How to Make Positive Changes for Your Family Member Using

How to Make Positive
Changes for Your
Family Member Using
Group Action Planning
The purpose of this booklet is to explain the Group Action Planning process. A true family
story begins each chapter.
Special thanks to the people who contributed and reviewed this booklet:
Barbara Bishop
Martha Blue-Banning
Susan Ferrel
Jacqueline Gordon
Cindy Higgins
Emma Longan
Mary Morningstar
Mike Ruef
Ann Turnbull
Rud Turnbull
Table of Contents
Forward by Ann Turnbull
Introduction.....................................................................................................1
Is Gap Right for You? ......................................................................................2
Invite Support..................................................................................................6
Create Connection...........................................................................................12
Share Great Expectations .................................................................................15
Solving Problems .............................................................................................16
Celebrate Success............................................................................................20
Bumps in the Road...........................................................................................21
The Rest of Lauren’s Story (So Far).................................................................23
Related Readings .............................................................................................25
1
Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s
the only thing that ever has.
Margaret Mead
Foreword
During the last seven years of our family’s life, we have been intensively involved in
supporting our son, JT, to transition successfully from high school into an inclusive adult lifestyle.
We really had no choice but to devise a radically different approach to transition planning,
since being part of the only adult agency in town was not an option. We did what everyone does
when they’re down and out, which is to rely on a network of family and friends. We started out
very informally, but over the years we evolved into using a process we now call Group Action
Planning.
This process is very simple. What we did was ask people who cared about our family to
help us build a new life for JT, who has mental retardation and autism. The “intentional
community” we created is similar to small town living and our nation’s past when neighbors
helped neighbors. In our fast-paced world today with family members living all over the country,
we often don’t have the roots and natural support systems of yesterday.
We’re not the first to gather people to help a certain individual. But we are pioneering a
process where our intentional community not only gathers to help, in our case, JT, but each other.
Everyone benefits.
Others have heard about our success with Group Action Planning. At the beginning of each
chapter in this book where we will show you how to use Group Action Planning (GAP), you will
read about one real family and the GAP group it began for their son Brian. In that GAP group was
a college freshmen from Kansas University with a ready smile, a spontaneity that connected him
instantly to the people fortunate to be around him, and a commitment to making a positive
difference in the lives of others.
Besides coming to GAP meetings, this engaging young man--Scott McWhorter--also went
out with Ryan to local restaurants, played basketball with Ryan and his family in the driveway, and
introduced Ryan to his college friends. Ryan called him “Buddy,” and when Ryan saw Scott “his
face lit up like the sun,” said a mutual friend.
A tragic accident took Scott’s life. All who knew Scott deeply grieved his premature death.
So, we dedicate this manual to you, Scott. We rejoice in your exuberant sense of possibility
and your commitment to action. May your inspirational spirit continue to touch the lives of others.
Ann Turnbull
Dedicated to
Scott McWhorter
December 28, 1974-April 24, 1994
Introduction
This manual introduces Group Action Planning (GAP), a dynamic way to make decisions
and build enthusiastic support teams for people with disabilities and their families. GAP gives
people with a disability and their families an opportunity to make dreams come true with a team of
other individuals who have the knowledge, support, and commitment to get things done.
Make dreams come true?
Dreams?
We at the Beach Center believe that dreams are very important, but all too often people
with disabilities and their families unknowingly deny themselves what others take for granted.
They feel alone, trapped in systems without the support needed to control their lives. Decisions
about the family member and his or her future are made by circumstance or professionals without
considering that family member’s strengths or preferences.
So, instead of being controlled by an endless list of goals and objectives that often lead
nowhere, take control. Envision! Cash in on what collaboration has to offer! Instead of having a
family member who is shunned, rejected, or ignored, turn the situation inside out. Make that family
member the focus of positive attention. The process is challenging; but, as a favorite expression
goes: Proceed like the ticking of a clock in a thunderstorm!
To help you get started, we prepared this manual to show you how to launch your own
GAP, answer questions about the GAP process, and provide real-life examples for your increased
understanding. After reading this manual you will see the remarkable strides families have made
using the GAP process. If you want to learn more about GAP, contact the Beach Center about
other related products or technical assistance. We also have Tom Hunter’s Connections
audiocassettes about living with disability; quotes from this tape begin the following chapters.
Beach Center on Disability
1200 Sunnyside Avenue
3111 Haworth Hall
The University of Kansas
Lawrence, KS 66045-7534
(785) 864-7600
Dedicated to making a difference
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Is GAP Right for You?
Martha received yet another call from the school. This time Ryan had pulled a classmate’s
hair. Yesterday the youth minister had said that Ryan didn’t “fit in” at the Sunday school program.
Then the job coach called from Ryan’s job training placement and said Ryan refused to work, so
Martha needed to pick him up immediately. It was the same thing. Over and over again. Ryan
didn’t seem to belong anywhere but in the special classroom at school.
Martha felt overwhelmed. She was discouraged. And she was frustrated, no, she was mad.
Her every effort ended in defeat and nobody seemed to give more than token support. The worst
part was she felt like she was the only one who truly cared about Ryan.
In her despair, she sought out her friend who was also the parent of a child with
developmental disabilities. The friend suggested they start Group Action Planning meetings, a new
idea that had worked for her own family. Martha loved the idea of a group of people working
together for Ryan’s well-being, but the feeling of imposing was hard to overcome. When Martha
finished talking with her friend, she had a glimmer of hope. None of the problems had disappeared.
But for the first time she felt the problems could be shared.
Group Action Planning occurs when a group of family, friends, and sometimes professional
service providers get together to use creative brainstorming to make wishes come true for a person
with a disability. In individualized family service plans or individualized education planning
meetings, professionals use test scores and goals (often predetermined) to chart someone’s life.
However, in most cases, these planning sessions and their implementation still fall short of making
the best life possible for your family member. Something else is needed, and that is why Group
Action Planning (GAP) may work for you.
Like Robert Kennedy, GAP prefers to see the world as it has never been seen, to ask “why
not?” and work for whatever your family member wants. GAP is always done with the individual
instead of for the individual in all possible situations.
GAP meetings may be every week, every month, maybe even a few times a year. The
frequency of meetings and how many will differ because each group is different.
While the GAP groups we know about have mostly involved people with developmental
disabilities, we see no reason why they can not work for any person seeking to make their dreams
come true.
To give you an idea of what can happen with a GAP group, read this letter from Susan
Ferrell, a California parent, who started a GAP group for her daughter who has spastic diplegia,
severe mental retardation, and epilepsy.
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. . .Unfortunately, after six months of meetings, phone calls, notes, observations, anger,
frustration, and tears, it was obvious that Lauren had taken, from our perspective, a giant step
backward. She was in a center-based program and only got out into the community for short
outings two times a week. She had no job assignment, and her days were filled with activities, such
as current events discussions and bead stringing. The heartbreaking aspect of this was knowing
that this was all that Lauren’s future would hold. This was not a transition program or temporary
assignment that was a “filler” before the next exciting opportunity came along. This was the only
program in town for low-functioning adults, so it appeared that Lauren’s future would be a
succession of useless strings of beads and non-verbal discussion groups.
I was at a very low point of despair when I went to the Institute since there seemed to be no
alternative and trying to work with the administration was getting me no where. (I was told that I
was the problem; I was too demanding and had “unrealistic expectations.”)
After I heard about Action Groups in Kansas and “getting a life,” I thought if they can do
it there, then there was no reason why we couldn’t do it for Lauren in Redding, California! Within
two weeks of returning home we had her first Action Group meeting. People were willing to come
and help us plan Lauren’s future. We decided that by Jan. 20 we needed to have a new day
program established for Lauren, which would be totally community-based. Much of her activities
would focus on classes at the community college and the second semester started Jan. 20, the
reason for having that date as our goal.
Two people who had worked with Lauren in the past were crucial in helping me put
together a week’s worth of activities. (Lauren is non-verbal, not toilet-trained, and in a wheelchair
due to cerebral palsy so it isn’t easy to come up with things that she can or would want to do which
can make for some touchy situations when you’re in the community!) Another key person in her
group is her Regional Center program coordinator who had to convince the powers that be to fund
us to provide Lauren’s day program--something that has never been done before, to my
knowledge, in the state of California!
There were times when I thought there was no way we would meet our Jan. 20 deadline,
but we did!!! We hired two women, each working half-time, to be Lauren’s attendant/job coach.
(Two people in Lauren’s group volunteered to be on an interview committee with me.) They came
at 7:30 a.m. and got Lauren ready, which is the first time in 22 years that I no longer had that
responsibility. It’s wonderful!
Her program begins at 8:30 a.m. with walking at the local mall for mobility training. Many
people participate in mall walking for physical exercise. I am told they greet Lauren by name, and
she loves saying “hi” back to them. (She does say 4 words--hi, mom, all done). Our goal is to have
her learn to push herself independently two store lengths by June.
To give you an idea of her other activities: she attends an adaptive physical ed program at
the college and an adaptive art class that she isn’t too crazy about except for a young man who
attends is an old friend of hers--when he is there she seems to do better! She is also in a beginning
jazz dance class. Talk about unrealistic expectations! I never would have even thought of that as a
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possibility. But a member of her GAP group knew that this teacher had integrated other
wheelchair students into her dance classes so she spoke to the teacher on Lauren’s behalf.
Lauren loves music so. She now takes private music lessons once a week. The teacher is a fiddle
and guitar teacher, and she is encouraging Lauren to sing (“ba, ba”) and hit a tambourine or clap
in rhythm to the music. Lauren loves it! Beginning March 1, she will be participating in a disability
horseback-riding program.
Yesterday she and a new friend went bowling, which she does once a week. She also works
in a college cafeteria twice a week clearing trays. I’m still trying to line up a job for her helping to
fold towels at a local fitness center that my husband belongs to. (She can hand the towels to her
attendant who will do the actual folding.) She also goes grocery shopping at least once a week and
helps with laundry at home. She eats out every day either at the college or at a local restaurant.
Things haven’t gone 100% smoothly--she was fired from her first volunteer job delivering mail to
residents at a local convalescent hospital, when she tantrumed and the hospital administration got
upset.
Lauren was pretty non-compliant at first, but I think it was just too many new things and
people introduced at one time. Now she is for the most part enjoying each day, and her attendants
are reporting more good days than bad.
Our Action Group is of course vital to the success of Lauren’s program. I truly believe that
the group’s involvement was instrumental in getting the Regional Center to fund the program.
They gave our plans credibility--it wasn’t just those “unrealistic parents” behind this crazy idea of
doing their own individualized, totally integrated, community-based day program.
I hope someday I’ll be able to turn Lauren’s program over to a professional organization
that is committed to full inclusion for all people, even those with severe mental retardation. Until
that day, we will keep plugging along, doing our own thing, seeing to it that Lauren’s life is a good
life.
With warmest regards,
Susan
As you just read, GAP’s power in making positive changes can be impressive. In one year,
Lauren and her mother went from a veritable low point to a life neither could have imagined.
Does this sound like something you would be interested in? If you can truthfully answer
“Yes!” to any of these questions, we encourage you to give GAP a try:
•
•
•
•
Are you unhappy with the traditional planning process?
Do you see many changes in the future and you worry about things turning out for
the best?
Do you see your family member as having gifts and capacities that can be
developed?
Are you at your wit’s end? It is all too much for you?
4
•
•
Do you worry what will happen if you can no longer take care of your family
member?
Are you open to new ideas?
Caution: GAP is not for everyone. GAP may not be helpful if:
•
•
•
•
•
The person you want GAP for does not want it.
Other family members do not like the GAP idea.
The time is wrong. (For instance, your family is moving, you are in divorce
process, etc.)
You are satisfied and see no reason to change.
You are unwilling for others to know about the challenges you face.
Even if GAP does not sound useful to you right now, we encourage you to keep reading
this manual. Many of its ideas may help your family.
What Others Have Said About Group Action Planning
It sounds so encouraging. I would like to create an action group for my child.
As a parent of a child with Down syndrome, it was great to hear the positive things
that can happen.
All parents should hear this message of vision.
I like how more informal this process sounds as opposed to an IEP
If communities were to take an active part in raising their children, all children
could celebrate life.
I want to get started now!
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So come along and gather round, we’ve got work to do
To make a world where everybody’s strengths come shining through
To give each other courage as we struggle, laugh, and pray
All the time expecting great things along the way
“Great Things Along the Way”
Tom Hunter
Invite Support
The first thing Ryan’s family did was to keep the idea in mind what they wanted his life to
be. One goal was for Ryan to have friends, real friends. So, they thought of the people already in
his life. The church! When they asked the youth minister he said he could not come. But he gave
them the names of two boys Ryan’s age. Who else? Ryan’s teacher! She gave names of students
who would be good connections for Ryan. Next, they thought of people in the community. Who
would be helpful? What opportunities might they provide? In about a week, Ryan’s family had
several names and contacted each. His mother and a friend shared making calls, then sent out a
letter with an “official” invitation.
Identifying GAP Members
If you have decided that you want to try GAP, the next step is to decide the people you
want in the GAP group. Of course, you want your family member with a disability at your
meetings. Problem-solving is much better if your family member is there to communicate
preferences first-hand. In some situations, this may not be possible. For instance, age, attention
span, discomfort at being the center of attention, and other factors might limit attendance to only a
portion of the meeting or not at all. But do what you can to involve your family member as much
as you can. Always let that person know the good ideas and statements that the group said.
Start thinking of the people in your family’s life already. Immediate family. Extended family
members (cousins, uncles, grandparents). Friends. People at work. Teachers. Write down the
names of those people who have helped or supported your family in any way. Support can be a ride
to school, money, or even a simple smile. You know best the definition of support.
_____________________________________________________________________________
_____________________________________________________________________________
_____________________________________________________________________________
_____________________________________________________________________________
_____________________________________________________________________________
_____________________________________________________________________________
Think of what your family member already does. Attends art class? Rides school bus?
Listens to rock bands? Write down those activities and the people who interact with your family
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member now or who might in the future. (Art teacher, bus driver, clerk at the record store, music
therapist, etc.) If you have an informed, responsive service provider, do what you can to get that
person in your group, because that provider may have invaluable knowledge, a network of
associates, access to funding sources, and services shaped to fit your needs.
_____________________________________________________________________________
_____________________________________________________________________________
_____________________________________________________________________________
_____________________________________________________________________________
_____________________________________________________________________________
Try writing down some more names. Think of some things you and your family member
would really like to happen now. Play on a baseball team. Play an instrument in the school band.
Join a scout group. Be on the cheerleading squad. Then think of the people who can help you make
those wishes reality. (Coach, baseball player, band leader, scouts, cheerleading supervisor, etc.)
Write down some ideas of what you would like your family member to do in the future.
Next to that idea list the names of people who can help your family reach those goals.
_____________________________________________________________________________
_____________________________________________________________________________
_____________________________________________________________________________
_____________________________________________________________________________
_____________________________________________________________________________
_____________________________________________________________________________
Look at all the people who might possibly support your family! And all those people know
people, and those people know people—you might be amazed how much support is out there. In
determining who will be in your group, note that you will do far more with people who tend to be
positive and see the cup half-full rather than half-empty. Nay-sayers will tell you what you can’t
do; positive people will work with you to make possible what others call impossible.
Asking Potential Members
You have figured out who might be in your group. Now, you have to invite them. Some of
you might say, “Fine, I will call them right now.”
Whoa. Stop!
Figure out a meeting place first. Keep in mind you want people to feel comfortable, so
make your meeting place in someone’s home. If that is not possible, try a restaurant, church,
community building, the local library—just make sure it is convenient, comfortable, and accessible
for your family. Next, you need a time to meet. Many people have jobs, so you likely will have
your meetings in the late afternoon or at night. Set a time and a day of the week.
7
Now you are ready to contact people. Don’t be surprised that many people can’t make it on
the day and time you picked. You may want to change your time if too many people have
obligations at that time. Then again, you may stay with your original decision, and tell your
potential members that they are still invited if their schedules change.
Reluctant to ask people? Once you start asking, you will be more comfortable. Here’s what
one person discovered:
•
I was surprised that so many people were interested when I told them about the
meeting. Some people did say no. But the core group of people that did show up
were committed to working with us to bring about our vision.
If you wonder why people would want to part of your GAP group, read what these two
said:
•
•
“My 10-year-old niece has cerebral palsy. I know my sister has a hard time taking
care of her, working at her job, and watching the younger children. I help out with
babysitting when I can, but I really don’t know what else to do. My sister—
Maxanne—is kinda proud and doesn’t like to ask for much. So, when Maxanne
asked me to come to this meeting, I was really happy. If I can help them out, that is
great. I love ‘em.”
“I was kinda like “wow, you want me?” when Pat’s dad called. When he said they
were going to have pizza, I said “No problem. I’m with you.” So, I went. It was
kinda weird, you know, embarrassing, at first. But after a while, I was having fun.
People listened to my ideas. Some of my ideas were pretty good ones. I felt
important. Like I was special.”
Every member will get something different out of the GAP meeting. Obviously, the family
receives support and encouragement. Also, every member will probably feel a sense of
accomplishment in seeing the great expectations happen for your family member. And, they will
have the opportunity to learn about effective problem solving and practice it themselves.
Another benefit is that members create new relationships and make personal connections
with others that will help them in their own lives. Maybe you trade barbecue recipes with someone.
Or learn about a new job opening. Or the speech therapist’s brother is a car mechanic who can
probably fix your transmission problem cheaper than that auto shop down the street.
And, because while members are there to support your family, in time, they will learn,
everyone can help them, too. The GAP meeting, in essence, offers support for all members. If
someone has a problem, fellow GAP members are great problem solvers: They have experience!
They also know each other and care.
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When you invite people to the first meeting, explain to them what GAP is, why you want
them in particular to take part, and where and when the meeting is. Tell them they don’t have to
make a definite commitment to be in the group. You just want them to come once and see what
goes on. Let them know, that for any reason, you understand if they don’t want to be a member or
if they decide to drop out.
You are issuing an invitation, not asking for a long-term commitment. To give you an idea
of how a phone conversation might go, read this:
Teresa Alvarez: Hello?
Karen Hibbs: Hello, Teresa? This is Karen Hibbs. I am calling to invite you to a gathering
next Thursday night, the 24th. It will be at 7 p.m. at my house.
Teresa: Oh, is it a special occasion?
Karen: You could say that. You can definitely say that. We are inviting people in our life
to come over and help us and Nathan make some new, positive changes in his life.
Teresa: I don’t know that I can be of much help in that.
Karen: We think you can and that you would be a great addition to the group. You always
have been so helpful to Nathan when he rides on your bus.
Teresa: He is a nice boy. He always says to me, “Nice day, Isn’t it?, Mrs. Terrie? He calls
me Mrs. Terrie, ha ha. He did that the first day he met me--three, no, four years ago. What are we
actually going to do at this meeting?
Karen: Have a lot of fun. Think up some ideas to help Nathan fit in better at school. Eat
some homemade blueberry ice cream. The meeting should last about an hour. Danny Rodriguez
and Kaitlin Bradley will be there. Miss Jordan, the gym teacher said she is coming, too.
Teresa: Mmmm. I’ll come, I think. Is it just this one time?
Karen: I hope not. We are planning on doing this about every 2-3 weeks for a while to get
an more involved in the community. We want Nathan to have the same opportunities as other
children his age. Maybe we will meet for a few months, maybe much longer. But don’t feel like
you have to make a commitment. We just want you to come to this first meeting and do what you
feel comfortable doing.
Teresa: Blueberry ice cream, eh? Save enough for me. See you next Thursday.
After you have talked with people and explained GAP, you might want to send pre-made
invitations. One person made her own and worded it:
John Michael Mitchell’s Group
Action Plan Invitation
I would like to invite you to come and have pizza with John, his family, and CLO staff members on
Thursday, June 2, at 12:00 noon at CLO (2112 Delaware).
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You are invited to attend this meeting to help you get to know John a little better as we talk about
his wonderful charisma and his unique challenges.
Hopefully, getting to know John in this way, will help you decide whether you would like to be part
of an Action Group to help us make his dreams come true.
Please let me know if you can attend so we can order enough pizza for everyone. Thanks bunches!
See you there.
Linda Mitchell
[To the photocopied invitation she added in handwriting, “Would you like to come? It will be nice
to have you. Thanks! Linda”]
Your family member should have an active role in the invitation issuing. If that person’s
writing or speech makes it difficult to communicate, then, if possible, have the person give the
message to someone else. This person, in turn, gets the invitation out to potential group members.
For instance, if an individual can’t write, he can have others write down his GAP invitation.
That is exactly how this next invitation was created:
Dear Friends,
Please come to a party at my house. Will you meet Lillie and Tom [roommates].
Please bring food like cake and ice cream and cookies. Or bananas. Or watermelon.
Or chicken. Or hot dogs. Or hamburger. Or pie. Or nut trays. Or cucumbers.
Or carrots.
I will bring the pop and M&Ms.
Dear people.
Bring friends.
Group Size
Action Groups can be any size. Three people or thirty, it just depends on the individual, the
group, and what needs to be done. (If you are going to change an entire town, you might want to
invite the entire town!) Sometimes, if the group is too small, people may feel under pressure if it
seems like there is too much to do or that if the individual misses a meeting, then the group is at a
standstill. Then again, if a group is too large for what needs to be done, some members may quit
because they do not have enough to do. So, invite a reasonable amount of people. Through time, a
few will drop out and others will take their place. GAP is an ever-changing process.
Choosing a Facilitator
When your group meets for the first or one hundredth time, you should have a designated
facilitator to steer the meeting. A facilitator does not have to be the oldest, wisest, or smartest
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person in the group. Nor does the facilitator have to be a family member. Basically, a facilitator has
to be someone who is a good listener, connects well with people, makes people feel valued, and
can help guide decision making.
During the meeting, the facilitator will develop a meeting agenda, set a comfortable pace
for discussion, maintain a positive tone, strive for honest conversation, keep the discussion relevant
to your family member, and involve everyone. If the group seems to get stuck on one point, the
facilitator may encourage the group to resolve the issue, table it for another meeting, or do
whatever is necessary to keep the group moving. When the family is unable to express its needs
because it feels so defeated or confused, the facilitator must be able to listen and help the family
put into words what it wants.
The facilitator will bring up questions to consider, problems to solve, and things to do, and
be able to step aside while others talk. When the facilitator feels that the discussion has identified
an important point, the facilitator will acknowledge that point. When someone offers a good
solution to a problem, the facilitator will be the one who asks people to act on the solution. At the
end of each meeting, the facilitator will summarize the meeting and give assignments (if necessary)
to members.
It is not the facilitator’s job to take responsibility for all actions (although the facilitator
may follow through on some actions.) But the person should provide support and encouragement
for those who make action commitments. Members work and plan with the person with a
disability, not for that individual.
Note: Someone should take notes at each meeting. This can be the facilitator’s duty,
but that might require attention that could be better directed at guiding the group. So, have
another group member take notes. By taking notes, you help planning and track group
accomplishments. Notes also encourage members to speak because seeing that the note-taker
thinks the comments are important enough to write down, makes them want to continue
talking. Notes can be brief—mainly a “to-do” list of the actions steps that will be taken.
Facilitator characteristics to look for, include:
•
•
•
•
•
•
•
•
Enthusiasm
Sense of humor
Patience
Sensitivity (especially to issues that people with disabilities and their families
encounter)
Trustworthiness
Openness
Optimistic nature
Good self-esteem
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Does this sound like anyone you know?
Create Connections
The First GAP Meeting for Ryan Banning
People attending: Ryan, Martha and Bob (parents); Jenny (sister); Andrea (facilitator);
Erica, Allison, and Danny (from junior high school); Davis and Matt (from church); and Lee
(college student observing).
Notes from facilitator: We started the meeting with “kid” snacks: popcorn, cookies, and
lemonade. Then everyone introduced themselves. I asked each person to “Tell of an experience
that you shared with Ryan that you particularly enjoyed” and “Tell us about Ryan when he is at
his best.” I briefly explained that we were gathering to bring together the parts of Ryan’s
life--family, neighborhood, school, church, community--and that we were trying to help Ryan
connect with his community and make some friends.
His family members each said that they wanted Ryan to have more social relationships and
told of happy times he had in the past. They did say Ryan had some annoying behaviors, and this
admission seemed to help others be more comfortable and honest. Danny, who tried to be
particularly diplomatic when he described Ryan’s challenging behavior, said that Ryan “semi-,
sometimes, well, kind of, has a short attention span.” Ryan enjoyed being the center of attention
and added to each member’s comments.
I had expected things to move more slowly and to take at least three meetings to generate
as many ideas for possible inclusion. One thing I found exciting was that Ryan’s peers suggested
opportunities in groups in which they currently belonged. We agreed to think about a number of
different alternatives and get back together in two weeks to choose one school, sport, community
organization, and church group for Ryan to try. Everyone left feeling energized, excited, and as if
they were part of something breaking the barriers. After the meeting, his mother said that more
was accomplished for Ryan in one hour that had been accomplished in 15 years of meetings that
focused on his poor test scores. She said it was a wonderful experience compared to typical
conferences.
Your First GAP Meeting
Besides introductions and getting to know each other, the first meeting is a lot like
meetings to follow.
You are developing a group that people want to belong to and feel included. This means
people should feel comfortable. For instance, you can create an atmosphere of comfort by simply
offering chips out of the bag rather than from a fancy serving bowl. A good idea is to have
members arrange themselves in a circle—on the floor or in chairs. There should be an equal
12
balance of fun, informality, and problem solving. It is not unusual for people to say that they are
not sure whether they are going to a party or a meeting.
Keep in mind that not everyone may know your family member for whom the gathering is
held. Or they may know the person, but not yet be comfortable relating to him or her. To avoid
unease on anybody’s part, explain relevant information about your family member’s condition or
disability. If slurred speech is problematic, suggest to members that it is okay to ask your family
member to speak slower or ask someone else what was just said. Help group members overcome
their unease by showing how you interact with your family member. If something happens that
might raise a few eyebrows or questions, (e.g., the person abruptly walks off or starts waving
arms), it is okay to explain the behavior briefly in a matter-of -fact tone. (“Sarah needs a break.”
“Brian has involuntary movements; he’s not trying to flag us for attention.”) By being open, the
relationship quickly moves beyond a superficial level to a more intimate connectedness.
During this first meeting or not too long after, have each group member offer a hope they
have and a “have-to-have” that they believe your family member needs for a truly satisfying life.
By determining these, future planning will be easier. For instance, if your family member really
likes music, then music is a “have-to-have.” If watching the hometown baseball team play every
Sunday makes your family member happy, then that is a non-negotiable item, too. Or if your
family member absolutely adores animals, then animals are a must in that person’s life.
Facilitator: Try to use “open-ended” questions, which are ones that can not be
answered with “yes,” “no,” or a single phrase such as “10 o’clock.” For instance, say
“Zulphi, how do you feel about Rizwan learning sign language?” rather than “Zulphi, should
Rizwan learn sign language?” Open-ended questions encourage people to provide more
information. This type of question generally starts with “what,” “why,” or “how.”
Another thing integral to every meeting is to let each individual know how valuable his or
her support is. Facilitators must be sure to do this. Other group members can help, too, if they feel
someone is not being credited for his or her positive contributions and strengths. If some people
tend to be on the group fringe, seek ways to get them more involved so they will feel connected,
such as by asking them questions.
You will know your group is really working when you have that dynamite mix of
connectedness and creative problem solving: Synergy.
Think about the times when have you been a member of a group and all of a sudden you
felt that rush of increased energy and creativity--that anything-is-possible feeling. That’s synergy.
What makes synergy so fantastic is that it gives everyone the feeling that the whole is truly greater
than the sum of the parts.
To tell you the exact formula of conjuring up synergy is tough. What can be shared are
some tips to develop connectedness, which will give your group a dynamic framework leading to
synergy.
13
•
•
•
•
Members need to have a chance to socialize before and after the “business” part of
the meeting. Serving snacks helps.
A good GAP supports all its members. Be alert to each other’s special days and
events. Recognize those days.
Give credit continually to members for their ideas. They should be reminded that
they are needed and valued.
Have special gatherings where the main idea is to just have fun. This is a good time
for GAP members to bring friends and family who can meet and connect with
others.
At the close of the first group, you will have an idea of the frequency of meetings, the
location of meetings, and member responsibilities (for instance, confidentiality, respect for other
opinions, etc). Group members should also feel they are appreciated.
If members agree that the goals are achievable and each can work on obtaining the goals,
then give your group the thumbs-up sign, because you are on your way to success.
* * *
This story by an unknown author reminded one parent in a GAP group of the benefits of
group action planning meetings.
The Goose Story
In fall, when you see geese heading south for the winter flying along in a “V’ formation,
you might be interested in knowing what science has discovered about why they fly that way. It
has been learned that as each bird flaps its wings, it creates an uplift for the bird immediately
following. By flying in a “V” formation, the whole flock adds at least 71 percent greater flying
range than if each bird flew on its own. People who share common direction and sense of
community can get where they are going quicker and easier, because they are traveling on the
thrust of one another.
Whenever a goose falls out of formation, it suddenly feels the drag and resistance of trying
to go it alone, and quickly gets into formation to take advantage of the lifting power of the bird
immediately in front. If we have as much sense as a goose, we will stay in formation with those
who are headed the same way we are going.
When the lead goose gets tired he rotates back in the “V” formation and another goose flies
point. It pays to take turns doing hard jobs.
The geese honk from behind to encourage those upfront to keep up their speed. An
encouraging word goes a long way.
14
Finally, when a goose gets sick or is wounded by a gun shot and falls out, two geese fall
out of formation and follow him down to help and protect him. They stay with him until he is
either able to fly or is dead, and then they launch out on their own or with another formation to
catch up with the group. If we have the sense of a goose, we will stand by each other like that.
Share Great Expectations
Martha and Bob: We really didn’t know exactly what full inclusion in high school would
look like for Ryan. We had a pretty good idea of what we didn’t want. But little by little, a picture
of what Ryan’s day would look like began to emerge. Ryan’s friends who are already at the high
school probably contributed the most. Among the many ideas they had, one comment particularly
touched us: They said Ryan should just be a student like everyone else and do all the things that
they do.
Think Big
Everyone needs to have a dream for the future. However, too often, people with disabilities
and their families are not encouraged to have a vision of the best their life can be. Not only does a
vision provide inspiration, but it will be the overall goal for your planning. Once you come up with
the vision, then you can figure out ways to make it happen.
Great expectations are not etched in stone. They are fluid images of what is possible. Said
these parents:
•
It was an amazing process. It took some time though, but as each meeting
progressed we were able to put our unspoken thoughts and dreams into words. As
we began to talk about what Jesse’s life would be like down the road, different
members of the GAP would add a little bit here and there. Pretty soon, everyone,
especially Jesse, knew where we were headed.
We would love to tell you a list of things that your group should work on envisioning. But,
as we have said before, and will keep saying, everyone is different.
Areas to think about are work, friends, inclusion in school, active community participation,
and recreation.
“I’ll never forget the meeting when were talking about Daniel learning to scuba dive! It
seemed outrageous,” said a GAP member. “Yet, come to think of it, if we can figure out living and
working full-time in a place with 30% unemployment, maybe scuba diving in an ocean 400 miles
away isn’t too far off!”
15
To highlight great expectations, you might like to have a ceremony
where everyone shares their great expectation. This could be a candle
lighting, where a member says his or her vision, then lights a candle.
Let the candles represent mutual belonging and visions standing
strong in the darkness of disability isolation.
Or each person write down a dream on a slip of paper, then puts that
in a bag or box. A year later the group can open the box of recorded
visions in another ceremony.
Maybe the group can plant a perennial garden together in conjunction
with a special “great expectations” meeting to recognize the symbolism
of planned growth.
Think “what if” and “why not.” Push the limits of possibilities. Encourage outlandish
thinking. Remember you are pioneers. Listen for the expression of great expectations and
underscore those when they are shared. Recognize, too, that great expectations evolve over time.
Great visions that people have at the beginning may seem like no big deal later on. A vision
may start out big, then sharpen over time to one specific area of life that is a priority. The continual
unfolding of expectations is an exciting, dynamic process.
Solving Problems
Attending: Ryan, Martha and Bob (parents); Jenny (sister); Andrea (facilitator); Rod
(family friend); Erica, Allison, Danny, and Matt (from school); Davis (from church); Jim (Ryan’s
teacher).
Facilitator: Everyone was punctual, except Allison came late because of a ride problem.
We had a great smorgasbord of taco fillers. I told the group that we needed to choose and plan for
two activities for Ryan to become involved in. The group came up with lots of very good ideas. But
which one to take steps on first?
After hearing about the activities, Jim thought Ryan needed to work on specific attention
skills before Ryan might join 4-H. Martha noted that it didn’t seem like a good fit because 4-H
often involves arts and crafts and Ryan has never enjoyed fine motor tasks such as drawing.
Martha mentioned Ryan’s love of sports. Erica, then suggested the Warhawk Pep Club at school,
16
which has its own cheering sections during football games. Jim said he would have a meeting with
the club. Allison, Erica, Danny, and Matt said they would attend and share insights into having a
sharing and caring relationship with Ryan.
Then Bob said he would be worried that Ryan might take off and not stay with the cheering
section. To this, Doug suggested that we tell Ryan how to act during the game. I asked Jim, also
the wrestling assistant coach, if the team was a possibility for Ryan. In response, Jim said that
Ryan did not like to do warm-up exercises. Bob said we would try to reframe Ryan’s thinking that
exercises are “work” and explore the team idea later. Then we discussed Ryan being part of the
church softball team next spring. At the end of the meeting, I asked each person if they would like
to make suggestion or add reflections. One person said that he felt he actually “got to know Ryan”
better. After the meeting Jim shared with me that he has reservations about Ryan’s behaviors with
his peers. I said I understood, but we have to remember Ryan has not had opportunities for equal
relationships with others and it is going to take time for us to learn how to best do this.
The word “problem” has a bad reputation. People hear the word and expect trouble. In
actuality, the definition of problem really means “question.” Stripped down, problems are just
questions, and when people have questions they usually want answers.
So, an important part of GAP meetings is to find answers. These are questions: How can
Inez be more part of her school? What do we do when Maria yells obscenities at people walking
down the street? Where can we get money for Michael’s customized wheelchair? Who is the best
speech therapist in the area?
The answers?
That is what GAP members work to provide.
Asked by the facilitator to focus on a certain great expectation, the group then tries to offer
every idea—no matter how silly—that make that vision happen.
Brainstorming, the popular name for this problem-solving method, is easy. The facilitator
gives the group a specific problem and tells the group it has a certain amount of time (usually five
to ten minutes) to come up with as many solutions as possible. Quantity, not necessarily quality, is
the goal. Ideas don’t have to be explained or judged. They don’t have to be apparently feasible,
because you never know what ideas will work or which ones might inspire other member’s ideas.
As one GAP member said, “When we get to ‘storming,’ it’s like there is yeast in the air.
Our ideas build off each other and we are raising all over the place.”
Here is an example.
Facilitator: Keisha [18-years old] said at our last meeting that she would like a job. Do
you have any ideas?
Anthony: I can give her money. I’m her father. She doesn’t have to worry about money.
Facilitator: Anthony, Keisha knows you have always been there to help her. But Keisha
wants to help herself. We all can appreciate that.
17
Anthony: Yeah, I remember being 18. Well, she could help out at our store. Stocking
shelves. Sweeping. Or something.
Nicki [Keisha’s aunt]: My friend has a restaurant. He is always needing help.
Letrice [Keisha’s mother]: You mean wash dishes? Keisha does not like washing dishes!
Belieeeve me.
Nicki: There is tons of stuff to do at that restaurant. Clean off tables. Sort silverware. Greet
customers. Making sure the catsup bottles are full. Fill water glasses. Just a lot of things.
Bobby [Keisha’s brother]: Hey, maybe she could work at McDonald’s. Then I could get a
bunch of free hamburgers!
Letrice: You know, Cloris’ boy works down there at McDonalds. He’s got his own
problems and Cloris says it’s working out just fine.
Lola [family friend]: Right down there by McDonalds is a pet store. Keisha really likes
animals. Maybe she would like to work there.
Keisha: Could I work at a pet store?
Facilitator: It is a possibility. A very definite possibility. Let’s keep coming up with ideas
and figure out the details later.
Nicki: Keisha, you sure do like animals. You are all over my dog when you come by. They
have a big old time of it—playing, running. How about working at the animal shelter?
Dan [service provider]: I think they mostly use volunteers there. Now, Keisha could get
some experience there, which could turn into a job for her there or at a pet store later on.
Bobby: If she needs experience, maybe she could put up an ad down at the store saying
that she could take care of pets while people are away, or walk their dogs or something.
Letrice: You know, maybe Keisha could do something at the church. I know there is a
sister who does the cleaning there twice a week. Keisha could help her or take her place if she
needs time off.
Dan: Perhaps Keisha would like further education or training. What do you think about
that, Keisha?
Keisha: I’m pretty tired of school. But I always thought I might like to work in a beauty
shop making people pretty.
Lola: Girl, do I have the job for you. My husbands’ auntie has a beauty parlor. Tanya just
up and quit. She did the shampoos and stuff. You could give it a try.
Nicki: If you liked it, you could go to beauty college. It takes—if I remember right—nine
months. You can get those student loans and free money, too.
Anthony: Money? I can give my daughter money for school.
Letrice: Anthony Raymond Robertson! Would you quit squawking about money!
Lynette [neighbor]: I’ve been sitting here thinking that maybe Keisha might like working
at a hospital. Those hospitals--they’ve got so many jobs, it’s like fishing in a stocked pond.
Nicki: How about the health clinic down the street?. . .
18
See how the members’ ideas often spring from earlier suggestions? That is the beauty of
brainstorming. Just remember not to spend time judging the idea. Your job is to come up with
ideas.
Facilitator: Have recorder write down ALL ideas, so the group can discuss them after
the brainstorming session. Try to say something complimentary to each person about their
idea, or at least, acknowledge their contribution with a comment such as “uh-huh,” “okay,”
or “hmmm.” You can also nod your head or smile. When you bring up each idea, rephrase
the idea if it seems unclear and ask the source person if your interpretation is correct. For
each suggestion, too, the group may have alternative solutions. Write those down, too.
After the group has finished coming up with ideas, examine your list and pick the best
solution. Discard impractical ideas. Then choose the top three, always keeping in mind your family
member’s preferences. Examine each, and discuss their possibilities and problems. Pick the
strongest idea (which may be a combination of two or more ideas) and take immediate action. This
immediacy is crucial because once a solution is agreed upon and implementation plans are not
made, nothing happens. With that in mind, determine exactly what needs to be done and do not
underestimate the amount of work involved. Then assign tasks. Luckily, because you have a
number of people from which to choose, you have a diverse talent pool. One member might be
skilled in finding out facts. Another member could have many political connections. Everyone has
something to offer.
Facilitator: To help members make an informed decision, you could write each option
on a large piece of paper temporarily attached to the wall or chalkboard. Then write down
the good and not-so-good points for that option. Do this to help members visually understand
the different alternatives. This often helps people who have a hard time making decisions.
At the next meeting, discussion will indicate whether the group did what it promised. After
meetings, the facilitator might want to send a “to-do” list to each member that summarizes the
main action steps to be taken before the next meeting. It may be helpful to give certain members a
call before the meeting to see if they need help with what they agreed to do.
To review:
•
•
•
•
•
Figure out who does what
Decide exactly what that person is going to do
Determine how long it is going to take to accomplish the task
See if there is any way the group can help
Ask for a progress report, if possible
19
•
Make sure everyone has something to do
Facilitator: Sometimes problem-solving can not be done in a meeting or two (or three,
or. . .). You might have to brainstorm one meeting, then get back together again to decided
on the best solutions. Don’t rush to get everything done in one meeting. But then again, don’t
linger on every step and lose group momentum.
The funny thing about opportunities is that they often come from crises. Something
“horrible” can be turned into something wonderful—if you can get past your initial emotions and
look for ways to turn the disaster around. For instance, one family thought it was the end of the
world when their family doctor said he had done all he could. They had really liked this doctor.
Then, during a GAP meeting, they learned about another doctor, one who was especially good with
neurological problems.
Guess what?
You already know the answer! They liked the new doctor even better and she had an
especially effective rehabilitation therapist working with her. Or maybe you really want to start a
GAP because your family is having a crisis now. This may open a window of opportunity that will
make things better than ever.
All too often, families have been conditioned to keep their worries to themselves and hide
problems. (“What happens in this house stays in this house.”) However, from being part of a GAP,
they have learned that it is okay to share disappointments, hurts, frustrations, and embarrassments.
Other members have problems, too. Many people find that when they tell their “horrible” story,
that other people in the group have a similar “horrible” story. They can tell you how they got
through their bad times.
Remember visions may change. As goals are reached, new ones are created. What is so
wonderful about great expectations is that they always lead us to meet new people, learn helpful
skills, and try different things.
Celebrate Success
They all met at the park. Several people brought their children. The picnic tables were
loaded with food: Deli trays, potato chips, jello salads, spicy beans, fresh fruits, brownies, iced
fruit bars. We all chatted while one spirited toddler in white happily made a proper mess of
himself. The kids dashed off to the playground, while we had a short meeting to review the past
year. Members agreed that Ryan had matured a great deal in the past year, and everyone was
happy about his job success at the plant nursery and school. Bob and Martha said Ryan had the
busiest schedule in the house with all his dates, visitors, job, bat boy position, and camps.
20
Erica said she felt rewarded to be a part of Ryan’s success and that she had gained a great
deal of patience since being his friend. A teacher at Ryan’s school said she was “jazzed” about his
next year at school and that he was helping others by blazing a trail. Jane, who had been there
since the beginning, remembered that our meetings at first concentrated on our mutual
frustrations. Now they are about the wealth of opportunities that Ryan has. As for Ryan, he loved
the meeting and talked and talked. Martha said GAP meetings “turned on Ryan’s tap.” After the
meeting (and a few more brownies), half of us played a rousing game of Duck, Duck, Goose, while
the others lingered at the picnic shelter talking as the sun went down.
With progress comes celebration. At every meeting, take time to celebrate
accomplishments, no matter how small they may seem. This helps reaffirm your shared vision for
the future.
Recognize group members for their contributions. Allow and encourage gratitude. It is
good for the individual with a disability and family to let group members know how much group
support is appreciated and how good the family feels about progress being made.
You don’t have to solve problems at every meeting. You need a get-together every once in
a while geared toward pure enjoyment. Consider watching a sporting event, a sing along with a
guitar, an impromptu talent show, or a backyard cook-out. The key is to have fun together, feel
positive about great expectations getting into place, and nurture each other. Be sure to have drinks
and food at your celebration. This may be a birthday cake for a group member, a special menu of
people’s favorite foods, or a seasonal remembrance such as valentine candy. The point is to have
fun and embrace joy.
Unfortunately, there might be times of sadness, too. A group member
may move away, have a personal tragedy, or even die. When a sadness
occurs in the lives of group members, provide consolation and support.
Try to let everyone feel the group cares for and about each one.
Bumps in the Road
We don’t know anybody. We keep to ourselves. Have you asked anyone to be in your
group? Try asking first. Remember, GAPs don’t have to have a lot of people. Some GAPs start
with only three members. Every family is different. Focus on the issues at hand and identify
people who can help.
21
What is the difference between a case manager coming into your home and this GAP
thing? This gets back to supporting the family through a group process instead of working
individually with the family. It also means doing more than planning: GAPs are action steps, too.
I know that IEPs can be stressful and often nonproductive. My GAP would probably
be just like the IEP. Yes, both are planning activities. No, they are not the same. IEPs are often
oriented only toward academics and school issues. A GAP looks at all areas of the person’s life. A
GAP can aid IEPs because both can work toward the agreed upon goal, so there will be a greater
likelihood that these goals will be consistently addressed, implemented, and monitored.
In GAP meetings you describe, everyone seems to get along, but what do we do if
there is a conflict between our members? If you have conflicting members, you have several
options. Do nothing. Talk with the people outside the meeting. Bring up the problem within the
group and have the group try to resolve the problem.
Ideas don’t come so easy to us. Try some idea-spurring questions. Can something you
already have be put to other uses? Is it possible on a smaller scale? Is there a substitute? Can it be
adapted? What can you take out? Would a new ingredient make a difference? Could it be
rearranged? What is the opposite? How about a blend? Remember, every idea is valuable.
Sometimes, another person’s idea will give you a great idea.
Frankly, our GAP is a dud. It just hasn’t caught on fire. Some fires burn more slowly
than others. One GAP spent its first four months getting a family some educational services. The
family did not know how to access these services. A member of their 4-person group, helped them
pick the services they needed, then the group started working on some other actions. All GAPs do
not start at the same point or make progress on the same schedule.
There is this person—I won’t say who—but everyone knows, who comes to our
meeting and goes off onto other subjects and criticizes everyone. It’s irritating to have the
person there and slows down our meeting. First, ask the person why he or she is coming to the
GAP meeting. The answer should be to support the person with disability. Then explain how and
why distracting behavior is counter-productive. If the person has other needs or priorities that
continue to conflict with the group, gently suggest a temporary or permanent break from the group.
We get all those big ideas, then we can’t seem to get them done. It’s frustrating. A big
stumbling block for some groups is taking on too much at once. One or two important steps are
probably all that can be accomplished at only one time. If you plan too much, and fail, the group
will get frustrated. Keep focused on what you can do. Step by step. “Inch by inch, Life’s a cinch.”
22
I thought we were doing pretty good, then, it seemed that DeWayne, who we were
doing all this for, started acting crummy at meetings, talking about how sick he was, or just
staring into space. Is it possible that you are working on your dreams, and not DeWayne’s? That
your group isn’t listening to DeWayne and this is his way of showing frustration or trying to get
your attention? Maybe he wants more time to socialize with people. Or he is telling you that he
does not want to be there.
Sometimes group members do not seem clear on what was obviously discussed. A
good summary helps members understand more clearly even if you are saying exactly what was
said before. Summaries tie together loose ends, highlight items, provide opportunities to add
information, or signal a move to another topic. You can uses phrases such as “Let’s go over what
we have talked about so far,” “So far, everyone feels. . .,” and “During this discussion, we
agreed…” Try not to bring in new topics when summarizing. When the summary is complete, ask
the group to confirm that the summary was correct and complete. (“Has that about summed it
up?”) This is a great way to ensure accuracy and correct any misunderstandings. If it seems that
your summary is only partially confirmed or if someone disagrees, ask an open-ended question to
correct the summary. (“What else did we talk about?”) Keep summarizing until the group confirms
accuracy. Include the summary in your meeting notes.
Our GAP group seems to be a series of token efforts. Our facilitator is so gung-ho on
process and following every step in this book, that some of us really don’t wa nt to go
anymore. We hope the message in this book is that GAPs are based on flexibility and
responsiveness. There are no set procedures, just suggestions. Every GAP is different. If only two
or three members are active in brainstorming, fine. The other three don’t have to be forced to
participate. If the facilitator is having a meeting every month and that is too often, have meetings
every six-eight weeks. The group is flexible and should respond to members’ needs, too.
The Rest of Lauren’s Story (So Far)
Remember Lauren in Chapter One. Her mother Susan started a GAP and Lauren was
taking art and music lessons for the first time, going to try horseback riding, and joining the mall
walkers?
A year after Lauren’s mother wrote, came this letter:
. . .Over the past year and a half as Lauren’s horizons have expanded, other people have
joined her Action Group , but generally the core group has remained consistent. The Group met
every other week for the first two months. Each meeting had a formal agenda, and members left
each session with an assignment. She now does mobility practice at the mall with the seniors and
others who use the mall for exercise before it opens in the morning. Her attendant does not push
23
her but does offer verbal prompts. Initially, she would just sit inside the doorway and complain;
now she cruises the mall saying “hi” to her new friends there and sometimes taking a break with
them at the donut shop if she can push herself that far! She attends Shasta College for adaptive
physical education twice a week. She tried adaptive art, but was bored and gave that up before the
semester was out. She attends a handicapped horseback riding program in another town. She loves
music and now does clapping and uses a tambourine. She enjoys singing and sings “All done.”
Once a week, Lauren goes bowling with a friend also in a wheelchair. They use a ramp to get the
ball down the lane, and Lauren has actually broken 100! Todd, her bowling friend, recently turned
30 and Lauren received the first birthday party invitation in her life for his big 3-0 celebration.
Lauren also now shops for all of her own personal items and special food from the grocery store.
Her generally good disposition would often turn sour and she would very loudly tantrum when she
went in the grocery store. Now she generally enjoys her short jaunts in the store. She has to carry
the items to the check-out stand, give the clerk her money, and carry the bag to the van.
Lauren also has a few jobs in the community. She works at a local exercise club folding
towels. Sometimes she has to be removed for a short time-out when she doesn’t want to do the job,
but since it is a job she knows she must go back and finish. She is generally there for 15 minutes
twice a week, which is about the limit of Lauren’s tolerance for that type of activity.
Another job that a member of her Action Group found for Lauren was being an aide in a
pre-school class at the YMCA. Lauren went for music and story time (her favorite) and she would
do things like hold up a felt board in her lap for the class to see while the teacher attached items
depicting the story. I think Lauren wasn’t the only one learning something from her being in that
classroom!
At home Lauren is learning to use a duster to wipe her dresser in her room and to operate
an adaptive switch to use the blender to make her orange juice. She participates in putting her
laundry in the washer and hands it to her attendant for folding. She stirs the pot when they make
simple food items like jello or pudding.
I feel I can confidently say that Lauren has a rich and fulfilling life. There are problems,
but her father and I don’t have to deal with them alone: her Action Group is there to share that
responsibility. Although they do not meet as often as at he beginning of the program, they do come
together to help brainstorm new activities for Lauren to try. We also, as a group, write her
Individual Service Plan and semi-annual reports that I have to submit to the Regional Center. I
can not imagine Lauren back at a center with little contact with the outside world. She has a new
air of independence at home that is wonderful to see. Her temper tantrums are much less frequent,
and I can take her into a public setting without worrying how she will behave. We keep plugging
along, doing own thing, seeing to it that Lauren’s life is a good life.
24
Related Readings
1.
A holistic emphasis. Turnbull, A.P., Blue-Banning, M.J., Anderson, E.L., Turnbull, H.R.,
Seaton, K.A., & Dinas, P.A. [Book chapter]. In D.J. Sands & M.L. Wehmeyer (Eds.), Selfdetermination across the life span: Theory and practice, (pp. 237-256). Baltimore: Brookes.
Group Action Planning (GAP) is a process of creating a network of family members,
friends, and professionals as reliable allies for an individual with a disability. The purpose of
GAP is to support the individual with a disability to live the life that (s)he envisions through the
long-term commitment of GAP team members. This article presents guidelines for GAP—who,
how, when, why—and includes facilitation strategies and examples from active GAP groups.
2.
“Getting a shot at life” through Group Action Planning (1996). Turnbull, A.P., Turbiville,
V.P., Schaffer, R., & Schaffer, V. [Journal article.] Zero to Three, 16(6), 33-40.
Group Action Planning is a process of bringing together family members, their friends,
and service providers to perform a reliable alliance with each other for the purpose of creating
individualized and preferred supports and services. This article describes the five key
components of Group Action Planning: (a) inviting support, (b) creating connections, (c)
envisioning great expectations, (d) solving problems, and (e) celebrating progress. The authors
of this article are professionals and parents who work together to implement Group Action
Planning for Sarah, a young child with Down syndrome. They describe the details of how the
process worked in their group and makes suggestions for how other families might find Group
Action Planning helpful.
3.
Group Action Planning as a strategy for providing comprehensive family support (1996).
Turnbull, A.P., & Turnbull, H.R. [Book chapter]. In L.K. Koegel, R.L. Koegel, & G. Dunlap
(Eds.), Community, school, family, and social inclusion through positive behavioral support (pp.
99-114). Baltimore: Brookes.
This chapter documents the authors’ personal experiences with Group Action Planning
(GAP) on behalf of their son with special needs. The authors describe how they created a context
for social connectedness and interdependent caring; and how through the social connections the
members of the GAP team were able to engage in dynamic problem solving and action. Specific
strategies for establishing a GAP team and facilitating its productive activities on behalf on the
individual with a disability are included.
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4.
Group Action Planning as a support strategy for Hispanic families: Parent and
professional perspectives (2000). Blue-Banning, M., Turnbull, A.P., & Pereira, L. [Journal
article.] Mental Retardation, 38(3), 262-275.
This article reports the results of a qualitative study to learn and document how Hispanic
families view Group Action Planning (GAP) as a support strategy. Hispanic parents of youth
and young adults with disabilities and professionals serving Hispanic families received
information about GAP and then shared their reactions in focus groups. Analysis of the focus
group discussions yielded information about the perceived advantages and disadvantages of
GAP, and suggested best practices for GAP and professional development.
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The University of Kansas
Beach Center on Disability
The Beach Center on Disability (previously the Beach Center on Families and Disability) at
The University of Kansas is affiliated with the Schiefelbusch Life Span Institute and the School of
Education’s Department of Special Education. Special Education Professors Ann Turnbull and
Rud Turnbull have served as the Center’s co-directors since it’s founding in 1988. The Center’s
recent name change reflects its increasingly broadened scope of research. Its commitment to the
quality of life of families with children who have disabilities remains unchanged.
The Beach Center is a rehabilitation research and training center devoted to research and
training on disability. The Center’s research has mostly focused on public concepts and issues, and
on professional practices. The Beach Center has maintained a steadfast commitment to making a
difference for persons with disability and their families by asking the “so what” question: now that
we know something through research, “so, what” difference does it make for families of
individuals with disabilities and for others who support them? Accordingly, knowledge and
research findings are disseminated in many different ways to ensure that the Center’s research
findings are fully utilized and accessible.
Primary topics of Beach Center research include assistive technology, disability policy,
family-professional partnerships, family quality of life, health care, foster care and adoption,
positive behavioral support, and self-determination. The Beach Center offers the nation’s only
doctoral and post-doctoral programs in families and disability policy.
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