust is irrevocable. If the trust contains disqualifying language, it
cannot be changed. Even if the trust is a perfectly drafted amenities trust, it might contain
provisions that a subsequent grantor trust would not contain.
One easy solution to this ILIT trap is to give the trustee the right to amend the
trust or name a trust protector for this purpose. Another easy solution is to include the
amenities trust in the grantor’s grantor trust even if the beneficiary with a developmental
disability or mental illness is disinherited from the proceeds of the ILIT. The funding of
the amenities trust can be given priority in the grantor trust if the fear is that there might
not be enough assets to create shares that are equal or fair among all of the children.
Often, families that have the resources to create an ILIT will have sufficient assets to
fully fund an amenities trust from noninsurance sources.
The second potential ILIT trap is less obvious. In recent years, financial planners
have discovered that parents of children with developmental disabilities or mental illness
constitute a fertile market in which to sell planning services and products. These parents
desperately seek assurance that their child will be safe and fully provided for following
their deaths.
Some financial planners espouse the view that a freestanding trust for a child with
a disability should be created separately from the grantor trust used in the estate plan.
They argue that if the grantor requires long-term nursing care, the depletion of the
grantor’s estate could adversely affect the grantor’s ability to provide an inheritance to
the child with a developmental disability or mental illness.
Often, a parent’s concern for his or her child is so great that the parent is induced
to purchase a separate life insurance policy or some other financial product to assure
funding for this freestanding trust. When life insurance is added to an estate, whether it
truly adds value or not, there is a tendency to lock the insurance into an irrevocable trust
to cement the assurance that the death benefit will be available for the beneficiary. The
estate planner is brought into this plan to draft the documents and in essence, to ratify the
plan.
The mere fact that a child has a developmental disability or mental illness does
not justify a purchase of life insurance or the use of an irrevocable trust. Attorneys should
be objective and analyze the estate plan to determine whether the estate will benefit from
the purchase of life insurance or whether parents are being sold a product from which
marginal benefit will be derived.
Sometimes life insurance is an appropriate product to add to an estate to provide
additional funds with which to fund an amenities trust. For example, a young couple with
small children and little savings might benefit from life insurance that can be used to
provide for income replacement or even to fund an amenities trust on the second death.
An older couple who can afford a second-to-die policy might want to add additional
coverage to fund an amenities trust.
In other cases, a family may have more than adequate funds to provide security to
the parents and to fund an amenities trust on the parents’ deaths. If this is true, a child’s
security does not depend on the parents’ willingness to buy a financial product from the
planner. Freestanding trusts funded by life insurance should only be used when the
planner can articulate a clear and credible rationale for such a plan. Moreover, if the
proposal is to use an irrevocable trust, whether funded with life insurance or otherwise,
this option should almost always be avoided, absent some extraordinary circumstance
that justifies this loss of flexibility.
A. The Case for the Corporate Trustee
§12.13 Choosing a trustee is a very important part of the planning process when
a beneficiary has a developmental disability or mental illness. A fiduciary will be
required to manage assets throughout the lifetime of the beneficiary. There will be no
sprinkling of principal and the trust will remain intact as long as assets remain and the
beneficiary is living. The choice of fiduciary may determine the success or failure of the
funded trust. See Joel S. Welber et al., But What Will Happen To My Child? What Is the
Role of the Trustee in the Administration of a Trust for a Beneficiary with
Developmental Disabilities? Trusts & Estates (June 1992).
When the beneficiary is a person with a developmental disability, many parents
lean toward using a sibling or other relative as a trustee. They correctly presume that the
beneficiary’s sibling will be in the best position to know the needs of the beneficiary.
There is also a tendency for parents to want to save fiduciary fees; they perceive, albeit
often without much investigation, that trust company fees will be large and will diminish
the ability of the trust to provide adequate amenities for their child.
Banks are commonly criticized for being too conservative in their investment
philosophy. Based largely on anecdotal evidence, parents will argue that banks are not
good at investing for growth and are slow to distribute income once earned. Some older
parents continue to question the safety of deposits in banking institutions. Among other
things, these parents do not understand that trusts do not constitute general deposits. All
of these factors and others predispose many parents toward a noncorporate fiduciary,
usually a sibling. In spite of these objections, when drafting an amenities trust, a planner
can and should make a case in favor of a corporate fiduciary. The reasons and arguments
that support this case are as follows:
1. A corporate fiduciary provides certainty and stability to the administration of
the trust and will definitely outlive the beneficiary. In many cases, parents simply
assume that the sibling that they want to act as fiduciary will outlive the
beneficiary or that the sibling will remain in the area, never be transferred in his
or her job, or never lose interest. Of course, once these possibilities are raised,
parents begin to understand the benefit of naming a corporate fiduciary.
2. A corporate fiduciary is accountable and insured. Ultimately, a sibling may not
be accountable, as a practical matter. Most beneficiaries with developmental
disabilities are incapable of understanding the nature of the trust arrangement;
many have no comprehension of money. They are certainly not in a position to
protect themselves against trust mismanagement. If trust assets are squandered,
mismanaged, lost to the sibling’s creditors when commingled, or converted by the
sibling, a planner must assume that there will be no recourse. In fact, a beneficiary
with a developmental disability will probably not know that he or she has been
injured.
On the other hand, a corporate trustee is accountable and collectible. A
sibling or guardian can exercise oversight and provide protection for the
beneficiary when a corporate fiduciary is used. This issue needs to be discussed
with parents in the planning process.
3. A corporate fiduciary provides professional money management. Generally,
most people may do an adequate job of investing their own money, but investing
someone else’s money, in trust, requires skills and understanding that many, if not
most, people do not have.
4. The cost of professional management is not a significant consideration when
the beneficiary is a person with a developmental disability. Most corporate fees
are set between 1 and 2 percent of the trust principal, per annum. This fee is
reasonable considering that the assets are professionally invested and that there is
full accountability. Most beneficiaries with developmental disabilities are not
consumers of big-ticket items. Generally, they do not require funds for expensive
houses, cars, vacations, computers, tuition, or other items that trustees are
commonly called on to fund. A conservative investment strategy designed to
produce sufficient income to meet the modest needs of the beneficiary and grow
at the rate of inflation, or better, is well suited for most amenities trusts.
The combination of professional management, accountability, perpetual existence,
and a conservative approach to money management works well for amenities trusts for
people with developmental disabilities. The challenge is to find a corporate trustee who is
willing to manage a fund that may be less than $250,000. One approach to this problem is
to use the same trustee for a substantial number of trusts. Another approach is to use the
trustee as successor for the entire estate plan and to give the trustee the right to settle the
estate. The ability to offer this incentive to the trustee is another reason for folding the
amenities trust into the family or credit shelter portion of the parents’ grantor trust rather
than creating a freestanding document. If large banking institutions continue to combine
and form yet larger, less personal entities, the use of a bank as corporate fiduciary may
diminish. Parents and planners most certainly will balance the positives recited above
with the negatives associated with the large, impersonal organizations that banks are
seemingly becoming.
When the beneficiary is a person with mental illness, parents are far less likely to
hesitate in naming a corporate fiduciary. Many parents do not want to name a sibling as
trustee when the beneficiary has a mental illness because the parents perceive that the
sibling is put in a difficult if not untenable position. Mental illness presents very different
challenges than mental retardation, autism, or other developmental disabilities. People
with mental illness are often quite aware of financial matters; they understand what
money can do for them and they are also acutely aware of their own poverty. A sibling,
charged with the responsibility of a fiduciary, is placed in the unenviable position of
withholding access to trust assets or income from his or her own sibling. The
beneficiary’s reaction to the acts of the sibling trustee can be very damaging to the
relationship between the siblings.
B. The Role of Siblings as Advisors
§12.14 Siblings play a very important role in the operation of the amenities trust.
One very important part of the estate planning process is to make sure that the primary
beneficiary’s needs are closely monitored after the parents’ deaths. Communication
between a corporate fiduciary and a beneficiary with a developmental disability can be
highly problematic. In many cases, an intermediary or advisor is the best answer to the
problem of identification of needs facing the trustee. As previously noted, most parents
assume that a beneficiary’s siblings will be in the best position to know the needs of the
beneficiary.
Even though siblings might not make the best trustees, they are invaluable as
advisors to the corporate fiduciary. Language is provided in form 12.1 that can be used as
a part of the amenities trust to name a sibling or siblings as advisor. Corporate trustees
are very comfortable when interacting with family members. Trustees welcome input
concerning the beneficiary’s needs when there is a developmental disability or mental
illness.
However, a sibling should usually be named as an advisor rather than as a
cotrustee. Naming a sibling as a cotrustee introduces an unnecessary element of
complexity into the relationship between corporate fiduciary and sibling. Siblings do not
need to be consulted about every investment decision that the corporate fiduciary makes.
Usually, a trustee’s expression of a willingness to consult with a sibling as an advisor is
sufficient to address the parents’ concerns about monitoring the beneficiary’s needs.
If the beneficiary has no siblings, language should be inserted into the trust to
permit, if not require, the trustee to hire a person or an agency to regularly monitor the
beneficiary’s needs. The estate planner drafting the amenities trust has to understand that
the communication between the trustee and the beneficiary will be very different in an
amenities trust from other trusts for children. Accordingly, naming advisors or giving
instructions to monitor should be a part of each amenities trust.
C. Testamentary Bequests from Family and Friends
§12.15 Often aunts, uncles, grandparents, cousins, or friends wish to make
testamentary gifts to individuals with developmental disabilities or mental illness. Any
outright inheritance or distribution received by an individual with developmental
disability or mental illness can interfere with that individual’s flow of important meanstested benefits such as SSI and Medicaid. Parents of the child with developmental
disability or mental illness need to advise family and friends that an outright gift or
bequest to their child might cause more problems than benefits. If family and friends
want to provide for the child they should either create their own amenities trust or make
the gift or bequest directly to the child’s parents. However, if a client is aware that a
family member or friend wants to make a present gift to their child with a disability, yet
does not wish to create their own amenities trust, and does not wish to make the gift to
the child’s parents, then a free-standing amenities trust should be considered as a vehicle
to hold such gifts.
A. The Misconception Concerning the Obligation to Repay
§12.16 Amenities trusts are designed to last throughout the lifetime of the
beneficiary. On the death of the beneficiary, an amenities trust can provide for the
payment of reasonable funeral and burial expenses of the beneficiary. Often, this trust is
the primary source of funds for these purposes. The trust should contain provisions for
the disposition of the remaining assets and accumulated income following the payment of
these expenses.
There is no present case law or regulation that precludes giving the beneficiary of
an amenities trust a power of appointment over the disposition of the remaining trust
assets. However, as a practical matter, this is rarely done. The power to dispose of the
remaining trust assets would make a very attractive target for states that engage in estate
recovery. Also, because the beneficiaries are people with developmental disabilities or
mental illness, they may not have the practical ability to exercise such a power and when
they attempt to do so, their capacity is subject to challenge.
Rather than bring the issues of capacity or estate recovery into play, a grantor can
direct the disposition of the trust assets that will remain following the death of the
primary beneficiary. In many cases the primary beneficiary will not have issue surviving,
although this is not always the case. There is a possibility of a generation skip making its
way into this trust, and the drafter should be careful to plan accordingly. Generally,
however, the grantor is likely to dispose of the trust to siblings of the primary beneficiary
(or their descendants).
Contrary to a widely held misbelief, there is no obligation to use the remaining
trust assets to reimburse the State of Michigan for Medicaid benefits received by the
beneficiary during the existence of the trust. The repayment requirement applies only to
OBRA 93 trusts, discussed in §§12.19–12.25. A trust that is not an OBRA 93 trust but
that is drafted to require repayment to the state arguably breaches the applicable standard
of care for drafting amenities trusts. The amenities trusts described above are funded with
the parent’s assets, not the assets of the individual with a developmental disability or
mental illness. Accordingly, the parents may choose how to dispose of their assets on
their death without subjecting them to automatic repayment for Medicaid expenditures.
B. Charitable Opportunities
§12.17 The disposition of the amenities trust provides an opportunity for a
charitable disposition of assets by the grantor. The beneficiary is not given a power of
appointment; generally, there are no surviving issue, and siblings have already received
their shares of the grantor’s estate. The grantor’s most compelling interest, the well-being
of the child with a disability or mental illness, has been addressed. As a result, it is
common for a grantor to use this opportunity to make a charitable disposition to the
entities that have provided care, advocacy, research, or other services that benefit the
person with a development disability or mental illness during his or her lifetime.
V. Powers of Attorney and Guardianships
§12.18 Practitioners engaged in drafting amenities trusts should take the
opportunity to discuss guardianship with their clients. While the amenities trust is the
primary vehicle parents use to plan for the financial well-being of their child with a
developmental disability or mental illness after the parents are gone, the trustee does not
have any legal authority to make decisions regarding living arrangements or care on
behalf of the benefit.
Some parents are able to advocate for and assist their child without any need for a
guardianship and without a power of attorney. In these instances, parents may not
consider the practical consequences of who will have legal standing to act on behalf of
their child when the parents are no longer able to act. Typically, however, when a child
with a developmental disability or mental illness reaches the age of majority (or later with
the onset of mental illness) parents face the prospect of no longer having legal authority
to act on behalf of their children. If the child is in need of assistance in making financial
and care decisions, the parents may initiate some action to obtain the legal authority to
assist in those decisions. The movement for independence and self-determination has lead
many parents of children with developmental disabilities or mental illness to be
vehemently opposed to anyone ever being appointed guardian for their child and to favor
the use of patient advocate designations and durable powers of attorney. Likewise,
Michigan law essentially provides that guardianship over individuals with developmental
disabilities should be considered a last resort. MCL 330.1602. Other parents of children
with developmental disabilities may feel very strongly that they need to be their child’s
guardian.
Regardless, at some point parents will no longer be available to or able to act on
behalf of their child. If no plan is put in place for who should have the authority to act on
behalf of the child with a disability when the parents are unable to act, there is a high
likelihood that authority will be obtained by an individual the parent does not consider
appropriate or in a manner the parent does not agree with. For example, if a parent has
been able to advocate on behalf of his or her child without guardianship and without
power of attorney but has not implemented a succession plan for when the parent dies, on
the death of the parent a relative may think that he or she needs to be named guardian to
act for the individual with a disability.
To avoid such an occurrence, it is important that parents consider a succession
plan. If the child has executed a patient advocate designation and/or a power of attorney,
those documents should include successors in the event of the parent’s death or disability.
If the client is strongly opposed to a guardianship, the practitioner may want to include a
statement to that effect in the will. Such a written statement has no legal authority in a
guardianship proceeding but may be useful to surviving family members when
determining whether to pursue guardianship or to a court in determining whether
guardianship is necessary. On the other hand, if the parent is the child’s guardian, the
practitioner should discuss the naming of a standby guardian or the appointment of a
testamentary guardian in the parent’s will. MCL 330.1642.
VI. OBRA 93 Trusts
A. In General
§12.19 As stated in §12.16, amenities trusts are typically part of a parent’s total
estate plan and are funded with the parent’s assets on the parent’s death. Another
important tool when dealing with families of the developmentally disabled or mentally ill
is the Omnibus Budget Reconciliation Act of 1993 (OBRA 93) trust. In contrast with the
amenities trust funded with the parents assets, OBRA trusts are used to shelter the assets
of the individual with a developmental disability or mental illness while protecting the
individual’s Medicaid eligibility. 42 USC 1396p. These assets are typically in the form of
accounts created for the individual before they reach the age of majority or unexpected
distributions such as inheritances, personal injury settlements, or even lump-sum
payments from the federal government. It is not uncommon for the parents of children
with developmental disabilities to fund accounts in the name of their child while their
child is a minor. Unfortunately, on reaching the age of majority any assets in the name of
the child can interfere with the child’s eligibility for essential benefits. Likewise, any
distribution, inheritance, settlement, or payment that passes directly to the child would
interrupt the flow of public benefits and would add marginal value to the child’s life. The
creation of an appropriate trust to administer and preserve these assets creates additional
potential for the enhancement of the child’s quality of life.
B. Statutory Background
§12.20 In 1993, Congress adopted important provisions concerning Medicaid
trusts as a part of OBRA 93. 42 USC 1396p. A Medicaid trust is a trust created by a
grantor, or by someone acting on behalf of the grantor, using assets countable to the
grantor. PEM Item 401, at 3–7. Usually a transfer into a trust is made in an attempt to
shelter assets and subsequently to qualify for Medicaid benefits. Assets found in
Medicaid trusts are countable, and income generated by the assets is also countable using
Medicaid eligibility criteria.
Congress has created two important exceptions to the Medicaid trust provisions.
These are known as Exception A trusts, 42 USC 1396p(d)(4)(A), and Exception C trusts,
42 USC 1396p(d)(4)(C), and are intended to benefit people who are disabled as defined
under the Social Security Act, 42 USC 1381 et seq. In Michigan’s PEM, Exception C
trusts are referred to as Exception B trusts. However, outside of this one awkward
reference, they are known throughout the estate planning world as Exception C trusts.
Under both Exception A and Exception C, assets may be transferred to a trust for
a person with a disability to create or protect Medicaid eligibility as of the time of the
transfer. This protection permits the uninterrupted flow of benefits if countable assets are
received that would otherwise place an individual over the eligibility limit. However,
OBRA 93 does provide that on the death of the beneficiary of the trust, the trust assets
will be paid either to the state or states that have provided Medicaid benefits (Exception
A) or to a nonprofit that has acted as trustee during the lifetime of the beneficiary
(Exception C). 42 USC 1396p(d)(4)(A), (C).
C. When to Use an OBRA 93 Trust
§12.21 OBRA 93 trusts are used to shelter unexpected lump-sum distributions
received by the person with a developmental disability or mental illness. They are not a
typical part of a parent’s estate plan for a child. OBRA 93 trusts are specifically used to
protect settlements from personal injury cases, receipt of retroactive Social Security
benefits in excess of spendable amounts, matured Uniform Gifts to Minor Act (now
Uniform Transfers to Minors Act) accounts that interfere with Medicaid eligibility and
unexpected inheritances or gifts from relatives that are not put into otherwise properly
funded amenities trusts.
OBRA 93 protects Medicaid eligibility when disqualifying assets are received by
a person with a disability. The substantive provisions of the trust must require that neither
the income nor the principal be available for the support of the beneficiary, otherwise
there will be an impact on ongoing eligibility. In other words, the OBRA 93 trust is an
amenities trust with OBRA qualifying provisions.
D. Technical Requirements
§12.22 Exception A provides that a trust created by the transfer of (otherwise
countable) assets by or on behalf of a person with a disability is not a Medicaid trust if
the following criteria are met:
· The trust must contain the assets of an individual under the age of 65 who is
disabled (as defined in 42 USC 1382c(a)(3)(A))
· the trust must be established by a parent, grandparent, legal guardian, or court
· the trust must specifically authorize that the State will receive all amounts
remaining in the trust on the death of the individual up to an amount equal to the
total medical assistance paid on behalf of the individual. 42 USC 1396p(d)(4)(A).
See form 12.3 for sample language.
An Exception C trust contains similar provisions concerning the transfer of
countable assets to a trust. However, under Exception C, the trustee must be a nonprofit
organization, and the exception contemplates a pooling of assets by people with
disabilities, with separate subaccounts for each subscriber. On the death of the primary
beneficiary, who is the person with a disability, assets that are retained by the trust may
be used for the benefit of others with disabilities. The nonprofit organization that is the
trustee is not required to pay the state unless it relinquishes the assets that remain in the
beneficiaries account.
E. Judicial Approval
§12.23 Technically, OBRA 93 does not require judicial approval for the
establishment of either an Exception A or an Exception C trust. As noted, an Exception A
OBRA 93 trust may be created by the person’s parent, grandparent, guardian/conservator,
or by a court. Under Exception C, the trust may be created by the person himself or
herself, in addition to the persons mentioned above.
As a practical matter, an attorney who participates in the creation of an Exception
A trust may want to obtain probate court approval. There is no requirement under OBRA
for how that court authority is obtained. All that is required is an order by which the court
creates the trust. It is not sufficient to have the court approve the creation of the trust.
Instead, the court must order its creation. Often, this is done by obtaining a single
protective order creating the OBRA 93 trust, pursuant to MCL 700.5401. Alternatively,
seeking an order of the probate court creating the OBRA trust through an ongoing
guardianship or conservatorship matter achieves the same result and may require fewer
court filing fees. If the funds to be placed in the trust are from a personal injury or other
settlement that also requires probate court approval, the practitioner may seek an order
that both approves the settlement and creates the trust.
There are several reasons why court approval should be obtained:
· Although OBRA permits the creation of the trust without court approval, neither
Estates and Protected Individuals Code (EPIC) nor the Mental Health Code
clearly empowers the fiduciary to divert assets of the ward to such a trust without
court approval. Under EPIC, a hearing and determination that a basis for a
protective order exists appears to be mandatory if a trust is being created for a
protected person. See MCL 700.5407(2)(c)(v). Further, under EPIC, a conservator
does not have the express power to create a trust without court approval. MCL
700.5423.
· A parent may create an OBRA 93 trust for a child who is disabled. However, a
parent who is not a guardian or conservator generally may not exercise legal
control over assets belonging to an adult child to create an irrevocable trust and
commit the child’s assets to it. There is no reason for a parent to use his or her
own assets to create an OBRA trust under most circumstances, for reasons
discussed in §12.16. Perhaps there are circumstances under which a parent would
want to create an OBRA 93 trust for a child, but absent assets that are jointly
owned by parent and child, there are few circumstances in which a parent would
properly transfer a child’s assets into an OBRA 93 trust. With court approval, this
problem disappears.
· An OBRA 93 trust requires that trust assets remaining on the death of the
beneficiary be paid to the State of Michigan or any other state that provides
Medicaid benefits during the existence of the trust. This specific disposition of
trust assets may have an adverse impact on the intestate or other rights of heirs
and creditors of the beneficiary. For this simple reason, court protection of the
conservator is obtained by seeking approval of the trust.
F. Disposition on the Death of the Beneficiary
§12.24 Under Exception A, trust assets must first be paid to the state or states
that have provided Medicaid benefits to the beneficiary. The repayment provision is
mandatory and must allow for the repayment of all Medicaid benefits made to or on
behalf of the beneficiary during the beneficiary’s lifetime, even benefits received before
the creation of the trust. The trust instrument must require repayment regardless of
whether a state files a claim or lien against trust assets. The state’s claim must have
priority over all other debts and expenses except those given higher priority by law. See
PEM Item 401, at 5–7. However, once the state is fully repaid, there is no impediment to
distributing any remaining assets to family members or to some other named beneficiary.
During 2000, the Social Security Administration (SSA) adopted the position that
an OBRA 93 Exception A trust that did not name a specific beneficiary after the required
repayment provision to the state constituted a revocable grantor trust under Michigan
law. As such, the trust was available for the support of the beneficiary and adversely
affected the beneficiary’s eligibility for SSI. This administrative opinion ignored the clear
language of the trust that prohibited modification with respect to those provisions that
qualified the trust as an Exception A trust. The opinion also ignored the fact that
Michigan law permits the creation of Exception A trusts and excludes them as countable
for Medicaid purposes. In late 2001, the SSA changed its position on this legal issue with
regard to trusts created in Michigan. Under present SSA policy resulting from federal
litigation, OBRA 93 trusts are permitted to name the beneficiary’s estate or intestate heirs
as remaindermen following the death of the beneficiary.
Nevertheless, the Exception A beneficiary should not be given a power of
appointment regardless of where the remainder interest will pass. The trust may name a
specific person or entity to take upon the death of the primary beneficiary and following
the repayment of the Medicaid super-priority lien. Exception C trusts do not encounter
the issue of remainder beneficiaries because the nonprofit agency share constitutes the
remainder interest.
The planner considering the use of an Exception A trust should also bear in mind
that the repayment provisions apply only to assets remaining in the trust at the time of the
death of the beneficiary; there is no requirement that assets actually remain. The trust
may be exhausted for the benefit of the person with the disability during his or her
lifetime, and OBRA 93 will be satisfied.
Under Exception C, the trust assets are paid to the nonprofit organization in
conformance with a pooled account agreement. Exception C is attractive when there is
little likelihood that trust assets would remain after the payment of the Medicaid superpriority debt. Under Exception C, the trust assets remain “in circulation” to assist other
persons being served by the nonprofit organization. However, it should be noted that the
nonprofit organization is the trustee and is also a remainder beneficiary. Care should be
taken to assure that this conflict of interest is understood before the irrevocable transfer of
assets to the trust. Finally, although an Exception C trust might seem attractive because a
nonprofit organization and the people that it serves benefit, some parents will balk at
relinquishing control over the assets to an organization, whether or not it is nonprofit.
Parents can be trustee under an Exception A trust but not under an Exception C trust.
G. Relationship Between OBRA Exception A Trusts and Amenities Trusts
§12.25 Exception A trusts require that any assets left in the trust at the time of
the death of the beneficiary first go to the state to repay any Medicaid expenditures made
during the beneficiary’s lifetime. Amenities trusts do not have the same requirement. For
this reason, if an individual is the beneficiary of both an Exception A trust and an
amenities trust, the Exception A trust should be the first source of funds used to provide
amenities to the beneficiary.
VII. “Solely for the Benefit of” Trust
A. In General
§12.26 Another trust arrangement that practitioners need to be familiar with is
the “solely for the benefit of” trust. This type of trust is created “solely for the benefit of”
a person who is disabled under federal law (and Medicaid regulations, specifically PEM
Item 260) and is in the amenities trust format. A distinguishing feature of the “sole
benefit” trust is that the transfer of assets to it, generally by a parent, is used to qualify the
parent for Medicaid without disqualifying the person with a disability or mental illness
from also receiving Medicaid.
Transfers to the client’s blind or disabled (see [ PEM Item 260]) child, regardless
of the child’s age or marital status, are not divestment. This includes transfers to a
trust established ‘SOLELY FOR THE BENEFIT OF’ the child.
….
Transfers to a trust established ‘SOLELY FOR THE BENEFIT OF’ a disabled ([
PEM Item 260]) person under age 65 are not divestment.
PEM Item 405, at 7. In other words, a parent who is heading into long-term care and who
may need to qualify for Medicaid may create a trust that is solely for the benefit of his or
her child with disabilities or mental illness and may fund the trust during the parent’s
lifetime. The transfer of the parent’s assets to the trust is not a divestment subject to a
look-back period with respect to the parent’s Medicaid application. The assets are
transferred to the trust and are removed from the parent’s countable assets.
As a result, the parent becomes immediately eligible for medical assistance,
assuming there are no other disqualifying assets and all other criteria are met. The
beneficiary of the trust need not count the trust assets and, assuming that the trust is
properly drafted and expenditures are handled correctly by the trustee, the income that the
trust generates is also not countable.
B. Requirements
§12.27 The conditions for a trust solely for the benefit of a person with a
disability are stated in PEM Item 405, at 8:
· The arrangement must be in writing and legally binding on the parties.
· The arrangement must ensure that none of the resources can be used for
someone else during the person’s lifetime, except for “Trustee Fees.”
· The arrangement must require that the resources be spent for the person on an
actuarially sound basis. This means that spending must be at a rate that will use up
all the resources during the person’s lifetime.
Sole benefit trusts are commonly used in Medicaid planning in addition to
planning for the well-being of persons with disabilities or mental illness. The use of such
trusts in the elder law–planning context is generally beyond the scope of this chapter.
However, the sole benefit trust can be a very effective tool to fund a trust for a child with
disabilities or mental illness during the lifetime of the parent when the parent’s estate is at
risk of depletion due to the parent’s medical and long-term care needs.
Joshua R. Fink is an attorney with Pear Sperling Eggan & Daniels PC, Ann Arbor, Michigan. He
is engaged primarily in estate planning for families with children that have developmental
disabilities or mental illness. A graduate of the Loyola University Chicago School of Law, Mr. Fink
is a member of the State Bar of Michigan and a member of the board of directors for the
Washtenaw Association for Community Advocacy.
Joshua Fink
Pear Sperling Eggan & Daniels, P.C.
Ann Arbor, MI 48105
734-665-4441
Joel S. Welber, formerly of Ann Arbor, Michigan, practices in the area of estate planning. In
addition to his private practice, he is an active real estate developer in the City of Detroit. His
projects include new construction of over 50 town and carriage homes and the renovation of 40
rental units in Midtown Detroit. Mr. Welber recently retired as an associate professor in the
College of Business at Eastern Michigan University, where he taught law and real estate courses
for over 20 years. He served as counsel to the Washtenaw Association for Community Advocacy.
Mr. Welber has published journal articles on specialized estate planning techniques and also
authored a chapter for "Michigan Revocable Grantor Trusts" (ICLE 2d ed).
Form 12.1
1.1 Amenities Trust For Person with Disability. The following provisions will control
the administration of the amenities trust for [person with disability].
1.1.1 Specific Instructions, Limitations. [Trustee] shall use and expend the trust
property for the benefit of [person with disability], at the sole discretion of the [trustee].
The [trustee] is specifically empowered to, but is not required to, make expenditures on
behalf of [person with disability] for goods and services provided to [him/her] by third
party providers. Expenditures may include, but are not strictly limited to, the payment of
expenses for entertainment, travel/vacations (including the costs for a companion, if necessary),
periodic evaluation of the living conditions of the beneficiary by the [trustee] or consultants hired
by the [trustee], including monitoring services that may be available on a contract basis from
entities or individuals, direct services, small items of tangible personal property for personal use
and such other items that are commonly considered “amenities” in the administration of third
party trusts for persons who are or who may become eligible for Medicaid and are not available
to Sarah Klenczar from any other source.
Under no circumstances shall [person with disability] have the power or authority
to demand any distribution from the [trustee], who is under no obligation, implied or
otherwise, to make any distributions to [him/her]. Further, the [trustee] may withhold
distributions to [him/her], if in its sole discretion, they would not be consistent with the
intentions as expressed in this trust agreement. The [trustee] shall not make distributions
that cause the beneficiary to be disqualified from Supplemental Security Income or
Medicaid. The [trustee] shall not make distributions which cause the beneficiary to enter
a Medicaid spend down of excess unearned income. The [trustee] shall attempt to
maximize the benefits that the beneficiary receives from outside sources, including State
and Federal government, without limitation.
If the [trustee] has any questions or concerns regarding issues such as the effect
of unearned income accruing to [person with disability] or the effect of any
disbursement on [his/her] eligibility for a particular governmental or other entitlement
benefit, the [trustee] shall request the advice of knowledgeable counsel, or an advocacy
association to help resolve any difficulties.
It is the [grantor]’s express intention and instruction that the income and
principal of this trust shall be made for the supplemental needs of the beneficiary and not
for [his/her] primary support. This is not a support trust, this is a trust for amenities
only.
1.1.2 Power to Accumulate Income. No payments of income or principal, other than
small amounts of income advanced for incidentals (not to exceed $20.00/month), are to
be made directly to [person with disability]. Any income not expended by [trustee] for
the purchase of amenities will be added to principal from time to time and reinvested by
[trustee]. [Trustee] is expressly authorized to accumulate income.
1.1.3 Advisor. To the extent that it is practical, [sibling or other person designated by
the Grantor] is requested to serve as the advisor to the successor trustee. The advisor is
requested to monitor the beneficiary’s needs at such time or times as it is practical to do
so and to advise [trustee] directly if the need for expenditure of funds arises. [Trustee] is
not required to consult with the advisor on every decision concerning the expenditure of
funds, however, [trustee] is required to provide the Advisor with an annual accounting of
the trust. In the event that an Advisor incurs expense in monitoring the needs of [person
with disability] , the [trustee] is expressly authorized to reimburse the advisor for any
expense reasonably incurred. In the event of a disagreement between [trustee] and the
Advisor, the decision of [trustee] will be final.
1.2 Death of Person with Disability. At the death of the beneficiary, [person with
disability], this trust will terminate. [Trustee] may pay the reasonable burial and funeral
expenses of [person with disability], in [trustee]’s discretion. The remaining trust assets
will be divided into shares, and distributed among [those individuals and/or charities as
designated by the Grantor].
Form 12.2
1.3 Limitation on Funding Amenities Trust. Notwithstanding the preceding provisions of
this article (concerning funding this amenities trust, (“Trust A”), in a specific pecuniary
amount, e.g., $150,000), if an amenities trust has been created and funded (or will be fully
funded on [grantor]’s death) through a trust created by [grantor’s spouse], (“Trust B”),
and if Trust B will be administered at the time of or following the death of [grantor], and if
Trust B has or will have assets having a value equivalent to the value of the allocation to
Trust A (the trust created for the benefit of [person with disability]), the distribution of
assets to Trust A will not occur. If Trust B will be administered following [grantor]’s death
but if the principal and accumulated income of Trust B is less than the value of the
allocation to Trust A, as described in this article, [Trust A trustee] will allocate assets
sufficient to increase the value of Trust B to the value of the allocation described in this
article. The share created will be transferred to [Trust B trustee] to be administered in
conformance with its terms and conditions.
Alternatively, [Trust A trustee] is authorized to receive assets from [Trust B trustee] and
to administer those assets in conformance with the provisions of Trust A. For purposes of
clarification, the [grantor] intends that one amenities trust be created and funded either as a
part of the grantor’s credit shelter trust as Trust A or as a part of the grantor’s spouse’s credit
shelter trust as Trust B.
Form 12.3
1. DECLARATION OF TRUST
This trust is made and approved by an order entered by the [court] on [date] in
the matter of [person with disability], who currently resides at [street address], [city],
[county], [state], through [his / her] mother, designated by the court, as “grantor” and
initial trustee named in this trust agreement.
A TRUST IS DECLARED AND CREATED AS FOLLOWS
ARTICLE 1: PROVISIONS DURING THE LIFETIME OF
[PERSON WITH DISABILITY]
2.1 General Authority. See exhibit 12.1 (Amenities Trust for Person with Disability).
2.2 Trust Is Unmodifiable with Respect to Certain Provisions. The trust created
pursuant to this agreement cannot be modified with respect to those provisions that
qualify the trust as an Exception A Trust under OBRA 1993. 42 USC 1396p(d)(4)(A).
2.3 Specific Instructions, Limitations. See exhibit 12.1.
2.5 Power to Accumulate Income. See exhibit 12.1.
2.6 Death of Person with Disability. At the death of [person with disability], this trust
will terminate. [Trustee] will pay so much of the principal and accumulated income of
the trust to the State of Michigan (or any other state) as may then be required to
reimburse the State of Michigan (or any other state) for any and all Medicaid benefits
paid to or on behalf of the beneficiary to and including the last date that the State of
Michigan has then expended Medicaid funds to or for the benefit of [person with
disability]. [Trustee] will determine the extent of Medicaid payments made to or on
behalf of the beneficiary in conjunction with the appropriate agency of the State of
Michigan. The State of Michigan will be entitled to reimbursement for Medicaid
payments regardless of whether it has filed a lien against this trust. If [person with
disability] receives Medicaid payments or benefits in any other state in which [he / she]
may reside during [his / her] lifetime, the obligation to repay benefits in this agreement
will apply to those benefits received in any other state or states. The remaining trust
assets will be divided into shares and distributed among [those individuals and/or
charities as designated by the Grantor].
Exhibit 12.1
A List of Amenities






















acupuncture/acupressure
advocacy
appliances (TV, VCR, stereo, microwave, stove, refrigerator, washer/dryer)
bottled water
bus pass/public transportation fees
clothing
clubs and club dues (record clubs, book clubs, health clubs, service clubs)
computer (hardware, software, programs, Internet service)
courses or classes (academic or recreational)
curtains, blinds, drapes
dry cleaning and laundry services
elective surgery
fitness equipment
furniture, home furnishings
gasoline for automobile
haircuts/salon services
house cleaning/maid services
insurance (automobile and/or possessions)
linens and towels
massage
musical instruments (including lessons)
nonfood grocery items (laundry soap, bleach, fabric softener, deodorant, dish soap, hand
and body soap, personal hygiene products, paper towels, napkins, Kleenex, toilet paper,
any household cleaning products)
 over-the-counter medications (including vitamins or herbs)
 personal assistance
 pet, pet supplies
 physician specialists
 private counseling
 repair services (appliance, automobile, bicycle, household)
 retail store charge accounts (gift stores, craft stores, hardware stores, pet stores)
 sporting goods/equipment
 taxi cab scrip
 telephone, internet, cable or satellite television
 tickets to concerts or events (for beneficiary and accompanying companion)
 transportation (automobile, motorcycle, bicycle, moped)
 vacation (including paying for a companion to accompany the beneficiary)
___________
This list was adapted from a list compiled by Marsha Rose Katz and with the assistance of the
Washtenaw Association for Community Advocacy.
CHALLENGING INCOMPETENCE
THE MEANING OF SELF-DETERMINATION
Thomas Nerney
The foundation of self-determination for individuals with disabilities in the United States rests on a set of
principles deeply rooted in equality and both civil and human rights. Self-determination starts with the
basic ideas of freedom to design a life plan, authority to control some targeted amount of resources,
support that is organized in highly individual ways and responsibility for both the wise use of public
dollars and the civic obligation to contribute to and be part of one's community. Standing in apparent
contrast to this movement for equality is the legal and ethical basis for guardianship. The formal
stripping away of rights guaranteed by the Constitution and the Bill of Rights presents a formidable
obstacle to the exercise of self-determination at least as it has been articulated since the early 1990s.
(Nerney, Crowley, 1993; Nerney & Shumway, 1996)
The importance of defining the meaning of self-determination and challenging the prejudice against
individuals labeled "incompetent" require us to examine the imposition of guardianship. Guardianship
remains as one of the major obstacles to addressing a new and more dangerous vulnerability that people
with disabilities are now experiencing. "Incompetence" and chronic disability have become the targets
for a new eugenics movement that essentially aims to remove most protections for this population that
were previously guaranteed by law, tradition, religion or common decency. Court sanctioned
classifications of "incompetence" reinforce the already existing societal prejudice against those with
cognitive disabilities. It is important to note that guardianship in and of itself is not the only or sometimes
the major impediment to the exercise of self-determination. However, the imposition of guardianship
reinforces the stigma attached to our society's view of "incompetence". Addressing this issue is part of a
coordinated campaign that needs to be mounted to speak to the newly energized eugenics movement that
has targeted individuals with intellectual disabilities. Explicating the "meaning" of self-determination
may begin to help us develop tools to overcome some of the unwarranted assumptions that lie behind and
beneath these newly animated eugenic arguments.
This essay constitutes an opening dialogue to assist in re-evaluating both the foundation for traditional
notions of guardianship as well as the implications of a legal process that frequently leaves individuals
with disabilities on the margins of society bereft of normal freedoms that all Americans take for granted.
This is not to say that many family members don't seek guardianship as a legitimate way to protect their
sons and daughters, mothers and fathers even, from the vagaries of the present system. Very few
alternatives have been offered to them. For caring family members, guardianship may seem like the only
way loved ones can be protected. Further exacerbating this problem is the fact that only those with
"legal" rights are able to access information and gain standing with representatives of both the public and
private human service sectors. In fact, though, the imposition of the dreaded label "incompetent" only
adds to the vulnerability of individuals with disabilities.
There is, however, another discussion that needs to take place regarding the importance of reforming
guardianship statutes in this country. It has to do with the social, cultural, ethical as well as the legal
implications of deeming someone "incompetent" in this society and the resultant loss of status and value
for the person with a disability.
In the early 1990s, as we began articulating the meaning of self-determination in the first demonstration
project in Southwestern New Hampshire, one of the persons involved with this demonstration had to be
admitted to the local hospital for surgery. This was a woman with significant cognitive and physical
disabilities. Before she even got to a room in the hospital, those accompanying her were presented with a
form that "needed" to be signed. An inquiry was made as to the whereabouts of her guardian. This was
not an admission form. It was a form that appeared to recommend a do-not-resuscitate order be placed in
her record.
We were informed that this was "patient self-determination". We were appalled. Over the next few days
as the hospital administrators kept up their requests, a flow of direct support staff, case managers, agency
administrators, and friends began a steady stream to her bedside. Someone remained with her 24 hours a
day. The room began to fill with flowers and balloons. Soon the hospital desisted. They had come to the
conclusion that this person was not a candidate for a do-not-resuscitate order but, rather, some sort of
VIP.
What happened in that hospital setting is replicated every day throughout the country. It is especially
dangerous for individuals with cognitive disabilities. It is sometimes even more dangerous for those with
guardians especially guardians who do not see them as equal citizens with equal worth.
We were confronted that day with a version of self-determination that contrasted starkly with our vision
of self-determination. While some aspects of patient self-determination overlap with our vision of
self-determination, they are fundamentally different in their history and their foundation. The differences
are important as we begin to wrestle with the meaning of guardianship (as well of our entire human
service system) because contemporary understandings of guardianship have been shaped by a history that
posits "incompetence" as a barrier to the exercise of autonomy or self-determination. Traditional notions
of guardianship are rooted in this history especially as it has unfolded from the ethical and legal
community in the second half of the twentieth century. Our definition of self-determination requires a
reassessment of guardianship as well as a reassessment of traditional service and funding arrangements.
The imposition of guardianship is a civil process that removes the essential liberties guaranteed by our
Constitution and Bill of Rights for vulnerable adults who are deemed "incompetent". For individuals
with cognitive disabilities it is unfortunately a commonplace, even a routine experience.
It must be said, however, that many individuals with cognitive disabilities are vulnerable, subject to
exploitation and sometimes lack adequate understanding in order to make informed decisions and
choices. We can afford neither to underestimate the reality of disability nor to ignore the limitations it
may very well impose.
Therein lies the fundamental tension at the root of the movement toward self-determination for these
individuals. If self-determination posits freedom as a primary principle then this has to be meaningful for
all individuals with disabilities no matter how significant that disability may be. How do we address this
seemingly contradictory set of principles: protecting persons from harm and exploitation and insuring
basic freedoms. The answer cannot be a simple abolition of guardianship that abandons vulnerable
individuals. Nor can we any longer ignore the lasting, stigmatizing effects of the stripping away of basic
freedoms. Besides the important liberty issues presented by the imposition of guardianship there is an
equally important issue that comes with a declaration of "incompetence". Those who are guardians or
who support this transaction need to know the implications for acquiescing to the ethical and legal
ramifications of incompetence.
In accepting the legal and ethical definition of incompetence we may lose sight of the most serious and
sustained attack on people with chronic disabilities in the latter half of the twentieth century. Once we
become aware of these implications we may risk becoming complicit in sustaining ideas that we do not
in fact support.
Background
The imposition of guardianship in our culture results from a finding of incompetence. Incompetence, a
mostly legal term with broad social implications, is almost always a situational assessment. It is
predicated on the notion that a person cannot make an informed decision about a particular task, event or
activity. A person is deemed to not be able to make a particular decision about a medical procedure, e.g.;
or it is determined that a person cannot make any rational decisions. It is an up or down proposition. The
first may result in partial guardianship and the second in plenary or full guardianship.
There are two generally accepted theories of guardianship: "substituted judgment" and "best interest"
decision making. Substituted judgment is usually reserved in ethical theory at least for individuals who
once could make decisions. They may, e.g., have advance directives in the health care arena or the
guardian is required to ascertain what the person might have chosen had they been "competent". Best
interest decision making is usually reserved for children and those who are considered not to ever have
had the competence to make decisions. Individuals with life long cognitive disabilities more frequently
end up in the second category in most contemporary ethical theory. This distinction, however, matters
very little in practice since most guardians receive very little training on their obligations even under
substituted judgment.
COMPETING DEFINITIONS OF AUTONOMY OR
SELF-DETERMINATION
Patient self-determination rests on a legal and bioethical theory of autonomy. The person who is
competent is his or her own moral agent. Only the person can determine what is best or what constitutes
good choices or well being. This theory of autonomy as self-determination rests on the notion that an
individual is competent and can therefore determine what constitutes a good decision. There is some
debate about just how far this notion of autonomy can be taken, but, aside from involuntarily affecting
others, there is general agreement that it remains an ideal organizing principle for many facets of life.
There is of course a lot to be said for understanding the importance of autonomy. It has been a useful tool
in addressing the historic paternalism of the medical profession. It is at the root of the political gains that
women and minority groups have made in the past century when it is understood in its original political
context. It is best known today in the field of medicine and health policy. That said, it rests for many
ethicists and legal experts on a foundation that has proved to be very dangerous for individuals with
disabilities if the political and social context is missing. Autonomy, then, in this discussion, represents
the use that historical interpretations of "reason" and "reasoning" has served throughout Western
philosophy dating back to Plato and Aristotle. It has been used as a pretext to elevate one group, usually
males, from sharing political equality with others, usually women and those occupying lower rungs on
the social scale including slaves.
The dominant school of contemporary ethical theory holds that lack of autonomy or the ability to
self-direct creates a second class of individuals in this society, a class intellectually unable to benefit
from the freedoms guaranteed to all other citizens. The implications have proved to be very costly
indeed. Conversely, autonomy rooted in equality, democratic theory and the political and civic
expression of freedom takes us down another, more positive, road.
The application of autonomy as an isolated principle in the field of medical treatment and human
experimentation is instructive. Where better to understand this issue than in the realm of life and death
decision making.
THE DOWNWARD SPIRAL FROM NUREMBERG
In 1947 nine American judges sat at Nuremberg to judge the Nazi "medical" experiments. They heard
133 days of horrific testimony concerning experiments carried out by some of Germany's leading
scientists and doctors. The world is still repulsed by these lethal and degrading experiments. The judges
at Nuremberg articulated ten standards that were necessary for a medical experiment to be considered
legal or ethical. The first one had to do with the principle of informed consent: voluntary consent was
based on the principle of self-determination and the notion of autonomy. Experiments could not be
carried out without informed consent.
While this may not have been the first articulation of this principle of self-determination, it was and
remains the most famous. It seems especially flawed in one respect. The medical experiments that were
the subject of this trial were so barbaric that no coherent ethical or legal theory could ever sanction the
experiments themselves let alone provide support for anyone to consent to them. Moreover, the judges at
Nuremberg never adequately addressed the murder of well over 200,000 individuals with disabilities and
the sterilization of over 400,000 German citizens. Only recently have historians begun to address the
ambiguity of the Nuremberg prosecutors over this issue and the failure to bring so many major figures to
trial. (Kuhl, Stefan, 1994) This may be because the American experience in the first half of the twentieth
century was marked by the banishment of tens of thousands of individuals with disabilities to public
institutions through state statutes that exceeded in viciousness the Jim Crow segregation statutes of
South. In 1942 the eminent American psychiatrist Foster Kennedy called for initiating in the United
States the same protocol that Hitler used to begin the extermination of people with disabilities in
Germany. (Foster Kennedy, 1942) His words provided the turning point in the debate over the value of
persons with disabilities that once again has surfaced publicly long after the Second World War ended.
Foster Kennedy suggested that it was morally acceptable to "kill with kindness". Kennedy's assessment
of the value of individuals with disabilities represents the nadir of the first eugenics movement in the
twentieth century in this country. It also represents the "new" reasoning that has come to dominate the
field of bioethics today and lies at the heart of a full blown second eugenics movement. It remains
unclear whether the Nuremberg Justices were likely to see the killing of individuals with disabilities as a
crime against humanity.
That said, the ideal of patient or subject self-determination became firmly rooted in the then nascent and
now fully developed field of bioethics. The troubling aspects of this isolationist version of
self-determination become more apparent when we address the issue of individuals with disabilities. This
version of self-determination is now the legal and ethical foundation for physician assisted suicide.
Individuals can decide that their lives no longer have meaning. This is now considered a "right". What
about those who are deemed "incompetent". How do they partake of this new "right"? Court appointed
guardians charged with determining the "best interest" of the person with a cognitive disability are
simply the logical extension of this doctrine. No longer do its proponents have to defend the refusal to
authorize necessary medical treatment for a person with a disability; rather, guardians can be encouraged
under this doctrine to see this as acting in the "best interest" of the person with a disability because they
can now determine that death is a greater good than continued, prolonged disability. It is now considered
an act of "kindness" to relieve someone with a significant disability of his or her very life. Recent and
contemporary discussions both at the beginning of life and at the end of life no longer focus exclusively
on the gray, ethically complex areas that surround decision making for individuals adjudicated
incompetent. In fact, the discussion has moved from relieving the "burden" of disability for the person
with a disability to relieving the burden to society that is associated with the public cost necessary to
support someone with a disability. Furthermore, a lack of "competency" subjects the person with a
disability to greater scrutiny in the allocation of public resources than someone without a cognitive
disability.
That trend is a dangerous one of course. But the history of patient self-determination took another, more
malignant, turn in recent years. The significance of autonomy alone as a foundation for this version of
self-determination has grown in value such that those who are deemed not able to exercise basic
decision-making are now seen as less valuable-less equal than those who can. This flows irrevocably
from the definition of incompetence. The more "incompetent" the less self-determination becomes a
possibility.
THE LOSS OR ABSENCE OF SELF-DETERMINATION OR
AUTONOMY, DEPENDING ON THE SIGNIFICANCE OF A PERSON'S
DISABILITY, THEN BEGINS TO LIMIT THE OBLIGATIONS OF
SOCIETY TO PROVIDE NECESSARY LONG TERM SUPPORTS AND
MEDICAL TREATMENT.
How did the field of bioethics, medicine and law reach what appears to be a general consensus that
individuals with significant disabilities are not equally entitled to society's resources? Contemporary
outrage over the appointment in 1999 of the Australian ethicist, Peter Singer, to an endowed chair at
Princeton University, is simply the latest case in point. Singer has argued that young children, babies
surely, are not fully human and therefore not entitled to the same protections as "real" humans.
Significantly disabled infants, Singer argues, are "non persons" and frequently do not reach the moral
status of certain animals. Many advocates are alarmed by his appointment. Singer's views on the lack of
humanity for newborns with disabilities can be examined as far back as 1979 when he published his text
Practical Ethics and in 1984 when he wrote a "guest editorial" for Pediatrics, the Journal of the American
Academy of Pediatrics. In that editorial he compared significantly disabled children unfavorably with
pigs and dogs. (Singer, 1984). When Singer came to this country after experiencing massive protests in
Europe against his views, The New York Review of Books accorded him a forum, what amounted to an
apologia for euthanasia. Singer titled this long essay "On Being Silenced in Germany" and compared
himself to victims of Nazi oppression. (Singer, 1991) The question remains. From Pediatrics to The New
York Review of Books. Just how far out of the mainstream is Peter Singer?
The attack on the value, the very humanity of persons with disabilities, the perceived lack of quality in
their lives, their lack of humanness even, and, finally, their "prohibitive" cost to society, is recorded in
the peer reviewed medical and ethical literature since the 1970s. The first important article in the peer
reviewed medical literature began with physicians describing why they would not or did not treat certain
infants based on "quality of life" considerations. Drs. Duff and Campbell were among the first and
among the first to utilize the services of three of the most prestigious medical journals in the country:
Pediatrics, the Journal of the American academy of Pediatrics, JAMA, the Journal of the American
Medical Association and The New England Journal of Medicine. (Duff & Campbell, 1973) There are
several milestones in this literature that highlight this downward spiral.
University of Kansas Professor, Rutherford Turnbull, chronicled this literature through 1988 for the US
Civil Rights Commission. (Medical Discrimination Against Children with Disabilities, 1989). The
citations from the literature and the testimony of doctors and ethicists number in the hundreds. It was
during the period of the 1980s that the discussion moved from subjective "quality of life" arguments in
favor of denying treatment to individuals with disabilities to social and cost related arguments.
In the aftermath of the celebrated Indiana "baby doe" case of 1983, where an infant with Down syndrome
was "allowed" to starve to death, Dr. Walter Owens, the physician in attendance during the death of this
child, testified:
In an ideal society, one might say we should consider only the welfare of the child, but this is not an ideal
world and we do not have unlimited resources Money which is spent and we're talking of many times
$100,000 or $500,000 or even one million dollars spent on these children that is money that is not
available for the education of normal children. (Walter Owens, M. D., 1986)
The experiment on children born with spina bifida at Oklahoma Children's Memorial Hospital was the
most infamous. (Gross, Cox, Tatyrek, Pollay, and Barnes, 1983) Here, Dr. Gross and his colleagues
reported that during the years 1977 to 1981, 33 infants born with spina bifida were selected for "non
treatment". Of those for whom no objection was made, all died. The medical staff who conducted this
"study" used a formula based on the potential financial contribution of family and society to the care of
these children. Not unexpectedly, the children selected for death were poor. When Pulitzer Prize winning
reporter, Carlton Sherwood, did a three part series for CNN in 1985 there was a brief public outcry.
Carlton Sherwood had captured on camera a young black baby with a bubble on his back the size of a
basketball. His mother, who was a single parent and on welfare, was counseled to give up her son. He
was the latest child selected for non-treatment. The hospital and doctors resisted the entreaties of a nurse
who begged for the operation needed and even offered to adopt the child. The National Right to Life
Committee and the American Civil Liberties Union actually joined together in an action to sue the
doctors and the hospital. It failed and this coalition predictably fell apart. The lead doctor in this macabre
demonstration soon left for a position on the faculty of the Harvard Medical school and the nurse who
exposed the behavior of the doctors to CNN was dismissed and prevented from working as a nurse again.
On the heels of this publication came the recommendation of prestigious group of doctors associated
with the Brown University Medical School. (Walker, Feldman, Vohr & Oh, 1984) Several doctors at the
Brown University Medical School published an article in Pediatrics the following year that purportedly
did a cost benefit analysis of low birth weight infants-247 infants who weighed between 500 grams and
999 grams at birth. Of all those followed for one to five years, most, 74%, were unimpaired or minimally
impaired and 10% moderately impaired. What conclusion did they draw? Since they had determined that
16% would or did have "severe handicaps" none of the children in this birth weight category should be
treated! Why? Their costs were too much for society to bear. Perfectly healthy children should be
sacrificed so that society may relieve itself of the cost for a small minority.
Professor Turnbull in his research for the Civil Rights Commission came to the conclusion that lurking in
the background of this kind of conduct was the spoken and unspoken bias against intellectual disability.
The relevance of the cases and the literature surrounding disability issues at birth go right to the heart of
the social prejudice against individuals with disabilities. Parents are almost always asked to act in the
best interest of their children and are seen as their natural guardians. This is almost always positive.
However, when the information provided to them is erroneous or biased, they may be led to decision
making that more often than not conforms to this prejudice.
It was in April 1988 that Richard John Neuhaus, then Director of The Rockford Institute Center on
Religion and Society, wrote about the return of eugenics:
Thousands of medical ethicists and bioethicists, as they are called, professionally guide the
unthinkable on its passage through the debatable, on its way to becoming the justifiable until
it is finally established as the unexceptional. Those who pause too long to ponder troubling
questions along the way are likely to be told that "the profession has already passed that
point." In truth, the profession is usually huffing and puffing to catch up with what is
already being done without its moral blessing. (Neuhaus, 1988)
Buchanan and Brock's widely used text, Deciding for Others, the Ethics of Surrogate Decision Making, is
now representative of generally accepted ethical and legal theory. (Buchanan and Brock, 1992). In this
book the authors carve out two exceptional classes of individuals with disabilities: the "permanently
unconscious" and the "severely and permanently demented". Neither class rates "personhood". In the first
case society has "minimal interests" in providing care and treatment and in the second case "truncated
interests" in doing so. The authors state:
Nevertheless, especially in the case of incompetent patients who are both unable to express
their own wishes about care and whose debilitation limits the benefits they can receive
from care (emphasis added) there is potential for the cost of care to loom large in decision
making.
After serious examination of the issue of whether there is any general right to treatment (usually limited
to medical treatment) for anyone, competent or not, the authors conclude that there is not. Patient
self-determination is meant to create solely a right to refuse treatment and never a right to demand it.
They continue then with their analysis:
Thus, when the incapacities that result in incompetence also reduce the benefits an
incompetent patient can obtain from a given treatment, care may not be warranted that
would be provided to competent patients as a matter of entitlement of individual right.
The authors go on to say that "the severely demented are even worse off than animals such as dogs and
horses". Shades of Peter Singer.
In the 1990s when we were early on articulating the meaning and the implications of self-determination
we came upon Sean. Sean was in a terrible auto accident and was wasting away first in a rehabilitation
hospital and then a nursing home in a neighboring state. We administered the Medicaid waiver for
acquired brain injury but simply did not have enough dollars to bring Sean home to his own community.
Sean needed total care and was in a coma still after five years. The doctors called it a "persistent
vegetative state". His mom and dad wanted him back because they recognized that the professionals had
given up on their son.
We sat down with Sean's parents and simply said that we would put all of the money at our disposal
under their control if we could figure out a way to bring Sean home. They immediately went out and
secured a house, interviewed his high school friends for assistance and set up a network of individuals
committed to Sean and whatever "recovery" might mean for him. Today a national brain injury group is
making a movie of Sean's and his family and friends efforts. Sean and his mom and dad travel around the
country giving presentations on self-determination. Sean is making eye contact and initial verbalizations.
Sean's dad one day articulated the danger he felt for his son. He simply said "How long will this society
think my son important enough to continue this level of support?"
Once individuals get reduced to a status where personal autonomy or self-determination is not "possible",
they may lose their moral claim on our resources. Contemporary ethicists like the authors above make
this claim on the principle of distributive justice. Distributive justice underlies our progressive tax
system, e.g., and simply calls for sharing resources in ways that approximate fairness. Distributive justice
has been the cornerstone upon which we argued for resources for the most vulnerable. Contemporary
ethical theory has now turned this principle on its head. Because we live in times of scarce resources,
especially medical and long term care resources, those who can "benefit" the least (read those with
significant disabilities) may end up having the lowest moral claim on these resources.
During the 1990s the discussion has intensified. Readers may remember the story of Sandra Jensen, the
California woman with Down syndrome who needed a heart transplant. It was no mystery why she never
made it onto a list of individuals for whom a heart transplant might become available. Only a large and
public national outcry by her friends finally made it possible for her to receive the heart transplant.
During the last decade of this century Richard John Neuhaus's words have become prophetic. Chronic
disability, and, especially "incompetence" associated with disability, has now created a duty to die. The
Hastings Center Report regularly brings us new and disturbing articles advancing an agenda largely
created by the new utilitarian ethics. Even the more thoughtful individuals associated with the Hastings
Center, such as Daniel Callahan, its Director, have modified their views on important ethical issues
surrounding individuals with disabilities in the last 15 years. In 1983 Callahan wrote forcefully against
the idea of ever withdrawing food and water. He said " The feeding of the hungry, whether because they
are poor or because they are physically unable to feed themselves, is the most fundamental of all human
relationships. It is the perfect symbol of the fact that human life is inescapably social and communal."
(Callahan, 1983) Less than four years after publication Callahan changed his mind. He then published his
book "Setting Limits: Medical Goals in an aging Society". (Callahan, 1988) In this book he seeks to set
out some principles that will help us establish limits on providing care based on a new social expectation
that there is a "natural life span". In his review of the book, the American philosopher, Sidney Hook,
takes Callahan to task for not going far enough. (Hook, 1988) Callahan's most recent contribution to a
discussion of these issues has been to coin the term "the biologically tenuous" in order to assist us in
discussing the rationing of medical and long term care for individuals who have reached the age of 85.
Rationing itself is still a topic that receives little attention. Irene Wielawski, a journalist who writes on
health care issues, calls it "One of the most troubling and least talked-about-issues in health care: the
rationing of medical care not by need but by the wealth of the patient." (Wielawski, 1999) The pressures
to limit care are familiar in the context of the current managed care debate. The "ethical" community
would seem an unlikely ally.
Arthur Caplan, who writes extensively on ethical questions, is one of the few to challenge the issue of the
actual cost associated with caring for individuals at the end of life. The common wisdom is to associate
the burgeoning costs of Medicare to the high cost associated with end of life care. He says "Sadly, the
movement to encourage the use of living wills has as much to do with hopes for cost containment as it
does with self-determination." (Caplan, 1993) While Caplan seems not to understand the communal role
in self-determination, he did have the temerity to report on the data from the Health Care Financing
Administration for Medicare expenditures from 1976 through 1988. Those in their last year of life
accounted for 28.2 percent of Medicare expenditures in 1978 and in 1988 the number was 28.6 percent.
Ironically, the older the patient got the smaller the cost to the Medicare program.
In 1997 John Hardwig wrote "Given our society's reluctance to permit physicians, let alone family
members, to perform aid-in-dying, I believe I may well have a duty to end my life when I can see mental
incapacity on the horizon." He went on to say:
Many people were outraged when Richard Lamm (former Governor of Colorado) claimed
that old people had a duty to die. Modern medicine and an individualistic culture have
seduced many to feel that they have a right to health care and a right to live, despite the
burdens and costs to our families and society. But in fact there are circumstances when we
have a duty to die. As modern medicine continues to save more of us from acute illnesses, it
also delivers more of us over to chronic illnesses, allowing us to survive far longer than we
can take care of ourselves. It may be that our technological sophistication coupled with a
commitment to our loved ones generates a fairly widespread duty to die. (Hardwig, 1997)
Dr. Bob Edwards, the renowned embryologist who was part of the team that helped produce the first
baby born using in vitro fertilization spoke at the annual meeting of the European Society of Human
Reproduction and Embryology in France of this year. According to the July 4, 1999, Times of London,
he said that "Soon it will be a sin for parents to have a child that carries the heavy burden of genetic
disease. We are entering a world where we have to consider the quality of our children."
A duty to die and a duty not to be born. We have indeed entered a brave new world.
In the field of law, medicine and ethics the issue has been essentially settled. Those with significant
disabilities, especially those with significant cognitive disabilities, have lost a substantial claim on our
resources within this elite community. Peter Singer and Jack Kevorkian are simply the popular and media
savvy proponents of a theory that is becoming all too acceptable.
What may be necessary is to examine current notions of incompetence, significant disability and
distributive justice. The notion of autonomy alone as a foundation for self-determination, if it ever held
any promise, has failed the test of equality, equal citizenship and community. Amid conflicting data, the
call for withdrawal of resources has reached a critical juncture.
To be sure, many parents seize upon guardianship as a way to protect their sons and daughters from the
very dangers outlined above. In some states, unless you are a guardian you cannot obtain vital
information and records needed to advocate for a person with a disability. However, the other side of the
guardianship coin remains clear: thousands of individuals with disabilities across the country live with do
not resuscitate orders; thousands more are confined to institutions. Most under the direction of a court
appointed guardian or corporate guardian. This is illustrated in aspects of the current Connecticut
institutional case, Messier Vs State of CT. In dispute is not only the issue of a corporate guardian
prerogative to institutionalize an individual with a disability but the role of guardians in imposing do not
resuscitate orders both at the institution and at nursing homes. A judicial finding of incompetence can
result in real protection for some and death or banishment for others. We need to reassess our traditional
commitment to guardianship and begin the arduous task of collecting more data on the dimensions of this
problem.
Equality as a Foundation for Self-Determination
The notion of informed consent was at the heart of the American Revolution. In our founding documents
a theory of equality was enunciated that grounded equal rights as the centerpiece of a political
philosophy, albeit one that has taken over two hundred years to become applicable to all Americans. The
last groups surely are those who are routinely stripped of their citizenship in the name of providing help
or, as it turns out, in the name of denying necessary medical and long term supports. It is unclear how
depriving individuals of constitutional protections can be truly helpful in the long term and in the face of
this onslaught from the newly energized bioethics community, an attack no different in substance than
the one mounted by the eugenics movement in the early decades of this century.
A NEW LEGAL AND ETHICAL FOUNDATION
Self-Determination as it is articulated under the rubric of equality, begins with freedom, includes
responsibility, and forces us to grapple with the meaning of freedom for those who need assistance in
exercising this right. Self-Determination grounded anywhere outside the Constitution and the Bill of
Rights or an international declaration of rights, leads inexorably to a continued diminution of those
rights. Self-Determination grounded even in pedagogy or psychology inevitably leads to "tests" for
self-determination and, hence, we return to the employment of autonomy and skill based curricula as the
last and final examination for meeting the test of citizenship. It will be up to all of us to withdraw our
consent from any theory that increases the vulnerability of individuals with disabilities.
One of the great advances in the field of developmental disability has been the evolution of person
centered planning and increased recognition of the value of all communication--that stemming from
typical and atypical behavior. With this knowledge we can begin to challenge current notions of
competence and incompetence. Person centered planning requires outcomes based on the preferences of
individuals with disabilities. Its implications for challenging incompetency are enormous. The next
logical step is to assert the fact that no one is "incompetent". We need to recognize that many individuals
will need assistance in decision making and that much resistance will arise from challenging accepted,
indeed cherished notions in the field of law, medicine and ethics.
The grounding for this new approach will rest on both the notion of equal citizenship or equality and the
provision of needed supports only from individuals who have a demonstrated commitment to the person
with a disability.
Opposition will mount not only in the field of developmental disabilities but also in the field of aging
where the numbers will be much greater in the next thirty years and the competition for limited resources
will make today's discussion even more critical. We need to adopt a set of short and long term strategies.
Only a new legal and philosophical foundation can lead us out of the morass of the new eugenics.
We have to reject the idea of incompetence as a wholesale inability to exercise rights and decision
making. The Swedish statutes might provide some guidance here. We need to replace it with the idea of
"assisted competence". This will include a range of supports that will enable individuals with cognitive
disabilities to receive assistance in decision making that will preserve their rights secured under law. This
notion of assisted competence will be grounded in the ideal of equality and human rights. Political
equality will become the context for discussing the idea of autonomy. The "self" in self-determination
will be linked by definition to other, trusted individuals both family and friends who remain or become
deeply committed to the individual with a disability.
We need to anchor the supports that individuals need firmly in our communities and focus on the
importance of relationships, meaningful work, community connectedness, the need for intimate
friendships and supports, and the contribution that individuals can and do make to our social and political
life. Supports will be freely chosen with assistance when needed and self-determination will infuse all of
these supports and the duration of these supports. Honoring the principles of self-determination will
begin the process of ending the stigma of "incompetence". This means, among other things, a thorough
re-examination of what currently passes for human services.
Services that isolate people with disabilities from our communities or that involve activities not highly
valued by our culture will have to be replaced. Just as important is the moral imperative to achieve both
equity in public spending as well as efficiency in per person allocations. This will mean that typical
services organized around congregate models must be challenged as well. To the extent that typical
services separate individuals from their communities they will be found wanting. To the extent that
typical services fail the fundamental test of freedom and responsibility they will be superseded by highly
individual supports that honor the wishes and legitimate dreams of folks with disabilities. Expenditures
that exceed what a person needs to live a highly desirable life, because program models dictate them, will
be seen as wasteful.
We need to begin drafting more respectful statutes that provide the assistance individuals may need
without depriving them of basic civil and human rights. We will first end corporate and public types of
guardianships because they do not meet the test of individual and personal commitment, and a shared,
trusting and reciprocally generated relationship. Even under current statutes we need not wait for legal
reform. Policy reform can lead the way. No one should ever be in the role of guardian unless that is
acceptable to the person with a disability. The best interest standard will be replaced by representative
decision making, i.e., the person in this legally assigned role, must do the intensive labor necessary to
ascertain what the person with a disability likes, prefers and dreams. In other words, even under current
statutes, the receipt of public funds can be contingent on the presence of objective evidence that the
person with a disability is experiencing supports and relationships that honor his or her own unique
desires including who provides representative guardianship supports under current statutes.
With this new foundation we can begin to mount an offensive against the utilitarian agenda that is
gradually being adopted in the field of law, medicine and ethics with no input from individuals with
disabilities and their close family and allies. Reforming guardianship is, of course, only one of many
strategies we need to adopt in order to counter this eugenic assault. Guardianship simply provides us with
a starting point that will gradually lead us to reconsider so many other issues including the organization
of current services and supports. There is a new voice that is just beginning to flex its political muscle on
this and other important policy, legal and ethical issues in the field of disability. These are the groups of
self advocates (individuals with disabilities) variously united under "People First". They carry the most
legitimate moral authority to challenge eugenic interpretations of their lives. By creating an equal
political partnership with parents and family members, they remain the only force capable of confronting
this enormous prejudice. They will need many allies. Under this new rubric:
We can explore meaningful alternatives to guardianship. We can reject the notion of incompetence and
replace it with a notion of assisted competence. We need to do this in statute as well and insure that it
becomes more than a rhetorical device.
We can base all of our future work on the notion of political equality and equal rights as central to the
idea of autonomy and self-determination. This may enable us to revisit the idea of distributive justice in
ways that do not discriminate against those with disabilities.
We can insist that all supports provided to individuals with disabilities be based on assisted informed
consent. This means that the system of long term care must change to place control of the dollars directly
under the management of individuals with disabilities and their freely chosen allies. Freely chosen allies
will include family members who advocate for these basic rights, friends, direct support staff who have
reciprocal and trusting relationships as well as a variety of professionals who become committed to this
philosophy.
We can then insist that the entire system of long term care become more equitable and that state
expenditure patterns reflect adoption of the principles of self-determination as they are embodied in the
concepts of freedom and responsibility.
We need to reform the present system simply to address the mythology associated with the historic costs
of long term care-costs associated more with models of congregation-- than individual support. Our
obligation to be "cost effective", while simultaneously increasing the benefit to individuals with
disabilities, will become a moral imperative. The wise and efficient use of public dollars must be
apparent to the wider society and challenge the frequently erroneous or misleading data associated with
the legal and ethical culture.
We will need to thoroughly evaluate our current "services" to insure that they are consistent with roles
that are highly valued in this society. Programs that diminish the stature of individuals with disabilities
will need to be abandoned. Those with conflicts of interest concerning the operation of the current
system will need to be engaged. Opportunities for individuals to contribute to their communities, earn
real income and forge, distinctive, highly meaningful lives for themselves, will become paramount.
Otherwise, the stigma of incompetence will remain as a social weapon to justify the unacceptable.
This new foundation must be based upon equality, shared vulnerability and a deeper sense of community
that we all create in our own distinctive ways. We need, simply, to create a new legal and ethical
foundation for protecting vulnerable adults and children as well as those who care about them without
diminishing their legal or social stature. We will in the process be constructing a more humane system
for all of us as we begin to recognize our own vulnerability. Reform of guardianship and promotion of
self-determination will proceed hand in hand. They are mutually reinforcing.
Yale University legal scholar, Robert A. Burt, long a voice of caution concerning contemporary legal and
ethical theory, in an essay entitled "The Suppressed Legacy of Nuremberg", speaks to the vulnerability
that all of us share as he challenges the isolationist view of autonomy and self-determination: "the
confident assertion of the self-determination right leaves unacknowledged and unanswered a crucial
background question: who can be trusted to care for me when I am too vulnerable and fearful to care for
myself?" (Burt, 1996)
What Burt is doing is simply drawing all of us into the same equation, a shared sense of mutual
vulnerability. In our context it means that we are more alike and vulnerable than we might think. We
share this vulnerability with individuals with disabilities and plainly need to create a society, based on an
ethic if you will, that will make us all comfortable with the ability to put our trust in others (including
those who represent medicine and law) but especially in those with whom we have created enduring
relationships, ordinary community members and, finally, a new force of professionals. We are a long
way from that vision today. Overcoming such a long history of prejudice requires a lifetime of work, the
engagement of political interests, and a new vision of a just society.
NOTES
(Unedited)
Buchanan & Brock, Deciding For Others: The Ethics of Surrogate Decision Making; Cambridge
University Press, 1992.
Burt, Robert A.; The Suppressed Legacy of Nuremberg; Hastings Center Report, September-October,
1996.
Callahan, Hastings Center Report, 1983
Caplan, Arthur, Don't Blame Dying Elderly for Health Care Cost Crisis. News Times, April 28, 1993
Duff & Campbell, Moral and Ethical Dilemmas in the Special Care Nursery, 289 New Eng. J. Med. 890
(1973)
Gross, Cox, Tatyrek, Pollay & Barnes, Early Management and Decision Making for the Treatment of
Myelomeningocele, 72 Pediatrics 450 (1983)
Hardwig Is There a Duty to Die Hastings Center Report 27, no 2 (1997)
Hook, Sidney, The Uses of Death, The New York Review of Books, April, 1988.
Kennedy, The Problem of Social Control of the Congenital Defective, 49 Am. J. Psychiatry 13, 13
(1942)
Kuhl, Stephan The Nazi Connection: Eugenics, American Racism, and German National Socialization
Oxford University Press 1994
The Sunday Times of London, July 4, 1999
Nerney & Crowley, An Affirmation of Community, University of New Hampshire, Institute on
Disability, 1993.
Nerney & Shumway, Beyond Managed Care, Vol. 1, University of New Hampshire, Institute on
Disability, 1996.
Neuhaus, The Return of Eugenics, Commentary, April, 1988
Owens, Walter, MD, in US Civil Rights Commission Report
Singer, Peter; Guest Editorial, Pediatrics, 1984.
Singer, Practical Ethics (1979)
Singer, Peter, On Being Silenced in Germany, The New York Review of Books, April, 1991.
Turnbull, Rutherford in US Civil Rights Commission; Medical Discrimination Against Children with
Disabilities, 1989.
Walker, Feldman, Vohr & OH Pediatrics Cost Benefit Analysis of Neonatal Intensive Care for Infants
Weighing Less Than 1000 Grams at Birth, 74 Pediatrics 20 (1984)
Wielawski, Irene. Rationing Medical Care: The Growing Gulf Between What's Medically Available and
What's Affordable. Advances, Issue 4, 1998, The Robert Wood Johnson Foundation.
Directions for Using the Advance Psychiatric Directive Forms
If you are reading this online, print or download the sections you plan to use.
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How to fill out the forms
Frequently Asked Questions
Forms to Prepare an Advance Psychiatric Directive ( browser-friendly HTML version)
Forms to Prepare an Advance Psychiatric Directive (printer-friendly PDF version)*
* You will need the free Acrobat Reader to view and print the PDF file.
I. How to Fill Out the Forms
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Read each section carefully.
Choose which sections you wish to use. Sections I and VI are required. If you aren't sure whether or not you
want to use section II, appointing an agent, find out if your state's law requires an agent for mental health
decisionmaking. Your state protection and advocacy agency may be able to tell you. Sections III, IV and V
are optional and cover the substance of your instructions.
If you decide to appoint an agent, make sure he or she understands your wishes and is willing to take the
responsibility. Your agent and alternate agent(s) should sign the form to show acceptance of the responsibility.
Talk over your choices with your treating providers and your case manager.
Fill in only the choices you want in sections III, IV and V. Your advance directive should be valid for whatever
part(s) you fill in, as long as it's properly signed. You may cross out and/or write in words or sentences (or
rewrite, if you are editing the document on a computer).
To indicate which choices you want, put your initials in the blank at the beginning of a statement. If you do not
want a statement to be true, leave the blank empty
Add any special instructions in the spaces provided. Be sure you also put your initials in the blank at the
beginning of that segment to make your choices valid. You can write additional instructions or comments on a
separate sheet of paper, but be sure to write on the form that there are additional pages.
Complete the checklist attached to section I to show at a glance what your advance directive covers.
Assemble the completed sections, renumber the pages and sign section VI before two witnesses (see the list on
the signature page of people who cannot be your witness). Some states may require a notary's signature as
well; if you are not sure, it's best to have the document notarized.
Have copies made and give them to your doctor(s), the individual(s) you have appointed to make mental health
care decisions for you, your family and anyone else who might be involved in your care. Explain your choices to
each of them
II. Frequently Asked Questions
Can I change my mind?
You can revise your advance directive at any time unless you have been declared legally incompetent. However, state
laws vary about whether you may revoke your advance directive or overrule your own agent after becoming
incapacitated. Part V spells out some options describing when you want to be able to revoke, suspend or end this
advance directive. A lawyer can explain your state's law in this regard. (Note that only a few states have any specific law
on this. As of 1997, Alaska, Hawaii, Illinois, Maine, Minnesota, North Carolina, Oklahoma, Oregon, South Dakota, Utah
and West Virginia do.)
Should I see a mental health professional before signing an advance directive?
For your advance directive to be valid, you must be legally competent when you sign it. To protect yourself against any
claim that you were not competent when you signed your advance directive, you can ask a mental health professional to
conduct a mental status exam and note in your medical record file that you were of sound mind at the time. Ask for a
signed copy of this note, and attach it to your advance directive. This is not absolutely necessary, but it can head off
future challenges.
What to do when you are finished
You want your advance directive to be an active part of your medical record. It is a good idea to discuss your choices
with your case manager and treating providers. Your advance directive is more likely to be remembered and followed if
you have told them about it and explained to them the choices you made, and why.
When will my advance directive take effect?
Your advance directive will become active, under most states' laws, when a doctor, usually your treating physician,
determines that you are not capable of making health care decisions on your own behalf.
Who should have copies?
Your treating professionals should have copies of your advance directive. Your agent, if you appoint one, and each
alternate agent you name should have a copy. Also consider giving copies to family members, close friends, the
hospitals or programs where you might be taken in an emergency, your managed care firm (if you have one) and your
other service providers. If you make changes, be sure to let everyone who has a copy know. For this reason, you'll want
to keep track of who has copies; a form for doing this is attached to the signature page.
If you travel, be sure to take a copy with you. And keep the original in an easily accessible place.
How will anyone know I have an advance directive?
A form that advises physicians and others of your advance directive appears below. It is designed to fit in your wallet.
Complete the information on the form, cut it out, fold it in half and keep it in your wallet.
PHYSICIANS AND OTHERS PLEASE NOTE:
I have an advance directive for mental health decisionmaking, a legal
document stating my preferences as to psychiatric hospitalization and
treatment. A copy may be found at:
_______________________________________________
_______________________________________________
If I am incapacitated, please obtain this document and respect the
choices I have registered in it.
My name: ______________________________________
My SS#: _______________________________________
I have appointed as my agent for mental health
decisionmaking _________________________________
who can be reached at __________________(day) or
________________ (evening). This person is authorized to make all
decisions about my psychiatric treatment in the event that I am
incapable of making such decisions
MAKING GUARDIANSHIP UNNECESSARY
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
person. As people with disabilities are
supported to live in their own places,
contribute or enter the workforce through
customized employment and truly
participate in their own communities,
guardianship will be seen as increasingly
incongruent.
Running contrary to an optimistic view of
the timing of this issue of TASH
Connections are some very discordant items.
The first of these has to do with the
wholesale trampling of the due process
rights of people with disabilities (as well as
those who gain disabilities with age) when
they are the subject of guardianship
proceedings. Many persons are not even
present in court as their rights are removed.
It is near automatic in many places for the
subjects of guardianship proceedings to be
excluded from their own hearings.
The timing is right to change the current
pervasiveness of guardianship. We have
moved away from parents and
professionals making decisions about
placements for people with disabilities i n
homes, facilities, and day programs. The
principles and practices of personcentered planning and self-determination
give us the tools to support individuals with
disabilities to have the lives they want in
the community. This change bodes well for
rethinking our reliance and benign attitude
1
towards guardianship. There is clearly a
dichotomy between guardianship and selfdetermination or person-centered planning.
As Kathy Harris points out in her article,
Making Guardianship Unnecessary, “The
imposition of guardianship is the total
antithesis of self-determination principles.”
Any close look at this topic leaves one
convinced that a culture of guardianship
currently exists. We have all heard people
with disabilities who find it necessary to
assert, “I’m my own guardian.” Only
people with disabilities, especially those
with developmental disabilities, find it
necessary to do so. Guardianship
1
Here, I
make the assumption that we do not mean
“guardian-centered planning” or “guardiandetermination.”
permeates our field to such an extent that
professionals, parents and people with
disabilities assume everyone with a
disability has a guardian -- some just
happen to be their own guardian, unlike
others who have a 3rd party as their
guardian.
Reasons to be optimistic about changes in
this regard include changes in our language
and our practice. As we make these
changes, the current overemphasis on
guardianship cannot go unchanged.
Supporting and accommodating individuals,
rather than caring for them, changes how
we view and deal with perople with
disabilities. Accommodating an individual’s
disability and assuring the supports they
want and need to live, learn, work, play and
participate in their community projects a
different image -- an image incompatible
with guardianship.
Congregating people and segregating them
established a view and mentality, emphasizing differences and deficits. The power of
including people with disabilities, based on
the accommodations and supports they
need as an individual, instead emphasizes
the traits and qualities we all share, as well
as the strengths and capacities of each
Representation for those who are the
subjects of guardianship petitions is weak, if
present at all. If the court appoints an
attorney, he or she typically has no background in disability, and does not wish to
upset the court or take up much of the
court’s time. This is especially true if they
would like subsequent appointments by the
court. Judges and attorneys blur the role of
guardian ad-litem and act in a very
paternalistic manner. The brevity of
hearings, usually only a few minutes, speaks
volumes about the lack of due process and
care with which guardians are appointed.
Lady Justice, blindfolded and evenhandedly
weighing evidence and individual rights, is
clearly absent from most courtrooms during
guardianship proceedings.
Some would argue that this problem should
be addressed through legislative or legal
action. I disagree. Many states have near
model statutes on guardianship. Each calls
for due process, most for limited or partial
guardianship and some call for guardianship
to be determined necessary. At least one
goes so far as to require the finding of
necessity on the record.
Despite good statutes and language, rights
are ignored when it comes to practice in
many courts. Due process apparently would
take too much time and to what end
The person would still have a disability.
Sadly, necessity is seldom viewed in light of
available, viable alternatives. Therefore, the
overwhelming majority of petitions filed for
guardianship result in the appointment of a
third party as guardian for the individual
with a disability (or the person who is
aging).
One solution to the problem might be to
slow down or stop entirely petitions to the
courts. While this sounds simplistic on its
face, it is anything but simple. It will require
an education campaign -- a campaign aimed
first at parents and family members and,
subsequently, at professionals and others in
the field. I am resigned to the fact that this
will be a long term project. What makes it
important, of course, are the lives of people
with disabilities, most of whom will live
well past their parents’ lifetimes.
My experience is that, in most instances,
parents’ first instincts are correct. Upon first
hearing about the subject of guardianship,
parents are likely to ask “why?” or “why
would I do that?” What follows, in an
atmosphere of guardianship being the norm,
is a barrage of information, including
considerable misinformation. Well
intentioned, if not particularly well
informed, professionals begin pronouncements of mantras which they have heard,
usually ending in a chorus of “you must do
it,” “you need to do it,” and a list of horrible
things which could occur “if you don’t do
it.” The “it,” of course, is seeking and
obtaining guardianship for their adult or
soon to be adult son or daughter.
What is most amazing about this relates to a
question I was asked by another contributor
to this publication, Joel Welber. His question
was, “Don’t parents realize they are
permanently altering their relationship with
their son or daughter? They are changing a
two-party relationship to a three-party
relationship, with the third party being the
court.” In effect, they are
inviting the government into their relationship with their child.
The question I think needs to be asked is,
“who has the most power in that relationship?” Clearly, it is not the now powerless
person with a disability. Nor is it the parent
as guardian. That leaves the court, to whom
the parent must report and must satisfy, and
who has the authority, albeit infrequently
exercised, to replace a parent with someone
else as guardian of that parent’s son or
daughter.
Professionals wield amazing power to be
able to convince parents to do such a thing.
Clearly, one reason they are able to do so is a
lack of information about or planning for
the future. Prior to making a recommendation for such a drastic step, once which
holds tremendous long term implications,
one would hope professionals would help
parents understand the consequences of
such a step and carefully weigh their
options in light of same. The short term
involvement of professionals, when viewed
in light of the lifetime commitment of
parents, mitigates against true long term
planning. It also means a lack of awareness
of how current recommendations/actions
will affect persons with disabilities and all
aspects of their lives far into the future.
School professionals, for example, typically
have little understanding of life for people
with disabilities, and even less contact with
them as they live some thirty to thirty five
years beyond their parents’ lifetimes. Yet,
professionals blithely make the recommendation to seek guardianship without such
understanding and without knowledge of
the myriad of alternatives to guardianship
which don’t remove a person’s rights.
Making a recommendation for guardianship
without either is inexcusable.
IDEA ’04 (IDEA) mandates that a student
learn of his/her rights and responsibilities
one year before reaching the age of
majority. One can expect that this will
provide an opportunity for the relevant
school personnel to recommend petitioning
the courts for guardianship. Parents will be
told and frightened into believing they will
lose the ability to control their child’s
educational program and even to receive
information regarding their child unless
they become their son or daughter’s
guardian.
This time could, and I believe should, be
spent instead with the school and parents
working collaboratively with the student
towards such outcomes as self-determination, employment options, transitioning to
post-secondary education alternatives, and
the like. And, if necessary, preparing the
alternatives to guardianship for the student
for when he/she does reach the age of
majority.
This is a change that will require specific
education for both parents and the
professionals who work with their son or
daughter. Information on the various
alternatives to guardianship and which are
appropriate, if any, for a particular student,
need to be provided to both audiences.
Examples of the methodologies, instances of
and experiences with each are especially
useful. It is also important that parents and
professionals see current possibilities and
the outcomes we should now expect. Then it
is possible to align the alternatives with a
desirable future. This also makes it clear
why unintended consequences of guardianship in the future are unacceptable.
This challenge/opportunity is one which is
about to be realized. Should we be able to
mobilize in time, we will be able to prevent
many needless petitions which will otherwise lead to many needless and possibly
detrimental guardianships. We have no
time to waste.
Guardianship is seldom, if ever, necessary.
It is incongruent with what people with
disabilities, regardless of severity, want and
needlessly impinges upon individual rights
as well as our obligation to honor a person’s
preferences. It represents an outmoded,
outdated methodology and, in keeping with
TASH’s position on the subject, is contrary
to TASH, and I would hope, your values.
Dohn Hoyle is Executive Director of the
ARC of Michigan in Ann Arbor.
Comments about this article may be directed
to Mr. Hoyle by phone, 517-487-5426 or
fax,517-487-0303.
“Alternatives to Guardianship”
Web Conference
Monday, December 3, 2007
1:00 – 2:30 PM
In the words of presenter Marsha Katz: “There is no question asked more often by the parents of
a child with a disability than, ‘What will happen to my son or daughter when I am no longer
around?’ The combination of love, fear and concern as a child approaches adulthood often has
parents questioning whether or not they should pursue legal guardianship. This parental inner
struggle is made even more difficult by the lack of information available regarding what a
guardianship can and can’t do. In fact, most people have many misconceptions about what a
guardianship really is... and isn’t. This Web conference will offer parents, teachers and support
providers information they don’t typically receive about guardianship. In addition, it will offer
students and families alternatives that can allow families to remain respectfully involved in their
children’s lives as they transition into adulthood.”
Topics to be covered include:
 Realities and myths of guardianship
 Tools such as the “Release of Information,” “Advocacy Authorization,” and “Medical
Power of Attorney”
 The benefits of using “person-centered planning”
 How to answer the “what if?” questions that inevitably arise
 A discussion of the possibilities for typical supports, available to everyone, or disabilityspecific supports that can serve as alternatives to guardianship
Web conference attendance may be used to help meet Office of Public Instruction Renewal Unit
requirements. There is no cost to participate in this training session thanks to the generous
sponsorship of the Administration on Developmental Disabilities and the Montana Council on
Developmental Disabilities.
Presenter: Marsha Rose Katz - Marsha is a Project Director at the University of Montana Rural
Institute, and author of an advocacy manual on Supplemental Security Income (SSI)/Social
Security Disability Insurance (SSDI), entitled Don’t Look for Logic. She is also a member of the
Social Security Advisory Board.
Marsha has worked in disability rights for over 25 years, and came to Montana in late 1998 after
serving as Vice President of the Association for Community Advocacy in Michigan. She is an
experienced trainer in all aspects of SSI, SSDI, assisting people with disabilities to start their
own businesses, and alternatives to guardianship. Her additional interests include disability law
and policy, persons with cognitive disabilities in the criminal justice system, parents with
disabilities, and fetal alcohol syndrome/fetal alcohol effects. Marsha is active nationally with
both ADAPT and Not Dead Yet.
Registrations are due by 5:00 PM on Wednesday, November 28, 2007.
Web Conference Registration
Name:
Agency/School (if applicable):
Address:
E-mail Address:
When you register for a Web conference, we automatically add your name and address to our Transition
Mailing List and your email address to our Montana Transition Listserv so you can receive the latest
information about transition “best practices.” If you do not wish to be added to either/both of these lists,
please indicate this below.
I do not wish to be added to the Transition Mailing List ______
I do not wish to be added to the Transition Listserv _______
If you need verification of your Web conference participation for Office of Public Instruction Renewal Units,
include the phone number from which you’ll participate here:
Third Party In-Kind Contribution Verification
State and federal grants require us to provide a match in money or in-kind services. As long as your salary is
not federally funded, we can count the value of the time you spend participating in this Web conference
toward meeting our in-kind match requirement. Please complete the items in bold below to help us document
that we have met this requirement. Thank you.
Rural Institute Use Only
EVENT: Web Conference Training
DATE of contribution: December 3, 2007
Project Director’s Signature:
Banner Index Number: M67064
Program Title: Partnerships for Transition
Funding Agency: MCDD
Total Hours: 1.5
Hourly Rate (if you wish to leave this blank, we will use the federal hourly rate of $26.19):
Total Amount (we will calculate):
I hereby certify that the contribution reported herein has not been and will not be paid from any federal funds
and that further said contribution has not been and will not be used as matching for any other federally
funded program. I also hereby certify that if my electronic signature is used, this is valid documentation in
accordance with administrative procedures.
Please sign or type your name:
Date:
E-mail registration to Connie Lewis at: [email protected]; or fax to: (406) 243-4730; or mail to:
Rural Institute, Attn: Connie Lewis, 634 Eddy Ave., 009 Curry Health Center, UM, Missoula, MT 59812. After
registering, you will receive an email confirmation, along with the toll-free dial-in number, Web site and access
code for the session.
This training is an activity of the Partnerships for Transition Project, which is funded by the Montana Council on
Developmental Disabilities, and of MT-TIRC, which is funded by the Administration on Developmental Disabilities.
In 1984, doctors at the Brown University
Medical School (Walker, Feldmam, Vohr &
Oh, 1984) argued in Pediatrics, the journal
of the American Academy of Pediatrics,
that even though only 16% of premature
babies born at very low birth weights in a
study they conducted had significant lifelong disabilities, all of the low birth weight
children should not be treated.3
Guardianship and
the Disability
Rights Movement
BY DI ANE CO LEMAN and
TOM NERNEY
Introduction
he disability rights movement has
never been monolithic, but it has
experienced an increasing consensus
about the importance of limiting the
legal authority granted to guardians,
especially in life and death health care
decision-making. Twenty-six national
disability rights groups asked the courts not
to allow Terri Schiavo’s guardian to bring
on her death. But the arguments advanced
by the disability rights perspective were
long dismissed by a burgeoning and now
fully developed movement.
T
The self-determination movement is far
ahead of courts, legislatures, media and
society at large when it comes to the
theory, importance and practical aspects of
determining the preferences of people with
significant intellectual disabilities. While
many states have added due process
protections to guardianship laws, and many
have adopted reforms favoring
guardianships limited to specific types of
decisions rather than all decisions affecting
a person’s life, implementation of these
reforms has been woefully inadequate.
Bioethics – The Single Greatest Threat
It can be argued that the convergence of the
fields of ethics, medicine and law into a
powerful field of bioethics represents the
single greatest threat to the welfare of those
with significant disabilities in this country.
Under the rubric of utilitarian ethics and the
language of rights, discrimination against
people with disabilities has become
enshrined in law and popular imagination.
And this new right to die is
relentlessly moving to the duty to die. What
was once hidden medical practice has
moved to publication in prestigious journals
and, finally and very quickly, into
contemporary case law. Some milestones in
this recent history are compelling.
In 1973 two doctors (Duff and Campbell,
1973) published an article in the New
England Journal of Medicine advocating for
the withdrawal of treatment from newborn
infants with disabilities.1 They argued that
this was, in fact, now accepted practice and
prevented a life of “suffering.” There was
some outrage expressed and even a
congressional hearing but, by 1983, when
the starvation death of the Indiana “Baby
Doe” case reached the public, the issue had
largely been settled within the medical
community.
Both the Indiana case and the 1983
Oklahoma Children’s Memorial Hospital
case, where infants with spina bifida went
untreated, produced extensive media
coverage and, for the first time, introduced
public discussions of the cost of life-long
treatment for these children. The Oklahoma
medical protocol (Gross, Cox, Tatyrek,
Pollay & Barnes, 1983) specifically factored
in the relative poverty of parents in the
selection process for what was called a
treatment protocol.2 For the first time nontreatment became a form of treatment.
Starvation and dehydration were soon to
become painless, and persistent vegetative
state as a medical description would soon
enter the vocabulary as a way to depersonalize the individuals with disabilities.
There were still some debates going on
within this field of bioethics. Daniel
Callahan, a pioneer in the field and once a
voice for reason and compassion wrote in
the Hastings Report in 1983 that the
feeding of hungry or disabled individuals
was “…the perfect symbol of the fact that
human life is inescapably social and
communal.” (Callahan, 1983)4 Less than
four years later, Callahan changed his mind
under pressure and, in a review of his book,
the American philosopher Sidney Hook
took him to task for not going far enough.
(Hook, 1988).5 Callahan had also proposed
at this time that we consider certain aging
individuals with disabilities as “biologically
tenuous” in order to further advance the
rationing of medical care.6
Is there now, given the severe fiscal
constraints that all states are experiencing,
especially in their Medicaid programs, an
emerging “duty to die?” In the 1997 edition
of the Hastings Report, John Hardwig wrote
that that time had come. (Hardwig, 1997)7 In
that article, he defended the former governor
of Colorado, Richard Lamm, (who
acerbically asked elderly people with
disabilities to step aside and make way for
the young) and explicitly called for our
personal obligation to die should we become
unable to care for ourselves. How close are
we to witnessing this new duty to die by
surrogate means? How many guardians
would dutifully embrace their new
responsibility?
Case History from Quinlan to Schiavo
Prior to the 1970’s, the right to refuse
treatment was not a major source of social
concern. Unwanted medical treatment was
not a big issue. After all, the federal
government did not enter the health
insurance field until 1965. There were court
disputes over the right of an individual to
refuse life-sustaining treatment, but these
tended to focus on situations in which the
individual had an additional basis for
refusing treatment beyond that of privacy,
such as religious convictions against certain
types of medical intervention.
Beginning in the 1970’s, several high profile
court cases defined and expanded the right
to refuse treatment. Five of the leading cases
involved the right of a substitute decision
maker to refuse life-sustaining treatment for
a person deemed “incompetent.”
The first of these involved Karen Quinlan, a
New Jersey woman stated to be in a coma or
persistent vegetative state. Ms. Quinlan’s
family sought to remove her ventilator.
When the state Supreme Court granted them
that right in 1973,8 it turned out that she
could breathe without the ventilator. The
family did not propose to remove her food
and fluids, and she lived ten more years. To
the best of the authors’ knowledge, no
segment of the disability community
expressed opinions about this case through
articles or friend-of-the-court (amicus)
briefs.
Throughout the 1980’s, courts found an
individual’s right to refuse treatment in
several cases involving male
quadriplegic ventilator users who
demanded liberty from nursing homes or,
in the alternative, death through “pulling
the plug.” Again and again, courts
reviewed the legally relevant state
interests – preserving life, preventing
suicide, protecting third parties, and
protecting the “integrity of the medical
profession” – and found them
insufficient to overcome the individual’s
so-called “right to die”.9 Society was
more ready to grant death than liberty
from a nursing home. At this point, the
disability rights group, ADAPT, began
filing amicus briefs in these cases,
finding that a choice between a nursing
home and death is no choice at all.
Against this backdrop, in the late 1980’s,
the Michael Martin case arose, in which
a mother disputed a wife’s decision to
remove a feeding tube from a brain-injured
man. The Michigan courts refused to
substitute the mother as guardian, but
would not allow the wife to withhold Mr.
Martin’s food and water.10 There was no
unified disability community response to
this case, but it was a subject in articles and
conference presentations in the physical
disability community.
In 1990, the U.S. Supreme Court issued its
first and still only ruling on the substantive
power of guardians to withhold lifesustaining treatment in the Cruzan case.
The developmental disability community,
notably The Arc, filed an amicus brief in
the case, but the physical disability
community did not. In this pivotal case, the
highest court in the land found that
providing food and fluids by tube is
medical treatment, that “competent”
individuals have a right to refuse treatment,
that this right survives “incompetence” and
may be exercised by a substitute decisionmaker, and that a state may require “clear
and convincing evidence” of an individual’s
wishes before allowing a guardian to
withhold life-sustaining treatment.11 The
Court pointed out that a high evidentiary
standard was appropriate because even a
well meaning guardian may have conflicts
of interest or other competing motives. The
Court did not rule on whether a lower
standard could be allowed if adopted by a
state. While many states have, in fact,
adopted lower standards, this crucial issue
has not yet been revisited by the U.S.
Supreme Court.
Several years later, the problem of nonvoluntary and involuntary withdrawal of
food and water moved onto the broader
disability community’s radar screen.
Before Terri Schiavo, there was Robert
Wendland in California. Both his wife and
mother agreed that Mr. Wendland was not
in a persistent vegetative state, and that he
had not left clear and convincing evidence
of his wishes. Nevertheless, his wife
argued that she should be able to remove
his tube
feeding anyway. A state statute, based on a
national model health care decisions code,
gave her the right to starve and dehydrate
him, and forty-three bioethicists filed a
friend of the court brief in agreement. Ten
disability rights organizations filed against
the general presumption that no one would
want to live with his disabilities, being used
to justify lowering constitutional protections
of his life.12 Ultimately, the California
Supreme Court agreed with disability groups
that his life could not be taken without clear
and convincing evidence of his wishes.13
By the time the Schiavo case reached major
national attention in 2003, twenty-six
national disability organizations had taken a
position that Terri Schiavo should receive
food and water, due to the highly conflicting
evidence of her wishes and the fact that she
had not chosen her own guardian.14
Disability organizations were deeply
disturbed to see court after court uphold
questionable lower court rulings. This time,
55 bioethicists supported the removal of
food and water. Disturbing, too, was that the
court allowed most of Terri Schiavo’s
rehabilitation funds to be spent on her
husband’s lawyers, that she was denied a
properly fitted wheelchair, a swallowing
test, swallowing therapy, the potential for
oral feeding, speech therapy, and the
freedom to leave the hospice with her
parents, even temporarily. Disability
advocates were concerned that adult
protective services did not intervene, and the
state protection and advocacy agency tried,
but proved powerless. It would appear that
the prevalent prejudice that no one would
want to live like Terri Schiavo translated
into her guardian’s unfettered right to treat
her at best as a prisoner, at worst as though
she was already dead.
It only takes common sense to recognize
the potential for conflicts of interest in a
guardian, even conflicts of which they may
be unaware. A recent Alzheimer’s study
confirmed previous studies that caregivers
have a lower opinion of their relative’s
quality of life with Alzheimer’s than the
individuals themselves have, and found an
explanation for the discrepancy. It seems
that the caregivers project their own
feelings of the burden of care-giving onto
the people for whom they provide care.15
And what of state guardians? In an ominous
ruling, the Kentucky Supreme Court
declared in 2004 that a public guardian may
deprive life sustaining treatment from a
man labeled “mentally retarded,” despite
the financial conflict of interest for a state
guardian of a ward on Medicaid.16
The growing disability consensus
While it is clear that most people, in and out
of the disability movement, want to have the
right to refuse unwanted medical treatment,
the alliance of developmental and physical
disability groups and their consensus around
the Wendland and Schiavo cases
demonstrates a growing concern about nonvoluntary and outright involuntary medical
killing through withholding of treatment,
even food and water. People with disabilities
and allies are feeling the pressures toward
death from several directions.
First, increasingly throughout the last decade
or more (since the fiscal incentives of
managed care overtook the health care
system), people with disabilities and medical
treatment consumers in general experience
the need to be knowledgeable advocates to
ensure proper health care is provided.
Second, while the Patient SelfDetermination Act of 1991 purported to help
people effectuate their right to make their
own health care decisions, whenever people
with disabilities are admitted to a facility, the
boilerplate forms they are given are not
balanced and objective, but exclusively
oriented toward refusal of treatment. The
community is full of anecdotes of people
with disabilities pressured by social workers
to sign do-notresuscitate orders.
One of the leaders of the end-of-life care
movement, Dr. Ira Byock, was interviewed
by Ragged Edge Magazine, a leading disability
rights publication.17 He stated that
Partnership for Caring and Last Acts,
national leaders in the movement until they
disappeared under a cloud late last year,
had excluded the disability perspective, and
that this exclusion was “deliberate and
irresponsible.” What’s especially disturbing
is that they had fifteen years and hundreds
of millions of dollars in funding from
prominent foundations, and set up surrogate
decision-making protocols to end the lives
of people with intellectual disabilities,
without seeking the input of such
individuals and the established
organizations that address issues of selfdetermination for people who have less
typical ways of receiving, processing and
communicating information.
Barriers to consensus
A commonly stated reason within the
disability community for hesitation or
refusal to join the campaign to save Terri
Schiavo was the problem of association
with religious, pro-life and right-wing
advocates. While disability advocates were
covered in over 100 national and local
television news broadcasts and talk shows
on Schiavo, that was a mere drop in the
proverbial bucket of Schiavo coverage
overall.
When we analyze why the pro-life and
religious advocates received such
disproportionate attention, one factor is that
disability advocates did not have the
financial or personnel resources to carry
out a large, prolonged vigil in Florida. But
long before the last few weeks of Terri
Schiavo’s life, the disability perspective was
ignored. For the last three decades, certain
bioethicists have told the press and the
public that euthanasia is about compassionate progressives versus the religious right.
Concerned disability groups don’t fit the
long-settled script and so disability advocates have been marginalized or ignored
entirely.
with disability rights, and not necessarily
identified with either the right or the left. In
fact, advocates worked to hold policymakers
from both sides of the political aisle
accountable. But so many reporters were
suspicious that disability groups were
secretly puppets of the right wing, that Not
Dead Yet often added the following
statement to Schiavo interviews: “The far
right wants to kill us slowly and painfully by
cutting the things we need to live, health
care, public housing and transportation, etc.
The far left wants to kill us quickly and call
it compassion.”
Apart from the right-left tension, also known
as “strange bedfellows,” there are some
individuals with disabilities who
substantively disagree with the positions
taken by national disability advocacy
organizations. Some view these positions as
paternalistic and over-protective, contrary to
the principles of self-determination. Some
individuals with disabilities favor
legalization of assisted suicide. Some object
to identifying Terri Schiavo as a person with
a disability.18 The disability rights
movement is not sufficiently strongspoken
and recognized in the mainstream
community to escape the neutralizing effect
that a few individual dissenters can have on
the message of groups representing millions.
In hindsight, the facts in the Schiavo case
also suggest that an Olmstead challenge
could have been raised. Using selfdetermination oriented, person-centered
planning approaches, the claim could have
been made that Terri Schiavo’s Olmstead
rights were violated by her guardian when
he incarcerated her in a hospice facility,
rather than allowing her to receive long term
care services at home with her mother and
family. Her ability to live at home and her
preference to be with her mother could have
been tried in federal court under the
Americans With Disabilities Act, using
experts from the disability rights and selfdetermination movements.
Futility is proof that more unity is needed
It is a long-term fight for disability advocates to be heard through the barrier of the
established script. The organizations that
supported Terri Schiavo’s right to food and
water held their position as one consistent
Unfortunately, the anecdotal evidence
suggests that Terri Schiavo’s case may be
the tip of a very large and almost fully submerged iceberg. It appears that bioethics has pretty much dominated
endof-life care movement work in policymaking, imposing a “lifeboat” approach, deciding who gets thrown
out.
In fact, if neither the patient nor guardian are willing to refuse life-sustaining treatment that the physician does
not want to provide, futility policies have been developed through which doctors simply over-rule the patient or
guardian. This is involuntary euthanasia. The AMA recommends procedurally based futility policies, which take
the family through a series of steps, including ethics committee reviews, to persuade them that the doctor’s
decision not to treat is best.19 Increasingly, the only “good” decision is a “death” decision.
Conclusion
As we watch state Medicaid programs cut people and services, knowing that many disabled and non-disabled
will die as a result, the importance of unity within the disability community has never been more clear. If we
know that we are not better off dead, and we know that society is not better off without us, we had better say so
very strongly. We must not only build our alliances within the movement, but reach out to other health care
advocates and help them understand that our lives are not a waste of society’s resources.
For these reasons the authors believe that it is long past time to create an emergency summit on these issues, raise
dollars to advance a disability rights agenda and create several parallel strategies within academia, the media and
our social and cultural organizations. There is no longer time to wait on the sidelines.
Diane Coleman, J.D. is President of Not Dead Yet and Executive Director of Progress Center for Independent
Living, in Forest Park, Ilinois.
Tom Nerney is Director of the Center for Self-Determination.
Comments about this article may be sent to Ms. Coleman at NDYCOLEMAN@ aol.com
References
Duff & Campbell, Moral and Ethical Dilemmas in the Special Care Nursery, 289 New Eng. J. Med. 890
(1973)
1
Gross, Cox, Tatyrek, Pollay & Barnes, Early Management and Decision Making for the Treatment of
Myelomeningocele, 72 Pediatrics 450 (1983)
2
Walker, Feldman, Vohr & Oh, Pediatrics Cost Benefit Analysis of Neonatal Intensive Care for Infants
Weighing Less Than 1000 Grams at Birth, 74 Pediatrics 20 (1984)
3
4
5
Hook, Sidney, The Uses of Death, The New York Review of Books, April, 1988.
6
7
Hardwig Is There a Duty to Die Hastings Center Report 27, no 2 (1997)
8
In Re Quinlan, 355 A.2d 647 (N.J. 1976)
9
McKay v. Bergstedt, 106 Nev. 808; 801 P.2d 617 (1990); In re McAfee, 385 S.E.2d 651 (Ga. 1989)
10
In re Martin, 538 N.W. 2d 399 (Mich. 1995)
11
Cruzan v. Director, Missouri Dep’t of Health, 497 U.S. 621 (1990)
12
http://www.notdeadyet.org/docs/ wendbrief.html
13
Conservatorsh ip of Wendland, 28 P.3d 151 (Cal. 2001)
14
http://www.raggededgemagazine.com/ s chi avo s tatement. h tml
See, e.g., Psychiatric News July 16, 2004, Volume 39 Number 14 © 2004 American Psychiatric Association
p. 32.
15
Lexington (KY) Herald-Leader, Aug. 27, 2004, State can end life support of wards, High court rules 8 years
after death of retarded man, http://www.kentucky.com/ mld/kentucky/news/9509486.htm
16
17 Johnson, Mary, Ragged Edge Magazine A deliberate decision? Does end-of-life group shut out disability
perspective?
Alan Toy, “Is This a Disability Rights Case?” Ragged Edge Online, November 16, 2003, http://
www.raggededgemagazine.com/extra/ s chiavodr2e s s ays.html
18
Medical Futility in End-of-Life Care: Report of the Council on Ethical and Judicial Affairs, JAMA,
Volume 281(10).March 10, 1999.937-941.
19
THE ANTITHESIS OF SELF-DETERMINATION
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
like to travel, how we’d like to spend our
money, even who we
want to spend our time
with.
Guardianship is Not
Self-Determination
Guardianship is created so that one person
can take over the decisions of another -another who has been determined to be
incapable of making decisions for him/her
self. This imposition is the total antithesis
of self-determination principles. Although
some still see guardianship as having a
benevolent purpose, we must:
[r]ecognize guardianship for what it really
is: the most intrusive, non-interest serving,
impersonal legal device known and
available to us and, as such, one which
minimizes personal autonomy and respect
for the individual, has a high potential for
doing harm and raises at best a questionable
benefit/burden ratio. As such, it is a device
to be studiously avoided.1
Claude Pepper, U.S. Representative from
Florida in the 70’s, and a champion of the
rights of older people, made the following
statement in a study of guardianship
conducted by the Pepper Commission:
“The typical ward has fewer rights than the
typical convicted felon. They no longer
receive money or pay their bills. They
cannot marry or divorce ... It is, in one short
sentence, the most punitive civil penalty
that can be levied against an American
citizen, with the exception ... of the death
penalty.2
Guardianship frequently removes constitutional rights of individuals. Over thirty
states have statutes that deny the right to
people under guardianship to marry or vote.
The simplest of decisions that we all take
for granted can be taken away from the
individual and given to another under
guardianship. This includes the right to
decide where we want to live, what kind of
work we may wish to pursue, where we’d
Some providers of services
for individuals with labels
of developmental
disabilities have requested
that families or friends
seek courtappointed
guardianship because the providers believe
it is a legal necessity. In fact, there is
generally no legal requirement that if a
person needs assistance with decisionmaking, that the person who acts as a
surrogate decision-maker must be a legal
guardian. Providers are often not familiar
with alternatives, and thus do not promote
the use of support circles, family consent
policies, powers of attorneys, trusts, and
other alternative surrogate decision-making
devices.
Support circles which function through a
person-centered process are an important
key to avoiding guardianship. We all have
friends, family and others who we call upon
when we need help or advice when making
life decisions. When we need to make
decisions about health care, finances, or
where to live, we ask knowledgeable people
who make up our “support circle” to help
us make these decisions. These people we
call upon for help do not file to become our
guardians, even though we may be
incapable of making good decisions
without their help.
Individuals with developmental disabilities
need the same kind of support circles to
help make decisions. This decision making
process is essential to living the selfdetermined life we all enjoy. When called
upon to write a “plan” for someone’s life,
we first must determine what the individuals themselves desire for their own lives. If
individuals aren’t able to communicate their
desires for any reason, their family, friends,
and others close to them can help to
determine their wishes. They do this by
using their knowledge about the individual
and how they communicate. This includes
their observations about the individual’s
behavior including facial expressions,
gestures, and sounds that indicate their
preferences. In this way, the support circle
can arrange medical treatment, help at the
school IEP, or gain supports from
community programs that will help the
individual with a disability find a place to
live or get a job.
There are cases in which individuals do not
have family or friends in their lives to act as
a support circle. This calls for creative
development of ways to bring community
members into these individuals’ lives so that
over time a support circle will develop, thus
negating the need for guardianship.
When such a support system is in place,
there is no need for a legal guardian to make
decisions for the individual. In fact,
imposing guardians on individuals could
interfere with the support circle process. If
there is a court-ordered guardian, there is a
danger that one person may be allowed to
impose their decisions on the individual
without the benefit of knowing what the
person desires, either directly or through the
observations of the support circle.
Courts around the country have begun to
recognize that outside supports for an
individual may negate the need for guardianship. In Iowa, the Supreme Court there
has stated, “In making a determination as to
whether a guardianship should be
established ... the court must consider the
availability of third party assistance to meet a
... proposed ward’s need for such necessities.3
The Pennsylvania Supreme Court stated,
“Persons cannot be deemed incapacitated
if their impairments are counter-balanced
by friends, family or other support.”4
And Tom Nerney, Executive Director of the
Center for Self-Determination, has stated,
“We have to reject the very idea of
incompetence. We need to replace it with
the idea of ‘assisted competence.’ This will
include a range of supports that will enable
individuals with cognitive disabilities to
receive assistance in decision-making that
will preserve their rights.”5
Through self-determination, with the use
of a person-centered planning process,
guardianship can be avoided. This would be to the advantage of the individual, who retains his/her decisionmaking rights, and to the community that reaps the benefit of total inclusion of all of its citizens.
Those who followed the Terry Schiavo case in Florida this past year have found good reason for alarm about
the direction of our society for people with intellectual disabilities. Most states now recognize that individuals
have a “right” to determine their wishes through living wills and patient advocate forms, and can give
directions about removing life-sustaining procedures.
What about people who have been determined “incompetent” by a court of law, thus unable to make such
decisions for themselves? Such decision-making ability is given to guardians, who are charged with making
decisions in the person’s “best interests.” Given that people who have been adjudicated “incompetent” have
historically faced a loss of status, rights, and value, it has become acceptable to determine that death is
preferable to living with a disability.
A change is needed to raise awareness of the value of people with disabilities as equal to those without
disabilities. It is essential that the idea of making decisions in the “best interest” of individuals be replaced by
families, friends, and those close to people with intellectual disabilities willing to go through the work of
ascertaining the individual’s preferences and dreams. Only in this way will people with disabilities attain true
equality and overcome the enormous prejudice against them.
Other alternative methods to handle decision-making also may be useful. Most states have family consent
statutes, or their health care providers have family consent policies. These statutes and policies allow family
members or others who are close to the individual to make medical decisions in the event individuals cannot
make the decision for themselves. Providers of other kinds of services and supports also have such policies
and recognize that there is no reason to have legal guardianship imposed as long as a family member or other
close person is involved in the person’s life and can arrange needed services. If your state does not have a
family consent statute, or if providers are not aware that they may implement such policies, they need to be
informed of this simple and effective alternative to guardianship. More often, the statutes or policies exist, but
are not used.
Another device that may prove useful is the use of durable powers of attorney. These are documents that can
be used by an individual to designate another person to discuss and make decisions about medical decisions,
living situations, confidentiality issues and other areas of concern. In this way, family members or others who
have always assisted the individual in making such decisions can continue to do so without filing a petition to
become guardian. The power of attorney allows the individual to give that power to someone, and they can
also take away that power if they become unhappy with the decisions being made.
When money is involved, there are other alternatives. If an individual is the recipient of public benefits and is
unable to handle the funds, a representative payee can be appointed. This is someone who receives and
disburses the money for the individual. If a parent wants to provide for their son or daughter with a disability
after the parents’ death, or if a substantial amount of money comes into an individual’s life, amenities trusts,
also known as special needs trusts, can be devised. These kinds of trusts appoint a trustee to handle the funds
without interfering with the individual’s Medicaid benefits. Additionally, such trusts can specify that someone
visit the individual to assure they are satisfied with his/her living situation and support systems. This is more
than the imposition of a guardian or conservator can do for an individual, and gives more peace of mind to
parents who worry about what will happen to their son or daughter when they are gone. A knowledgeable
attorney should be consulted about these trust documents.
Educational programs about these kinds of alternatives need to be implemented for families, professionals and
advocates. Putting an end to the systematic removal of rights and concomitant removal of protections for
people with disabilities needs to be a priority. This means a different way of doing business. Those who care
about an individual with a disability and those who make their living because of individuals with disabilities,
have an obligation to discover what people like and don’t like, what their desires and preferences are. We
should employ the many alternatives which currently allow people to avoid guardianship altogether.
Ultimately, we can use the framework of person-centered planning and self-determination to obtain the
optimum choice making. We can assure individuals with disabilities, including those with cognitive
disabilities and those who communicate using alternative methods, access to life, liberty and the pursuit of
happiness. In so doing, we will have eliminated an unnecessary barrier to individuals’ opportunity to seek
their piece of the American dream.
Kathleen Harris is a social worker and attorney who consults with non-profit organizations about alternatives to
guardianship. She is also President of the Board for the Center for Self-Determination. Comments about this article may be
sent to Ms. Harris at [email protected]
References
Winsor C. Schmidt, Guardiansh ip of the Elderly in Florida: Social Bankruptcy and the Need for Reform, 55 Fla. B.J. 189, 189 (Mar.
1980) [quoting E.S. Cohen, Speech, Protective Services and Public Guardianship: A Dissenting View (32nd Annual Meeting of
the Gerontological Socy., Dallas, Tex. Nov.20, 1978.)]
2 Pepper, Claude, Abuses in Guardiansh ip, 1987.
3 In the Matter of Hedin, 1995, Iowa Supr. Ct.
4 In Re: Perry, 727 A2d 539, (Pa. Supr. Ct., 1999)
5 Nerney, Tom, Chalenging Incompetence: The Meaning of Self-Determination.
1
Alternatives to Guardianship

Advance directives/PMDD

Surrogate decision making

Releases of Information/Advocacy Authorizations

Home sharing/roommate

Case management

Home health services

Senior care

Adult day care

Respite care programs

Meals on Wheels

Transportation to medical and other appointments

Food and prescription drug deliveries

Telephone reassurance programs

Home visitors and Pets on Wheels

Postal service checks

Unpaid utility bills

HCBS Waiver services

Person-centered Plans/Self-determination

Assisted living facilities

Continuing care retirement communities

Durable powers of attorney

Representative payee

Banking services

Joint ownership of bank accounts

Authorization of a specific transaction

Trusts
PSYCHIATRIC
ADVANCE DIRECTIVE
Forms to Prepare
an Advance Directive
for Mental Health
Decisionmaking
1101 Fifteenth Street N.W.
Suite 1212
Washington D.C. 20005-5002
(202) 467-5730
Fax (202) 223-0409
[email protected]
www.bazelon.org
Reproduction is permitted for personal use and for noncommercial educational or training purposes.
© Copyright Judge David L. Bazelon Center for Mental Health Law,
Washington D.C., 1998, 2003. Reproduction of all or part of these forms
is permitted for individual use or, with full attribution, for noncommercial
educational or training.
Additional copies of this booklet may be obtained from the publications
desk at the Bazelon Center (send a self-addressed 9x 12 envelope
stamped with $1.06 postage). The forms are also available to print or
download from www.bazelon.org/issues/advancedirectives/index.htm.
The Bazelon Center for Mental Health Law works to protect and advance
the civil and legal rights of adults and children with mental illnesses or
developmental disabilities and ensure their equal access to the services and
supports they need for full participation in community life. The center
conducts test-case litigation and policy analysis, builds coalitions, provides
technical support to state advocates, issues action alerts, publishes
handbooks and maintains extensive advocacy resources on its website.
Advance Psychiatric Directives
If you are concerned that you may be subject to involuntary psychiatric commitment or
treatment at some future time, you can prepare a legal document in advance to express your
choices about treatment. The document is called an advance directive for mental health
decisionmaking.
Here we offer a set of templates you can use to prepare such a directive. You can use them to:
■ tell a doctor, institution or judge what types of confinement and treatment you do or do not
want; and/or
■ appoint a friend or family member as agent to make mental health care decisions for you if
you are incapable of making them yourself.
What are the advantages of a psychiatric advance directive?
If you expect to need mental health treatment in the future and believe that you might be
found incompetent to make your decisions at that time:
■ An advance directive empowers you to make your treatment preferences known.
■ An advance directive will improve communication between you and your physician. It can
prevent clashes with professionals over treatment and may prevent forced treatment.
■ Having an advance directive may shorten your hospital stay.
Will my psychiatric advance directive be legally binding?
While advance directives for health care have been around a long time, their use for psychiatric care is a very new area of law. We do not yet know how courts will deal with them, especially
when safety issues arise. State laws vary and it is possible that part or all of this document will
not be effective in your state. However, many mental health consumers who are now using
these documents find that an advance directive increases the likelihood that doctors, hospitals
and judges honor their choices.
Please note that these template forms do not constitute legal advice. Before you assume that
the advance directive you create using any or all of these forms will be legally valid in your state,
you should consult a lawyer.
Where can I get legal advice about advance directives in my state?
Your state Protection and Advocacy System (P&A) may be able to tell you about your states
requirements or refer you to a lawyer who can. For the name and number of the system in your
state, visit the website of the National Association of Protection and Advocacy Systems,
www.protectionandadvocacy.com, or call NAPAS at 202-408-9514. The Bazelon Center is not able
to respond to individual inquiries.
Do I have to appoint an agent?
That depends on the law in your state. In some states, you may set up an advance directive
without appointing a person to act for you. In most states, however, an advance directive for
psychiatric care is only valid if you have named an agent. The Bazelon Centers study of advance directives suggests that these tools are much more likely to be honored by providers when
an agent has been appointed. We strongly urge consumers to name an agent whenever possible.
If you appoint an agent, it should be someone you trust. You can direct your agent to present
the choices you have expressed in your advance directive. You can also authorize him or her to
make other decisions about your care that are not in your directive. Or you can appoint an agent
without giving any written instructions, but if you do this, you should clearly explain what your
wishes are so he or she can advocate effectively on your behalf.
The template includes a provision (item 5 in Section II) that your agents decisions about
mental health treatment would prevail even if a court appoints a guardian or conservator for
you.
Does the document cover health care too?
No. The document you produce with these template forms will be an advance directive for
mental health decisionmaking only; it will not cover decisions about other medical or surgical
treatment. It is a good idea to have an advance directive for health care as well, stating your
preferences about emergency medical treatment. Forms to create one are available from most
hospitals and health agencies. A form for New York State can be downloaded.
How do I use the forms?
We created the advance directive as six separate template forms rather than one, in part
because it was originally designed for the WorldWide Web and is easier to print or download as
a series of smaller pages. Furthermore, the separation makes the document more flexible.
The only required sections are I, your statement of intent, and VI, the signature pageand
in states that require an agent, II, the appointment of an agent. The other three templates are
optional, though without at least one, you wouldnt have a directive. You may use them to
express your preferences about hospitalization and treatment (III), about notification and visitors
if you are admitted to a psychiatric facility (IV) and about the circumstances under which you
can suspend the directive (V).
When we asked mental health consumers to test the templates, it took them between 45 and
75 minutes to complete all six sections. Completing these forms is likely to take you under two
hours.
If you are reading this on paper, go to the section, Directions for Using the Forms, then make
a copy of each form you wish to use.
If you prefer, go online and print this overview for your future reference. Then click on the
links for the sections on the list of templates and print or download each one you wish to use.
■ Its easy to print the various forms and complete them with a pen. While each document is
on your screen, use the print button on your browser.
■ If you prefer to edit the forms on a computer, you can download them with the save as..
command on your browsers File menu. The text will be in ASCII format, with codes in the
web language called HTML. You can edit it in Miscrosoft Word or WordPerfect, or if you
have an HTML editor like Macromedia Dreamweaver or Microsoft Frontpage, you can use
this text to edit the forms so they will look much as they did on the internet.
© Judge David L. Bazelon Center for Mental Health Law, Washington DC, 1998, 2003.
Additional information is available through the Bazelon Center’s website.
On the website version of this page, www.bazelon.org/issues/advancedirectives/index.htm,
you will find links to a number of materials.
■ an analysis of state statutes relating to advance directives for mental health care, see Advance
Directive for Mental Health Care: An Analysis of State Statutes, an article by Robert D. Fleishner,
and a bibliography of cases and materials on advance directives for people with mental
illnesses, both available on www.napas.org;
■ two articles on Advance Directives on the National Empowerment Center website,
www.power2u/selfhep: Making Advance Directives Work for You, by Daniel Fisher, M.D.,
Ph.D. and Advance Directives Are What You Make Them, by Xenia Williams;
■ state-specific materials from California, New York, North Carolina, Ohio, Oregon, Texas and
West Virginia.
Contents
A. Directions for Using the Forms
Part I
A statement of your intent in creating an advance directive for mental health care
decisionmaking. This emphasizes your strong desire that providers respect your right to
influence all decisions about the your care.
Part II
This form lets you name another person to make decisions for you if you are determined to be
legally incompetent to make your own choices. Also, your instructions about the circumstances
under which you can change your agent and who should be appointed your guardian if a court
decides to name one.
Part III
Your instructions about hospitalization and alternatives to hospitalization, medications,
electroconvulsive therapy (ECT), emergency interventions (including seclusion, restraint and
medication) and experimental studies or drug trials.
Part IV
Your instructions about who should be notified immediately if you are admitted to a psychiatric
facility, who should be prohibited from visiting you and who should have temporary custody of
your child(ren).
Part V
Here you may choose whether or not you will have the right to suspend or terminate your
advance directive while you are incapacitated, if allowed by the law in your state. The section
includes space for any other instructions about mental health care.
Part VI
Signature page, on which you and two witnesses sign the advance directive before a notary,
after you have filled in the blanks and made any changes you wish.
As explained above, the Bazelon Center doesnt have the capacity to answer individual
questions about the advance directive and its use. For this, you need to contact your state
protection and advocacy system. However, we welcome your comments and any suggestions for
improving these forms. You can e-mail comments to [email protected].
Psychiatric Advance Directive
A.
Directions for Using the Forms
How to Fill Out the Forms
1. Read each section carefully.
2. Choose which sections you wish to use. Sections I and VI are required. If you arent sure
whether or not you want to use section II, appointing an agent, find out if your states law
requires an agent for mental health decisionmaking. Your state protection and advocacy agency
may be able to tell you. Sections III, IV and V are optional and cover the substance of your
instructions.
3. If you decide to appoint an agentand we encourage you to do somake sure he or she
understands your wishes and is willing to take the responsibility. Your agent and alternate
agent(s) should sign the form to show acceptance of the responsibility.
4. Talk over your choices with your treating providers and your case manager.
5. Fill in only the choices you want in sections III, IV and V. Your advance directive should
be valid for whatever part(s) you fill in, as long as its properly signed. You may cross out and/or
write in words or sentences (or rewrite, if you are editing the document on a computer).
6. To indicate which choices you want, put your initials in the blank at the beginning of a
statement. If you do not want a statement to be true, leave the blank empty.
7. Add any special instructions in the spaces provided. Be sure you also put your initials in
the blank at the beginning of that segment to make your choices valid. You can write additional
instructions or comments on a separate sheet of paper, but be sure to write on the form that
there are additional pages.
8. Complete the checklist attached to section I to show at a glance what your advance
directive covers.
9. Assemble the completed sections, renumber the pages and sign section VI before two
witnesses (see the list on the signature page of people who cannot be your witness). Some states
may require a notarys signature as well; if you are not sure, its best to have the document
notarized.
10. Have copies made and give them to your doctor(s), the individual(s) you have appointed
to make mental health care decisions for you, your family and anyone else who might be involved in your care. Explain your choices to each of them.
Can I change my mind?
You can revise your advance directive at any time unless you have been declared legally
incompetent. However, state laws vary about whether you may revoke your advance directive
or overrule your own agent after becoming incapacitated. Part V spells out some options describing when you want to be able to revoke, suspend or end this advance directive. A lawyer can
explain your states law in this regard. (Note that only a few states have any specific law on this.
As of 2001, Alaska, Hawaii, Idaho, Illinois, Maine, Minnesota, North Carolina, Oklahoma, Oregon, South Dakota, Texas, Utah, West Virginia and Wyoming do.)
Should I see a mental health professional before signing an advance directive?
For your advance directive to be valid, you must be legally competent when you sign it. To
protect yourself against any claim that you were not competent when you signed your advance
directive, you can ask a mental health professional to conduct a mental status exam and note in
your medical record file that you were of sound mind at the time. Ask for a signed copy of this
note, and attach it to your advance directive. This is not absolutely necessary, but it can head off
future challenges.
What to do when you are finished
You want your advance directive to be an active part of your medical record. It is a good idea
to discuss your choices with your case manager and treating providers. Your advance directive is
more likely to be remembered and followed if you have told them about it and explained to
them the choices you made, and why.
When will my advance directive take effect?
Your advance directive will become active, under most states laws, when a doctor, usually
your treating physician, determines that you are not capable of making health care decisions on
your own behalf.
Who should have copies?
Your treating professionals should have copies of your advance directive. Your agent, if you
appoint one, and each alternate agent you name should have a copy. Also consider giving copies
to family members, close friends, the hospitals or programs where you might be taken in an
emergency, your managed care firm (if you have one) and your other service providers. If you
make changes, be sure to let everyone who has a copy know. For this reason, youll want to keep
track of who has copies; a form for doing this is attached to the signature page.
If you travel, be sure to take a copy with you. And keep the original in an easily accessible
place.
How will anyone know I have an advance directive?
A form that advises physicians and others of your advance directive appears below. It is
designed to fit in your wallet. Complete the information on the form, cut it out, fold it in half
and keep it in your wallet.
PHYSICIANS AND OTHERS PLEASE NOTE:
I have an advance directive for mental health decisionmaking, a legal document stating my preferences as to
psychiatric hospitalization and treatment. A copy may be found at: _________________________________________
__________________________________________________________________________________________________
If I am incapacitated, please obtain this document and respect the choices I have registered in it. My name: _____________________________________________ My SS#: __________________________________
I have appointed as my agent for mental health decisionmaking
___________________________________________________________________________________ who can be
reached at __________________________(day) or _________________________ (evening). This person is authorized
to make all decisions about my psychiatric treatment in the event that I am incapable of making such decisions. Reproduction is permitted for personal use and for noncommercial educational or training purposes.
PART I
STATEMENT OF INTENT
I, (your name) ________________________________________, being of sound mind, willfully and
voluntarily execute this health care advance directive to assure that, during periods of incapacity
or incompetency resulting from psychiatric or physical illness, my choices regarding my mental
health care will be carried out despite my inability to make informed decisions on my own
behalf. In the event that a guardian or other decisionmaker is appointed by a court to make
health care decisions for me, I intend this document to take precedence over all other means of
ascertaining my intent while competent.
By this document, I intend to create an advance directive for health care as authorized by state
law, the U.S. Constitution and the Federal Patient Self-Determination Act of 1990 (P.L. 101-508) to
indicate my wishes regarding mental health treatment. To the extent, if any, that this document
is not valid under state law, it is my desire that it be considered a statement of my wishes and
that it be accorded the greatest possible legal weight and respect. I understand that this directive
will become active and take effect upon my incapacity to make my own mental health decisions
and shall continue in effect only during that incapacity.
My wishes expressed in this document should be honored whether or not my agent dies or
withdraws or if I have no agent appointed at the time of the execution of this document. If I
have not named an agent, these instructions shall be binding upon whomever may be
appointed as my agent or other decisionmaker.
The fact that I may have left blanks in this advance directive (i.e., not completed certain sections)
should not affect its validity in any way. I intend that all completed sections be followed. If I
have not expressed a choice, my agent should make the decision that he or she determines is the
decision I would make if I were competent to do so.
If any part of this advance directive is invalid or ineffective under relevant law, this fact should
not affect the validity or effectiveness of the other parts. It is my intention that each part of this
advance directive stand alone. Even if some parts are invalid or ineffective, I desire that all other
parts be followed.
I intend this mental health care advance directive to take precedence over any and all living will
documents and/or durable power of attorney for health care documents and/or other advance
directives I have previously executed, to the extent that they are inconsistent with this
document.
NOTE TO PROVIDER: The next page is a checklist of the sections I have completed. Failure to
follow the instructions in these sections (or the requests of my agent), even in emergency
situations, may result in legal liability for professional misconduct and/or battery. I include this
statement to express my strong desire for you to acknowledge and abide by my rights, under
state and federal laws, to influence decisions about the care I will receive.
Instructions Included in My Directive
Put a checkmark in the box next to each section you have completed.
❏ Designation of my health care agent(s).
❏ Authority granted to my agent.
❏ My preference as to a court-appointed guardian.
❏ My preferences about no termination in the event a guardian or other agent is appointed.
❏ My choice of treatment facility and preferences for alternatives to hospitalization if 24-hour
care is deemed medically necessary for my safety and well-being.
❏ My preferences about the physicians who will treat me if I am hospitalized.
❏ My preferences regarding medications for psychiatric treatment.
❏ My preferences regarding electroconvulsive therapy (ECT or shock treatment).
❏ My preferences regarding emergency interventions (seclusion, restraint, medications).
❏ Consent for experimental studies or drug trials.
❏ Who should be notified immediately of my admission to a psychiatric facility.
❏ Who should be prohibited from visiting me.
❏ My preferences for care and temporary custody of my children.
❏ My preferences about revocation of my health care directive during a period of incapacity.
❏ Other instructions about mental health care.
❏ Duration of this mental health care directive.
Go to Part II of the Advance Directive.
Advance Directive of ____________________________for Mental Health Care Decisionmaking
(your name)
PART II
APPOINTMENT OF AGENT FOR MENTAL HEALTH CARE
Make sure you give your agent a copy of all sections of this document.
Statement of Intent to Appoint an Agent:
I, (your name)___________________________________, being of sound mind, authorize a
health care agent to make certain decisions on my behalf regarding my mental health treatment
when I am incompetent to do so. I intend that those decisions should be made in accordance
with my expressed wishes as set forth in this document. If I have not expressed a choice in this
document, I authorize my agent to make the decision that my agent determines is the decision I
would make if I were competent to do so.
1. Designation of Mental Health Care Agent
A. I hereby designate and appoint the following person as my agent to make mental health
care decisions for me as authorized in this document. This person is to be notified immediately
of my admission to a psychiatric facility.
Note: Make sure to list this person in Part IV of your advance directive.
Name: __________________________________________________________________________
Address: _________________________________________________________________________
___________________________________________________________________________________
Day Phone Number ________________________ Night Phone ___________________________
B. Agents Acceptance: I hereby accept the designation as agent for
(your name) ______________________________________________________________________
(your agents signature)_____________________________________________________________
Designation of Alternate Mental Health Care Agent
If the person named above is unavailable or unable to serve as my agent, I hereby appoint
and desire immediate notification of my alternate agent as follows:
Note: Make sure to list this person in Part IV of your advance directive.
Name: _________________________________________________________________________
Address: _______________________________________________________________________
________________________________________________________________________________
Day Phone Number ________________________ Night Phone _________________________
Alternate Agents Acceptance: I hereby accept the designation as alternate agent for
(your name)______________________________________________________________________
(Your agents signature)_____________________________________________________________
The following paragraphs will apply when you appoint an agent.
2. Authority Granted to My Agent
Initial if you agree with a statement; leave blank if you do not.
A. ________ If I become incapable of giving consent to mental health care treatment, I hereby
grant to my agent full power and authority to make mental health care decisions for me, including the right to consent, refuse consent, or withdraw consent to any mental health care, treatment, service or procedure, consistent with any instructions and/or limitations I have set forth in
this advance directive. If I have not expressed a choice in this advance directive, I authorize my
agent to make the decision that my agent determines is the decision I would make if I were
competent to do so.
B._________ Having named an agent to act on my behalf, I do, however, wish to be able to
discharge or change the person who is to be my agent if that agent is instrumental in the process
of initiating or extending any period of psychiatric treatment against my will. My ability to
revoke or change agents in this circumstance shall be in effect even while I am incompetent or
incapacitated, if allowed by law. Even if I choose to discharge or replace my agent, all other
provisions of this advance directive shall remain in effect and shall only be revokable or changeable by me at a time when I am considered competent and capable of making informed health
care decisions.
3. When Spouse Is Agent and If There Has Been a Legal Separation, Annulment,
or Dissolution of the Marriage
Initial if you agree with this statement; leave blank if you do not.
__________ I desire the person I have named as my agent, who is now my spouse, to remain
as my agent even if we become legally separated or our marriage is dissolved.
4. My Preference as to a Court-Appointed Guardian
In the event a court decides to appoint a guardian who will make decisions regarding my
mental health treatment, I desire the following person to be appointed:
Name:_________________________________________ Relationship:_________________________
Address: ____________________________________________________________________________
City, State, Zip Code: _________________________________________________________________
Day phone: ______________________________ Evening Phone: ____________________________
5. Powers of a Guardian
The appointment of a guardian of my estate or my person or any other decisionmaker shall
not give the guardian or decisionmaker the power to revoke, suspend, or terminate this directive
or the powers of my agent, except as specifically required by law.
BE SURE TO GIVE YOUR AGENT AND ALTERNATE AGENT A COPY OF ALL SECTIONS OF
THIS DOCUMENT
Go to Part III of the Advance Directive.
(your name)
PART III
STATEMENT OF MY DESIRES, INSTRUCTIONS, SPECIAL
PROVISIONS AND LIMITATIONS REGARDING MY
MENTAL HEALTH TREATMENT AND CARE
In this part, you state how you wish to be treated (such as which hospital you wish to be taken to, which
medications you prefer) if you become incapacitated or unable to express your own wishes. If you want a
paragraph to apply, put your initials after the paragraph letter. If you do not want the paragraph to apply to
you, leave the line blank.
1. My Choice of Treatment Facility and Preferences for Alternatives to
Hospitalization If 24-Hour Care Is Deemed Medically Necessary for My Safety
and Well-Being
A. _____ In the event my psychiatric condition is serious enough to require 24-hour care and I
have no physical conditions that require immediate access to emergency medical care, I would
prefer to receive this care in programs/facilities designed as alternatives to psychiatric
hospitalizations.
A1. _____ I would prefer to receive 24-hour
care at the following programs/facilities:
__________________________________
___________________________________
___________________________________
___________________________________
___________________________________
___________________________________
___________________________________
___________________________________
B._____ In the event I am to be admitted to a
hospital for 24-hour care, I would prefer to
receive care at the following hospitals:
_______________________________________
_______________________________________
_______________________________________
_______________________________________
_______________________________________
_______________________________________
____________________________________
C. _____ I do not wish to be committed to the following hospitals or programs/facilities for
psychiatric care for the reasons I have listed:
Facilitys Name:__________________________________________________________________
Reason: _________________________________________________________________________
Facilitys Name: __________________________________________________________________
Reason:__________________________________________________________________________
Facilitys Name: __________________________________________________________________
Reason:__________________________________________________________________________
2. My Preferences Regarding Emergency Interventions
If, during an admission or commitment to a mental health treatment facility, it is determined
that I am engaging in behavior that requires an emergency intervention (e.g., seclusion and/or
physical restraint and/or medication), my wishes regarding which form of emergency interventions should be made are as follows. I prefer these interventions in the following order:
Fill in numbers, giving 1 to your first choice, 2 to your second, and so on until each has a number. If an
intervention you prefer is not listed, write it in after other and give it a number as well.
___ seclusion
___ physical restraints
___ seclusion and physical restraint
(combined)
___ medication by injection
___ medication in pill form
___ liquid medication
___ other:______________________________
Reasons for my preferences:
__________________________________________
__________________________________________
__________________________________________
_______________________________________
_______________________________________
_______________________________________
_______________________________________
_______________________________________
Initial this paragraph if you agree; leave blank if you do not agree.
_______In the event that my attending physician decides to use medication for rapid
tranquilization in response to an emergency situation after due consideration of my preferences
for emergency treatments stated above, I expect the choice of medication to reflect any preferences I have expressed in this section and in Section 3. The preferences I express in this section
regarding medication in emergency situations do not constitute consent to use of the medication
for non-emergency treatment.
3. My Preferences About the Physicians Who Will Treat Me if I Am Hospitalized.
Put your initials after the letter and complete if you wish either or both paragraphs to apply.
A. ______My choice of treating physician is:
Dr. __________________________________
Phone number ________________________
OR
Dr. __________________________________
Phone number _______________________
OR
Dr. __________________________________
Phone number _______________________
B. _______I do not wish to be treated by the
following, for the reasons stated:
Dr. ______________________________________
Reason: __________________________________
_________________________________________
_________________________________________
Dr. ______________________________________
Reason:___________________________________
_________________________________________
_________________________________________
4. My Preferences Regarding Medications for Psychiatric Treatment
In this section, you may choose any of the paragraphs A-G that you wish to apply. Be sure to
initial those you choose.
If it is determined that I am not legally competent to consent to or to refuse medications
relating to my mental health treatment, my wishes are as follows:
A. _____ I consent to the medications agreed to by my agent, after consultation with my
treating physician and any other individuals my agent may think appropriate, with the reservations, if any, described in (D) below.
B. _____ I consent to and authorize my agent to consent to the administration of:
Medication Name
Not to exceed the
following dosage:
_________________
_________________
_________________
_________________
_____________________
_____________________
_____________________
_____________________
OR
In such dosage(s) as determined by:
Dr,
Dr,
Dr,
Dr,
____________________________
____________________________
____________________________
____________________________
C. _____ I consent to the medications deemed appropriate by Dr._______________________,
whose address and phone number are: ________________________________________________
___________________________________________________________________________________
D. _____ I specifically do not consent and I do not authorize my agent to consent to the
administration of the following medications or their respective brand-name, trade-name or
generic equivalents:
Medication Name
Reason for refusal
______________________
______________________
______________________
______________________
______________________
______________________
_________________________________________________________
_________________________________________________________
_________________________________________________________
_________________________________________________________
_________________________________________________________
_________________________________________________________
E. _____ I am willing to take the medications excluded in (D) above if my only reason for
excluding them is their side effects and the dosage can be adjusted to eliminate those side
effects.
F. ____ I am concerned about the side effects of medications and do not consent or authorize my agent to consent to any medication that has any of the side effects I have checked below
at a 1% or greater level of incidence (check all that apply).
_____ Tardive dyskinesia
_____ Tremors
_____ Loss of sensation
_____ Nausea/vomiting
_____ Motor restlessness
_____ Neuroleptic Malignant Syndrome
_____ Seizures_____
_____ Muscle/skeletal rigidity
_____ Other _________________________________________________________
G. _____ I have the following other preferences about psychiatric medications:
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
5. My Preferences Regarding Electroconvulsive Therapy (ECT or Shock
Treatment)
If it is determined that I am not legally capable of consenting to or refusing electroconvulsive
therapy, my wishes regarding electroconvulsive therapy are as follows:
Initial A or B; if you mark B, you must also initial B1, B2 or B3:
A. _____ I do not consent to administration of electroconvulsive therapy.
B. _____ I consent, and authorize my agent to consent, to the administration of electroconvulsive therapy, but only:
B1. _____with the number of treatments that the attending psychiatrist deems appropriate;
OR
B2. _____ with the number of treatments that Dr. __________________________ deems
appropriate. Phone number and address of doctor:
__________________________________________________________________________________________________
OR
B3. _____for no more than the following number of ECT treatments: __________
C. _____ Other instructions and wishes regarding the administration of electroconvulsive
therapy:
_____________________________________________________________________________________
______________________________________________________________________________________
_____________________________________________________________________________________
_____________________________________________________________________________________
_____________________________________________________________________________________
_____________________________________________________________________________________
6. Consent for Experimental Studies or Drug Trials
Initial one of the following paragraphs.
A. _____ I do not wish to participate in experimental drug studies or drug trials.
B. _____ I hereby consent to my participation in experimental drug studies or drug trials.
C. _____ I authorize my agent to consent to my participation in experimental drug studies if
my agent, after consultation with my treating physician and any other individuals my agent
may think appropriate, determines that the potential benefits to me outweigh the possible risks
of my participation and that other, non-experimental interventions are not likely to provide
effective treatment.
Go to Part IV of the Advance Directive.
(your name)
PART IV
STATEMENT OF MY PREFERENCES REGARDING
NOTIFICATION OF OTHERS, VISITORS, AND
CUSTODY OF MY CHILD(REN)
1. Who Should Be Notified Immediately of My Admission to a Psychiatric Facility
If I am incompetent, I desire staff to notify the following individuals immediately that I have
been admitted to a psychiatric facility:
Name:______________________________
Relationship: ________________________
Address: ____________________________
____________________________________
____________________________________
Phone (Day):_________________________
Phone (Eve.): ________________________
It is also my desire that this person be
permitted to visit me: Yes____ No ____
Name:______________________________
Relationship: ________________________
Address: ____________________________
____________________________________
____________________________________
Phone (Day):_________________________
Phone (Eve.): ________________________
Name:______________________________
Relationship: ________________________
Address: ____________________________
____________________________________
____________________________________
Phone (Day):_________________________
Phone (Eve.): ________________________
Name:______________________________
Relationship: ________________________
Address: ____________________________
____________________________________
____________________________________
Phone (Day):_________________________
Phone (Eve.): ________________________
2. Who Should Be Prohibited from Visiting Me
I do not wish the following people to visit me while I am receiving care in a psychiatric
facility:
Name
____________________________________
____________________________________
____________________________________
____________________________________
____________________________________
____________________________________
Relationship
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
_________________________________
3. My Preferences for Care & Temporary Custody of My Children
In the event that I am unable to care for my child(ren), the following person is my first choice
to care for and have temporary custody of my child(ren):
Name: _____________________________________ Relationship: _______________________
Address: _______________________________________________________________________
City, State, Zip:__________________________________________________________________
Phone number: (Day) __________________________ (Evening)_________________________
In the event that the person named above is unable to care for and have temporary custody
of my child(ren), I desire one of the following people to serve in that capacity.
My Second Choice:
Address: _______________________________________________________________________
City, State, Zip:__________________________________________________________________
My Third Choice:
Address: _______________________________________________________________________
City, State, Zip:__________________________________________________________________
Go to Part V of the Advance Directive.
(your name)
PART V
STATEMENT OF MY PREFERENCES REGARDING
REVOCATION OR TERMINATION OF THIS
ADVANCE DIRECTIVE
Initial all paragraphs that you wish to apply to you.
1. Revocation of My Psychiatric Advance Directive
___________My wish is that this mental health directive may be revoked, suspended or
terminated by me at any time, if state law so permits.
2. Revocation of My Psychiatric Advance Directive During a Period of Incapacity
__________ My wish is that this mental health care directive may be revoked, suspended or
terminated by me only at times that I have the capacity and competence to do so. I understand
that I may be choosing to give up the right to change my mind at any time. I expressly give up
this right to ensure compliance with my advance directive. My decision not to be able to change
this advance directive while I am incompetent or incapacitated is made to ensure that my previous, carefully considered thoughts about how I want to be treated will remain in effect during
the time I am incompetent or incapacitated.
2A. __________ Notwithstanding the above, it is my wish that my agent or other
decisionmaker specifically ask me about my preferences before making a decision regarding
mental health care, and take the preferences I express here into account when making such a
decision, even while I am incompetent or incapacitated.
3. Other Instructions About Mental Health Care
(Use this space to add any other instructions that you wish to have followed. If you need to,
add pages, numbering them as part of this section.)
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
4. Duration of Mental Health Care Directive
Initial A or B.
A._____It is my intention that this advance directive will remain in effect for anindefinite
period of time. OR
B._____It is my intention that this advance directive will automatically expire two years from
the date it was executed.
If my choice above is not valid under state law, then it is my intention that this advance
directive remain in effect for as long as the law permits.
Go to signature page.
(your name)
PART VI
SIGNATURE PAGE
By signing here I indicate that I understand the purpose and effect of this document.
________________________________________________
Your Signature
______________________
Date
The directive above was signed and declared by the Declarant, (your name) ________
_______________________________________ , to be his/her mental health care advance directive,
in our presence who, at his/her request, have signed names below as witness. We declare that, at
the time of the execution of this instrument, the Declarant, according to our best knowledge and
belief, was of sound mind and under no constraint or undue influence. We further declare that
none of us is: 1) a physician; 2) the Declarants physician or an employee of the Declarants
physician; 3) an employee or a patient of any residential health care facility in which the
Declarant is a patient; 4) designated as agent or alternate under this document; or 5) a beneficiary or creditor of the estate of the Declarant.
Dated at _____________________________________________ (county, state),
this ___________________ day of ___________________, 20____.
WITNESS SIGNATURES:
Witness 1:
____________________________________ Signature of Witness 1
____________________________________ Name of Witness 1 (printed)
____________________________________ Home address of Witness 1
____________________________________ City, State, Zip Code of Witness 1
Witness 2:
____________________________________ Signature of Witness 2
____________________________________ Name of Witness 2 (printed)
____________________________________ Home address of Witness 2
____________________________________ City, State, Zip Code of Witness 2
(for use by the notary):
STATE OF ____________________, County of ___________________________________
Subscribed and sworn to or affirmed before me by the Declarant, __________________
_______________________, and (names of witnesses) _______________________________ _
and ___________________________________________, witnesses, as the voluntary act
and deed of the Declarant, this ___________ day of _________________, 20__.
My commission expires: ______________________________________________________
__________________________________________________________Notary Public
RECORD OF PSYCHIATRIC ADVANCE DIRECTIVE
Keep this form and give a copy to your agent, if you have appointed one.
_______________________________________________________My name
_____________________________________________________My health care agents name
_______________________________________________________My address
________________________________________________________
_____________________________________________________My health care agents address
_________________________________________________________
______________________________________________________My date of birth
___________________________________________My health care agents telephone number(s)
I have given copies of my psychiatric advance directive to:
___________________________________________________________________Name
_________________________________________________________________Address or phone
___________________________________________________________________Name
_________________________________________________________________Address or phone
___________________________________________________________________Name
_________________________________________________________________Address or phone
__________________________________________________________________Name
________________________________________________________________Address or phone
__________________________________________________________________Name
________________________________________________________________Address or phone
__________________________________________________________________Name
________________________________________________________________Address or phone
__________________________________________________________________Name
________________________________________________________________Address or phone
NOTES
Re-thinking Guardianship
Dohn Hoyle and Kathleen Harris
Guardianship, at one time seen as a benign way to "protect" people with disabilities, is
now seen as an intrusion into a person's basic civil and human rights and a legal process
to be avoided. Guardianship was originally used to handle and control property and
property rights for individuals considered incompetent (or in the language of most
statutes prior to the 50's - "imbeciles, idiots, feebleminded, insane and cretins" "gamblers and ner-do-wells" were sometimes also included). Guardianship of the Person
was added as an afterthought to the duties of a Guardian of the Estate.
Change has come about as part of questions that have been raised since the 70's about the
way our society in general views and treats individuals with disabilities. It was in the 70's
that the first class-action suits were filed regarding the deplorable conditions in
institutions. Such legal actions highlighted the general abuse of the rights of individuals
with disabilities. Courts all over the country began ordering community-based services
and concerning themselves with the enhancement of dignity and the protection of basic
civil and human rights of individuals with disabilities. New laws were passed in
recognition of the need to integrate citizens with disabilities into our communities,
including the Developmental Disabilities Assistance and Bill of Rights Act (DD Act)1 ,
the Individuals with Disabilities Act (IDEA)2 , and the Americans with Disabilities Act
(ADA)3, the most significant civil rights legislation ever passed for people with
disabilities. All these laws have promoted inclusion of individuals with disabilities into
their own communities and brought new awareness of the abilities and contributions of
people with disabilities to our society.
Guardianship laws began to change as well. Many states introduced a list of due process
protections for people who became subject to guardianship petitions such as the right to
hearing, lawyers, and independent evaluations. Most revised laws also express a clear
preference for partial guardianships for limited decision-making power rather than full
guardianship over all possible life decisions.
Even with these changes in the law, individuals with disabilities still suffer from a lack of
due process because of paternalistic attitude and duplicities in guardianship proceedings
that confront persons with cognitive impairment or those with difficulty in
communicating. In fact persons alleged to have committed criminal acts have their due
process rights far more zealously guarded prior to being deprived of their right to life,
liberty or the pursuit of happiness. Before they lose their money or are incarcerated, (in
sometimes remarkable similar types of institutions), they are afforded real due process
protections.
While these legislative changes have been taking place, person-centered planning has
become the planning process for people with disabilities. In Michigan, it has even
become law.4 The person centered planning process is defined generally as a process of
planning for and supporting an individual that honors the individual's preferences,
choices and abilities. The person-centered planning process assumes that all people have
preferences, regardless of their level of disability. Through this process, the person's
preferences are determined by any method possible. In some cases, observations of the
individual's behavior by those closest to them are used to determine preferences. Such
preferences are then honored as long as they are not harmful to the individual. This
process of determining preferences and choices enhances the dignity and selfdetermination of individuals and is far more reliable than having a court-appointed, single
person to make all decisions with or without the input of the individual with a disability.
As the law established person-centered planning and individuals' rights to make decisions
about their treatment options, Self-Determination Initiatives began developing. The
Robert Wood Johnson Foundation provided funding to 19 states for Self-Determination
Initiatives demonstration projects. The projects sprung from reforms that question the
almost total control public funders and providers have over the life choices of individuals
with disabilities and their families. In that system, funds and decisions are allocated to
providers. Individuals with disabilities and their families have little or no say about which
providers are to supply services or what those services should be. Changing this
imbalance of power and control is the goal of self-determination. Decision-making by the
individual is key to this effort. Obviously, appointing a guardian to make decisions for
the individual can defeat this process. However, asserting that each individual should
make their own decisions doesn't mean that each individual doesn't need help, assistance
and support.
The Iowa Supreme Court has recognized that outside supports for an individual may
negate the need for guardianship.
In making a determination as to whether a guardianship should be established . . .
the court must consider the availability of third party assistance to meet a . . .
proposed ward's need for such necessities . . .5
Tom Nerney, Executive Director of the Center for Self-Determination has stated:
We have to reject the very idea of incompetence. We need to replace it with the idea
of "assisted competence". This will include a range of supports that will enable
individuals with cognitive disabilities to receive assistance in decision-making that
will preserve their rights . . .6
Thus, just as supports have evolved since the 70's to assist individuals with disabilities to
participate in education, employment, housing and other community opportunities,
supports are now evolving to assist people in decision-making. "Assisted living" has
replaced institution living, and "supported employment" has provided more job
opportunities. "Assisted competence" is now continuing the evolution that enables people
with disabilities the dignity and freedom to develop and participate in the lives they want
and choose.
Stanley S. Herr, Professor of Law, University of Maryland School of Law has studied
guardianship laws over the world. He states:
A number of countries have adopted new legislation in recent years to minimize the
use of guardianship, to impose only its least restrictive alternatives, and to introduce
other innovations . . . The imposition of guardianship posed important ethical, legal
and practical problems for the disability rights community . . . The ethical questions
involve ideas of paternalism, liberty, prevention of harm and exploitation,
beneficence, and the power relationships between guardian and ward. Finding
better answers will implicate vital principles of self-determination, including
freedom, authority, support and responsibility.7
Thus, support systems in most states are exploring alternative means to guardianship and
ways to restrict the effects of the imposition of guardianship on the choices of individuals
with disabilities.
These efforts have resulted in the development of many alternative methods to handle
decision-making that assist individuals with disabilities and their advocates. For instance,
the use of durable powers of attorney are used in order to designate a person to discuss
and make decisions about medical decisions, living situations, confidentiality issues and
other areas of concern. In this way, family members or others who have always assisted
the individual in making such decisions can continue to do so without filing a petition to
become guardian and actually take away the right of the individual to make such
decisions. The power of attorney allows the individual to give that power to someone,
and they can also take away that power if they become unhappy with the decisions being
made. Many state laws will allow for such powers of attorney and also recognize that the
level of informed consent needed to execute such a document is lower than that needed
for other legal arrangements under law. As an example, in Michigan the standard for
executing a medical power of attorney is that the individual must be "of sound mind",
which is the same standard as seen in the realm of Michigan wills and testaments. In
order to execute a will, "average mental capacity at the time of the execution of the will is
not necessary to its validity. A less degree of mind or capacity is requisite to execute a
will than to make a contract covering the same subject matter."8
Another example of devising alternatives is the concern about who will take care of the
individual's money if they are totally unable to handle it themselves. The majority of
people with developmental disabilities are recipients of Supplemental Security Income.
(SSI) For these and other governmental benefits, the government will designate a "payee"
- someone to receive and disburse the money for the individual if the person is
determined incapable of managing the funds him/herself. A guardian of the estate or
conservator would be a duplication of this function. If a substantial amount of money
comes into the individual's life, there are trust documents that can be drafted that can
protect the governmental benefits and still use the funds to provide an enhanced life for
the individual. A trustee or co-trustees can be designated to distribute the funds and see
that the individual's needs and desires are met. Such a trust can specify that someone visit
the person and assure that the individual is satisfied with their living situation and support
systems. This is more than the imposition of a guardian or conservator can do for an
individual and gives more peace of mind to parents who worry about what will happen to
their child when they are gone. A knowledgeable attorney should be consulted about
these trust documents.
The above are major alternatives to guardianship, and there are many more that can be
devised. There are as many alternatives as there are issues. Education of those
recommending guardianship is needed as many professionals and lay people, as well as
court personnel believe guardianship is the only way to resolve many issues that can be
handled through less intrusive methods. We need to stop applying a legal solution to
personal issues that can be handled through a person-centered process.
Putting an end to the systematic removal of rights and the concomitant removal of
protections for people with disabilities needs to be a priority. This would mean a different
way of doing business. Those who care about an individual with a disability and those
who make their living because of individuals with disabilities, have an obligation to
discover what people like and don't like, what their desires and preferences are. We
should employ the many alternatives which currently allow people to avoid guardianship
altogether. Ultimately, we can use the framework of person-centered planning and selfdetermination to obtain the optimum choice making. We can assure individuals with
disabilities, including those with cognitive disabilities and disabilities that impair their
communication, access to life, liberty and pursuit of happiness. Plus, we will have
eliminated an unnecessary barrier to individuals' opportunity to seek their piece of the
American dream.
1
42 U.S.C. § 6012
20 U.S.C. §1400 et seq
3
42 U.S.C. 12101 et seq
4
MCL 330.1712; MSA 14.800 (712)
5
In the Matter of Hedin, Iowa Supreme Court, (1995)
6
Common Sense, Issue 6 - 1999; a publication of the National Program Office on SelfDetermination, University of New Hampshire, Insititute on Disability, funded by the
Robert Wood Johnson Foundation
7
Id
8
Bean v. Bean, 144 Mich 599, 108 NW 369 (1906).
2
SELF-DETERMINATION, AUTONOMY AND
ALERNATIVES FOR GUARDIANSHIP
By
Stanley S. Herr, Professor of Law
University of Maryland School of Law
Introduction
Self-determination involves the struggle for control and a voice in the key personal decisions that affect
the individual. On its face, guardianship seems to be antithetical to self-determination, as it tends to shift
the locus of control from the affected individual to a legally empowered agent (the guardian). A number
of countries have adopted new legislation in recent years to minimize the use of guardianship, to impose
only its least restrictive alternatives, and to introduce other innovations. This paper sketches those
developments as well as related legal reforms in personal supports that enable people with disabilities to
obtain companionship for support and other discrete forms of assistance.1
The imposition of guardianship poses important ethical, legal and practical problems for the disability
rights community. Those problems also arise for some persons who are elderly, and for other
"vulnerable" people, however they are labeled, whose right to make their own decisions is challenged.
The ethical questions involve ideas of paternalism, liberty, prevention of harm and exploitation,
beneficence, and the power relationships between guardian and ward. Finding better answers will
implicate vital principles of self-determination, including freedom, authority, support and responsibility.2
In particular, it challenges policymakers and other leaders to devise new modes for self-determined
personal support through which the individual with a disability, "with the assistance of a personal agent
and others the individual invites to participate, has the authority to plan for his or her own future and
oversee the implementation of those plans."3
The issues of this monograph are best viewed through a comparative law perspective. Do other countries
minimize the use of guardianship? Do they find alternatives to both maximize the individual's autonomy
and to offer community-support services that aid the individual to participate in society's
decision-making processes? Those processes can include medical, financial, rehabilitative, and other
surrogate-based protective service systems. For instance, Sweden's "god man" (mentorship) law covers
those various decision-making spheres for persons with protective service needs.
The community-support problems will become more acute as institutions are downsized or eliminated.
Institutions were once described as the "poor man's guardianship" since the residents were under the
plenary power of institutional staff who exerted a defacto guardianship. Yet nursing homes and other
congregate care facilities are now under federal legal mandates to counsel residents and their families on
proxy decision-making. Unfortunately, such mandates may indirectly lead to more persons being placed
under guardianship as a matter of administrative or medical convenience.
Guardianship in some parts of the U.S. has become an overused legal institution in danger of collapse. It
can be a blunt device for managing an alleged incompetent person's property, assuming control over his
or her personal decision-making, and gaining plenary authority over virtually every aspect of financial
and personal management. To some of its critics, it is a "dangerously burdened and troubled system that
regularly puts the lives of persons with disabilities and persons who are elderly in the hands of others
with little or no evidence of necessity, then fails to guard against abuse, theft and neglect."4 The legal and
scientific literature is also replete with criticisms of the law and practice of involuntary guardianships
involving persons with mental or physical disabilities.5 Scholars and reformers have documented the risk
of such guardianships and similarly coercive measures intruding on fundamental liberties and privacy
rights, employing vague criteria, failing to tailor appropriately and narrowly the scope of the guardian's
authority, denying procedural safeguards, and lacking adequate monitoring and periodic review.6
Despite these perceived shortcomings, more people are being subjected to guardianship proceedings,
most often due to their inability to consent to medical care. Because informed consent to treatment is a
requirement of the common law of most American states as well as a mandate of the federal Nursing
Home Reform Act of 1987,7 health-care providers are understandably concerned when a potential patient
appears to lack the capacity to provide such direct consent. In part due to their lack of familiarity with the
alternatives, service producers often propose guardianships when less restrictive solutions would suffice.
Such problems are not only nationwide, but are encountered in Western European and other
industrialized countries.8
There is a global search for personal support solution that are empowering and not disenfranchising. In
noting the self-determination movement's focus on empowerment, Thomas Nerney and his colleagues
point out that adults "develop their own capacity and competency for self-determination."9 But adults do
not gain that knowledge, skill, and experience from thin air, and some adults will require patience and
personalized supports to enhance their self-determined options. It is the task of humane 21st century
societies to recognize that the capacities of people with disabilities are not static, to help them to learn
and grow, and to support wide-ranging choices commensurate with the individual's aspirations and
needs.10 Such societies will spend more time listening to people with disabilities, and less time dictating
to them based on the presumed superiority of the expert's answers. Such societies will reallocate
resources so that instead of proffering only restrictive options, laws and policies will offer
self-determination enhancing and cost-efficient support options.
a) The U.S. Position: On The Edge of Reform
Consumer and professional groups in the U.S. are concerned over both under?protective and
over-protective approaches to meeting protective service and community-support needs. The issues are
legally, ethically, and politically sensitive as well as technically complex since some individuals have
legitimate needs for assistance.11
There are other sources of complexity as well. First, the U.S. legal position is not one approach, but 51
approaches since state laws and practices vary from jurisdiction to jurisdiction. Second, depending on the
context, the laws of anyone slate may offer many alternatives to plenary guardianship (e.g., limited
guardianship, temporary guardianship, health care proxy decision-makers, representative payees for
income maintenance benefits, supported training for self-advocacy, etc.). Third, and most distressingly,
the resulting confusion and lack of training as to which option to use to maximize autonomy can lead to
the unnecessary disempowerment of some persons with disabilities, the fragmentation of
decision-making responsibilities, the undue cost and delay of overly legalistic models, and the failure to
search vigorously for available least restrictive alternatives.
Despite these difficulties, the U.S. is poised for reform in this field. Some of the reasons for this
confidence include:
●
●
●
●
●
the growing interest in making self-determination a reality for all people with disabilities;12
a vigorous advocacy movement that criticizes and seeks to change overly protective or
discriminatory laws, policies and practices;
a system of federalism in which states, in Justice Louis Brandeis' memorable phrase, "are
laboratories for innovation";13
Constitutional limitations and the potential for media exposure and legislative and judicial
oversight to identify and correct the most flagrant abuses of power over persons with disabilities.
For example, in one notable case, an appeals court overturned some 100 guardianships that were
imposed during a single morning's "assembly-line" judicial session;14
increasingly popular communitarian ideas stressing the importance of interdependence in social
relations approaches to complement individual rights approaches.15
b) The Swedish Position: Offering Support Options
Sweden has replaced guardianship with two forms of assistance. The primary and less restrictive form of
support is called "the god man" (translated into English as "good man" or "mentor"). The god man is
intended to be a helping and supportive aide, far different from the coercive authority figure some
guardians become. In general, this statutory-based and publicly funded role provides a helping and wise
advisor rather than an overseer with directive powers over the lives and properties of persons with
disabilities. Based on interviews with a range of knowledgeable informants, the Swedish experience with
the god man on legal, policy, programmatic and personal levels has been very positive. As this study
documents, Sweden is one of the most advanced countries in developing legal techniques to reinforce
rather than disregard a person's capacity for making choices.
The second form of assistance is the Forvaltare, which Swedish legal authorities translate as
administrator or trustee.
Legal Background
Sweden's remarkable progress in disability policies and programs is anchored in national law. For
instance, the mental retardation law of 1967 created entitlements to services that led to rapid gains in
community-based habilitation and individualized services for even the most severely disabled
individuals.16 Another historic milestone came in 1985 with a law requiring the phasing out of all special
hospitals and institutions, prohibiting new admissions, and mandating a variety of guidance and support
measures, including the services of a "contact person."17 Effective January 1994, the mental retardation
law was replaced by the broader law on support and services for certain disabled persons [hereinafter
LSS]. The LSS provides comprehensive services as entitlements for persons with severe physical or
mental disabilities, a category estimated to number 100,000 persons in a national population of over 8
million people. Not all services that benefit persons with disabilities are covered by the LSS, and the
focus of this study is the "parent law" (Foraldrabalken) which regulates guardianship and some of the
less restrictive alternatives under the topic of parent-child obligations and relationships. In an amendment
to this law, which became effective January 1, 1989, the Parliament (Riksdag) restricted guardianship to
minors under the age of 18. Sweden thus became a pioneer in abolishing guardianship for adults with
disabilities.
Disability services are highly decentralized. Although the national government legislates, regulates and
offers guidance on the provision of disability services, responsibility for their implementation has
devolved from the county to the municipality (kommune). For instance, each of Sweden's 270
municipalities has an office of public trusteeship administration, formerly known as offices of the "Chief
Guardian," that is charged with oversight of good men and forvaltares. Part of the success of national
reform initiatives stems from the willingness of the national government to subsidize the local
governments, such as the decision to supply two billion kroner for creating new group homes and other
community-living arrangements for persons exiting institutions to be closed. Another example of the
national government's efforts to gain support from local authorities is the decision to fund the excess
costs of new services under the LSS through the national budget. The LSS also sets the dividing line of
20 hours of weekly personal assistance as the point where the national government assumes the full cost
of those services. (See below for further discussion of the personal assistant and the potential for local
manipulation of this cost since the municipality will determine in the first instance the number of hours
of personal assistance required).
Appeal to the courts is liberally provided under Swedish law. Thus, a person aggrieved by a
determination of their need for personal assistance or other LSS provision can proceed through three
levels of the court system: district court (Lansratt), appeal court (Kammaratt), and Supreme Court
(Regeringsratt). Recent court decisions demonstrate that the courts are vigilant in protecting the civil
rights of persons in god man proceedings and in enforcing entitlements even in the face of municipality
arguments of insufficient funds.
In general, the political parties are supportive of disability policies and the legal reforms of the past two
decades have been marked by a high degree of consensus among politicians, professionals, consumer
activists, administrators, and the public.
God Man (Mentor)
Mentorship is now the preferred and predominant method of support service. According to the Swedish
National Board for Judicial Administration, in 1992 some 28,000 Swedes had mentors and 4,000 had
administrators. By December 1999, the numbers of persons with mentors had swelled to about 40,000
while the numbers of Swedes with administrators had declined to 3,500. The law requires that mentors be
appointed instead of administrators whenever possible.
Mentorship has been in existence since 1976. At the time, some 30,000 Swedes were under guardianship.
But by 1985, the availability of the mentor option had reduced the number of persons under
guardianships to 17,000.18
As previously noted, guardianship has now been eliminated. This change was largely out of concern for
the loss of the right to vote and the imposition of other legally imposed disabilities that stigmatized the
individual and heightened his or her sense of social inferiority.
In contrast, the appointment of a god man does not alter the civil rights enjoyed by a person with a
disability. The god man is to act with the consent of the person, and has rights and duties that roughly
correspond to the authority of a person acting as a power of attorney.19 However, a god man can be
appointed for a person incapable of giving consent.
Such appointments are made by a district court and can be tailored to the specific needs of the individual.
The duties can be limited to representation for individual rights (e.g., making an application on appeal for
special services); supervision of financial matters (e.g., administering property), and/or attending to the
person's other needs for support and guidance. The law emphasizes acting with the person's volition.
Indeed, it gives the person remedies against the mentor who acts outside of his authority or who attempts
a transaction where the person "would have been able to give his consent but did not do so."20
As a flexible form of support, mentors may be appointed in a wide range of circumstance. The main use
is for persons whose mental retardation, illness, or deteriorated health places that person in need of help
for looking after their legal, financial, or personal interests. Other uses are to tend to the affairs of
refugees, missing persons, or Swedes living abroad. For persons with disabilities, most appointments are
by consent. For those persons incapable of giving consent, the court may appoint a god man upon a
medical certification of the person's lack of capacity to consent.
Procedures for appointment are relatively informal, fast and without cost to the person. Application to the
district court can be made by the person, a close relative, or the public trustee. Since most cases are based
on direct consent, and a review of the documents by the court, the person need not appear and no hearing
is scheduled. In routine cases, the appointment process takes only two to three weeks to complete, with
the judge writing the protocol (court order) in ten minutes or so.
Complex cases, while infrequent, may take months. In one notable recent case, a Stockholm judge
rejected the public trustee's recommendation of a god man for a mentally ill man who wished to retain his
apartment, even though his recent physical disabilities made it inaccessible to him. The judge reasoned
that the loss of the apartment where the man had lived for 50 years and the autonomy it implied could
harm his rehabilitation, and that the better course of action would be to not take authoritarian steps but to
first informally aid the man to obtain a physically accessible apartment before counseling him to
surrender his old, familiar apartment.
Courts are generally vigilant in safeguarding the civil liberties at stake. In one recent case in which the
lower courts failed to provide a hearing for an individual deemed senile who requested it, the Supreme
Court criticized the failure to grant a hearing and remanded for a hearing on whether the person was in
fact incapable of consent as the medical certificate alleged or was in need of other protection. Another
exceptional case was problematic from a statutory viewpoint. A god man was imposed on a 90-year-old
woman who had initially requested one and then sought to revoke her consent. The judge nonetheless
declined to cancel the appointment since there was evidence that a 70-year-old man was financially
exploiting this senile woman and had already drained 80,000 Kroner of her 200,000 Kroner assets.
Although the statute appeared to require a medical certificate, the woman refused to consent to a medical
examination and the Court, composed of a professional judge and lay judges (somewhat analogous to the
jury concept), ordered the god man appointed based on the court's own observations at the hearing of the
woman's obviously senile condition. The judge (who was interviewed for this study) had hoped that the
woman would appeal to test this unusual exercise if the court's jurisdiction in a lacuna of the law, but no
appeal was ever taken in a case which appears to have involved an involuntary appointment without a
medical report. However, informants suggest that this is a rare exception to the rule of consent and that
lay judges remarked that quality of judicial scrutiny and rigorousness of review was quite high.
God men are paid for their services. This proposition also holds true for relatives, who are the most
common source of appointments.21 The annual fee is normally around 7,000 Kr. (less than $1,000).
However, fees as high as 150,000 Kr. have been approved by the Public Trustee in a complex case. Fees
are sometimes awarded in the range of 15,000-20,000 Kroner. Although professionals (lawyers,
accountants, social workers, etc.) may sometimes have a caseload of 10-20 wards, the more common
practice is a one-to-one relationship. Consumer activists report that in addition to parents and siblings,
god men are often recruited from the ranks of the police, retired teachers, social workers, bank
employees, and politicians who wish to display their civic-mindedness. If the individual with a disability
lacks funds, the municipality will bear the expenses of the god man.
In the Stockholm office, the overwhelming proportion of users of adult protective services are elderly. As
of December 1999, 375 had Administrators and 4,995 had god men. [Seven years earlier the respective
numbers were 163 with Administrators and 3324 with god men, thus the trend is to greater use of both
types of supports]. The powers of these support persons are limited to be no more invasive than
necessary. In Stockholm in 1999, Henrik Hoogland, head of the Stockholm Public Trustees
Administration, estimated that 30% of the Administratorships were so limited, and 25% of the
Mentorships. In 1992, his predecessor, Public Trustee Sehlin, found comparable estimates for limited
powers of 25% and 40% respectively. The most common form of limitation is to economic and financial
matters (forvallaegevloan), as distinguished from matters pertaining to legal rights (bevakaratt) or
custody of the person (forja for personen).
Recruitment of the right type of person to be a god man is sometimes a problem. FUB (The Swedish
Association for Persons with Mental Retardation) takes the view that most persons with mental
retardation should have a god man as an adult. (The Swedish definition commonly limits this category to
some 30,000 persons, based on cut-offs of severity set far lower than in the U.S.). Their representatives
are concerned that the municipalities are largely passive, and do not take active steps (outreach) measures
to identify persons needing such appointments and to supply that need such mentors. FUB's president is
also concerned that many god men now lack the training, information, and motivation to fulfill the role to
its true potential. Therefore, Elaine Johnsson recommends that god men receive more systematic training
and orientation on the rights of persons with disabilities and their responsibilities in helping to realize
those rights. She views the passage of the LSS as "a golden opportunity" for providing that orientation to
god men, staff, consumers and their families.
A number of informants had additional suggestions for improving Sweden's mentorship arrangements.
These suggestions included:
● greater attention to the personal support aspects of the role by god men as distinguished from the
current emphasis on its financial aspects;
● closer oversight by Offices of the Public Trustee of the non-financial aspects of the mentor's
responsibilities;
● more timely payment of the mentor's expenses to avoid some recruitment problems;
● more frequent replacement of god men who fail to discharge their duties or act in a way contrary to
their ward's interests;
● more coordination between welfare authorities and offices of the public trustee to encourage
greater use of the god man as an agent to help persons with disabilities to understand a complex
Filthy Lucre
●
●
and changing network of services and legal entitlements, to more from institutions to apartments,
and to cope with a greater number and variety of choices posed by living in Swedish mainstreams;
energizing and motivating those god men who lack enthusiasm or who perpetuate the old model of
guardianship authority in dealing with individuals with disabilities; and
other steps to realize the principles of human dignity and the least restrictive alternative that are
central to the premises of modern Swedish law.
Despite such shortcoming and inevitable inconsistencies, Swedes express considerable satisfaction in the
theory and implementation of the law on god men and forvaltare. The critiques noted above are also
healthy signs of the advocates' vigilance and the disability system's desire for continuing improvement.
Forvaltare (Administrator or Trustee)
The Forvaltare is now the device of last resort when other forms of assistance are insufficient, such as
when the person with a disability objects to the decisions or appointment of a god man and property or
personal interests would otherwise be seriously jeopardized. Unlike the god man who must act in
consultation with the person, the administrator may take substitute decisions. This legal role resembles
that of the guardian, except that person retains the right to vote in general elections.
This universality of the franchise is truly remarkable. It signals that no Swede is a second-class citizen
barred from political participation on account of disability. In contrast, 42 U.S. states and 3 U.S.
territories bar some individuals with mental disabilities from voting.22 Sweden no longer draws such
exclusionary lines, and even permits the person with a disability to receive assistance in exercising the
right to vote. Even though persons with a forvaltare have such equal civil rights, they do retain
significant legal protections from any seriously improvident act. For instance, a person who has an
administrator with unlimited authority and who nonetheless enters an economic transaction that he or she
is not entitled to undertake will be fully protected. The administrator can not only have the transaction
canceled, but can reclaim any monies spent without the person with a disability having any duty to
compensate the merchant for any loss.2324 Courts, however, often will limit the authority of the
forvaltare, perhaps only limiting the person's ability to use credit cards, make expensive hire-purchase
(installment payment) arrangements, sell valuable real estate, or manage a particular bank account.
Public Trustee Sehlin anticipates an increase in the number of such appoints as more individuals with
severe disabilities prepare to leave mental hospitals and special institutions to live in the community.
Given the serious consequences of such appointments, and the power of the administrator to act without
the individual's assent, such cases are subject to greater judicial scrutiny, unlike god man proceedings, a
lawyer is often appointed to represent the alleged disabled individual.
A less legalized model is also under consideration. An official report, titled "Parents as Administrators,"
has the support of the Association of Public Trustees and urges the delegation of appointment powers
from the judiciary to the public trustees.25 Judicial opinions on this proposal was divided with one judge
favoring this administrative model since most cases are uncontested while a younger colleague felt that
giving the individual the possibility of "a day in court" offered a useful libertarian check-and-balance.
For now, the court role remains in the appointment, removal or replacement of mentors and
administrators, and the potential review of their annual accounts.
Personal Assistant
Another means of maximizing autonomy is the liberal use of personal assistants, hired (and if necessary,
fired) by the person with a disability acting as an employer. Although government funding of personal
assistants has been a matter of discretion since the 1970s, the LSS made it an entitlement service as of
January 1994. Consumer activists and officials expressed national pride in the new law and its showpiece
feature: free personal assistant services according to the individual's needs.
Under the prior law, municipalities could be quite generous even under discretionary schemes. For
instance, one Stockholm woman informed me that she received 188 hours per week, with the annual cost
of this benefit amounting to 900,000 kroner a year. As the mother of a one-year-old and a two-year-old, a
part-time employee in a center for independent living cooperatives, and a person with quadriplegia, she
required double coverage at some parts of the day. In her opinion, the new law transformed this service
from a charity to a right, and permited people with severe disabilities to live anywhere in Sweden.
Surprisingly, this measure and the LSS in general passed the Parliament with little debate. Section 2 of
the LSS makes the personal assistant a mandated support service that can either be provided directly by
the government or by a cash allowance to the person with a disability.
The lack of opposition to this measure is attributed to a variety of factors. First, the Swedish political
consensus on disability policies would not make it easy - or politically palpable - for any party to oppose
greater independence for persons with disabilities. Second, Bengt Westerberg - the Minister for Health
and Social Affairs, Vice Prime Minister, and leader of the Liberal Party - is also credited with
spearheading the passage of the LSS. During the last election, he had campaigned on a pledge of passing
such a law on disability rights. True to his word, he invested his significant political and personal
prestige to winning support for the LSS. Some political observers noted that the Minister of Finance was
a colleague of the same political party, and the endorsement of that Ministry was of critical importance to
enactment of the LSS. The costs of personal assistants were projected to run 2.5 billion kroner annually,
with the average user requiring 40 hours per week of assistance. Since the national government would
bear the entire cost of assistants for those using over 20 hours per week, these estimates were important
in convincing the political leadership that this entitlement was manageable. In fact, as of January 2000,
the total cost for personal assistance is an estimated 6.5 billion kroner annually, 6 billion of which is paid
by the national government and the balance by the municipalities.
The law contains certain limitations on eligibility. To keep the costs within determinate limits, the users
must be under the age of 65. (The government is now reevaluating this limit, and expects to report by the
fall of 2000 on the feasibility of permitting persons over the age of 65 to retain their personal assistance.)
Persons living in institutions or in group homes are also outside this program's reach. The person must
average a need for more than 20 hours a week to receive funding from the national government. (For
those with fewer hours of service needs, the municipality remains the source of funding.)28 The national
program is administered by the Social Insurance Office. But unlike other insurance programs, personal
assistants will be funded entirely from the national budget, and not from employers' contributions.
The informants for this study were cautiously optimistic about the implementation prospects for this
personal support service. One consumer activist noted that the Social Insurance Office was unfamiliar
with running this type of direct-service program and its officials would need considerable advice and
training from groups like STIL (Stockholm Cooperative for Independent Living) to ensure an effective
program. A government official who helped to design this law countered that the Social Insurance Office
would have almost a year to gear-up to run it, sufficient lead time for them to learn how to carry out this
new mission.
The same activist also pointed out that persons with disability would need training and counseling
themselves to make appropriate use of personal assistants. She wants such persons to be "good
supervisors" and not treat personal assistants "like servants," noting that people who had so long been
oppressed - "who couldn't choose more than the type of sandwich to eat" in their formerly restrictive
living environments - would have to work through familiar dynamics of oppression. She also noted that
her cooperative of 95 members, some 20 members might need help in managing their support resources.
Although most members of STIL are physically disabled, anyone can join and some members also have
Down syndrome or other mental limitations. While the personal assistant concept was first concerned as
an aid primarily for persons with mobility limitations, the law makes it open to persons with physical or
mental disabilities. The Report of the 1989 Disability Commission, a special parliamentary commission
appointed by the Government to make recommendations that led to reforms in the law for persons with
severe functional impairments, underscored the inclusive nature of this provision:
We feel that the availability of [personal] assistance must be reinforced, so as to improve
freedom of choice, autonomy and continuity in the personal living situation.
We therefore recommend that LSS be made to include entitlement to a personal assistant for
everybody who can be deemed to need such a measure and who is included in the
population to which LSS refers. The personal assistant input also implies that the individual
decides or does a great deal to influence who is employed as an assistant, and also that the
individual must exert a great deal of influence on the time of help. Improved availability of
personal assistance will also augment the possibilities of coordinating the personal support
now provided in homes, at work and in schools. We also take the view that the introduction
of entitlement to a personal assistant will facilitate the resettlement of intellectually
handicapped persons and long-term mental patients, for example, away from institutions.29
In summary, Sweden has undertaken a revolutionary legal reform that deserves worldwide attention.
Many questions await further study. Will the implementation experience under the LSS avoid undue
manipulation of determined hours of need - and thus costs - by municipalities? Will user and cost
projections prove reliable? Will regulations and administrative criteria fulfill the framers' liberal and
inclusive intentions? Will persons with severe disabilities receive sufficient training and orientation to
make appropriate use of this service? Four years after the law's implementation, the statistics are
encouraging. Some 8,350 Swedes with disabilities receive over 20 hours per week of personal assistance.
Another 4,000 people receive aid under other components of the LSS. An estimated 25,000 personal
assistants are providing this service as of the year 2000 because some people with disabilities require
more than one personal assistant in the course of a week. In summary, with personal assistance provided
as a matter of right, Sweden's new law has proven a dramatic step forward in the field of disability rights
and policies.
Escort Person
The LSS also creates a new entitlement to the services of an "escort person." This escort service is listed
as one of the ten statutory support services.30 Formerly this support was limited to blind persons who
needed help to attend some special event and was provided through the social security law. This
program, however, was viewed as not functioning very well. Under the new law, a person who did not
have a personal assistant but who was eligible for LSS services could arrange for an escort to accompany
him or her to the cinema, a football match, or similar visit to a leisure-time activity. The person receiving
this service would contact an office in the municipality, and might plan some regular trips (say once or
twice a week), or could schedule for special events more flexibly. Here again the State will assume the
excess costs of the municipalities beyond the existing level of escort services.
Architects of the LSS, such as Carl Leczinsky who formerly worked in the Ministry of Health and Social
Affairs and is now the executive director of the National Board on Personal Assistants, believes that such
support provisions will not be abused. He is confident that people with disabilities so prize their privacy
that they will not unnecessarily or frivolously request the services of an assistant or an escort. Clearly the
availability of an escort can help certain persons with severe disabilities to explore the world with greater
confidence and safety.31
Implementation Prospects Under the Law on Support
and Services for Certain Disabled Persons
Plans for the LSS were made during the late 1980s at a time when the economy was more auspicious and
social service expectations were higher. This spirit is captured in the two excellent English language
summaries of the work of the 1989 Commission on Policies for the Disabled, Disability, Welfare,
Justice, presented in May 1991,32 and A Society for All: Summary, the Commission's final report issued
in 1992.33 The Commission criticized the existing "patchwork quilt" of individualized measures, and
called for simultaneous, right-based efforts "to assure disabled persons of basic opportunities of social
participation," and "to develop and guarantee general accessibility and distinct assumption of
responsibility in every social sector, with regard to matters affecting the disabled."34 These sweeping
objectives were to be carried through detailed recommendations on equality and participation to make
society "accessible to people with functional impairments."35 Priority sectors of society included: 1) the
right to basic public information, 2) local government activities, 3) housing and environment design, 4)
culture, media and teaching materials, 5) travel facilities, 6) the right to basic telecommunications, 7)
access to the employment sector, and 8) the right to legal protection against discrimination in "the
enterprise sector." The Commission also proposed an amendment to the Swedish Constitution that would
declare that law or other regulations must not imply that some citizens can be discriminated against due
to disability.36 It should be emphasized that not all of the Commission's recommendations were adopted
by the Government, and that opposition to the constitutional amendment can be anticipated. Yet the
significance of these documents - based on six successive reports - is that Sweden has a detailed
blueprint, with actual funding and implementations priorities expressed, to permit persons with severe
disabilities "to share, on the same terms as other members of the community, in the growth of national
prosperity."37 With some of these costs and adjustments spread out for periods of as long as 15 years, the
Commission estimated a "total annual cost only about 0.1 per cent of GDP" (gross domestic product),
resulting in expenditures in each societal sector on what it described as "a very modest scale."38
The LSS has many innovative features. The definition of "certain disabled people" include persons with
mental retardation, autism or autistic-like conditions, persons who became severely brain-damaged as
adults, and (a new category under Swedish disability law) other persons with physical or psychiatric
disabilities that are not dependent on old age and result in severe difficulties in daily living and
significant needs to overcome such difficulties.39 The Act lists ten support services, with only the tenth
one being unavailable to persons in the new category. These entitlements are:
1. counseling and other personal support services (such as habilitation services and therapies in the
fields of psychology, social work, etc.).
2. personal assistants
3. escort services
4. contact persons
5. respite care in the home of a parent
6. respite care outside the home of a parent
7. after-school recreation program for children over age 12
8. housing in special apartments for adults
9. housing for children who cannot live in their own homes and require a "family home"
10. daily activity centers40
The LSS offers a broad right of appeal from any denial of such services. For example, local government
officials will determine the number of hours of personal assistance an individual "needs for daily
living."41 An individual aggrieved with that determination might appeal to a special board of the Social
Insurance Office. If still dissatisfied, the person with a disability may go to the courts and make their way
through as many as three levels of judiciary. It is no wonder that representatives of STIL expressed
interest in developing a legal aid program and in receiving materials on the U.S. experience with the
legal services for persons with disabilities!
The Swedish model seems based on offering multiple forms of support. In theory, an individual could
have a god man and a person's assistant, or a god man and a contact person. Thus, measures can be
labored to the unique needs of the individual. Other statutory supports include assistance in the labor
market with an estimated 20,000 Swedes receiving practical help on their jobs with allowances paid to
their employer (ranging from a few hundred kroner for technical working aids to over 170,00 kroner a
year for sheltered employment on a yearly basis). Specialized support in higher education is anticipated
to cover some 1,000 persons annually in universities, technical schools, and adult-folk school. Sweden
seeks to cover most support needs, offering real, concrete help to increasing the individual's autonomy in
daily living, work, education and leisure-time activities. Officials and activists can be justifiably proud of
the new law's promise, hailed as "the biggest reform" in Sweden's policies on disabilities.
Evaluation of Swedish Legal Reforms to Increase Autonomy and Integration
Sweden has made steady progress in moving persons with disabilities into the mainstreams. Legal
reforms and legal institutions have played significant parts in those advances. This assessment is based
on the following trends:
1. Statutory coverage is broader. Sweden has replaced a law that focused on mental retardation with
one (the LSS) that encompasses the range of severe disabilities.
2. Guardianship has been effectively abolished. Sweden now offers a continuum of supportive
services, none of which disenfranchise adults with disabilities, regardless of the degree of
impairment.
3. Services that were once offered on a discretionary basis are now legal entitlements. The provision
4.
5.
6.
7.
8.
9.
10.
of personal assistants and escort persons are dramatic examples of this trend.
By law, residential institutions are being closed and replaced with support services and living
arrangements that are based in the community. Since the first entitlement legislation in the field of
mental retardation in 1968, steady legal pressure has helped to create group homes and other
community-based living arrangements. Once initiated, the process of deinstitutionalization has
moved quickly and without real opposition. One smaller county in the north-Jamtland has already
eliminated their institution. In the major southwestern population center of Gothenburg, Juri Sonn,
Director of its mental handicap services, reports that over 600 persons have moved from
institutions in his region, with only a handful of persons lacking specific post-institutional
placement plans. More than 100 previously institutionalized persons moved in 1992, 80% going to
single-person flats in rehabilitated buildings housing 5 to7 persons. With good personal support
available to these residents, publicity in largely positive, and adverse reactions from neighbors are
rare. Similar developments have occurred throughout Sweden as moratoriums on new admission
and legal mandates to phase-out institutions are implemented.
The end of institutions and guardianship reflect national commitments to least restrictive
alternatives and optimal autonomy for persons with disabilities. A strong national consensus in
favor of this position is expressed in law, policy and budgetary decisions. There is strong
parliamentary support and unified public opinion in favor of greater independence and
self-determination for persons with disabilities.
Access to the courts ensures that remedies are available. Appeal processes are open at
administrative and judicial levels. The courts have proved willing to ensure that disability laws are
observed by local governments, despite arguments of staff or funding scarcities.
The god man concept is viewed as a success in offering an unintrusive form of decision-making
support. The god man offers a flexible, free, and relatively simple method of securing a mentor for
persons whom in other countries or eras might have faced restrictive guardianships.
Refinements in mentorship and administratorship arrangements are still needed. These refinements
could stress greater attention to the personal, non-financial aspects of those roles, and the provision
of better training and orientation for mentors.
Mentorship arrangements and other protective services that do not legally disable the individual
are feasible in other countries. These concepts are certainly "exportable" to other countries.
Although the mechanics, procedures and nomenclature will certainly vary from
country-to-country, the Swedish experience offers an admirable legal model for other countries to
consider.
The principle of least restrictive alternatives is being vigorously applied in Sweden's theory and
practice of disability law. Although Sweden did not enact an antidiscrimination law such as the
ADA until 1999 and lacks the tools for large-scale legal intervention such as the civil rights class
action so common in the U.S., its leaders have found effective means to advance the rights of
persons with disabilities that are articulated in international human rights standards. In the words
of the 1989 Disability Commission, "we have also attached very great importance to strengthening
individual opportunities of autonomy and influence with regard to measures of personal support
and service."42 This commitment is in evidence in small and large matters. Even the special
problems of immigrants with disabilities have not been overlooked. They have been targeted for
outreach activities, information and planning to "ensure that responsibilities and duties are not
shirked when individuals need linguistic or other assistance in order to obtain necessary
support."43 All this is in keeping with the pledge of "A Society for All" that aims to distribute the
opportunities for the good life to all persons, disabled and non-disabled alike.
c) The German Position: Reforming a Traditional Guardianship Law
Germany has also undertaken a thorough reform of its guardianship law. In 1992, the Parliament
replaced the procedures of interdiction ("legal incapacitation"), guardianship and curatorship with one
flexible measure. The German term for this measure is Betreuung, the law is called Betreuungsgesetz,
and the agent performing this role is a Betreuer. According to Ulrich Hellmann, an expert on this law and
an attorney for Bundesvereinigung Lebenshilfe (the National Association for Persons with Mental
Handicaps, whose name "Lebenshilfe" means "Help for Living"), the law permits flexible measures that
are sensitive to principles of the least restrictive alternative and procedural justice.44
Guiding Principles for the Preservation of Rights
Several principles reinforce the law's shift from the denial of rights to the preservation of liberty. These
features include:
● the principle of necessity which bars appointment if the person can manage independently or with
the support of other social services;
● the principle of flexibility which limits the scope of the betreuer's authority in order to conform to
the constitutional principle of the least restrictive alternative;45
● the principle of self-determination which permits a durable power of attorney as a substitute for a
betreuer, which requires the betreuer to "follow the wishes of the supported individual as long as
the well-being of the handicapped person is not likely to be impaired,"46 and which recognizes
that the person's well-being includes "the possibility to lead a self-determined life to the highest
possible degree."47
● the principle of rights preservation, expressed in "the principle of subsidizing sufficient practical
support" (avoidance of legal measures) and the "avoidance of formal legal incapacitation" with the
result, that unlike the old law, the appointment of a betreuer does not automatically deprive the
person with a mental handicap of such fundamental rights as the rights to vote, to marry, and to
make a will.48
This statutory protection for self-determination is a significant legal advance, particularly the
express recognition of helping people to "lead a self-determined life." Realizing these noble
aspirations is the challenge for the future.
Procedural Safeguards
The new law has added several procedural rights to safeguard the individual's liberties and interests.
These checks include:
● a personal interview by the judge of the Guardianship Court with the person with the disability,
generally at the person's permanent residence;
● the power of the person to bring appeals from guardianship hearings and to participate fully in the
proceedings, regardless of legal capability;
● the certificate of an expert that describes the person's medical, social and psychological condition
as well as makes recommendations regarding the tasks and duration of the betreuer's role;
● the appointment, if necessary, of "a supporting curator" to aid the person in the determination
process;
● the requirement of a so-called "final conversation" between the judge and the individual to explain
the investigation's results, the expert's findings, and the betreuer's identity and scope of authority;
and
●
the durational limit of no more than five years for the betreuer's appointment.49
Protecting Zones of Autonomy and Limiting the Substituted Decision-Maker's Powers
The German law attempts to preserve zones of autonomy for the person with a disability by limiting the
authority of the betreuer. For instance, the appointment can be restricted to personal or financial matters
rather than to impose plenary authority over all of the affairs of the supported person. Only if the person's
decisions would seriously jeopardize his or her personal well-being or finances will the Guardianship
Court issue a special decree that authorizes the betreuer to consent to specific personal decisions. In
general, the appointment of a betreuer does not affect the legal capacity of the person to make decisions
of a personal nature.
These legal reforms result is the following general rules:
● medical examination or treatment is permitted only with the patient's informed consent, unless the
betreuer has the court's authorization for substituted consent;50
● medical treatment that has a high risk to life or to causing severe and permanent impairment
requires the Guardianship Court's additional declaration of consent;51
● Sterilization by substituted consent requires the Court's additional declaration of consent and the
appointment of a special betreuer and compliance with strict criteria (i.e., no opposition by the
person of any kind, permanent incapacity to consent, high risk of pregnancy, no practicable
contraceptive alternative, any pregnancy would be life-threatening or "cause a severe physical or
mental impairment of the pregnant woman that could not otherwise be prevented, and the method
of sterilization employed must leave the highest chance of reversibility");52
● additional safeguards against coercive measures, i.e. the Guardianship Court must issue its
additional declaration of consent before an individual can be placed in a closed institution, or be
subjected to mechanical measures or medication that will limit the individual's liberty or freedom
of movement.
In selecting a betreuer, the Guardianship Court must abide by the individual's choice. If the individual
has not expressed such wishes, the Court should give priority to relatives or other persons with a close
relationship to the individual, consistent with the individual's well-being and the avoidance of possible
conflicts of interest.53 A natural person (i.e. individual) selected for this task must be able to give
personal support to the person with a disability. If no such natural person is available, legal entities
("juridical persons") such as private social service associations or public authorities may be selected. The
preference for the individual betreuer, however, is so strong that these legal entities are under a statutory
duty to recruit, train and support such individual betreuers and to notify the Court whenever the
appointment can be transferred to such an individual.54
Strengthening the Consumer's Rights in Practice
Full implementation of these reforms will take some time. An estimated 350,000 Germans were under
some form of guardianship before the new law's enactment. Applying these new legal standards to so
many individual circumstances will take new resources. Significant financial and other hurdles must be
overcome before the law in the statute books will be fully realized. For instance, the German states
(lands) complain that costs are higher than expected, with the workload of guardianship judges nearly
doubling as a result of the new procedural safeguards. Additional court staff and payments for expenses
and salaries of betreuers, also contribute to those costs.55
Provisions in the sixteen German states remain quite uneven. Under the Betreuungsgesetz, private,
non-profit advocacy organizations (called Betreuungsverein) are to be created in each city and county to
recruit, orient, train and advise volunteer betreuers. The professional staff of these advocacy
organizations will also accept appointments that can not be handled by volunteers. However, the federal
law only entitles those professionals who have assumed appointments to be paid by the state. Most of the
supported persons are poor, and for those with bank accounts of less than 4500 DM (approximately U.S.
$2700) the services of a betreuer are to be free of charge.56
Unfortunately, mounting caseloads, especially within Public Guardianship Authorities, are undermining
the law's benevolent intentions and its ideal of individualized advocacy. Even before the new law, a 1989
survey documented that the average public guardian staggered under a caseload of 107 persons. The
problems now may even be worse, as German reunification57 and a "steady increase of absolute
numbers" of people under legal protection orders has increased the service demands on public and
private organizations in this field.58
Other factors can also undermine the voices and rights of consumers. Old attitudes may persist as part of
the legacy of "the traditional, paternalistic guardianship-system" that predated 1992 legal change.59 In
addition, consumers do not exert a sufficient self-advocacy presence and check on these processes.
Germany lacks sufficient "People First" or other peer-groups to pressure for change. One positive step,
however, is the mandate under legal regulations to organize "committees for participation in
decision-making in residential facilities and sheltered workshops."60 However, according to Hellmann,
the absence of a self-advocacy group's presence to support independent life-planning undermines the
proper application of the 1992 law. He states that:
a very important element in the network of Betreuung that could contribute very effectively
to a successful implementation of the Betreuungsgesetz with its guiding "Principle of
Necessity," is still missing.
In summary, "the jury is still out" on the effectiveness of the German reform. Although the law itself
contains many substantive and procedural advances, it requires stronger public support and financing to
realize those statutory gains. Excessive paternalism may be difficult to avoid under even a reformed
guardianship law. But the energy of many committed judges, advocates, advocacy associations, and
betreuers offers a brighter promise for the future. As one example, the High Civil Court of Berlin has
vigorously applied the new law to withhold the judiciary's consent for the use of potent drugs for the
treatment of mental illness that would result in unwanted changes in the patient's personality and
mentation. This type of disability rights precedent suggests that the self-determination philosophy
underlying the 1992 law is indeed being taken seriously.
d) Notes on the Reexamination of Guardianship Laws in Other Countries
Other industrialized nations are also reforming their existing guardianship laws and stressing
self-determination. A few brief examples will suffice.
In 1999, Israel put into force the Equal Rights for People with Disabilities Law. The law is intended to
both reform supports and prohibit discrimination based on disability. A striking feature of this enactment
is its clear focus on self-determination. To this end, Section 4 states that "[a] person with a disability has
the right to make decisions that pertain to her/his life according to her/his wishes and preferences; this
right shall be exercised in conformity with the law." The prominent place of this provision in the law's
opening chapter on basic principles signals that expanding individual autonomy is a major purpose of
Israeli disability legislation. Other purposes include the protection of the individual's dignity and
freedom. The law also enshrines the right to "equal and active participation in all the major spheres of
life," and the right to an appropriate response to the individual's needs, in such a way as to "enable
her/him to live with maximum independence, in privacy and in dignity, realizing her/his potential to the
full."61 It is worth noting that these provisions apply to a broadly defined group of people with
disabilities, including those with severe physical, emotional, or mental disabilities, including cognitive
disabilities that substantially limit the person in one or more major spheres of life.62 Although inspired
by the Americans with Disabilities Act (ADA), the law promises to advance wider aims than the ADA,
committing Israeli society to strengthen disability rights based on "the principle of equality and the value
of human beings created in the Divine Image."63
The law has already sparked consumer activism and debate. In seeking the same rights as all other Israeli
citizens, disability rights activists have taken to the streets. In a protest unique in this country's history, a
rally and sit-in that began outside the doors of the Ministry of Finance concluded only after a 37-day
protest in the corridors and the streets surrounding the ministry. Protest leaders had met with both the
powerful Minister of Finance and the Prime Minister, blocked traffic in the streets, captured the national
media's attention, and even provoked motions of "no confidence" in the government [a parliamentary
step that could in theory have led to toppling the current coalition government]. Although their goals
included the prompt implementation of the Equal Rights law (especially the appointment of the
Commission for Equal Rights for People with Disabilities), they primarily focused on more generous
supports and disability benefits. Their main aims were to improve the freedom to live where people wish
to live, to use convenient transportation, and to obtain work in real jobs. They also sought the consumer
representation promised by the Equal Rights law. To date, appointments have not yet been made to the
Commission's Advisory Committee, a majority of whose members are to be persons with disabilities.
Thus, the law sets an ambitious agenda for disability rights and self-determination. Indeed, the activists
are returning to the legislative branch to seek enactment of provisions on support services, public
accommodations, and other parts of the draft Equal Rights bill that were not adopted in 1998 when seven
chapters of the law were first passed. In summary, the 37-day protest was a successful demonstration of
self-determination by a sector of the Israeli public previously viewed as weak and unassertive.
In Austria, legal reforms in 1984 led to the development of limited guardianships. As of 1981, some
27,000 persons were under a form of plenary guardianship. According to Rudolph Foster of the
University of Vienna's Institute for Sociology, the 1984 law had been expected to lead to a marked
decrease, but instead after an initial decline the number of persons under guardianship has again climbed
to about 23,000. Three professionally staffed organizations provide guardianship services as well. Under
a new commitment law, patient advocates are also appointed for each committed mental patient.
The Austrian law on guardianship has also been credited with influencing the reforms in Germany. One
of the main goals of the 1984 law had been to destigmatize the provision of protective services.
After long deliberations, the Netherlands appears on the verge of adopting a mentorship law. For almost
two decades, activists have criticized the existing law on guardianship of the property (curatele) for its
formality, expense and failure to address the personal needs of its subjects.64 Jan Meiresonne, then
executive director of the National Association for the Care of the Mentally Retarded, had proposed in
1974 a mentorship law (mentorschap). By 1994, a government bill on this subject (Wet op het mentor
schap) is expected to come into force. The bill recently passed its first reading in Parliament. According
to attorney Marcia Roozendaal, the law has several innovative features. It would 1) pay mentors, even if
they are relatives; 2) give preference for the appointment of relatives; 3) pay attention to the wishes of
the person with a disability as to the choice of mentor; 4) require periodic review and limits on the
duration of appointments; and 5) permit flexibility to limit the appointment to financial or personal
matters. Under the principle of the least restrictive alternative, a local magistrate could authorize a
mentorship for personal matters (mentorschap) or limited guardianship for only financial matters (onder
bewind stelling). In contrast, a plenary guardianship (onder curatele stelling) can only be ordered by a
federal judge, presumably with greater formalities and procedural safeguards. If enacted, these measures
will offer the Dutch a wider continuum of supportive options.
The United Kingdom is also reviewing its guardianship laws. Two official reports - one for Scotland and
the other for England and Wales - urge revision of the current traditional legal provisions.
In 1983, Spain modified its guardianship laws. The range of supports now include forms of temporary
guardianship (guarda de hecho), a guardianship limited to representation in a specific legal proceeding
(defensor judicial), "prolonged minority" (prolongacion patriae potestar), guardianship of property
(curatela); and total or plenary guardianship (tutela).
Finally, New Zealand's law on this subject is noteworthy for its comprehensiveness and its emphasis on
tailoring measures for the least intrusion into the affairs of the person with a disability.
As this discussion reveals, countries in different regions and legal cultures are embracing newer models
of support, and diversifying the measures that can deal with the universal needs for support for people
who have difficulty taking informed and voluntary decisions for themselves.
From Paternalism to Partnership: Concluding Observations
Around the world a movement for enhanced self-determination is gaining momentum. It is expressed in
international human rights documents such as the Inter-American Convention on the Elimination of All
Forms of Discrimination Against Persons with Disabilities65 and the European Union's statement on
principles of legal protection.66 It is reflected in the rise of self-advocacy groups and in legal reforms on
a variety of fronts. This monograph has sketched some of those reforms, especially in the development of
mentorship arrangements and other support services that do not disenfranchise persons with disabilities.
The lessons that can be learned from the Swedish, German, and Israeli experiences, and that of other
reforming nations need to be widely disseminated and carefully assessed. For instance, the Swedish god
men (mentors), the German incorporation of self-determination principles in new guardianship laws, and
the dreams of equality and consumer preference embodied in the Israel Equal Rights for People with
Disabilities Law all bear close inspection as activists in the United States and other countries explore
paths to progress and true partnerships.
It is time for a thorough review of guardianship and alternative personal supports in the fifty states and
other jurisdictions of the United States. For too many people with disabilities, disempowering plenary
guardianships are in place when less instrusive and more consensual forms of support would suffice.
Calls from self-advocates and from scholars demand such reforms that will replace the paternalism of the
past with authentic partnerships for the future. As cases like the U.S. Supreme Court's Olmstead v L.C.
decision fuel the drive for deinstitutionalization, and the consumer faces more personal decisions and
options, the urgency for reform becomes ever more apparent.67
Leading organizations in the field have long recognized this need. Three decades ago, the International
League of Societies for the Mentally Handicapped [now Inclusion International] sharply criticized
custodialism and outmoded forms of guardianship as "an ancient institution which is in urgent need of
revitalitalization to meet the needs of this century."68 The League charged that institutions were
"conducted at best on paternalistic lines, and at worst as an oligarchy in which the disenfranchised
residents have no individual or collective voice in their affairs, no control over their environment and no
way of changing, protesting, or appealing against conditions under which they might be living, whether
benign or harmful."69 Those words remain true as we approach a new century and a new millennium.
The American Association on Mental Retardation has now lent its prestige to the drive toward full
recognition of the right to self-determination. In its 1999 position paper, it defined this term as "the right
to act as the primary causal agent in one's life, to pursue self-defined goals and to participate fully in
society." The Association thus urged service providers to protect the rights of individuals to "make
fundamental life choices, to enhance their authority to act in accordance with those choices and to build
capacity of communities to embrace the active participation of all community members." By helping to
develop mentorship and other non-coercive support arrangements, professionals can help to realize these
aims. In this way, guardianship can be minimized and reserved for situations of clear and present
necessity. The problem with guardianship, after all, is that it lets the courts into the lives of people with
disabilities, and can have a number of negative consequences that may reduce the rights of the affected
individual to less than the civil rights that even convicted felons possess.70
Finally, people with disabilities have created grass-roots pressure through a comprehensive disability
rights movement to demand change. No one better personifies that movement than Justin Dart Jr., its
senior statesman and the 1998 recipient of the Presidential Medal of Freedom. At the American Bar
Association's national conference on disability law and policy he spoke forcefully for the need for an
empowerment revolution. Such a revolution could accelerate the desirable changes in support services
identified in this monograph. Referring to the movement as reaching a historic crossroads, Dart declared:
Our present social programs have reached their limits. We need a clarified
vision. Persons with or without disabilities will never fully achieve any of their
legitimate goals until there is a revolution of empowerment, a revolution to
eliminate primitive practices and stereotypes and to establish a culture that
focuses the full force of science and democracy on the individual's potential for
self-determination, productivity, and quality of life.71
Around the globe the stirrings of this empowerment revolution and its impact on primitive or
overprotective legal measures can be felt. Sweden and Israel have already decoupled guardianship and
loss of civil rights. Today the citizens of those countries can exercise the right to vote regardless of any
protected status. With ingenuity, political will, and legal reforms, more citizens with disabilities can be
emancipated from avoidable guardianships. As people gain in decision-making skills and capabilities, the
institution of guardianship can shrink or be replaced by less intrusive and formalistic measures. The
movement for self-determination can be a force for such long overdue changes.
Bibliography
1The
author acknowledges the research support provided by the National Program Office on
Self-Determination, a program of the Robert Wood Johnson Foundation, University of New Hampshire,
Institute on Disability; the University of Haifa Faculty of Social Welfare and Health Sciences; the Trump
International Institute for Continuing Education in Developmental Disabilities; and the Switzer
Fellowship program of the National Institute on Disability and Rehabilitation Research. The views
expressed herein are solely those of the author, and not necessarily those of any supporting organization.
For an earlier, partial version of this monograph, see Stanley S. Herr, "Maximizing Autonomy:
Reforming Personal Support Laws in Sweden and the United States," 22 JASH 213-223 (No. 3, 1995).
The kind permission of TASH, an organization focusing on disability advocacy worldwide, to republish
in part is appreciated.
2Thomas
Nerney and Donald Shumway,Beyond Managed Care: Self-Determination for People with
Disabilities 4-5 (Sept. 1996).
3Thomas
Nerney, Richard F. Crowley, Bruce Kappel, et. al.. An Affirmation of Community: A
Revolution of Vision and Goals at 14 (1994).
4Associated
Press, Guardians of the Elderly: An Ailing System 1 (Sept. 1987).
5E.g.,
Stanley S. Herr, Barry A. Bostrom & Rebecca S. Barton, "No Place to Go: Refusal of
Life-Sustaining Treatment by Competent Persons with Physical Disabilities," 8 Issues in Law and
Medicine 3-36 (1992).
6E.g.,
ABA Comm'n on the Mentally Disabled and ABA Comm'n on Legal Problems of the Elderly,
Guardianship: An Agenda for Reform (1989).
742
U.S.C. § 1396r (c)(2)(E) (West. Supp. 1991).
8E.g.,
Stanley S. Herr, "Human Rights and Mental Disability: Perspectives on Israel," 26 Israel Law
Review 142, 172-79 (1992); A New Look at Guardianship: Protective Services That Support
Personalized Living (T. Apolloni & T. Cooke, eds., 1984).
9
Thomas Nerney, Richard F. Crowley, Bruce Kappel, et. al., An Affirmation of Community: A
Revolution of Visions and Goals at 10 (1994).
10See
id.
11
Robert Dinerstein, Stanley S. Herr, and Joan O'Sullivan, A Guide to Consent (American Association
on Mental Retardation, 1999).
12
See, e.g., Speaking for Ourselves and People First of Tennessee, "The Society for the Furtherance of
Self-Determination" (guest editorial), in Common Sense No. 4, at 3 (July 1999)
13
New State Ice Co. v. Liebmann, 285 U.S. 262, 311 (1932).
14Michigan
Ass'n for Retarded Citizens v. Wayne County Probate Judge, 49 Mich. App. 487, 261
N.W.2d 60 (1977).
15
E.g., Martha Minow, "When Difference Has Its Home: Group Homes for the Mentally Retarded,
Equal Protection and Legal Treatment of Difference," 22 Harvard Civil Rights-Civil Liberties Law
Review 111 (1987).
16
Law No. 940, The Act on Provisions for Certain Mentally Retarded Persons (Dec. 15, 1967).
17
Law No. 569, The Act for Special Care for Persons Suffering from Disturbed Psychological
Development (June 13, 1985).
18
Stanley S. Herr, Law and Mental Retardation: International Trends and Reforms, 38 International
Digest of Health Legislation 849, 858 (1987).
19
Allan Everett, "The New Sweden Guardianship Law" (June 7, 1989) (unpublished paper).
20Id.
at 2.
21
Parents acting as the mutual guardians of their minor children are not eligible for guardianship fees.
22
Bruce Sales, et al., Disabled Persons and the Law: State Legislative Issues 100-104 (1982).
24
Everett, supra note 19, at 4.
25
Betankande fran Formyhderskap Utredingen, Foraldra Som Formyndare (SOU 1988:40).
26 25
LSS, § 9(4).
27
One client, Michael W., released from a mental retardation institution in the 1970s, lived an essentially
reclusive life in a downtown apartment. His social contacts were largely limited to the sporadic
interventions of his lawyers and social workers. They helped him to maintain his fiercely cherished
independence. An ongoing "contact person" would have been an ideal service for him.
28
According to Anna Åkerrén, legal adviser to the Swedish Social Ministry, "[a] person that is entitled to
a personal assistant gets 178 Swedish crowns from national government funding for every assistance
hour exceeding 20 hours a week. The amount is supposed to cover costs for the assistant's wages and
additional social fees, administration and education. The person can choose to be the employer of the
assistant. He or she can alternatively choose to let the municipality, a private enterprise or an
organization employ the assistant."
29
Report of the 1989 Disability Commission, Disability, Welfare, Justice: Summary 22 (SOU 1991:46)
30
LSS § 9(3).
31
For a tragic reminder of the courage of people with guide dogs who face the risks of city travel, see
Ronald Sullivan, Blind Woman Killed by a Subway Car: Victim Falls on Tracks and Is Hit By a Passing
Train in Midtown, N.Y. Times, July 8, 1993, at B3, col. 4.
32SOU
33
1991:46.
SOU 1992:52.
34Id.
at 9.
35Id.
at 12.
36Proposed
37A
§ 16a to the Constitution Act, SOU 1992:52 at p. 63 (Swedish-language version).
Society for All, supra, id. at 1.
38Id.
at 47.
39LSS
§ 1(3) (the new category not previously enumerated under the mental retardation law).
40This
type of day care is limited to persons with mental retardation, autism, autistic-like condition, or
brain damage. The reason for this narrowed eligibility was described as simply a compromise driven by
cost factors.
41LSS,
§ 6. The local authorities are also responsible for determining an individual's needs for
housekeeping services which is distinguished from the personal assistant who attends to more intimate
help such as dressing, toileting and bathing.
42Disability,
43A
Welfare, Justice, supra note 29, at 31.
Society for All, supra note 33, at 37.
44This
section draws on interviews with Ulrich Hellmann, and his very informative paper presented at
XIX International Congress of the International Academy of Law and Mental Health, at the panel on
"Minimizing Guardianship, Maximizing Autonomy: Least Restrictive Alternatives in Surrogate
Decision-Making" in Lisbon, Portugal, June 14, 1993. The author was the chair of this comparative law
and policy session.
45Id.
4 (§§ 1896-1897 BGB).
46Id.(§
1901 BGB).
47Id.(§
1901[1] BGB).
48Id.at
10.
49Idat
8-9. (§§ 66-69 FGG).
50Id.
at 5 (§ 1904 BGB).
51Id.
at 5 (§ 1904 BGB).
52Id.
at 5-7 (§ 1905, 1899[2] BGB). As an indication of the hesitation of the Parliament to approve any
such nonconsensual sterilization in light of the Nazi history, the Parliament required the federal
government to report every four years on the practical results of implementing this aspect of the law.
53Id.
at 7 (§ 1897 BGB).
54Id.
at 8 (§§ 1900, 1908).
55Id.
at 15. In the Bavarian state, the costs for voluntary and private professional betreuers along are
estimated at 22 million German marks (DM, roughly equivalent to U.S. $13 million). Volunteers can
receive their expenses, while private professionals (usually lawyers or social workers) are paid on an
hourly basis.
56Id.
at 13.
57The
former East German law, dating from 1961 and providing for curatorship under the Family Law,
was rarely invoked due to the citizen's fear of state involvement in their lives. Hence a pent-up need for
legal measures may lead to an increase in legal proceedings in the eastern regions of Germany.
58Id.
at 12.
59Id.
at 11.
60Id.
61Equal
Rights for People with Disabilities Law, 5758-1998, Sec. 2. [Israel].
62Id.
Sec. 5.
63Id.
Sec. 1.
64Stanley
S. Herr,Rights into action: Protecting human rights of the mentally handicapped, 26 Catholic
U. Law Review 203, 276-278, 286-287 (1976).
65Open
for signature by members of the Organization of American States as of June 8, 1999. Article V
calls for governments to promote participation by persons with disabilities and their organizations in
developing measures to implement this human rights treaty. Article I clarifies that a "necessary and
appropriate"declaration of legal incompetence does not constitute discrimination under this treaty. Some
human rights experts have urged that states adopt a "reservation" [amendment] striking this clause.
66European
Union Principles Concerning the Legal Protection of Incapable Adults: Recommendation
No. R(99) 4 and Explanatory Memorandum (1999).
67See
Tommy Olmstead, Commissioner, Georgia Department of Human Resources v. L.C., 527 U.S. 581
(1999).
68International
League of Societies for the Mentally Handicapped, Symposium on Guardianship of the
Mentally Retarded 10 (Brussels, author, May 1969).
69Id.
at 29
70See
Joan O'Sullivan, "Adult Guardianship for the Disabled -- A Serious Matter," 1 Advances in Aging,
no. 3, at 7 (University of Maryland at Baltimore Geriatrics and Gerontology Education and Research
Program, Fall 1999) (quoting Claude Pepper, the late U.S. representative and champion of older
Americans, who wrote: "The typical ward has fewer rights than the typical convicted felon - they no
longer receive money or pay their bills. They cannot marry or divorce . . . It is, in one short sentence, the
most punitive civil penalty that can be levied against an American citizen, with the exception . . . of the
death penalty."
71Justin
Dart Jr., speech presented at ABA conference "In Pursuit . . . A Blueprint for Disability Law and
Policy" in American Bar Association Commission on Mental and Physical Disability Law, Disability
Law and Policy: A Collective Vision 1 (1999).
GUARDIANSHIP ALTERNATIVES
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
General discussions of alternatives to guardianship do not usually focus on the trust as an important
alternative. Trusts are properly seen as estate planning devices for parents who have children with disabilities.
Trusts also are commonly used as a device to shelter assets that are otherwise disqualifying for Medicaid i f
owned by the person with a disability. The following information expands upon these ideas and illustrates
why trusts can also be seen as an alternative to guardianship for people with disabilities.
Introduction to Trusts
Many members of the community of people with disabilities are familiar with trusts. Over the past three
decades, trusts have emerged as a common, widely accepted estate-planning device for families that have
children with disabilities. Trusts enable parents, for example, to leave money for children who are Medicaid
eligible. The “third party trust” (parent for child) can provide a source for the purchase of amenities without
affecting the children’s ongoing eligibility for either SSI or Medicaid. Medicaid does not consider the trust as
a countable asset, and properly structured distributions from the trust are not countable income.1
In some cases, trusts are created to conform to the provisions of OBRA93 (Omnibus Budget Reconciliation
Act).2 These trusts are designed to move otherwise countable assets belonging to a person with a disability
under federal law, into a trust that is not countable as a current asset and to permit distributions for amenities
that are also not countable as unearned income. The OBRA 93 trust is used to shelter the Medicaid recipient’s
own assets, not as an estate-planning device for his or her parents. Such trusts are often necessary to protect
ongoing eligibility, for example when an otherwise eligible individual receives an inheritance or personal
injury settlement that results in a lump sum distribution of countable assets that are disqualifying for
Medicaid.
Most OBRA 93 trusts are what is known as Exception A trusts, and contain a provision that upon the death of
the Medicaid recipient (beneficiary), any remaining trust assets will “pay back” any state that has provided
medical assistance (Medicaid) to that person during his or her lifetime. The trade off is that the Medicaid
recipient enjoys the use of the assets and income that those assets generate during his or her lifetime, and the
state receives the remainder interest of the trust following death in order to get paid back for the benefits
received.
Introduction to Guardianship
Generally, the purpose for the creation of a guardianship is to identify and empower a person to make
decisions on behalf of another person. The guardian is a surrogate decision-maker, acting on behalf of a ward.
In Michigan, if the person for whom a guardian is appointed is a person with developmental disabilities, the
guardianship is created by a Probate Court under the authority of the Mental Health Code.
Guardians can be invested with the broadest of powers that can include medical decision making, authority
to decide residence, complete control over finances, and virtually any other decision that a person without a
guardian can make on his or her own. Courts can also limit a guardian’s powers and can reserve certain
decision-making authority to the person with a disability in a partial guardianship.
Schools, mental-health bureaucracies, some hospitals, and other institutional providers are comfortable
working with guardians; often moreso than in working directly with the individual. The existence of a
guardian’s Letters of Authority is a license to speak with the guardian about the person with a disability, and
allows the institution to by-pass the person with a disability in the decision making process. While the
institution may see this process as more “efficient” and substantive than one that requires a decision or
consent from a person with disabilities, advocates clearly understand that guardianships are not tools created
for the convenience of institutions.
The history of the use of guardianships for people with disabilities suggests that substantial numbers of
guardianships have been created without a demonstration of the need for surrogate decision making and
certainly without the exploration of suitable alternatives to guardianship. Many parents approach probate
courts and request guardianships for their child merely as a function of the child attaining the age of majority.
Often these parents are completely unaware of the existence of alternatives to this course of action. Those
parents who are made aware of alternatives often pursue alternatives instead of creating guardianships.
The Trust as an Alternative to Guardianship
A trust requires three parties: the Grantor or Settlor who creates the trust, the Trustee who manages the assets
held in trust and the Beneficiary, who receives the beneficial use of the trust assets. In an estate plan, the
parents are the Grantors and Trustees during their lifetimes. Most of the time, they are also the beneficiaries
while either of them is living.
Following the death of the parents, a Successor Trustee who is named in the trust instrument takes over the
management of the trust assets. At this time, a separate share or sub-trust is funded for the benefit of the
person with disabilities who becomes the beneficiary of that trust. In other words, if a child has disabilities, the
parents’ estate plan provides that the child’s inheritance is put into the hands of a trustee, rather than delivered
to the child outright and free of trust.
The role of the trustee is to manage the assets entrusted to it and to make expenditures for the beneficiary
consistent with the terms of the trust. Such expenditures are generally in the form of amenities to enhance the
quality of the beneficiary’s life, rather than to provide basic support such as food and shelter. There is ample
literature on what types of expenditures are permissible from a trust created by a beneficiary’s parents. This
trust is called a “third party trust” in Medicaid parlance.
The trust serves as an alternative to guardianship for at least three reasons.
1. Ownership of the assets in trust alleviates any need for a Guardianship of the Estate of a person with
developmental disabilities.
The trust provides a built-in benefit of placing the management of assets into the hands of a trustee and
removing the assets from the estate of beneficiary. Because the beneficiary does not have to manage trust
assets, there is no need for any type of judicial intervention to create a guardianship of the estate with respect
to these assets.
In cases where no trust is created in the estate plan of the parents (usually as a result of serious oversight), the
child with disabilities receives an outright distribution as a devisee (i.e. a person who receives a gift of real
property under a will) under a Last Will and Testament. In these cases, one “solution” to the almost certain
Medicaid disqualification that results from the inheritance is to create an OBRA 93 trust, with Medicaid
payback provisions. Such a trust will create Medicaid eligibility but only upon the beneficiary’s death. States’
will receive “pay back” for Medicaid payments issued to the deceased beneficiary during his/her lifetime.
Where no OBRA trust is created, there is a loss of Medicaid. Sometimes, this loss may be tolerable if the
inheritance is large. However, under even these particular circumstances, there will almost always be a strong
inclination on the part of other family members to seek some “protection” of the assets through judicial
intervention.
This means that family members or somebody in the community that provides support is likely to seek the
appointment of a conservator for a person deemed “legally incapacitated” or a guardian for a person with
developmental disabilities. Under either circumstance, whether there is an OBRA 93, Exception A trust or
whether there is a guardianship of the estate approved by the Probate Court, the parents failure to properly
plan the inheritance produces a result that is less than optimal.
2. The income that the trust assets generate is managed by the trustee, and is only distributed in conformance
with the instructions contained in the trust document.
Once the trustee holds assets, the law requires that they be invested under a standard of prudence. The
invested assets should produce income, and the income is expended for the benefit of the beneficiary. The
trustee is given discretion as to the specific types of expenditures that the trust will make. As noted, these
expenditures will ideally improve the quality of life of the beneficiary. The beneficiary is permitted, to the
extent possible, to participate in decisions about expenditures. Trust beneficiaries can request distributions;
they may not be able to demand distributions under “third party or OBRA 93 trusts,” but they can make their
requests to the trustee.
In general, these distributions are made without prior court approval and without subsequent court
accountings. The relationship between the trustee and beneficiary is private, subject only to periodic possible
review by the State Medicaid Agency in the administration of the Medicaid program. Assuming that the trust
qualifies as a third party trust or an OBRA 93 trust, and assuming that the expenditures are consistent with
the instructions in the trust, this review merely confirms that the beneficiary’s eligibility is not affected by the
trust or expenditures from it.
The on-going relationship between the trustee and the beneficiary affords each the opportunity to get to know
and appreciate the other. Whether the trustee is a bank, a financial services company, or a relative, the trustee
can and should solicit input from the beneficiary concerning expenditures. The trust will insulate the assets
from third party exploitation and will, at the same time, permit the beneficiary to express his or her own wants
and needs in the requests for distribution. There is no part of this relationship that requires judicial involvement
3. Often the trust is the only investment that the beneficiary has access to, albeit at the discretion of the trustee. In
addition, the only other income that most beneficiaries have is from Social Security. This income is used to pay for
food and shelter and is often handled by a Representative Payee. Again, no guardianship is required to handle
any portion of the estate of the beneficiary of the trust.
One thing that many people with disabilities have in common is that they live at or below the poverty level.
During the adult lifetime, a person with a disability who is eligible for Medicaid will not own nonexempt assets
that exceed $2,000 in value.3 Also, the individual’s income is very limited; in many cases he/she receives SSI or
SSDI and perhaps some small wages. This income is almost always consumed monthly on ordinary living
expenses.
As a result of these factors, there usually is no “estate” that the person with disability has that would require the
protection of a guardianship. It is a somewhat moot point with respect to the protection of assets. The
inheritance in trust does not change this picture at all. Certainly, the trust can and should be used to raise the
standard of living and enhance the overall quality of life of the beneficiary, but because the trust will necessarily
involve a trustee, there is no need to seek court supervision over the management of the assets.
In effect, the trust serves as a suitable and private alternative to guardianship once it is funded and providing
enhancements to the beneficiary. To expand upon this point further, a well-drafted trust will contain provisions
that instruct or even require the trustee to monitor the well being of the beneficiary, and to periodically assess
his or her needs. The trustee may choose to do the assessment personally, or may hire a third party such as a
social worker to visit with the beneficiary and to report to the trustee concerning the beneficiary’s “condition” and
needs.
Some attorneys recommend that parents name siblings or other close relatives to serve as advisors to the trustee.
The advisor provides monitoring services to the trustee and advocacy for the beneficiary. Many parents want to
assure that siblings can participate in the decision making processes attendant to the person with a disability that
will occur following the parents’ deaths.
However, parents are sometimes leery about entrusting siblings with the management of the beneficiary’s
inheritance. As a general rule, trust estates should be professionally
managed unless the entire estate is so small that the trustee advises that professional management does not make
financial sense for either party. Most trust officers have the integrity required to make such an observation. At
that point, siblings may be the only or best alternative to a corporate fiduciary.
Whether or not an advisor is named in the trust document, the trustee will need to monitor the beneficiary’s
needs and will employ such persons as are required to do so. Again, the point is that no guardianship is required to
permit this to happen; it occurs naturally as a function of the relationship between a trustee and
beneficiary.
Joel S. Welber received a bachelor’s degree from the University of Michigan in 1970, and his law degree from Wayne State
University in 1973. In addition to his private practice, Mr. Welber is a tenured Associate Professor in the College of Business at
Eastern Michigan University.
Mr. Welber has been counsel to the Washtenaw Association for Community Advocacy for 28 years. Since 1975, he has specialized in
estate planning for families with sons and daughters with development disabilities.
1
Program Eligibility Manual (PEM) 401
2
42 USC 1396p(d)(4)(A)
3
PEM 400, at 4

10 Legal Myths About Advance Medical Directives

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