Newsletter - Brain Injury Association of New Hampshire

HEADWAY
Newsletter
Providing Resources – Promoting Futures
A Second Chance
Consumer-based organization for people
surviving brain injury, brain tumor and
stroke and for those who care.
109 North State Street, Suite 2
Concord, NH 03301
Non-Profit 501 (C) (3)
02-397683
Phone: (603) 225-8400
Fax: (603) 228-6749
Family Helpline: (800) 773-8400
IN THIS ISSUE...
A Second Chance.................... Page 1
President’s Message ................. Page 2
Executive Director’s Message ..... Page 2
A Second Chance Cont’d.......... Page 3
BIANH Support Fund............... Page 3
Rehabilitation Tips .................. Page 4
Legislative Update................... Page 5
Upcoming Events .................... Page 6
20th Annual Walk-by-the-Sea... Page 7
Helping Survivors .................... Page 8
Ask Jon ................................. Page 9
Connections Corner ................. Page 9
Spotlight on Aphasia............... Page 10
Education Update .................. Page 11
Thank You Donors................. Page 12
UPCOMING EVENTS...
January 27, 2007
4th Annual Bill Johnson Vertical Challenge
for Brain Injury Awareness
Cranmore Mountain Resort
North Conway, NH
May 16, 2007
24th Annual Brain Injury and Stroke
Conference
Courtyard by Marriott & Grappone
Conference Center
Concord, NH
August 15, 2007
24th Annual Charity Golf Tournament
Pheasant Ridge Golf Course
Gilford, NH
September 30, 2007
21st Annual Walk-by-the-Sea
Hampton Beach State Park
Hampton, NH
BIANH ONLINE
[email protected]
HTTP://WWW.BIANH.ORG
Brain injury is the leading cause
of death, disability and hospitalizations for children, teens, and
young adults in New Hampshire.
Issue #32, Winter 2006
“I have been given a second chance,” says
Karen Hire, reflecting on her journey of
surviving a traumatic brain injury. Karen,
a native of Minnesota and current resident
of New Hampshire, recently shared her
story of survival. Her engaging blue eyes
and easy smile make it simple to understand
why she is dearly loved and respected by
her family, friends and colleagues. Karen’s
determination and vigor rivals many of us
who have never been challenged by brain
injury.
The Crash – The Physical and
Emotional Impact
Karen, a flight attendant for nearly twenty
years with Northwest Airlines, was a
passenger in a small aircraft piloted by her
friend, Stewart Volpe, of Meredith, NH.
The Piper Cub crashed shortly after
take-off on April 15, 2000, from a private
airstrip in Laconia, NH. Karen was airlifted
from Lakes Region General Hospital in
Laconia to Dartmouth Hitchcock Medical
Center in Lebanon, NH. She lay in critical
condition with severe brain trauma. The
pilot of the aircraft, Stewart Volpe,
succumbed ten days later from his injuries.
No parent is ever prepared to learn that
their child has been in a serious accident.
Walt and Ellie Hire, Karen’s parents,
received the news of their daughter’s plane
crash within hours of the incident. “I felt
the blood rush from my body,” recalls Ellie.
The Hire’s immediately left their home in
suburban Minnesota to make the journey
to their daughter’s bedside in New
Hampshire. The encouragement they
received from their many friends and neighbors as well as Karen’s friends and co-workers at Northwest Airlines was both comforting and calming. Their journey to New
Hampshire would be their journey into the
world of brain injury as well.
Hospitalization – The First Hours
Karen’s condition was critical in the initial
hours after the crash. She scored a Level
6 on the Glasgow Coma Scale. Ellie and
Walt arrived at her bedside in the early
morning hours of April 16, shocked by the
array of tubes, IV lines and lead wires
monitoring her vitals. “We were told that
BRAIN INJURY ASSOCIATION OF NEW HAMPSHIRE
THE BRAIN INJURY ASSOCIATION OF NEW HAMPSHIRE
109 North State Street, Suite 2
Concord, NH 03301
CHANGE SERVICE REQUESTED
Karen might not survive,” Walt recounted,
reflecting on the events of that painful day.
The next two days were fraught with
worry and despair as Karen’s condition
showed no improvement. Amazingly, on
the third day of her hospitalization, Karen
seemed more “aware” of her environment
for longer periods of time. Those closest to
her thought she tried to speak. Karen’s
parents remained at her bedside, talking
with her, playing her favorite music from a
tape recorder, reading and holding her
hand tightly.
The promising news that Karen was
becoming more responsive and aware of
her surroundings was also shadowed by
additional health care concerns. The next
twelve days consisted of a number of
accomplishments as well as set-backs. Karen
began to open her eyes, recognize names and
follow movement around her room. She
also experienced a partial lung collapse and
contracted bacterial pneumonia.
Karen was determined.
By Sunday, April 30, fifteen days after the
accident; she began to move her right leg,
smile and joke, and wave to the nurses.
Walt and Ellie continued their vigil at her
bedside, encouraging her, comforting her
and documenting her accomplishments in
their personal diary.
On Monday, May 1, sixteen days after the
crash, Karen was well enough to be transferred to Northeast Rehabilitation Hospital
in Salem, NH, to start the next phase of
her recovery.
Rehabilitation – Setting the Goals
Karen credits much of her success in
rehabilitation and recovery to her parents;
Dr. Whitlock, her attending physician; and
the staff at Northeast Rehabilitation
Hospital. She is thankful that she had a
strong support system in place. Her friends
and co-workers were a constant source of
support to her. Their presence was a
steady reminder of what she was most
determined to accomplish: to get back to
work. “I wanted to make my recovery a
real life experience,” Karen explained.
The innovative approaches that Karen’s
parents developed with the guidance of Dr.
by Geri Holdsworth
Whitlock were pivotal in supplementing
the therapies being utilized in Karen’s treatment plan. Karen continued to suffer from
right-side weakness, peripheral vision loss
and extreme fatigue. The regimen of exercises and projects encompassing speech,
physical, occupational and cognitive therapies left Karen frustrated. “I knew that to
get back to being as normal as possible
meant that I would need to accept challenging and difficult tasks,” she said. Karen
encouraged the staff to allow her do things
on her own. She is grateful they embraced
her determination and allowed her to be an
active participant.
On Saturday, May 20, Karen walked for
the first time with assistance from her
father. Each day brought new activities:
her first ride in the car, chocolate ice
cream, and trips to the movie theater. Her
35th birthday party was celebrated with a
cake shared among family, friends and hospital staff members. Walt and Ellie looked
upon their daughter now with a renewed
hope for her future and a respect for her
determination.
On Friday, June 16, sixty-two days after
the crash, Karen was discharged from
Northeast Rehabilitation Hospital.
Making the Most of Each Day
At home, Karen’s ‘work’ of recovering from
a traumatic brain injury continued. Walt
and Ellie took the lead in helping their
daughter continue her steady progress.
They scheduled and coordinated outpatient
appointments with neurologists, eye
physicians and neuropsychologists; each
day brought new insights.
cont’d on pg 3
Karen today (center) shown with her
parents Walt & Ellie
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Winter 2006 - Page 2
BIANH
Officers &
Board of Directors
EXECUTIVE COMMITTEE
President
Newton Kershaw, Jr., Esq.,
Manchester
Vice-President
Brant Elkind, Greenfield
Treasurer
Kenneth Brown, Esq., Manchester
Secretary
James McKenna, Nashua
At Large
Jeremiah Donovan, Hillsboro
Family Representative
Richard Cunningham, Alton Bay
Survivor Representative
Paul Van Blarigan, Hollis
Professional Representative
James Taylor, Ph.D., New Durham
Immediate Past President
Carolyn Ramsay, Wolfeboro
Executive Director
Steven D. Wade, Concord
BOARD
OF
DIRECTORS
Jennifer Andrews-Peters, New Boston
HEADWAY Newsletter
PRESIDENT’S MESSAGE
by Newton H. Kershaw, Jr
On October 27, a crowd of people
descended upon the Brain Injury
Association of Massachusetts, in
Westboro, MA, for a convocation of
the Northeast United States Brain
Injury Community, to swap stories about
brain injury and about doing something
about it. There were representatives
from Pennsylvania, New Jersey, New
York, Connecticut, Rhode Island,
Massachusetts, Maine, Vermont and
New Hampshire. Our own John
Richards orchestrated the logistics and
put the group through the paces of its
agenda. There were BIA Execs, BIA
Board Presidents and other such volunteers, Protection and Advocacy (P &A)
folks, National Association of State
Head Injury Administrator (NASHIA)
folks, and Mary Reiter, the Chief
Operating Officer (COO) of the Brain
Injury Association of America (BIAA).
New Hampshire was well represented
by Steve Wade, Bud Elkind, Albert
Ouellette, the aforesaid John Richards,
and me. This event was one of a number
of these convocations, and I believe it
was the best attended. The energy,
vigor, good will, inventiveness and dedication were tangible. I was proud to be
there.
Steve Wade, John Richards, Al
Ouellette and I engaged in a lively
conversation on our ride back home.
Part of our conversation was about
money. Great ideas are great, but it
always gets back to money. Some state
associations barely scrape by, some
receive money from legislated trust
funds, and some obtain money from the
state government, others from grants.
All associations depend on fund raising
and charity. It is a daunting challenge
to look at the real need in the eye and
keep plugging along. I have seen the
Brain Injury Association of New
Hampshire’s budget grow steadily.
Last year our budget was more than
$700,000. That’s a lot, but nowhere
near the need that stares back at us
(how much is that?). How are we
supposed to think about this? It’s a
good question, and the answers are as
complicated as money is (money is very
complicated). How much money is
there? What should we expect?
This message does not offer any answers,
but I want to share that there is good,
positive energy in play now and that
energy comes from people who care
about other people. Many of those good
people are members or friends of our
Rocco A. Chiappini, M.D., Milford
Laura Flashman, Ph.D., Grantham
P. Joy Kiely, New London
Jeannine LeClerc, Keene
Margaret Louney, Bedford
Amy Messer, Contoocook
Dennis Powers, Atkinson
Garry Sherry, North Conway
Joe Viana, Madison
James Whitlock, M.D., East Hampstead
EX OFFICIO
Robert Boyce, Alton Bay
Martha Burnham, Kingston
John Capuco, Psy.D., Concord
David Krempels, Portsmouth
John Richards, Deerfield
Tina Trudel, Ph.D., Effingham
FACT #2
An estimated one of every 250 New
Hampshire residents experiences a
TBI serious enough to result in death
or hospital-based treatment each year.
by Steven Wade
Triple D Month
Since 1992, December has been
designated “National Drugged and Drunk
Driver Awareness Month”. Each year in
our state, the New Hampshire Highway
Safety Agency hosts the “Governor’s
Safe Family Holiday Breakfast” to help
raise public awareness about Triple D
Month.
Eldon Munson, Jr., Francestown
Donna Nicholaides, Bedford
FACT #1
Currently, 5.3 million Americans
live with a disability as a result
of a traumatic brain injury.
EXECUTIVE DIRECTOR’S MESSAGE
Peggy Bedore, Gilsum
Paul Blackford, Franklin
Association. The reason we get
involved is often personal. Mostly we
have seen what it is to be vulnerable.
We, as human beings, all know one
thing for sure, “the vulnerability of
childhood and the fact of mortality.”
That is what Jonathan Shay says in
an article from The Hedgehog Review
titled, “Illness and Suffering.” Shay’s
article is about psychological injury,
especially the injury suffered by
soldiers who return from war. Brain
injury qualifies as a cause of such
trauma. When someone has been
injured we want to help.
This is also good time to reflect on the
direct link between motor vehicle
crashes and traumatic brain injury (TBI).
Vehicle crashes still account for nearly
50% of traumatic brain injury in our
state and the percentage is much higher
for younger drivers.
Young drivers learn about drugs and
alcohol and how driving under the
influence can take lives, but few learn
about the link between TBI and vehicle
crashes or what can happen when you
survive a crash. This is a message that
needs to get out to young drivers.
We are going to have some help in
getting this message out thanks to a
recent grant from the Allstate
Foundation awarded to the NH Task
Force on Adolescent Injury Prevention,
which the Association formed back in
1998 and now serves as lead agency and
fiscal agent. The grant will be providing
seed money to five high school pilot sites
in the state to start up and organize
Driver Safety Awareness Week at
their school.
The Driver Safety Awareness Week
program was developed by NH School
Learning Incentives. High school Driver
Safety Awareness Week will be a
teen-led, peer to peer driver safety
program, featuring activities designed,
planned and produced by teen drivers
and for teen drivers. Amazingly most
teen driver safety initiatives have not
involved the target audience in planning
and development and recent research
points to this being a critical missing
ingredient.
We are looking for other high schools
in the state to participate in this project.
Please let me know if you think the
school in your community may be
interested.
FACT #3
Every year, there are nearly
5,000 traumatic brain injuries
in New Hampshire.
FACT #4
Every year, nearly 2,500 children and
young adults are hospitalized in New
Hampshire with a brain injury; more
than the number hospitalized for
cancer, AIDS, heart disease, and drug
and alcohol abuse.
FACT #5
More children, teens and young
adults are killed, hospitalized or
permanently disabled by brain injuries
in New Hampshire than any other
single cause.
Submission & Editorial Policy: HEADWAY is published by the Brain Injury Association of New Hampshire. The
Editor invites and encourages contributions in the form of articles, special reports and artwork. BIA of NH reserves
the right to edit or refuse articles submitted for consideration. The Association does not endorse, support, or recommend any specific method, facility, treatment or program mentioned in this newsletter. Please submit items to: Editor,
Brain Injury Association of NH, 109 North State St., Suite #2, Concord, NH 03301. For advertising rates please call
603-225-8400.
HEADWAY Newsletter
Winter 2006 - Page 3
A Second Chance
Continued from pg 1
Walt worked tirelessly to enhance the
treatment plan; developing new and creative ways for Karen to practice real life
skills. These skills had a direct connection
to the work that Karen would need to do
to return to her job as a flight attendant.
“We spent many hours practicing job skills;
lifting suitcases, pouring beverages and
balancing trays,” explained Walt. “This
was all part of a day’s work.” In addition,
Walt and Ellie assisted their daughter with
activities of daily living (ADL’s), check
writing and with helping her learn to drive
her car again.
During the course of her recovery, Karen
held firmly to the belief that although
difficult times were still ahead, she knew
the importance of “scraping her shoes and
moving on….”
Karen’s last day of outpatient therapy was
July 28, one hundred and four days after
the crash. Karen continued her steady
progress throughout the summer. On
September 14, she received a letter
medically granting permission for her to
return to work as a flight attendant.
On October 9, 2000, Karen met with
Northwest Airline physicians to review her
medical progress. The physicians agreed
that Karen should undergo an additional
six months of cognitive and speech therapy
before returning to work. In April 2001,
Karen realized her goal and returned to her
job and the life she dearly missed with
Northwest Airlines.
Life Today
Six years have passed since Karen survived
a traumatic brain injury. She has returned
to a normal routine, working as an international flight attendant for Northwest and
spending many of her off-hours exercising
at a local gym.
for adults with a brain injury
■
■
■
■
Supported Residential Programs
Residential Rehabilitation Programs
Supported Apartment Programs
24 Hour Staffing for All Programs
Her parents, Walt and Ellie, continue to be
a source of strength, visiting New
Hampshire numerous times a year. They
are grateful for being able to share special
moments and craft new memories with
their daughter. Mom and daughter
‘together’ days are a time of reflection and
thanks. “Be involved, support your loved
one, offer encouragement, be as knowledgeable as possible, and don’t be afraid to ask
questions,” are their words of wisdom for
other parents of brain injury survivors.
“Life today is good, although not the
same,” says Karen. “God puts challenges
in front of those who can take them on. I
never really talked with ‘Him’ before, but
now I thank Him for giving me my life
back. I feel that there is a reason for
me to be here.”
Es
tabl
i s h e d 19 8
3
www.robinhillfarm.com
55 Donovan Road, P.O. Box 1067, Hillsborough, NH 03244
Tel: 603-464-3841 Fax: 603-464-3851
e-mail: [email protected]
Brain Injury Community
Support Fund
by Erin Hall
The Brain Injury Community Support Fund is a collaborative program of the Bureau
of Developmental Services and the Brain Injury Association of New Hampshire. The
purpose of this program is to assist individuals with brain injuries live independently in
their communities. Eligibility requirements are as follows:
..
.
..
.
Quality of Life…
A New Hampshire Resident
Meet He-M 522 eligibility - which includes, and is not limited to, a diagnosis of TBI,
ABD, Stroke, Tumor, MS, Huntington’s Disease (Please note that being found eligible
for this program does not automatically make you eligible for Area Agency services)
Not eligible for the Community Care Waiver except for extreme circumstances as
determined by the committee
Financial hardship
Do not have other assets that could be accessed
Modest level of income
Funding has three broad areas: short-term financial crisis; transition back into and/or support to maintain community relationships; safe and dignified living. Services that could be
funded include, but are not limited to, therapies, respite, assistive technology, etc.
The Committee meets monthly on the third Wednesday of the month. All applications
need to be received prior to this date. The process is as follows:
..
..
..
All applications are sent to the BIANH c/o Erin Hall
Applications must include the following:
Description of services needed
Budget or cost bid (2 bids are needed)
Medical documentation of disability or signed release to obtain such documentation
What other resources have been tried
Incomplete applications will be returned and not reviewed until all information is received.
Individuals may apply for $2,000 per year. There is no lifetime cap.
If you would like more information on this program, please call Erin Hall at 225-8400.
Applications can be downloaded from our website at www.bianh.org.
Brain Injury Community Support Fund
A Collaborative Program of the State of New Hampshire Bureau
of Developmental Services and the Brain Injury Association
of New Hampshire.
If you are an individual living with a brain injury and find yourself
in a financial crisis, this program may provide assistance.
The purpose of the program is to assist individuals with brain
injuries live independently in their communities.
For more information or an application, please call Erin Hall at
603-225-8400. Applications can be downloaded from
our website at www.bianh.org.
------------------------------------------------------------------------------------------------------------
Neuro-Resource Facilitation Program
If you are struggling with attaining the appropriate services, think
about applying to the Neuro-Resource Facilitation Program.
This program aims to assist families and individuals who have
experienced a brain injury or stroke.
For more information or an application, please call
Erin Hall at 603-225-8400. Applications can be downloaded from
our website at www.bianh.org.
Brain Injury Association of New Hampshire
109 North State Street, Suite 2
Concord, NH 03301
Family HelpLine: (800) 773-8400
Phone: (603) 225-8400
Website: www.bianh.org
Winter 2006 - Page 4
HEADWAY Newsletter
REHABILITATION TIPS
Many rehabilitation professionals expect
recovery to plateau or taper off at some
point in their treatment program. This
belief usually terminates the formal
rehabilitation program and ignores what we
know about human development: growth
ceases only with death.
While there is no cure for brain injuries,
the brain does have some capacity to
repair itself and rehabilitation is crucial to
recovery from head injury-it uses both
your body’s natural healing and your
brain’s ability to relearn to aid recovery.
Rehabilitation also means learning new
ways to compensate for abilities that have
permanently changed due to brain injury.
Even when survivors are very motivated,
there can be periods of apparent lack
of progress. These may be times of
consolidation, where the individual is
gaining sufficient practice with the new
skills to make them become habits. In
other cases there may be other issues the
person is dealing with. When learning skills
are impaired, it is unreasonable to expect
the individual to learn new information
and behaviors every day.
After decades of experience many
rehabilitation professionals have found the
common keys to making the most of the
rehabilitation process.
ATTITUDE
Those who make the most of their
recoveries tend to have an optimistic outlook, are usually more giving and selfless
than most people, and don’t tend to give up
easily. Even if this isn’t your natural personality, this is the perfect time to develop
these traits! Those who do the best
usually look upon negative experiences as a
chance to grow and develop themselves
further.
People with brain injury often say rehabilitation is the biggest challenge of their lives.
While you may never get back to ‘normal’,
the good news is there is no limit to the
extent of your rehabilitation. How far you
get depends on how much you put in, and
even if improvement is painfully slow
remember progress is better than staying
where you are.
wherever they please and then can’t find
them. Tight structure reduces the need to
continually make decisions, vastly increases
capabilities and significantly reduces the
demands placed on the caregiver.
Upon discharge, try to develop a schedule
that includes as much activity as your
loved one can handle without becoming
too tired. Remember that fatigue, initiation
and motivation are often big problems after
an injury, so make gentle encouragement
the theme to home rehabilitation.
MEMORY PROMPTS
Hand in hand with structure are memory
prompts. If the individual is constantly
faced with situations in which they have
no recall and those around are constantly
mentioning this lack of memory, it may
eventually cause an erosion of self-esteem.
Create some strategies for compensating
for this problem by developing lists, post-it
notes, cue cards or any other strategies
that help the person feel more independent
and less likely to make mistakes and be
nagged or scolded.
STRUCTURE
Most of us lead highly structured lives: we
awake, sleep and work at the same times
each day. This kind of structure allows us
to put most of our lives on automatic pilot
and reserve creativity, memory, and
novelty for more important areas. After a
brain injury individuals often have no
structure. They nap throughout the day
and then can’t sleep at night, eat meals at
varying times and therefore can’t recall if
they have eaten at all, they leave things
Make sure you are provided with a sound
and realistic discharge plan. Once home,
don’t sit back and assume everything will
automatically fall into place. Establish
a routine (structured environment),
consistently enforce the discharge plan,
and make sure that your family member
has control over those aspects of their life
that are safely manageable.
As difficult as it may sound, troubleshooting as you go can ease any burden you may
assume in guiding your family member to
the optimal level of functioning possible.
Whether you have memory problems or a
legal case coming up, record everything in
writing. Keep copies of all your letters.
Record and date your phone calls. Ask
people for permission to record phone calls
if you think this is required.
FAMILIAR SETTINGS
INJURY PREVENTION
A brain injury often creates difficulty
learning new information and generalizing
new skills from one environment to
another. The most effective rehabilitation
occurs in the home setting where old
learning is maximized. When injured
individuals are transported to another city
or state, much of what they learn cannot
be applied when they return home. The
familiar cues which facilitated recall in the
treatment setting disappear and the new
behavior cannot be elicited.
One brain injury makes you much more
susceptible to further ones. Some of these
added traumas occur because of the
cognitive and behavioral deficits following
the original injury. The impulsive person
who has poor judgment may repeatedly
FEEDBACK ON BEHAVIOR
Individuals with a brain injury have
enough problems without increasing their
burden by accepting any and all behavior.
If family members tolerate behavior which
drives others away, the injured individual
becomes increasingly isolated from human
contact and the burden on the caregiver
can become immense. Provide accurate
and realistic feedback on their behavior
and its consequences.
SUPPORT GROUPS
Rehabilitation may be the hardest thing
you’ve ever done but look at it positively.
As Ronald E. Osborn said, “Undertake
something that is difficult; it will do you
good. Unless you try to do something
beyond what you have already mastered –
you never grow.”
while your family member is in a structured
setting. You know your needs best. Your
team needs to hear your opinions and
concerns. If you have trouble with
communication find someone you trust
to speak for you.
Support groups play a vital role in the
lives of people with brain injuries and their
families, and never more so than when the
individual completes rehabilitation and
finds that life is changed in ways that the
individual and the family find puzzling or
difficult to manage. Groups enable the
individual to identify with others with
similar problems, and together solutions are
often found. Additionally, as a result of
group interaction, the individual feels less
alone and a sense of “belonging” is very
important to those whose lives have been
dramatically changed.
GET INVOLVED
During the rehabilitation process, be as
involved as possible, ask questions, attend
family conferences and learn all you can
place himself in dangerous situations and
then be unable to cope. Apart from
supervision another useful tip is to avoid:
..
.
Exposure to toxic materials
Alcohol, nicotine, stimulants and other
recreational drugs
Exposure to megavitamin therapy.
Hopefully this information has been useful
to you and you will begin to think about
rehabilitation in terms of cognition and
behavior rather than medical and physical
problems. People who have sustained head
injuries have a great deal to offer to family,
friends, and society if they are given a
chance.
EVERYONE CAN WIN
Information, education and support, are
the three most important aspects of
rebuilding life after brain injury. Add to
that an equal measure of love, and it can
be a win-win situation.
This is one of over 100 fact sheets on brain
injury available at
www.biaq.com.au/facts.htm, reprinted with
the permission of BIAQ.
.FACT #6
The “silent epidemic” of
traumatic brain injuries has
become a major public health
problem facing the nation and
the people of New Hampshire.
HEADWAY Newsletter
Winter 2006 - Page 5
LEGISLATIVE UPDATE
by Kenneth C. Brown, Esq. Chair BIANH Public Policy Committee
are willing to work and advocate on the
behalf of individuals with brain injury
and their families.
Once again it is time for us to focus our
attention on legislative pursuits that will
enhance the lives of survivors and their
families. At the time of this publication,
all proposed bills are in the process of
being submitted to the legislature and
we are unable to review the context of
any legislation. Please check our
website at http://www.bianh.org for
legislation that we will be supporting or
contact Ellen Edgerly at 603-332-9891
for additional information.
Another legislative resource for you to
access is Webster-New Hampshire
State Government Online at
http://www.state.nh.us.
Our Brain Injury Public Policy
Committee continues to meet regularly
through occasional meetings in Concord
and teleconferencing. We are always
looking for individuals to help with
our endeavors and to serve on the
subcommittees. Our Association takes
pride in the committed individuals who
Our committee has created three public
policy subcommittees with the focus to
address the need for the development
of future legislation and/or successful
implementation of legislation. They
include:
1. Bicycle Helmet Awareness and
Education Committee
Chair: Doug Grouel
2. Cognitive Therapy Committee
Chair: Al Ouelette
Talking Points and Fact Sheet
Seat belts work by:
Reducing the risk of ejection from
the vehicle
Spreading crash forces over the
strongest bones of the body
Keeping the driver behind the wheel
and in control
Preventing unbelted occupants from
injuring others in the vehicle
.
.
.
.
70 years old and over (81%), and
those living in northern NH. (76%
each) (UNH Survey Center for NH
SAFE KIDS)
Why is this the time for NH to pass
a seat belt law?
. Between 1993 and 2003, NH has
Seat belt use reduces injuries
. In NH, from 1993-2000, unbelted
3. Trust Fund Committee
Chair: Newton Kershaw
The Brain Injury Association of New
Hampshire is a member of the Seat
Belts for All Coalition that will be
supporting seat belt legislation for adults
this upcoming legislative session. As you
can see by the below listed facts, there
is a strong correlation between seat belt
usage and brain injury. Please refer to
this information when making telephone
calls and/or writing letters to your representatives and senators. Please access
our legislative website for their names
and addresses.
. Approval was highest among those
.
occupants were more than twice
likely to suffer an incapacitating
injury as those who were belted and
20 times more likely to be ejected
from their vehicles. (NH
Department of Safety)
Those ejected from their vehicles
are 11 times more likely to suffer a
traumatic brain injury than those
who remain inside. (NHTSA)
A majority of NH residents supports
a seat belt law
In 2006, 67% of NH residents survey
indicated that they strongly or somewhat favor a law requiring belt use
by all. (UNH Survey Center for
Safe KIDS NH)
.
.
.
.
seen an increase of:
*28% in vehicles on the road,
*25% in miles traveled
*71% in crashes and
*40% in injuries.
In 2005, NH has 112 motor vehicle
occupant fatalities. (NH Department
of Safety)
The costs of these crashes continue
to rise and we all pay these costs.
NH voluntary seat belt use rate is
slipping compared to the nation as a
whole.
If you are interested in supporting brain
injury legislative efforts and would like
additional information relative to the
Brain Injury Public Policy Committee
and/or the Brain Injury Legislative
Network, please contact Ellen M.
Edgerly, Community Organizer at
603-332-9891 or e-mail address of
[email protected] or Ken Brown,
Public Policy Chair at 603-647-0300 or
e-mail address of [email protected].
ABD WAITLIST UPDATE
by Amy Messer, Senior Staff Attorney, NH Disabilities Rights Center
The United State District Court in
New Hampshire recently issued a
decision in Bryson v. Commissioner,
Department of Health and Human
Services, regarding the waitlist for
home and community-based services for
persons with brain injuries. Although
ruling in favor of the Defendants, the
Court did so only after finding that
during the course of litigation the State
had significantly increased the size of
the ABD Waiver program, devoted
substantial additional resources to
expand home and community-based
services and substantially reduced the
time individuals wait for services. After
seven years of litigation, the result is
expanded home and community-based
supports to individuals with acquired
brain disorders and traumatic brain
injuries.
In 1999 the Disabilities Rights Center
filed a lawsuit against the Department
of Health and Human Services alleging
that the long wait for home and
community-based care services for
individuals with brain injuries violated
individuals’ rights to community-based
services. When the lawsuit was filed,
there were approximately 50 people on
the waitlist to receive services, some
having already waited as many as seven
years. Most of these individuals were
languishing in institutional settings such
as nursing homes, psychiatric hospitals
and rehabilitation facilities. These
individuals were unable to return to
the community without the supportive
services available under the ABD
Waiver.
In 2001, the U.S. District Court held
that under Medicaid law, the State was
required to provide these services to the
individuals on the waitlist, and ordered
the State to provide community-based
services to everyone on the waitlist.
As a result of the Court’s ruling, the
State expanded the waiver and
provided funding to serve all of the
individuals on the waitlist at that time.
Within a year, nearly everyone on the
waitlist had been served. At the same
time, the Department appealed the
District Court’s ruling and the case was
heard by the First Circuit Court of
Appeals. In 2002, the First Circuit
overturned the District Court’s initial
ruling and sent the case back to the
District Court for further litigation.
Between 2002 and 2006, the
Department continued to expand the
ABD Waiver and provide for additional
individuals to be served under the
Waiver program, allowing an increasing
number to move from institutions back
into the community which significantly
improved their quality of life.
Throughout the litigation, the
Disabilities Rights Center heard from
many, many clients who talked about
the benefits of being back in the
community and encouraging the
Disabilities Rights Center to pursue
continued expansion of the Waiver.
In 2005, the case went to trial, and
by that time, the Department had
provided services to the majority of
individuals who had been waiting for
services for many years. The time on
the waitlist had been reduced to
approximately one year on average.
In September 2006, the District Court
issued another ruling in the case, this
time finding that the Defendants efforts
towards moving individuals off the
waitlist constituted a “comprehensive,
effectively working plan’ to move
individuals out of institutional settings.
As such, the Court concluded, the
Defendants do not violate the
Americans with Disabilities Act which
requires that individuals be served in
the least restrictive setting.
In making its findings, the Court
cautioned the State that they will
need to keep the waitlist moving at
a reasonable pace, and that their
“continuing obligation will remain a
legitimate subject for scrutiny”. What
this means for individuals with acquired
brain disorders and traumatic brain
injuries is that the State will need
to continue to provide adequate
resources to ensure that people do
not unnecessarily remain in institutions
as in years past.
While the Disabilities Rights Center
would have liked the Court to rule that
individuals have a right to move off the
waitlist and into the community in less
than a year, it is very pleased that the
litigation has resulted in a dramatic
increase in the number of individuals
that have moved from institutional
settings back into their homes and
communities. If you would like to know
more about the ABD Waiver or the
litigation, please contact the Disabilities
Rights Center at 603-228-0432 or visit
our website at www.drcnh.org.
Winter 2006 - Page 6
HEADWAY Newsletter
Upcoming Events - Mark Your Calendars!
William Dean Johnson, "Bill," Born in Los Angeles, CA
March 30, 1960
Bill began skiing at the age of seven in Boise, Idaho.
During that first year, his family recognized his
ability. At age 9, he moved to Brightwood, Oregon
where he continued his pursuit of skiing on Mt.
Hood as a member of local NW ski clubs. Traveling
by car and supported by family funding, he hit every
race that he could get to on the amateur circuit.
Following graduation from Sandy High School, Bill
entered Mission Ridge Ski Academy in the State of
Washington while attending Wenatchee Valley
College. At that time he entered selected
invitational US Ski Team Divisional events.
In 1980 he traveled to New York where he
competed in the downhill and won his race, qualifying for a spot to forerun the Lake Placid Olympics
downhill. The next day he was rushed to a race in
Canada at the request of the US Ski Team, and was
later officially accepted onto the team. He fit into
a spot as a member of the Europa Cup Downhill
Squad and competed on that circuit.
His Olympic Gold was won at Sarajevo, Yugoslavia
in 1984; following his worldwide television
announcement during the days of delays saying that
he was going to win.
That season he also won World Cup Races in
Wengen, Aspen and Canada.
His career covered a decade, while on and off the
US Ski Team.
Following his divorce and separation from his children, he found that what he knew best and could
do best was ski. He returned to the slopes with a
Vertical Challenge Pre-Registration
Form
Team name: _________________________________________________
Team captain (and shirt size)____________________________________
Address: __________________________________________________
Phone Number: ____________________________________________
Remaining 3 team members (if known)
T-shirt Size
(If no size given, a
large will be issued)
___________________________________
_____________
___________________________________
_____________
___________________________________
_____________
Teams are required to raise at least $350 in donations to
participate in the event.
Please use Pledge Sheets to record your pledges.
All money should be turned in the day of the event.
Registration must be received by January 12, 2007.
For more information and pledge forms, check our website,
www.billjohnsonverticalchallenge.org.
Please mail this form, along with the $50 registration fee, to:
Brain Injury Association of New Hampshire
Attn: Vertical Challenge
109 North State Street, Suite 2
Concord, NH 03301
(603) 225-8400
Please make checks payable to BIANH
coach and was making an attempt at a return for
another Gold Medal. While training and preparing,
he entered competition only to have a horrific fall
at Big Mountain in Montana, and suffered from a
traumatic brain injury in March of 2001. The
accident left the right side of his body in a weakened
condition.
On December 14, 2002, while still recovering, Bill
lost his balance on a patch of ice and broke his left
hip. He had been attending the Hartford Disabled
Ski Event in Breckenridge as their host all week.
Bill's Championship Achievements:
1st American to win a Europa Cup Downhill
1st American to win a Europa Cup Combined
1st American to win a World Cup Downhill
1st American to win an Olympic Gold Medal in Downhill
1st American to be twice National Downhill Champion
1st American to win the Aspen World Cup Downhill
1st American to win the Whistler BC World Cup Downhill
1st American to be Ranked #1 F.I.S. Men's Downhill Champion
Bill accomplished what no other American had
accomplished in an arena totally dominated for
decades by Europe's finest competitors.
Bill's personal quest for competitive excellence is a
classic storybook journey of one individual's efforts
to overcome insurmountable odds and challenges to
become virtually "America's Best."
He was and is presently involved with the Special
Olympics, and many others disabled
programs, as well
as the Brain Injury Association of America and its
many affiliates to raise awareness of their many
efforts.
Brain Injury Association of New Hampshire
4th Annual Bill Johnson Vertical Challenge for Brain Injury Awareness
Cranmore Mountain Resort, January 27, 2007
Sponsorship Opportunities
Name: ______________________________________________________
Company: ___________________________________________________
Address:_____________________________________________________
____________________________________________________________
Phone: _______________________ E-Mail: ______________________
Please check off your choices and drop this form in the mail to:
BIANH, 109 North State St., Ste. 2, Concord, NH 03301. Thank you!
____ Event Sponsorship
____ Bill Johnson Appearance Sponsorship
____ Bill Johnson Travel Sponsorship
____ Lunch Sponsorship
____T-Shirt Sponsorship
____ Most Vertical Sponsorship
____ Most Money Raised Sponsorship
____ Checkpoint Sponsorship
____ Raffle Prize Donation
____ Goodie Bag Items
$2000
$1500
$1000
$800
$500
$400
$400
$100
Describe:________________
Describe:________________
All sponsors will be recognized on the day of the event!
Sponsors who donate $500 or more will be recognized in the event program,
2007 Spring HEADWAY Newsletter, official t-shirt, Vertical Challenge website and
product placement in the skier goodie bags!
Call BIANH with your questions ~ 603-225-8400.
Brain Injury Association of New Hampshire 4th Annual Bill Johnson Vertical Challenge for Brain
Injury Awareness Cranmore Mountain Resort, January 27, 2007
HEADWAY Newsletter
Winter 2006 - Page 7
20th Annual Walk-by-the-Sea
by Lori Sandefur
October 1st marked the Brain Injury
Association of New Hampshire’s 20th
Annual Walk-by-the-Sea. In spite of the
clouds and rain there was little that dampened the spirits of the 300+ people that
turned out for the annual walk along
Hampton Beach. Newton Kershaw, President
of the Association, was there to welcome this
year’s participants followed by Executive
Director, Steven Wade. The 3.1 mile walk
was kicked off once again with a performance
by The Red Star Twirlers. Upon everyone’s
return to the pavilion, a luncheon was provided. While being served, guests were entertained by singer/guitarist, Michael Skinner.
Thank you to all the team captains and members who worked so hard on raising pledge
dollars. This year we had 25 teams registered.
The top 3 winners for Most Pledge Dollars
Raised were Bob Holmes, in the individual
non-team category, Jean and Linda Gill, in
the individual within a team category, and
SteppingStones Striders, for the team that
raised the most pledge dollars.
SteppingStones Striders had the largest number of walkers this year with forty members
participating and Barb’s Survivors walked off
with the most original name.
Holmes, Michael Painter, Robin Hill Farm,
the Red Star Twirlers, Carter Hill Orchard,
State of New Hampshire Division of Parks
and Recreation and the Hampton Beach
State Park employees.
Lori Sandefur
The Brain Injury Association of New
Hampshire would like to thank all of the
individuals, organizations and businesses that
contributed to this year’s walk. We could not
have done it without you! A special thank
you to Seacoast Coca Cola, Lakeview
NeuroRehabilitation Center, the Munson
Family, North Country Independent Living,
Bekah’s Burger Barn, Bob Tourangeau, 1st
Impressions Imprinted Sportswear, Bob
“Catch-up” conversations during the event
The Red Star Twirlers perform
Walkers gather under pavilion
VOLUNTEERS
WELCOMED!
We are seeking new volunteers to join us as a family and consumer directed
charitable organization. We rely almost exclusively on volunteers in
our work toward our mission, “to create a better future through
brain injury prevention, education, advocacy and support.”
Please indicate which committee you would like to join:
Larry and Joyce enjoy the day
_____
_____
_____
_____
_____
_____
_____
_____
_____
_____
_____
_____
_____
Prevention and education standing committee
Public policy and legislative advocacy standing committee
Direct support and service standing committee
School-based program and services sub-committee
Development and marketing study committee
Budget and finance study committee
Walk-by-the-Sea walkathon
Charity Golf Tournament
Bill Johnson Vertical Challenge ski event
Connections/peer support
Support groups
Annual Brain Injury and Stroke Conference
Bingo benefit/fundraising
------------------------------------------------------------------------------------------------------------Name: _______________________________________________________________
Address: _____________________________________________________________
State: _________________ Zip Code: ___________ Phone: _________________
Mike Skinner entertains the crowd
Email: _________________________ Best time to call: ______________________
Winter 2006 - Page 8
HEADWAY Newsletter
HELPING SURVIVORS TAKE THE NEXT STEP
The Krempels Brain Injury Foundation…Improving the lives of people living
with brain injury from trauma, tumor or stroke
By Erika Mantz
Did you know…
. It costs just $4,400 a year, or $50 a day, for a brain injury survivor to attend SteppingStones.
. trauma,
SteppingStones, a community-based post-rehabilitative program in Portsmouth where people living with brain injury from
tumor or stroke can find friendship and support as they rebuild their lives, keeps its costs down thanks to student
interns and community volunteers – 240 people providing more than 8,600 in-kind hours.
. andNotHuman
only does SteppingStones host student interns from the University of New Hampshire – 40 from its School of Health
Services and four from the Whittemore School of Business and Economics -- but for the fourth year it
welcomed two 8th grade students from the North Hampton School.
. experience.
New Hampshire State Police troopers have referred 10 young driving offenders to SteppingStones for a community service
They learn about SteppingStones’ commitment to prevention and education of brain injury in the community in
David Krempels
hopes they’ll make healthy choices in the future.
The gift – and the power -- of music
By Erika Mantz
Craig Werth with Mandelin
Joyce Anderson
Within the last year SteppingStones has
been organized into quarters, two academic semesters when interns from the
University of New Hampshire run the
programs that help survivors rebuild
their lives, and the winter and summer
enrichment programs, which focus on
the arts, music, travel and wellness. This
summer’s Enrichment Program brought
in more than 40 artists, musicians, holistic health practitioners and community
volunteers, as well a dozen student
interns.
"Music and art are the things that add
joy and beauty and meaning to a life,”
said the wife of a brain injury survivor
and a former SteppingStones staff member. “Functional skills are necessary to
exist but I would like our members to
move beyond just existing. There is so
much loss in their lives, and this is an
area where there doesn't have to be loss.
Bringing in artists goes far beyond entertainment. It's about helping people reconnect with things that make us all human.
For many reasons, people who suffer
from brain injury are cut off from the
things that bring the rest of us joy."
Recently, the Rotary Club of
Portsmouth made it possible for the
foundation to expand its arts and
cultural enrichment program for
SteppingStones members with a grant to
pay for a variety of musical instruments.
The music will continue!
John Perrault
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HEADWAY Newsletter
Winter 2006 - Page 9
? ? ? ? ASK JON ? ? ? ?
SUPPORT GROUPS
IN NEW HAMPSHIRE
by Jonathan Lanteigne
What I did on my summer vacation!
(Times and places may change without notice – please
call in advance)
Aphasia:
Seacoast: Aphasia Support Group, 3rd Monday of the month,
Community Campus, 100 Community Campus Drive,
Portsmouth, NH
Contact: Dave or Rosemarie
Phone: (603) 659-6161
Brain Injury:
Conway: 1st Wednesday of the month, 6:30pm, Northern
Human Servioces, Center Conway, NH
Contact: Joe Viana
Phone: (603) 539-7451
Derry: 2nd Friday of the month, 6:30pm, Nutfield Building,
Parkland Hospital, 99 Franklin Street, Derry, NH
Contact: Cathy Rudd
Phone: (603) 421-0609
Greenfield: 3rd Friday of each month, 5:00pm, Crotched
Mountain Family Advisory Group, 1 Verney Drive, Greenfield, NH
Contact: Trish Chickering
Phone: (603) 547-3311 ext 487
Keene: 4th Tuesday of the month, 6:00pm-7:30pm – HCS, 312
Marlboro St., Keene, NH
Contact: Cindy Carney
Phone: (603) 352-6556
Lakes Region: 3rd Thursday usually every other month,
7:00pm, Lakes Region General Hospital, 80 Highland Street,
Laconia, NH. call for upcoming dates.
Contact: Helen Robinson
Phone: (603) 279-3926 or in summer call (603) 744-2240
Nashua: 1st Wednesday of the month, 6:00pm, St. Joseph
Hospital (4th floor), Nashua, NH
Contact: Patti Motyka
Phone: (603) 882-3000 ext. 7501
Rochester: 2nd Thursday of the month, 6:00pm at Frisbee
Memorial Hospital, Rochester, NH
Contact: Paula Dempsey
Phone: (603) 539-8718
Seacoast: 1st Tuesday of the month, 7:00pm, North Hampton
United Church of Christ, North Hampton, NH
Contact: Lil Charron
Phone: (603) 659-5769
Upper Valley: 2nd Wednesday of the month, 6:30pm,
Dartmouth Hitchcock Medical Center, Fuller Board Room,
Lebanon, NH
Contact: Donna Crowley
Phone: (603) 650-7305
Wolfeboro: 2nd Thursday of the month, 2:00pm, SunBridge
Care and Rehabilitation for Wolfeboro, 39 Clipper Drive,
Wolfeboro, NH
Contact: Pam Mott
Phone: (603) 569-3950
Stroke:
by Jonathan Lanteigne
I have never had a summer vacation. I always take summer classes to help me stay on track with my education.
This provides me with an easier transition when the fall semester begins in September. However, this summer was
different and was a very interesting and rewarding time for me. At the beginning of the year, I had applied for, and
was notified that I was awarded a federal internship to work at the National Science Foundation (NSF) located in
Arlington, Virginia for the summer of 2006. The internship program was brought to my attention by the
Jon Lanteigne
TRIO/Student Support Services at New Hampshire Community Technical College in Manchester, NH and from my
counselor at New Hampshire Vocational Rehabilitation Center. Throughout my internship, I put to practice what I learned from college after completing my Associate’s degree in Computer Technologies in May 2006.
The Information Technologies Internship Program is sponsored by Microsoft and the American Association of People with Disabilities (AAPD). I was
one of 10 applicants from the entire United States awarded entry into the Microsoft-AAPD program. AAPD offers internship programs for college
students with disabilities to work in assignments in Washington, DC. The interns work in the executive, legislative, and judicial branches of the federal
government and in various federal government agencies to gain real world work experience as well as valuable employment contacts in the federal sector and disability community.
The first couple of days were exciting, busy, and full of new experiences. I unpacked my suitcases and set up all of my electronic devices including my
laptop, PDA, printer, and various other items that I brought with me to George Washington University (GWU) where I lived in my own apartment
for the summer. I quickly realized that moving into a strange and unfamiliar neighborhood was not an easy task. There was a list of items that needed
to be accomplished upon arrival and each one was at a different location on campus. This internship not only helped me learn new IT tasks, but also
taught me about being independent and relying on myself, because I was in an unfamiliar place without assistance from parents, teachers, or friends.
I had to use the Metro subway system for transportation from my apartment, to work, and back and I applied for a Metro system fare disability pass.
Since I arrived a few days early, I used the Metro to take practice runs to my new workplace each day so I could get an idea of the average time for
transportation during rush hour. Doing this made me feel very comfortable with the area and ready to go to work.
NSF has previously participated in the Microsoft-AAPD Federal I.T. Internship Program and is aware that specific accommodations might need to be
made in their workplace for persons who have a disability. I had many duties while working at NSF. All of these assignments related to my area of
study and included computer programming, upgrades, and equipment repair. I attended weekly meetings and provided NSF, AAPD, and my college
professor with feedback on what I had accomplished each week. I also received input from the teams on what I did or did not do correctly. Receiving
constructive feedback was one of the most rewarding experiences of the internship. I was not treated as a visitor. I was treated like any other employee of their organization. I was told when my assignments went as planned and when things did not go the way that they should have. The team gave
me the “tools” that would allow me to succeed in my next assignment.
What I gained from this internship was the ability to actually apply many of the learned skills from my college studies and the customer support skills
from my part-time job here in New Hampshire. Now I plan to continue my post-secondary education and then progress into a meaningful full-time
work setting. During the internship, I had the experience of exploring opportunities that I would not have previously considered, but I now realize are
available for me to pursue. I was able to practice skills in a real work setting to see what my career preferences are, and to narrow my focus when I
consider future possibilities for a particular type of professional position.
I have found that I have the ability to work on tasks that, in the past, would have been beyond my technical or physical ability. In the past, I would
not have even attempted to work on something that I was not familiar with. However, as I found out during the internship this summer, a person is
only restricted by what they do not want to try! As I have said in past columns, know your resources and work with them in order to find opportunities for yourself. Do not be hesitant to ask them for assistance. Do not be hesitant to try something new. Believe in your abilities and what you can
accomplish, and tell yourself, “I can do more, just give me the opportunity!”
CONNECTIONS CORNER
2007 Brain Injury Association of NH Calendars Available!
Manchester: 4th Wednesday of the month, 1:15-2:30pm,
Easter Seals, 555 Auburn Street, Manchester, NH
Contact: 1-800-870-8728
Manchester: 2nd Tuesday of the month, 6:30pm, Rehab
Medicine Unit, Catholic Medical Center, Manchester, NH
Contact: Ask-A-Nurse
Phone: (603) 626-2626
Peterborough: 3rd Thursday of the month, 1:30-2:30pm
Wellness Center, Peterborough, NH
Contact: Suzanne Baker
Phone: (603) 924-4635
Lebanon: 1st Tuesday of the month, 10:30am-11:30am,
Dartmouth Hitchcock Medical Center,
1 Medical Center Drive, Lebanon, NH
Contact: Jane Stephenson
Phone: (603) 650-5789
Nashua: 2nd Wednesday of the month, St. Joseph Hospital,
172 Kinsley Street, Nashua, NH
Contact: Karen Shaw
Phone: (603) 882-3000
Salem: 1st Saturday of the month, Northeast Rehab Hospital,
T-R Department, 70 Butler Street, Salem, NH
Contact: Kim Errico
Phone: (603) 893-2900 ext. 469
by Judy Sullivan, Connections Coordinator, Neuro-Resource Facilitator
The Brain Injury Association of New Hampshire is a non-profit organization receiving its funding from grants, membership,
fundraising events and donations. Through the generosity of many; the organization has been able to raise awareness, increase
prevention and develop needed programs that have supported families and survivors. It is our hope that the 2007 BIANH
Calendar will further these endeavors.
The 2007 BIANH Calendar displays each
artist’s expression of being a brain injury survivor. Each piece has its own unique story of
courage. The proceeds from this fundraiser will
go towards the Connections Program. The
Connections Program provides a support system
through phone contact to individuals or family
members who are experiencing brain injury or
stroke.
To order your 2007 BIANH Calendar, please
download a form from our website:
http://www.bianh.org or call Judy Sullivan at
(603) 225-8400.
Winter 2006 - Page 10
HEADWAY Newsletter
Spotlight on Aphasia
My name is David Halloran and I am
the founder of the “Aphasia Advocacy
Foundation.” Our lives were changed
forever on July 6, 1999 when I suffered
a Massive Stroke! Through this stroke I
have learned that…..
Speech is the Most Important Piece
of Communication and Aphasia Can
Happen To Anyone!!!
~~~~~~~~~~~~~~~~~~~~
Can you imagine if the last word you
uttered tonight was the last word you
would ever say with ease?
Aphasia is an acquired communication
disorder caused by injury to the brain.
It is most commonly due to a stroke,
but can also result from traumatic head
injury, cancer, or neurological disease.
At the time of my stroke my wife and
family were not told that I had aphasia
or what aphasia was. I was being
treated for stroke complications and
they were not given any hope for my
recovery by my doctor in the seacoast
area of New Hampshire. My family
was told that if I did live, I would be a
vegetable and it would be best if I were
put into a facility that could best care
for me long term. Through my wife’s
insistence, I was sent to Catholic
Medical Center, Rehab Medical Unit
(RMU) in Manchester, New
Hampshire. It was in their Acute
Rehab Unit that I came back to life.
With all of the problems that I had,
my speech loss had never been given a
name. After several weeks we were
finally told that I had aphasia. My
speech therapist at CMC RMU gave
me identification cards so that I could
point to what I needed. When I left
the hospital, speech services were
provided at Dartmouth Commons.
Here my therapist taught me to put
words together and to use strategies
when I couldn’t get the words out.
Through the next two years we learned
that rehabilitation was possible.
Through my wife’s dedication and my
eagerness to get back to what I had
once been, we decided that I would
continue with outpatient rehab and go
to as many group meetings as we could
find. At that time we found that there
wasn’t a place in the seacoast area of
New Hampshire for the survivor, their
caregivers or their families to get the
needed help or resources. We decided
to make this a priority. We also found
through others that once your
insurance or disability services where
exhausted, there was no place to go
for the rehab that you still needed.
I was fortunate to live within a few
miles of UNH and it was suggested by
several different young waitresses in the
area that I contact UNH to volunteer
for their Speech and Communications
Department. The Speech and
Communications Department refined
my speech and helped me talk in a
more natural style. They taught me to
put the words that I did have together
to make full sentences. They are still
working with me today to help me speak
in more normal patterns. Speech therapy for a person with aphasia is for life.
JUNE IS APHASIA AWARENESS MONTH
The APHASIA ADVOCACY FOUNDATION, Seacoast Aphasia Support Group and
the Aphasia Support Group of Catholic Medical Center held it’s 2nd Annual Walk-aThon on June 3rd at Massabesic Lake Park in Manchester, NH. Despite the heavy rains
we were still able to hold our Walk and picnic after. We would like to thank everyone for
the contribution they made. We had a great turnout and a great day.
Support Groups
Seacoast Aphasia Support Group, 3rd Monday of the Month , 7:00-8:30 pm
Held on the Lower Level, Community Campus, Portsmouth, NH
We were in Tampa in June of 2004 for
the National Aphasia Association’s
Speaking Out Conference. I was honored with the National Aphasia
Association’s Advocacy Award. The
realization hit that I have made a
difference to people with aphasia.
Driving home from Florida, we knew
there was more that we could do to
help victims of aphasia and their
families. We decided then and there
that we would find a way to combine
the needs of the victim and provide
continuing help and support for all
those that needed it.
When my wife Rosemarie and I
came home to New Hampshire we
developed and formed the “APHASIA
ADVOCACY FOUNDATION”. We
wanted to help other aphasia victims
with their recovery and most important
wanted to assist caregivers and families.
We wanted everyone to know that
there is help out there not only for the
victim but for the whole family. The
majority of people with aphasia are
discharged from hospitals without
knowing their condition has a name or
by David Halloran
that their condition can improve with
time, speech therapy, and/or
community support groups.
“Beyond survival for people with
Aphasia”
This is the “Motto” that we use to help
people with aphasia. Recovery is possible with continued therapy and support.
Most important we want all survivors,
families and caregivers to know that
they are not alone!
The Brain Injury Association of New
Hampshire believes in our mission and
they have allowed us to place these
articles in this newsletter to help educate and support people with aphasia.
This is the first of many articles about
aphasia and we hope that we can help
educate and support the people of New
Hampshire. If you have any questions
or suggestions, please feel free to contact us at www.aafnh.org.
Aphasia Advocacy Foundation
APHASIA IS a COMMUNICATIVE DISABILITY caused by damage to the language
centers of the brain, usually as the result of a stroke or head injury. It is not a loss of
intelligence. Each person with aphasia has a unique set of language disabilities depending
on which side and to what extent the brain is injured.
There is a sticker available to educate Police, Fire and Emergency Personnel that a person
with Aphasia is in the vehicle or in a home. Our goal is to have every person with aphasia
to have these stickers visible on the automobile that they drive or ride in. We are also
suggesting that they be put on the entrance door to the home that they live in.
There is no charge for a sticker. Please send a self addressed stamped envelope to:
AAFNH, P O Box 648, Stratham, NH 03885 and we will get a sticker to you.
“So what, you have Aphasia!” Your mind is still intact and we need your help.
Getting people educated about aphasia is no easy task. Not one person can do this; we all
need to do it together. Our goal is to educate people about aphasia. We need help and no
task that you can offer is too little.
Please become a member and help us with our “Mission”
Aphasia Advocacy Foundation: Mission/Vision
The Aphasia Advocacy Foundation (AAF) is dedicated to the advancement of the
quality of life and being for individuals with Aphasia and their families/caregivers
throughout their lifespan.
Catholic Medical Center Aphasia Support Group, 4th Tuesday of the month
6:30-7:30 pm, Level F at Catholic Medical Center, Manchester, NH
We aspire to increase society’s awareness of Aphasia through education, so that
communicative access to society is universally available to all those affected by Aphasia.
Aphasia Community Group of Boston ; Is moving to Sargeant College
E-mail us for dates and further information
We aim to provide education, training and coping skills for individuals with Aphasia via
group sessions, social re-integration activities and outreach programs.
Steppingstones and Seacoast Aphasia Support Group, Friday 1:00-1:50
Community Campus 2nd Floor Movie Room
We aim to provide education, training and coping skills for families/caregivers of
Individuals with Aphasia.
HEADWAY Newsletter
Winter 2006 - Page 11
Education Update
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By Lynne Flemming
It is estimated that each year 2,000 children sustain a traumatic brain injury and
10% of these children require long-term hospitalization. Most of the children that
sustain a brain injury require outpatient rehabilitation services. The majority of
children injured return to their home educational system. As the health care system
has changed, children are leaving the hospital sooner and returning to school while
still in the recovery process. Educators are now faced with meeting the needs of a
population that they have had limited contact with in the past. In an effort to
meet this need, the Brain Injury Association of New Hampshire has developed the
School-Based Support Program.
The goal of the Brain Injury Association’s School-Based Support Program is to
provide information to educators and families about brain injury and how the injury
impacts cognitive development and learning.
Services provided through the School-Based Support Program include:
Community based trainings open to educators
School-based (on-site) trainings designed to meet the needs of a specific
educational team.
Direct (one-on-one) consultation to specific team members regarding strategies for
implementing a student’s IEP.
Consultation to the educational team at the team meetings.
On-line discussion between educators and neurorehabilitation specialists using the
ListServ – “Educating New Hampshire’s Students with Traumatic Brain Injury”.
Resources on-line at the Brain Injury Association website: www.bianh.org
.
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The newest of the program’s services will be on-line training. It is anticipated that on-line
training will be available this winter. Educators will be able to choose a topic of interest
and receive contact hours for participating in the training at their own pace.
If you are interested in coordinating a training or consultation with your educational
team, please contact Lynne F. Fleming OTR/L, Coordinator of the School-Based
Support Program at (603) 225-8400 or [email protected]
Navigating the School System
/540!4)%.4!$5,4
Receive up to $100 to evaluate a program that teaches advocacy skills to parents
of children with brain injury.
The Oregon Center for Applied Science (ORCAS) is looking for parents/guardians of a
school-aged child with a brain injury to help us evaluate a web-based program on advocacy
skills. The research begins in early 2007. You’ll receive up to $100.00 to spend approximately
two hours viewing the program and completing three surveys. If you are interested in
participating in this evaluation please visit the link below and sign up on online.
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Brain Injury Association of NH "Headway"
Newspaper Ad Rates
Advertising Format and Rates
Size
1/2 page (10"w x 6-1/8"h or
4-7/8"w x 12-5/8"h)
1/4 page (5"w x 7 1/4"h)
Business Card (4-7/8"wx2"h)
http://study.braininjurypartners.com
Focus Group Participants Needed
The Brain Injury Association of America is producing new materials for the
National Brain Injury Information Center (NBIIC) and Brain Injury Awareness
Month 2007 that are to be focus-tested. These materials will include a poster
representing faces of people with brain injury and presenting the theme: Brain
Injury: As Diverse as We Are. The poster will be accompanied by four fact
sheets/vignettes of the people in the poster and include information and statistics
on the leading causes of brain injury along with resources. There will also be two
booklets on behavioral issues following brain injury and a guide for families and
caregivers. The NBIIC is also producing a new booklet about children and brain
injury to be disseminated to callers requesting information on brain injury and
children.
We are recruiting persons with brain injury and their family members for individual
interviews and focus groups. Focus-group participants will be asked to review
materials and then attend a 60-minute telephone meeting. The individual
interviews with persons with brain injury will take about 30-45 minutes. Each
participant will receive $50 for participating.
If you are interested or know someone who would qualify and be willing to
participate, please go to http://www.surveymonkey.com/s.asp?u=509282452479
in order to register for focus-testing of these new materials. Thank you for your
interest.
Sincerely,
Pat Britz, Project Director
Caroline, Feller, Consultant
2QH9HUQH\'ULYH*UHHQÀHOG1+
H[W
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HPDLORXWSDWLHQW#FURWFKHGPRXQWDLQRUJ
$ Per Issue
$470 p/issue
$355 p/issue
$165 p/issue
. The Headway Newsletter is published quarterly. BIA-NH can bill you on a per issue
basis or annually.
. Circulation: approximately 7,500
. Please supply us with a clear, black and white camera ready copy. Ad/artwork
cannot be submitted by fax.
How To Place Ads
Complete and submit the attached Advertising Insertion Order or call 603-225-8400
Monday – Friday, 9:00am to 5:00pm.
Please call for deadline dates for each issue.
………………………………………………………………………………………
.
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Annual Advertising Insertion Order
Name:_______________________________ Title:_________________________
Institution or Company:_______________________________________________
Address:___________________________________________________________
City:_________________________ State:______________ Zip:______________
Contact Person:____________________________ Telephone #:______________
Ad Size:___________ Issue: Spring Summer Fall Winter Year ______
___Payment Enclosed
___Bill to address above
___Bill annually
___Bill per issue (quarterly)
Attach ad copy
Special Instructions:__________________________________________________
__________________________________________________________________
Please send to: Brain Injury Association of NH , 109 North State Street,
Suite #2 Concord, New Hampshire 03301
Winter 2006 - Page 12
HEADWAY Newsletter
2006 Members and Donors
Thank You To All Our Members, Donors, and Event Supporters!
(reflects donations received from January 1, 2006 through September 30, 2006)
Beverly Abbott, RN
Abramson, Brown and Dugan
A. G. Edwards and Sons
Lynn Allen
All-Ways Accessible, Inc.
Area Agency for Developmental Services of Greater Nashua
Ascutney Mountain Resort
Diane Aubrey
Henry Badgley
Rhonda Barkley, MS, OTR/L
Paul Baron
Joe Barrett
Alan and Susan Bartunek
Daniel Becerril
Bekah’s Burger Barn
Trina Bergeron
Lee and Paula Bernard
Bernier Insurance
BJ’s Wholesale Club, Tilton, NH
Paul Blackford
John M. Blackford
Gene Blank
B. Mae’s Resort Inn and Suites
Bob and Terry Sports Outlet, North Conway
Body and Spirit Day Spa and Skin Care
Bill Bonin
Sandy Bonin
Jack Bopp
Boston Life Sciences, Inc.
Donna Bouchard
Madeline Boughter
Laurie Boyce
Jeanne Boynton
Jane Brickett
Jessica Browning
Judith Burton
Café on the Corner, Dover, NH
Jerry and Christine Campbell
Cannon Mountain Ski Area/DRED
Cantin Design
Capitol Distributors
Carter Hill Farm
Catholic Medical Center
Community Health Charities of NH
Lillian Charron
Community Bridges, Inc.
Mr. and Mrs. James Collins
Community Partners
Mr. and Mrs. James Cookman
Paul and Pat Corcoran
Jeffrey Cordts
Coyote Rose, North Conway
Crotched Mountain Rehabilitation Center
Nicole Dalbec-Joyal
Davis, Towle, Morrill and Everett Insurance Services
William DeGrauw
Peter Dekker
Patricia DeMarino
Donna DiBello
Disabilities Rights Center, Inc.
Dover Soul, Dover, NH
Scott Dow
Eastern Mountain Sports, North Conway
EICSL
Brant Elkind
Energy Improvements
Tom and Patti Ennis
Priscilla Erhardt
Judith Esburnett
Extreme Clean Car Wash, Meredith, NH
Gayle Feick
Jacquelyn Felix
1st Impressions Imprinted Sportswear
Ann Fitzgerald
Sandra J. Forest
Fratello’s/Homestead Restaurant
Funspot
Kevin Galeaz and Robin Galeaz
Glen Group, North Conway
Sheldon Grass
Francine Grenier
Gunstock Mountain Resort
Giles Ham
Phyllis E. Harding
Linda D. Harrington
Steve and Maureen Harris
Ellen and Brad Hayes
HealthSouth Rehab Hospital Employees
Melissa R. Herman
Hill’s Florist, North Conway
Horsefeathers, North Conway
Clinton and Ferne Huntemann
Mary Jane Holland
Mary Holmes
Home Depot Foundation
Hudon Kiwanis Club
Independent Services Network
Integrated Office Solutions
Leslie Johnson, Attorney at Law
Joe Jones, North Conway
Jubilation, Newton Centre, MA
Just the Thing!, Dover, NH
Ruth Kabel
Michael Keefe
Kathryn J. Kerigan
Newton Kershaw
John S. Kitchen, Esq.
Knights of Columbus, NH State Council 6902
Solange Knowles
Lahout’s Country Clothing and Ski Shop
Lakes Region Community Services Council
Lakeview Neurorehabilitation Center
Mr. and Mrs. Ronald Laramie
Catherine Lemire
Liberty Mutual
Living Innovations Home Care, Inc.
Lochmere Golf and Country Club
Daniel Long
Lucy Lumber and Hardware, North Conway
Dave Madden
Marie Magee
Michelle Magner-Lawson
Sally Ann and Larry Major
Michael Margareci
Stephen Marshall, Jr.
Linda and Timothy Marx
Annette Maurier
Norman Michaud, O.D.
LouAnn Michaud
Keith A.Migneault
Elizabeth G. Mills
Manchester Monarchs
Mary S. McGowan
Bernard McManus
Harold and Dolores McMillan
Janet Montecalvo
Moore Center Services, Inc.
Morgan Stanley Employee Annual Appeal Campaign
Mabel Mortlock
Karen Mossey
Mount Washington Resort
MPZ Landscaping and Irrigation
Karen Munsell
The Munson Family
Vivian Nash
Pamela Nation, PT
Dick and Glenna Nelson
NH 104.9/Nassau Broadcasting
NH Highland Games/NHSCOT
NH Bureau of Developmental Services
NH Troopers Association
Nicole’s Hallmark, Dover, NH
North Country Independent Living
Northern Human Services
Nuance, Dover, NH
James S. O’Donnell
Olympia Sports, Plymouth
Melissa Ostlund
Patient Lifts of New England
Patrick’s Pub and Eatery
PerfumeSisters.com
Kevin Perkins
Norm Peterson
Pheasant Ridge Golf Course
PIP Printing
Nicole Piscopo
Nate Plummer
Plymouth Ski and Sports
Ralph Porfido
Judy Pratt
Rodney and Elissa Proulx
R. C. Brayshaw and Company, Inc.
Rodgers Ski and Sport, Lincoln
Michael and Irene Reagan
Red Star Twirlers
Nancy Reid
Robin Hill Farm
Helen Robinson
Reverend Alice Roberts
Rose Meadow Farm
Jackie Rzasa
Jim Salmon
Susan B. Sasser
Brian Schofield
Seacoast Coca-Cola Bottling Co.
Seufert Professional Association
Shaw’s Supermarkets
Jack Silverman
Ski Fanatics, Plymouth
Myron A. Smith
Marion and Harding Sortevik
Spaulding Rehabilitation Hospital
Stan and Dan’s Sports, North Conway
Jeannine Stergios
St. Joseph Hospital
Lisa J. Svec
Synergy, North Conway
Tanger Outlet Center, Tilton, NH
Target
The Krempels Brain Injury Foundation
Louise C. Theriault
Rich Thibeault, Concord Country Club
Bob Tourangeau
Tyco Matching Gifts Program
Zoe Veasey
Steve and Patti Wade
Walk-By-the Sea Against Brain Injury 2006 Donors
Walmart
Waterville Valley Resort
Elizabeth Watman
Waukewan Golf Club
Robert A. Wells, Esq.
Wendy’s Restaurants
Ilene Wheeler
Al White
Elaine Wiesman
Barbara Wilson
Penny and Peter Wilson
Winnisquam Regional School District (Project Safeguard)
WKS/Residential Resources, Inc.
Pete and Penny Wilson
Elaine Wood
Robert Wood
Jeff Woods Construction
WPKQ 103.7, North Conway
Jacqueline L. Yarmo
Michael Cunningham Memorial Fund
Carolyn Allenby
Christopher Ankner
Dale Cunningham
Keith Cunningham
Linda and Thomas Dunn
Willaim and Elizabeth Furber
Linda and Brian Hayward
Marsha and Bruce Johnson
Adam Margulirs
Joel Miller Julie Murphy
Nancy and Jeffrey Phlegar
Robert Schoenthal
Lisa and Victor Svec
Doug Sweeney
Jeffrey Tabak
Lisa and Robert Wheeler
In Memory of Mary Auger
Paula Auger
Louise and Peter Tiews
Agnes Lastoria
David, Lori Gordan and Seth Lampert
Jennifer Steer
In Memory of Madeline Bando
Constance and John Archambault
In Memory of James A. Dugan III
Peter Cofran
In Memory of Captain Thomas Fitzgerald
Ruth Miller
Priscilla Richardson
In Memory of Kevin McCarthy
Mr. and Mrs. John Archambault
In Memory of Edward J. Murphy, Sr.
Collaborative Consulting, Burlington, MA
Lambert Funeral Home and Crematory, Inc.
Moose Hill PTA
Eric and Beth Soederberg
In Memory of Phil Pagano and Agnes D’Urso
Mr. and Mrs. John Archambault
In Memory of Carol Scaison
Carol and Silvio Giangregorio
Richard and Frances Morse
Mr. and Mrs. Joseph Paradise, Sr.
Anne Quigg
In Memory of Todd D. Williamson
Kristin Hoffman
In Honor of Jon Kell
James and Jane Kell
In Honor of Michael Silton
Richard G. Silton
In Honor of Dan Tomalonis
Michele Magner-Lawson
____ Yes! I want to help support brain injury programs and services in New Hampshire.
Individual Giving Levels
$50-$99
$100-$249
$250-$499
$500-$999
$1000-$1999
Other ______
Monthly gift by credit card
$4-$8 monthly
$8-$20 monthly
$20-$41 monthly
$41-$83 monthly
$83-$111 monthly
Monthly gift: _____
For organization, business or corporate support levels, please call
the Brain Injury Association of New Hampshire office at 603-225-8400.
Name _________________________________________________________________
Address _______________________________________________________________
City _____________________________________________ State _____ Zip _______
Telephone ____________________________ Email ___________________________
Survivor
Family/Friend
Professional ___________
One-time gift $________
Monthly gift $_________
Amount Enclosed _________
Payment Method:
Check/Cash
Visa
MasterCard
Discover
Other ___________
Account # _____________________________________________ Exp. Date _______
Signature ______________________________________________________________
This gift is in honor of: ___________________________________________________
This gift is in memory of: _________________________________________________
I wish to designate my United Way, CFC, SEC gift to BIANH
I have applied for a matching gift from my employer
I’m interested in including BIANH in my estate planning
I’d like to volunteer, please contact me
Message to BIANH:
_____________________________________________________________________
_____________________________________________________________________
_____________________________________________________________________
Brain Injury Association
of New Hampshire
109 North State Street,
Suite 2, Concord, NH 03301
Phone: (603) 225-8400
Family Helpline: (800) 773-8400
www.bianh.org
Help Us Fulfill Our Mission –
Become a Member!
~~~~~~~~~~~~~~~~~~~~~~
Membership Benefits Include:
. Complimentary subscription to
the quarterly newsletter entitled
. HEADWAY
Membership in the Brain Injury
Association of America
wallet card
. Membership
Recognition in the Brain Injury
Association of New Hampshire’s
. publications
Informational and educational
on request
. materials
Notice of meetings, events and
. conferences
Voting rights at the Annual
. Meeting
Access to the Brain Injury
Association of New Hampshire’s
Family Resource Library
.~~~~~~~~~~~~~~~~~~~~~~
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