THE Challenge! Spring 2011

Brain Injury Association of America
Spring 2011
Volume 5, Issue 2
communication

THE Challenge!
THE Challenge! is published by the
Brain Injury Association of America.
We welcome manuscripts on issues
that are important to the brain
injury community. Please send
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please visit the sponsorship and
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Association Staff & Volunteers:
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Greg Ayotte
Contents
3 | Communication Strategies
following a Brain Injury
8 | A Father Explains his Son’s
Challenges Following a TBI
9 | Classifying Brain Injury
as a Chronic Disease
Carol Bray
Susan H. Connors
Alexandra deGraffenreid
Robert Demichelis
Sarah C. D’Orsie
Anne Forrest
Jessica Kerney
Laurie J. Kusek
Mary S. Reitter
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THE Challenge!
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Copyright 2011 BIAA
All rights reserved
No part of this publication may
be reproduced in whole or in part
without written permission from the
Brain Injury Association of America.
Email requests to
publications@biausa.org.
11 | Caregiving, Year after Year:
how to Ask the Family for Help
13 | Advocacy Update
14 | Brain Injury Awareness Day
15 | Honor Roll of Donors
18 | Affordable Care Act
23 | State Affiliate News
25 | Resources – Assistive
technology
27 | News & Notes
29 | Advertiser Index
Publication designed by
Eye to Eye Design Studio LLC
Email: eyetoeyedesignstudio@gmail.com
1 THE Challenge! | Spring 2011

From my desk
President’s Message
Americans shell out $1.5 trillion
each year for insurance
premiums. We buy financial
protection for ourselves and our
possessions so that we can sleep better
at night. Frequently that protection
falls short of our needs. Sometimes it
is because we are tricked by the “fine
print,” but more often key terms and
conditions are presented upfront and in
plain sight – we just don’t know what
they mean.
Recently I learned that when your home
is destroyed, by a flood for example, a
typical homeowners’ policy will pay for
you to live elsewhere while your home
is rebuilt. The catch is, you only get one
year of free rent. For many families,
12 months is not enough time to assess the damage, clear the
debris, hire an architect, obtain the permits, build a new place
and furnish it in your own way. This is especially true if your
home is destroyed in a common disaster. When the demand
for rebuilding is high, the process slows down and the costs
skyrocket so standard coverage is insufficient.
Just like homeowners insurance, health insurance is often
inadequate in catastrophic situations. Lengths of stay aren’t
long enough, there aren’t enough specialized providers in the
network and there’s too much paperwork and red tape. And just
like building a new home, rehabilitation is a slow, sometimes
painful, process. The outside walls go up quickly, but the inside
work takes a long, long time. And like home maintenance,
disease management is an ongoing process.
Whether buying homeowners insurance or health insurance,
most people agree that “hindsight” is 20/20. Wouldn’t it be
great if “foresight” were 20/20 too? That is, wouldn’t it be
great if we knew what we were buying before we bought it?
One of the goals of the health reform law is to make health
insurance plans more transparent. The Patient Protection and
Affordable Care Act authorizes the National Association of
Insurance Commissioners to work with stakeholders to develop
“coverage facts labels.” These labels will be similar to the
nutrition facts labels on the food we buy – the labels will tell
us what’s inside the policy. Information labels sound like a
good idea until we remember that some people don’t know how
much protein or sodium they need and even fewer know what
trans fat or dietary fiber are!
Over the last 30 years, individuals with
brain injury have learned the hard way
that OT, PT, speech, personal care and a
wide range of other services are needed
after brain injury. Of course, everyone is
different so the type and amount of each
therapy or service needed vary widely.
As advocates, it is our job to raise
awareness of brain injury and to help
others understand the complex issues
individuals and families face every day.
As advocates, it is our job to communicate
our needs, goals and choices to friends,
family, professionals and the general
public, including lawmakers.
This issue of THE Challenge! is all about
communication. It describes why speech
language, receptive learning and word
finding is sometimes difficult after brain injury. It offers useful
tips for talking with others after the injury. It explains why many
people in the field are now thinking of and talking about brain
injury as a chronic disease.
This issue also highlights the presentation delivered by Anne
Forrest during Awareness Day on Capitol Hill, as well as the
remarks of Rep. Bill Pascrell, Jr. and legislative staff from Rep.
Gabrielle Giffords’ office, who joined BIAA’s National Medical
Director Dr. Brent Masel at a recent press conference to urge
Health and Human Services Secretary Kathleen Sebelius to
write favorable regulations under the Affordable Care Act.
As always, THE Challenge! includes an update on federal
advocacy activities and news and notes from BIAA’s chartered
state affiliates, including the successful Brain Injury Awareness
Month activities conducted across the country. Last, but
definitely not least, this issue sends a great big shout out to
the individuals and organizations that generously support our
mission. Personal donations and corporate sponsorships make
our day-to-day work possible. We are truly grateful.
Susan H. Connors, President/CEO
Brain Injury Association of America
THE Challenge! | Spring 2011
2

THE Challenge!
Communication Strategies Following a Brain Injury
By Roberta Brooks, M.A. CCC/SLP, CBIS for Social Communication Group, Drucker Brain Injury Center, MossRehab Hospital, Philadelphia, PA
Communication is everywhere. It is all around us and it
is within us. It is impossible to avoid communicating
with other people. Our body language and facial
expressions can either invite or dissuade communication with
those around us.
Because there are so many different aspects to communication,
there are many ways in which communication problems can
occur as a result of brain injury. The good news is there are
tools available to improve communication skills after an injury.
Communication is traditionally defined as:
“an exchange of
information between
(at least) two people using
a common code, which may
involve words, gestures,
behaviors….”
(Silverman and Miller, 2006, p5.)
Communicating with Others
Communicating with other people serves two purposes. The
first is to share ideas and information. The second is to develop
and maintain relationships. There are certain rules in the use of
language that are applied for exchanging information. These
rules include speaking concisely, taking turns in conversation
and providing new information, that is, not repeating
information that is already known to your listener. (Grice 1975).
A brain injury can sometimes make it difficult to use these rules.
Language for Exchanging
Information
Speak concisely: Word finding problems and the possibility of
“losing the train of thought” can result in an individual needing
to pause in order to find a particular word or describe the target
word. Losing the train of thought may bring an unexpected topic
shift that results in the listener becoming confused or uncertain
as to the point the speaker is making.
Provide new information: Memory problems may result in
repeating information that has already been given or leaving
out important information that needs to be given.
Take turns in conversation: Because word-finding
problems may result in increased pause time between words,
communication partners may attempt to help the conversation
along by finishing the sentence for the person with brain injury.
Conversely, this person may be fearful of forgetting a point he
or she wants to make and will interrupt another speaker to make
that point. It is important for individuals with brain injury to
develop diplomatic ways of letting a listener know he or she
needs additional time to talk and/or give the listener permission
to help in the word finding processes. It is also important for
those with a brain injury to learn to make judgments about
when it may be necessary to forego interrupting or how to
acknowledge the need to interrupt another speaker.
Language for Building
Relationships
Start a conversation and keep a conversation going: In
addition to the issue of interrupting others, people with brain
injury may have difficulty starting a conversation or keeping
a conversation going. Decreased memory and decreased
initiation can result in difficulty keeping a conversation going.
Research has shown that people with traumatic brain injury
tend to use fewer words and shorter sentences. (Coehlo,
C.A. 2002). A person with TBI also tends to rely more on
the communication partner to control the conversation and
be less likely to ask questions that move the conversation
3 THE Challenge! | Spring 2011

Communication
Strategies
forward. (Coehlo, C.A.; Youse, K.M.; Lee, K.E. 2002). In
addition to initiation and memory problems, disinhibition
and distractibility may result in abrupt topic changes or a
communication partner hastening to end a conversation.
(Ylvisaker, M.; Szekeres, S.; Feeney, T. 2001).
Speech and Emotion: A brain injury can impact the emotion
involved in speaking in several different ways. A person’s
speech may be less clear after an injury. Words may not be
formed as well or volume may be reduced. Speech may also
have less inflection (e.g., variety of pitch or melody line when
talking). This may cause an individual to be self-conscious
about speaking. Also, if there is less inflection in the voice,
an unfamiliar listener may misinterpret the lack of inflection
as meaning disinterest. There are also instances where the
injury can result in the person having decreased ability to
accurately interpret the facial expression or tone of voice of
the communication partner.
Table 1 lists strategies that may be employed
by both the person with a brain injury and the
communication partner to work together to
achieve successful communication interactions.
Cognitive-Communication Strategy List
Problem strategies for speaker strategies for Communication Partner
Reduced Initiation
Disinhibition
Word Retrieval
Losing Train of Thought
Tangential (or unrelated)
Communication
Decreased Memory
Decreased Ability to Read
Non-Verbal Aspects of
Communication
Decreased Ability to
Vary Tone of Voice
Distractibility/
Slowed Processing
1. Decide before your meeting or appointment what
you want to talk about.
2. Encourage the other person to talk about him/herself.
1. Ask yourself before you speak: Do I want this
information to be public?
2. Ask yourself before you speak: Will this information
hurt or embarrass me or anyone else?
1. Focus on the idea, not the words.
2. Try to create an image in your mind and
describe it.
1. Mentally review what you have said and/or restate
the last thing you said.
2. Ask your listener to restate the last thing you said.
1. Accept feedback when someone says they are
having trouble following the conversation.
2. Announce topic shifts.
If you tend to repeat yourself, let your listener know:
“Stop me if I have told you this.” Always asks others:
“How are you?”
Let people who are close to you know you need
them to tell you how they are feeling.
Let people know what you are feeling.
1. Speaking slowly encourages others to do the same.
2. Hold important conversations in quiet rooms.
1. Conversations can be started by the other person.
2. Call attention to areas of interest.
Encourage the person with the brain injury to preview
the message in his or her mind before speaking and
think about the impact on self or others.
1. Encourage the person with brain injury to focus
on the idea not the words.
2. Give the person time to talk.
1. Give the person time to mentally review what
was said.
2. Ask if you should restate the last thing said.
1. Let the person know you are having difficulty
following the conversation.
2. Request clarification on the topic or the basis
for the change.
Consider cueing the person, for example:
“Do you want to know how my interview went?”
Tell the person how you are feeling.
Ask the person how he/she is feeling.
1. Call the person by name and give him/her time
to look at you before you start to speak.
2. Speak at a slightly reduced rate of speech.
(Continued on pg. 5)
THE Challenge! | Spring 2011
4

THE Challenge!
Communicating with Yourself
Personal Journals and Planners: Writing down your
thoughts and ideas can support memory and increase awareness
of both personal strengths and barriers. For many, the use of a
daily planner is critical in managing a daily routine. In addition,
others report the use of a daily journal is also helpful in allowing
them to reflect on the interactions and accomplishments of the
day. For many people, the act of writing things down increases
the likelihood the event will be remembered. The written record
guarantees recall.
Indeed, many people who have not sustained a traumatic brain
injury incorporate a daily journal into their routine. Sometimes
a brain injury may negatively affect writing and spelling or the
physical ability to write. Digital tape recorders, speech to text
software or text software that offer possible word selections
Routine for using my journal to help my
memory and concetration – Morning:
1. Each morning after breakfast, sit down with your journal
and write a brief summary of what you would like to
remember about YESTERDAY. It is a good mental
exercise to reflect on the previous day and write about it in
your journal. It may be something you did, someone you
spoke to or someone you called. It may be something you
were pleased about. Write those things here.
Yesterday was (Day) ___________ (Date) ____________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
2. Today is (Day) ___________ (Date) ____________
One thing I plan to do is:
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
after the first several letters of a word have been entered on the
keyboard, (e.g., word prediction software) can be used to create
a verbal journal or an electronic journal. Fraas and Balz (2008)
explored the use of electronic journal writing with supportive
software for organizing ideas among six individuals with
acquired brain injury. Following the conclusion of the 10-week
study, five of six participants indicated they would like to join
an online writing group again.
A structured journal can certainly be undertaken without the use
of a computer. It is important to determine whether it is better
to write in the journal at the end of the day or to make a note
in the journal the following morning. This decision is based
on individual differences in memory skills and fatigue level at
the end of a day. Sample texts for a structured journal page are
shown below:
Routine for using my journal to help my
memory and concetration – Evening:
1. Each evening, sit down with your journal and write
down two or three things you would like to remember
about the day. It is a good mental exercise to reflect on
the day and write about it. It may be something you did,
someone you spoke to or someone you called. It may be
something you were pleased about. Write those things
here.
Today is (Day) ___________ (Date) ____________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
2. At the bottom of the page, write down one thing you
plan to do TOMORROW.
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
_______________________________________________
5
THE Challenge! | Spring 2011

Communication
Strategies
Personal Logs: The use of a personal log can be helpful in tracking progress toward an individual goal, such as increasing
sustained attention for reading or improving the ability to start a conversation. Below are two examples of a personal log.
TOPIC
Person Spoken to
Comment
The Weather
Sports ("Did you see last night’s Eagle’s game?")
Movies or TV ("Have you seen any good movies?")
Current events
Hobbies
Past knowledge of the person
(For example "How was your vacation?")
Compliments
Commenting on something in the area where you are
Work (For example "How is work going?")
Relationships
Before starting the conversation: Think to yourself:
o Is this a good time to start a conversation?
o Repeating a person’s name when you meet them,
may help you remember the name.
o Think about looking at the person you are talking to.
o Think about the impression you want to make:
(friendly, serious, interested in others)
Week of
Monday
Tuesday
Wednesday
Thursday
Friday
Saturday
Sunday
What I Read
Amount of Time
I read/# of pages
Fatigue Level
at End (1-5)
The purpose of this log is to keep track of how long you read each day
before you become tired or can no longer concentrate on what you are
reading.Try to read a little each day.
1 = NOT TIRED 5 = EXHAUSTED
Pay attention to how long you read before you feel yourself becoming
tired. Stop reading when you feel tired and rate the level of your fatigue.
References:
Coehlo, C.A. (December 2002). Story narratives of adults with
closed head injury and non-brain injured adults. Journal of Speech
and Hearing Research. Vol. 45: 1232-1248.
Coehlo, C.A.; Youse, K.M.; Lee, K. E. (2002). Conversational
Discourse in closed-head injured and non-brain-injured adults.
Issue of Cognition. Aphasiology. 16, (4/5/6): 659-672.
Fraas, M.; Balz, M.A. (2008). Expressive Electronic Journal
Writing: Freedom of Communication for Survivors of Acquired
Brain Injury. Journal of Psycholinguistic Research. 37:115-124.
Grice, H.P. (1975). Logic and Conversation in (eds) Cole, P. and
Morgan, J. Studies in Syntax and Semantics III: Speech Acts. New
York Academic Press. 183-198.
Silverman, F.; Miller, L. (2006). Introduction to Communication
Sciences and Disorders, Thinking Publications University.
Ylvisaker, M.; Szekeres, S; Feeney, T. (2001). Communication
Disorders Associated with Traumatic Brain Injury in Chapey R.
(Ed.) Language Intervention Strategies in Aphasia.- 4th Edition.
Lippincott, Williams and Wilkins. 745 – 808.
THE Challenge! | Spring 2011
6

THE Challenge!
7
THE Challenge! | Spring 2011

A Father’s Story
A Father Explains his Son’s Challenges Following a TBI
By Tom Constand, Owner, Starrconstand Business Communication
Thomas is my son. He’ll be 17 on May 25th. He sustained his TBI in a
boating accident. He and two other friends were riding jet skis on Crooked
Lake in northern Michigan last summer when they collided. My son’s
head and shoulder were hit by the hull of the other jet ski as it went airborne and
passed over his watercraft, shearing off the steering column in the process. Pulled
semi-comatose out of water and driven to shore by his friends on the other, stillfunctioning
jet ski. Three days in induced coma. Swelling was outside skull, not
inside. There was evidence of shearing in the brain. Thomas had six weeks of
physical, cognitive and speech therapy after the accident. This still affects his
abilities in fast-moving sports, such as lacrosse. Other than that, though, things
are remarkably well. 3.8 GPA in school. (Same level as pre-injury).
Below is the letter I distributed to Thomas’ JV football family last year. My wife,
Deb, and I sent a similar letter to Thomas’ teachers before fall classes.
Hey, gang.
“I feel different. I don’t feel alive.”
First of all - you’ve all been incredible with your support over these past two weeks. You have no idea how your emails,
calls, visits, and Facebook postings have been so instrumental in getting us through. Thank goodness for the Crackberry!
Most of you know by now that Thomas was discharged last night. The shoulder MRI was the last thing holding us up, and
the result was that no surgery is required. So we loaded up the truck, and headed to Chipotle (Food, that is. Burritos,
Fajitas...Iced Tea). He was so happy to get out of the hospital and into his own bed – as were we!
While we’re thankful for his prognosis and thrilled to begin the recovery phase, it’s that phase that I’m reaching out to
you for a little assistance on.
On behalf of Thomas, his sister Stephanie, and Deb - I thank you all for your prayers, your kindness, and your love.
Thomas sustained a traumatic brain injury (TBI). He looks fine: his appearance is absolutely normal, his speech is fine,
and his memory is completely intact. There are no visible signs - except for minor discoloration from his black eye that’s
nearly gone – of his injury. His shoulder will hurt for a while from a couple of broken bones and slight ligament tear,
however no surgery is required and it will heal soon enough on its own.
But since he’s regained consciousness – as he tells us and his friends “I feel different. I don’t feel alive.” This is
completely consistent with a TBI. It’s why there will be months of therapy ahead of us. The brain takes its own time
for the neurons to begin reconnecting pathways. During that time, he will feel as if he’s in a fog. He will tire easily, and
when he does – he will “check out” of conversations and stare into space. He’ll become emotional, he might anger
easily, he’s impulsive. Exactly what and when these symptoms might manifest themselves is somewhat unpredictable,
but the point is that people need to be aware that despite his normal appearance, he’s not “all better.” Not yet. It’s not
like a broken leg or arm that you can cast and six weeks later, it’s fine. He will definitely not be playing football this year,
and while we’re targeting lacrosse in the spring as the time when he might return to competitive physical sports, even
that is not a sure thing.
I guess I’m asking for three things: 1. That people understand he’s not completely “back” yet, and won’t be for a while.
2. That when he does exhibit signs/feelings that might seem strange, know that this comes with a TBI and be
understanding. 3. He needs the patience and support of friends and family (you’re all family!) more than ever during these
months of therapy. While his “not feeling alive” might be consistent with a TBI, it’s nonetheless heart wrenching for him and
for us. The only things that will get him out of the bubble he feels trapped in are love, support, understanding...and time.
Tom
THE Challenge! | Spring 2011
8

THE Challenge!
Classifying
Brain Injury
as a Chronic
Disease
By Brent Masel, M.D., President and Medical Director,
Transitional Learning Center, Galveston, TX
9
Implicit in the nomenclature, Traumatic
Brain Injury (TBI), is the notion that trauma
to the brain is the result of an injury and
that the injury will heal. Medical conditions
that are referred to as injuries most often have
a prescribed protocol for treatment that almost
always results in a resolution that cures the
injury. However, this is not the case with TBI.
By its very nature, each TBI has its own unique
signature, which will manifest as one of, or a
constellation of, neurological effects. While
many of the 1.7 million TBIs sustained annually
in the U.S. are, indeed, injuries from which each
patient recovers, or is cured, more than 125,000
of these are permanent and incurable. For these
TBIs, the classification of “disease” is more
appropriate than that of “injury.”
Disease is defined in the Free Online Dictionary
as representing a “deviation from or interruption
of the normal structure or function of any body
part, organ or system that is manifested by a
characteristic set of symptoms and signs and
whose etiology, pathology and prognosis may
be known or unknown.” And, the results of a
TBI can be described in these terms.
Take the first phrase of the definition: a “deviation from or
interruption of the normal structure or function of any body
part, organ or system…” The results of a TBI do cause these
things to affect the individual’s brain and neurological system.
The next part states that these deviations and interruptions “…
are manifest by a characteristic set of symptoms and signs…”
which applies to the constellation of symptoms associated
with a TBI. The definition concludes with “…whose etiology,
pathology and prognosis may be known or unknown,” which
speaks to the progressive disease process initiated by a TBI.
This is why it
is imperative
that the medical
insurance
industry, medical
community, and
the communityat-large,
understand TBI
as a disease
state that is
progressive in
that, over time,
it has deleterious
effects on other
organ systems.
THE Challenge! | Spring 2011
In general, the insurance industry uses the term
“sickness” rather than “disease” to describe TBI.
Sickness is defined by one medical insurance
industry provider as: “illness, disease of condition
of a covered person which first manifests itself
after the effective date of the policy and which
this policy is in force for such person. Sickness
includes any complications of recurrences
that relate to such sickness while the policy
is in force of the person.” (H. Kelso, personal
communication, June 30, 2008). When applied
to TBI, this definition implies that TBI is a onetime
illness that has a beginning and a resolution.
While this is the case for many individuals who
sustain a TBI, it is not the case for quite a few.
This is why it is imperative that the medical
insurance industry, medical community, and the
community-at-large, understand TBI as a disease
state that is progressive in that, over time, it has
deleterious effects on other organ systems.
Scientific data exist that supports the fact that
neither an acute TBI, nor a chronic TBI, is a
static process – that a TBI impacts multiple
organ systems, is disease-causative, and diseaseaccelerative.
Classification of TBI as the beginning of a disease
process would facilitate treatment as outlined for the full
continuum of care, which should be paid for by medical insurers
and managed on a par with other diseases
Despite the fact that individuals with a TBI who survive the
acute event do not die of their brain injury per se, TBI is
a disease. There are many similar examples in the field of
medicine. Chronic kidney disease is an independent risk factor
for cardiovascular disease. Patients with chronic kidney disease
are more likely to die of cardiovascular disease than end-stage
renal failure. Patients do not succumb to AIDS. They die from
other diseases, such as pneumonia, caused by the AIDS disease.

Classifying
Brain Injury
And indeed, diseases can be caused by external forces such as
injuries. An individual sustaining a severe chemical burn to the
lungs will develop chronic lung disease that may then cause
or accelerate cardiac disease. Although the phenomenon is not
clearly understood, following chemotherapy, many patients
may develop disabling problems with memory, attention,
multi-tasking and other domains of cognitive function, known
as “chemo brain.”
In a 2004 study on mortality one year post TBI among 2,178
individuals with a moderate-to-severe TBI, it was reported that
individuals with a TBI were twice as likely to die as a similar
non-brain-injured cohort and had a life expectancy reduction
of seven years. Follow-up studies on causes of death revealed
that individuals surviving more than one year with a TBI
are 37 times more likely to die from seizures, 12 times more
likely to die from septicemia, four times more likely to die
from pneumonia, and three times more likely to die from other
respiratory conditions than a matched cohort from the general
population. The greatest proportion of deaths in the study –
29 percent – was from circulatory problems.
Several neurologic disorders are associated with TBI, all of
which present a level of disability, with varying degrees of
severity. TBI is a major cause of epilepsy, accounting for
five percent of all epilepsy in the general population. Visual
disturbances are common with TBI, as are sleep disturbances
and hypersomnia. TBI can be a risk factor for the development
of Alzheimer’s disease. It also can cause Chronic Traumatic
Encephalopathy (CTE).
Classification of TBI as the beginning
of a disease process would facilitate
treatment as outlined for the full
continuum of care, which should
be paid for by medical insurers and
managed on a par with other diseases.
A moderate-to-severe TBI is associated with a host of
neuroendocrine disorders, including hypopituitarism; growth
hormone (GH) deficiency/insufficiency; hypothyroidism; and
gonadotropin deficiency in both men and women. Each of these
disorders has negative effects associated with them; each of
which leads to a progressive disease process.
Incontinence, both of the bladder and bowel, can occur with TBI
because it frequently affects the cerebral structures that control
bladder storage and emptying functions. TBI also causes sexual
dysfunction. Additionally, it causes musculoskeletal dysfunction
(Continued on pg. 28)
THE Challenge! | Spring 2011
10

THE Challenge!
Caregiving, Year after Year:
How to Ask the Family for Help
By Garry Prowe, Author of "Successfully Surviving a Brain Injury: A Family Guidebook"
We all know that being the primary caregiver for
someone who lives with a serious brain injury is
debilitating to your health. Prolonged stress, fatigue,
and neglect of your own interests and well-being, year after
year, can wreak havoc on your physical and mental health.
Your extended family and friends most likely were supportive
and helpful in the days and weeks following your loved one’s
injury. But eventually they returned to their daily lives and
responsibilities, leaving you alone to face the daily grind of
caregiving.
Now, I’m assuming that you recognize the need for help and
have discarded any feelings of guilt or embarrassment about
asking for and accepting the aid and support of others. I’m also
assuming that you are well aware that an unhealthy, unrefreshed
caregiver is a poor caregiver.
So, how do you find the time to refresh yourself? Who can
relieve you of your caregiving responsibilities for a few hours,
a few days, or even a week or two? Recharging your battery can
take some time, especially if it’s been years since you properly
cared for yourself.
For many observers,
a brain injury truly
is invisible.
But, you can always rely on your family, right? Wrong. All too
often, caregivers tell me, “We feel abandoned by his family. We
asked for help in the past, but they always had excuses. So, we
stopped asking.”
With some extended families, this refusal to help is to be
expected. They weren’t close before the injury, and there’s no
reason to expect it to bring them closer. This is unfortunate,
but it’s out of your control.
Otherwise, there are many reasons why family members won’t
help. They have families of their own to care for. They can’t
miss work. They live far away. They no longer connect with
your loved one; his impairments discomfort them. Or, they
simply can’t be bothered to interrupt their busy lives.
If your loved one is high-functioning, the extended family may
see no need for help. He is out of medical treatment. He walks,
talks, and looks “normal.” He may even drive a car. Therefore,
his recovery must be complete. So, why do you need help caring
for him?
This line of thinking often leads to the classic excuse for not
helping, “You’re pampering him. Let him stand on his own two
feet. He doesn’t need help. He’s just lazy and irresponsible.”
(Continued on pg. 19)
Most of us cannot afford to hire someone to
look after our loved one. Plus, if he or she has
emotional and/or behavioral issues, finding
the right person for the job can be a challenge.
This leaves friends and family.
Since you’ve been devoting much—if not
most—of your time and energy caring for your
loved one, you probably have been unable to
maintain old friendships and cultivate new
ones (except perhaps for the folks in your
caregiver support group, who, of course,
require help themselves). Consequently, the
size of your social network probably has
decreased, just when you need it the most.
Garry and Jessica Prowe
11
THE Challenge! | Spring 2011

THE Challenge! | Spring 2011
12

THE Challenge!
ADVOCACY UPDATE
By Sarah D’Orsie, Director of Government Affairs, Brain Injury Association of America
This spring, BIAA remains focused on health care reform, appropriations, TBI
Act and more. With the appropriations climate more uncertain than ever, BIAA
has tirelessly advocated for brain injury programs in Congress by meeting
with both Appropriations and authorizing Committees to drive home the importance of
brain injury services and rehabilitation. Fiscal Year 2011 appropriations had not been
finalized by press time; BIAA is monitoring the negotiations closely while continuing
work on Fiscal Year 2012 funding. Although government spending will likely be
limited, we look forward to a successful policy year for the brain injury community.
BIAA Unveils 2011
Legislative Fact Sheets
On March 16, 2011, BIAA released its 2011 legislative fact
sheets highlighting critical public policy issues for people
with brain injury, including: access to care, research, TBI Act
appropriations and reauthorization, military, and membership in
the Congressional Brain Injury Task Force. BIAA is excited to
move forward these priorities in the 112th Congress. Go here to
download the fact sheets: www.biausa.org/biaa-advocacy.htm.
President’s FY2012 Budget
After analyzing the President’s proposed FY2012 budget in
February, BIAA is pleased to report that programs authorized
by the TBI Act, including the Health Resources and Services
Administration (HRSA) Federal TBI Program and the Centers
for Disease Control and Prevention (CDC’s) important TBI
work, have both been recommended to receive at least the same
funding found in FY10 final and FY11 Continuing Resolution
(CR) appropriations bills, $10 million for HRSA and just under
$7 million for CDC.
The CDC collects data, links both military and civilian
populations with TBI services, increases public awareness,
and conducts public health research. The HRSA Federal TBI
Program funds 18 states to improve systems coordination access
to care for people with brain injury.
Also, the budget aims to preserve the TBI Model Systems of
Care Program, funding 16 centers, two collaborative research
centers and one technical assistance center. Originally, it was
thought the budget recommended to discontinue two centers,
but after clarification from the National Institute of Disability
and Rehabilitation Research (NIDRR), BIAA is confident that
all aspects of the program will be renewed.
The TBI Model Systems are a collection of research centers
located across the United States that conduct disability and
rehabilitation research under grants administered by the
National Institute on Disability and Rehabilitation Research
of the U.S. Department of Education. They are the only source
of non-proprietary longitudinal data on what happens to people
with brain injury. The TBI Model Systems are a key source of
evidence-based medicine, and serve as a “proving ground” for
future researchers.
BIAA will continue to work with legislators to ensure that
Congress understands the importance of these programs and
how they affect the 1.7 million people across the United States
with brain injury.
Sports and Concussion
On March 16, 2011, Reps. Bill Pascrell, Jr. and Todd Russell
Platts, as well as Sen. Tom Udall, introduced bipartisan legislation
aimed at protecting youth athletes from the dangers of sportsrelated
traumatic brain injuries.
The Children’s Sports Athletic Equipment Safety Act (HR
1127/S 601) would ensure that new and reconditioned football
helmets for high school and younger players meet safety
standards that address concussion risk and the needs of youth
athletes. The bill also increases potential penalties for using
false injury prevention claims to sell helmets and other sports
equipment.
BIAA endorsed the legislation and provided technical assistance
during the writing of the bill.
Other
In January, President Obama signed into law the Frank Melville
Supportive Housing Investment Act, amending Section 811, the
Supportive Housing for Persons with Disabilities program. The
law will provide a new authority to the Department of Housing
and Urban Development (HUD) to allocate long term operating
assistance funds to states where a strong supportive housing
plan exists to link services to mainstream affordable housing for
persons with disabilities.
13
THE Challenge! | Spring 2011

Brain Injury
Awareness Day
Brain Injury
Awareness Day
By Laurie Kusek, Director of Communications, Brain Injury Association of America
Brain Injury Awareness Day on
Capitol Hill was held on March 16,
2011. As in years past, advocates
and Congressional staff attended an
awareness fair, briefing and reception. This
year’s briefing focused on Brain Injury
Rehabilitation and Re-Entry: Lessons
Learned and the Road Ahead, with speakers
emphasizing the importance of rehabilitation
in maximizing recovery for people with brain
injury.
“One of the first commitments I made after
becoming a congressman 14 years ago was to make the U.S.
Congress, and the public, aware of the dangers of traumatic
brain injury (TBI). As part of that commitment and in my role
as co-chairman of the Congressional Brain Injury Task Force,
every year I host a day on Capitol Hill dedicated to brain injury
awareness,” said Rep. Bill Pascrell (D-NJ), who co-chairs the
task force with Rep. Todd Platts (R-PA). “I speak as an advocate
for brain injury patients, and what we need now is support –
support for better policies for our service members, support for
federal guidelines to protect our student athletes, and support
for healthcare reform so that no matter your insurance, you will
have access to care.”
Seven panelists were invited to speak about the research,
education and importance of rehabilitation they’ve been
involved with at their institutions and with their families.
Speakers included Brig. Gen. Richard W. Thomas, Army
assistant surgeon general, force protection; Col. Jamie B.
Grimes, director, Defense and Veterans Brain Injury Center;
Kathy Helmick, deputy director, Defense Centers of Excellence
for Psychological Health and Traumatic Brain Injury; Patty
Horan, wife of a wounded warrior, Army Capt. Patrick Horan;
2011
Dr. Lisa McGuire, research team leader,
Division of Injury Response, Centers for
Disease Control and Prevention; Dr. Keith
Cicerone, director of Neuropsychology
and Rehabilitation Psychology at the JFK-
Johnson Rehabilitation Institute and New
Jersey Neuroscience Institute, JFK Medical
Center (one of 16 TBI Model Systems
research centers under the Department
of Education); and Dr. Anne Forrest,
traumatic brain injury advocate, formerly
senior economist at the Environmental
Law Institute.
As reported by the Army News Service, Patty Horan, wife of
Capt. Patrick Horan, shared that Patrick suffered a gunshot
wound to the left side of his head while serving in Iraq in 2007.
The injury left him completely disabled. It destroyed his ability
to walk, he lost all coordination and sensation on the right side
of his body and he lost the ability to read, to write, to speak, to
understand language, and it also destroyed his right visual field.
“In the early stages of rehab, I was completely overwhelmed.
His injury was so debilitating, I could not even imagine how he
could possibly recover,” Patty said. “I thought our life would be
lived in institutions, isolation, and unrealized dreams.”
Capt. Horan began rehabilitation five weeks after the initial
injury and about three months later the doctors told Patty that
Pat would never be able to communicate effectively again. “My
sister-in-law found a blog which talked about (a facility). Our
neurosurgeon supported our decision, so we moved,” Patty said.
At the center, Pat was given five hours of therapy a day,
consisting of occupational, physical, speech, recreational and
cognitive therapy, as well as community re-entry. “Because of
(Continued on pg. 21)
Patty Horan Audience, Brain Injury Awareness Day 2011 Anne Forrest
THE Challenge! | Spring 2011
14

THE Challenge!
(HONORS)
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Phi Beta Chi
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Score-Norwalk
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January 1, 2011 – March 31, 2011
HONOR ROLL OF DONORS
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and Joseph Lubar
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15
THE Challenge! | Spring 2011

Honor Roll of Donors
Ms. Mary Reitter
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In memory of Michael E. Spaar
Ms. Betti Kelly Schuster
(TRIBUTES)
In tribute to Rob Cox
Mrs. Ellen Shilllinglaw
In tribute to Paul Elias Crincoli
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In tribute to Cody Dellamano
Mr. and Mrs. Robert and Joanne Simmons
In tribute to Michael A. Follmer
and those suffering from Brain Injuries
Mr. Andrew J. Follmer
In tribute to Jessica Hinshaw
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Mr. Robert Kopsak
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(GENERAL DONATIONS)
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THE Challenge! | Spring 2011
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Thank You!
16

THE Challenge!
17
THE Challenge! | Spring 2011

Rep. Giffords’ staff, Rep. Pascrell and BIAA
Join Together on Affordable Care Act Provision
By Sarah D’Orsie, Director of Government Affairs, Brain Injury Association of America
A
recent article in USA Today, “For
Brain Injuries, a Treatment Gap,”
accurately reports the need for
individuals who sustain brain injuries to access
medically-necessary rehabilitation of sufficient
scope, intensity and duration from licensed
professionals in accredited settings to regain the
physical abilities and cognitive skills needed to
live healthy, independent and satisfying lives.
Following publication of this article, which
gained national attention, both Rep. Bill Pascrell (D-NJ)
and the office of Rep. Gabrielle Giffords (D-AZ) worked
with BIAA to submit letters to Sec. Kathleen Sebelius at
the Department of Health and Human Services (HHS). The
letters detail the existing coverage variability and urge HHS
to solve this access to care deficit by writing regulations that
include a comprehensive definition of rehabilitation within
the rehabilitative and habilitative services category of the
Affordable Care Act essential benefits package.
On April 7, 2011, BIAA, Rep. Pascrell, and the office of
Rep. Giffords called a press conference to announce the
submission of both letters to HHS. BIAA’s national medical
Dr. Brent Masel
Affordable Care Act
director, Dr. Brent Masel, spoke about the
critical need for access to care for people with
brain injury as Lauren Alfred, a staff member
for Rep. Giffords, highlighted the merits of
rehabilitation. Rep. Pascrell emphasized the
many policy implications of access to such care
through the treatment of the Affordable Care
Act regulations currently in the hands of HHS.
On April 8, 2011, Rep. Pascrell circulated a
“Dear Colleague” letter to all members of the
House of Representatives. The correspondence asks members
to author and submit similar letters to HHS in support of this
issue and of Rep. Giffords as she recovers. In response to this
request, BIAA sent a package to affiliates including a sample
letter, talking points, and all supporting documents to present to
their members of Congress and Senators during the district work
period between April 18, 2011 and April 29, 2011.
BIAA hopes to enlist as many members of Congress as
possible to urge HHS to consider an inclusive definition of
rehabilitation so that all people with brain injury have access
to the comprehensive care that Rep. Giffords is currently
receiving.
THE Challenge! | Spring 2011
18

THE Challenge!
Caregiving, Year after Year: How to Ask the Family for Help
(Continued from pg. 11)
Families, unfamiliar with the wide range of impairments that
can accompany a brain injury, tend to confuse a survivor’s
reduced initiation and inability to perform even simple tasks,
such as preparing a meal, with laziness. Their ignorance of the
many challenges caused by a brain injury is something you do
have some control over.
Before giving up on the family, you should try to educate
them about brain injury, in general, and about your loved one’s
specific impairments. For many observers, a brain injury truly
is invisible. They fail to see the mix of physical, cognitive,
emotional, behavioral, social, and communication complaints
that you and your loved one deal with every day. The members
of your extended family, who do not interact with your loved
one often, may honestly see no need for help. It’s likely that only
you know how hard your loved one works to appear “normal” to
others. Only you see him at his worst, at his most vulnerable.
The family also may not understand how much time and energy
you spend helping your loved one. They may not see how much
he depends on you. They may not see the sacrifices you make to
allow him to have a better life. This is no time to be proud. It’s a
time for a frank discussion of how your lack of help is harming
both you and your loved one. You also may suggest carefully
that if your health fails, the full caregiving burden will fall on
the extended family.
So, unless you’ve already tried, now is the time to educate
your extended family. This instruction can take many forms.
It can be a conversation, in person or over the phone. However,
providing literature on brain injury from a dependable source
is a better choice. Written material can be read and reread
and digested slowly. Later, you can describe your loved one’s
impairments and your continued efforts to help him within the
context of the written material you have strongly encouraged
the family to read. One resource is BIAA’s website: http://
www.biausa.org/brain-injury-family-caregivers.htm.
A powerful educational tool, if you have it, is the report of your
loved one’s neuropsychological testing, which is often performed
during rehabilitation. Neuropsychological testing identifies a
person’s core disabilities, such as impaired memory, attention,
concentration, initiation and executive functioning. Many of the
challenges faced by your loved one can be traced back to one or
more of these core impairments, which often are permanent.
You also can ask extended family to meet with one of the
medical professionals treating your loved one. Or, they can visit
a brain injury support group, whose members will be more than
happy to educate them.
I’m not suggesting that education is guaranteed to get more of your
family involved in your loved one’s care. But it may, and if only
one family member begins to help, it will be well worth the effort.
19
THE Challenge! | Spring 2011

THE Challenge! | Spring 2011
20

THE Challenge!
Brain Injury Awareness Day 2011
(Continued from pg. 14)
Pat’s great strides and a fantastic case manager, we were able to
reside at this facility for an entire year. I believe this was the key
element in the miraculous recovery he has today,” she said.
“Brain injury rehabilitation has given me my husband back. It’s
given us the opportunity to live a free and independent life and
pursue our dreams. For us, rehabilitation has turned this injury
into a bump in the road instead of a life in prison,” Patty said.
Dr. Anne Forrest, an advocate for traumatic brain injury, was a
senior economist at the Environmental Law Institute before her
car crash near the Lincoln Memorial 13 years ago. “Hospitals
were afraid they wouldn’t get paid by the insurance company
for more of my care. When I told them that I would pay out of
my pocket, they said they couldn’t do that.
“There’s a huge gap between what insurance companies are
willing to pay to get someone back to community function and
what I want, to get back working for a living,” Forrest said.
“What makes policy? Persistence and advocacy and that’s what
you are about and why you’re here today,” said moderator
Bobby Silverstein, who is the counsel for the Disability and
Rehabilitation Research Coalition and former staff director
and chief counsel, Senate Subcommittee on Disability Policy,
Committee on Health, Education, Labor and Pensions.
Looking for more than
traditional outpatient
therapy can offer?
Beyond Therapy ® is an aggressive rehabilitation program
that challenges people with spinal cord or brain injury to
reactivate every last ounce of ability to achieve a healthier,
stronger body. Created by Shepherd Center and based
on innovative research in activity based training, Beyond
Therapy ® integrates intense physical therapy and exercise
physiology to help people with disabilities get stronger,
return to school, return to work, and lead healthier lives.
Beyond Therapy ® is located in Atlanta, Georgia
and Nashville, Tennessee.
To schedule an evaluation for either
location, call 404-352-2020 or visit
shepherd.org/bt for more information.
Shepherd Center, based in Atlanta, Ga., specializes in medical
treatment, research and rehabilitation for people with spinal cord
injury or brain injury. It is one of the top 10 rehabilitation hospitals
ranked by U.S. News & World Report.
21
THE Challenge! | Spring 2011

Expressing emotions shouldn’t be
left to chance • Many people who have had a traumatic brain injury also suffer
from a neurologic condition called pseudobulbar affect (PBA),
which causes sudden, involuntary outbursts of crying or laughing
• Up to 10% of people with traumatic brain injury are thought to
have symptoms of PBA
• More than a million Americans suffer from PBA, including people
with other underlying neurologic conditions such as Lou Gehrig’s
disease (ALS), multiple sclerosis (MS), and stroke
If you or someone you care for shows signs of having PBA, talk to your doctor or visit
PBAinfo.org. You can also share your PBA experiences at facebook.com/PBAinfo
© 2010 Avanir Pharmaceuticals, Inc. All Rights Reserved. PBA-0071-ADV-0911
THE Challenge! | Spring 2011
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THE Challenge!
State
Affiliate
News
Arizona
The Brain Injury Association of Arizona unveiled a re-developed
online version of its Information and Referral Program. Through
this online version, consumers and professionals can easily
access brain injury providers in Arizona as well as articles about
brain injury and living with brain injury. Go to www.biaaz.org
and click on “Resources” to access the information.
Arkansas
The Brain Injury Association of Arkansas welcomed two new
board members this year. Anita Andrews, MA, LPE, who is
interested in promoting education and prevention within the
state, and Sonja Dillard, an individual with brain injury, who
will focus her energy on making a difference for TBI survivors
through education and awareness. New executive board
members elected for the 2011-2012 term are Dana Austen,
president; Kortney Coats, vice president; Loretta Alexander,
secretary; and Drake Mann, treasurer.
Iowa
The Brain Injury Association of Iowa held its19th Annual State
Conference, “From Concussion and Coma to Community,” at
the Sheraton in West Des Moines, IA. BIA of IA is also hosting
numerous “Lunch and Learn” opportunities throughout the
year and Certified Brain Injury Specialist testing sessions. For
more information on any of these events or to register, visit
biaia.wildapricot.org. BIA of IA announces Kay Graber, vice
president of its board of directors, was recently nominated
and selected to receive a regional “9 Who Care” award for her
commitment to and work with the association statewide and
nationally. Ms. Graber also received a $500 check to go to a
charity of her choice and selected the BIA of IA as the recipient.
She was also nominated for the Jacqueline Kennedy Onassis
Award and will travel to Washington, D.C., this summer for this
national event.
Nebraska
The Brain Injury Association of Nebraska celebrated Brain
Injury Awareness Day at the Nebraska Capitol on March 9,
2011. BIA-NE hosted a legislative briefing in the morning and
a proclamation signing in the afternoon. BIA-NE helped to host
the 5th Annual Brain Injury Conference in Kearney, Neb., May
19-20, 2011. BIA-NE’s first ever "fun-raiser" was held at the
Big Apple bowling lanes in Kearney on May 19.
THE Challenge! | Spring 2011
New Jersey
The Brain Injury Association of New Jersey helped to support
the passage of A-2743, concussion legislation to protect student
athletes across New Jersey’s interscholastic youth sports
programs. Governor Chris Christie signed the measure into law
in December 2010. A copy of the Advance Law can be read at
www.njleg.state.nj:us/2010/Bills/AL10/94_htm. To learn more
about BIANJ’s advocacy efforts visit www.bianj.org.
North Carolina
The Brain Injury Association of North Carolina hosted its annual
Ride for the Rock in March and five walks statewide for its
annual Walk & Roll-athon in March and April, and a 5K run in
Raleigh. For a complete list of upcoming events, call 1-800-377-
1464 or visit www.bianc.net. With the support raised from these
events, BIANC will spread awareness, train professionals and
provide support to families, military and caregivers.
Ohio
“Letting gratitude be our attitude!” has become the Brain Injury
Association of Ohio’s rallying cry. Recently, BIAOH celebrated
the opening of two Community Support Network (regional)
offices in Dayton and Kent, collectively serving 11 Ohio
counties and home to an estimated 17,700 Ohioans living with
brain injury. Thanks to Ohio’s Federal TBI Program Grant,
and the generosity of Goodwill Easter Seals of Miami Valley
and the Mental Health & Recovery Board of Portage County,
which helped in housing and mentoring the association’s
newest CSN Coordinators. BIAOH recognizes its ongoing
partnerships with programs benefiting OEF/OIF service
members and veterans, such as those administered through
the Ohio National Guard, Ohio’s Family and Children First
System and OSU’s TBI Model Systems Program, to combine
forces to better recognize and accommodate the needs of
children and adults with brain injury. BIAOH focused on Brain
Injury Awareness Month activities during March; Legislative
Advocacy Day in the Statehouse Atrium on April 14 (sponsored
by the Developmental Disabilities Council & Nisonger Center
for Excellence), the 5th Annual Walk for Thought in Columbus
on May 28 with planning underway for other locations on
alternate dates. BIAOH will host its 30th Annual Meeting
and Conference October 27-28, 2011, at the DoubleTree in
Columbus. To learn more about these and other upcoming
events visit www.biaoh.org.

State Affiliate News
South Carolina
The Brain Injury Association of South Carolina welcomes
incoming officers of its board of directors, Kay Brooks,
president; Thomas Seastrunk, president-elect; Malcolm
Crosland, secretary; and Sherry Caldwell, treasurer. BIASC
thanks Elaine Phillips, past-president, for doing an exceptional
job leading the association for the past two years as president.
BIASC held its 4th Annual Run for Thought, a 5K race
and 1 mile walk/roll to raise awareness of brain injury on
Saturday, March 19, in Greenville. Mark your calendar
for June 16-17, 2011, for BIASC’s annual “Life with Brain
Injury” Conference in Columbia.
Wisconsin
The Brain Injury Association of Wisconsin announces its BIAW
News newsletter is going green. The BIAW News will now
be distributed electronically by email and will only be mailed
by request. To view the newest BIAW News newsletter, visit
www.biaw.org. “Portraits of Brain Injury: Wisconsin Stories”
is a collection of personal stories shared by individuals with
brain injury and family members from around the state. The
stories chronicle how the injuries occurred, the struggles
and accomplishments, met and unmet needs, and how the
individuals are doing today. To learn more, contact BIAW
at 262-790-9660 or admin@biaw.org.
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THE Challenge!
resources
Resources for
Assistive Technology
and Brain Injury
By Gregory Ayotte, Director of Consumer Services, Brain Injury Association of America
The right assistive technology (AT) product can significantly improve a person’s day-to-day abilities. Most people think
of assistive technology as something complicated and expensive. There is a wide range of devices, programs and tools
available to help a person improve his or her day-to-day functioning. Families and people with brain injury contact the
Brain Injury Association with questions about assistive technology. The two questions asked most often are: how can I find out
what devices are out there, and how do I pay for them once I find them?
Locating the right AT device
Identifying the specific needs of the person, and the possible
interventions is a crucial first step. Following are some
resources to help locate possible devices.
A searchable database of assistive technology devices that offers
reviews, product information and more: www.abledata.org
A database of AT devices with information about funding,
assessments and more: www.assistivetech.net/
Many states have an AT Center. These centers can be
instrumental in identifying appropriate professionals to
complete an assessment to identify the possible ways AT devices
may be instrumental in increasing independence. The site has a
useful “Frequently Asked Questions” section www.ataccess.org/
faq/default.html) that addresses many of the questions parents or
family members may have:
www.ataccess.org/community/centers.lasso
Offers (for a fee) a searchable database with information and
reviews on thousands of assistive technology devices. Also
offers a newsletter (for a fee) with information written by
experts in the field: www.closingthegap.org
A company that focuses on assistive technology for people with
cognitive impairments: www.ablelinktech.com/
A book offered by the Alliance for Technology Access focusing
on computer resources for people with disabilities:
www.ataccess.org/resources/atabook/default.html
Funding for Devices
It can be difficult to find funding for AT devices. There is a
variety of possible national and local funding sources. Some
sources are public (e.g., Medicaid, Vocational Rehabilitation)
and some are private (e.g., Lion’s Club, Modest Needs).
The Assistive Technology Program can be a useful resource.
These programs, which operate in all states, work to improve
access to AT products and services. Most states also have an
Assistive Technology Alternative Financing Program, which
offers information on alternative financing for AT devices.
You can locate the office in your state by visiting:
www.resna.org/AFTAP/state/index.html
Some states offer funding or loans for AT through other
programs. These programs are listed at:
www.resna.org/AFTAP/state/otherloans.html
The National Center on Workforce and Disabilities has an
article about people who wish to return to work and may
require AT:
www.onestops.info/article.php?article_id=22&subcat_id=3
Non-governmental funding sources
SHARE Foundation
Telephone: 508-999-8482
Email: share@umassd.edu
Website: www.share.umassd.edu
The SHARE Foundation helps individuals with disabilities to
obtain customized computer input systems, and often donates
needed systems free of charge to those who cannot afford them
and who are unable to find other financial support.
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THE Challenge! | Spring 2011

Resources
National Organization Caring for Kids
Telephone: 253-851-6625
Website: www.nockonline.org
The National Organization Caring for Kids (NOCK) helps
parents of children with disabilities to fund assistive technology
products after traditional funding sources have been exhausted.
Its focus is on mobility and communication devices. Participants
must be referred by one of NOCK’s partners, which include
Dynavox Systems, United Seating and Mobility, Care Medical,
Olympic Pharmacy and Sunrise Medical.
Lions Clubs International
Website: www.lionsclubs.org
Lions Clubs International is a volunteer organization with a
focus on service to the blind and visually impaired. Local clubs
provide free eye care, eyeglasses, Braille writers, large print
texts, white canes and guide dogs. The Lions Clubs International
Website includes a locator for finding local clubs.
GiveTech
Telephone: 415-750-2576
Email: info@givetech.org
Website: www.givetech.org
GiveTech provides computer input technology for individuals
with severe physical disabilities who lack the financial ability
to purchase it.
Digital Federal Credit Union
Telephone: 800-328-8797 toll free or 508-263-6700
Website: www.dcu.org
The Digital Federal Credit Union offers Mobility Vehicle Loans
and Access Loans for adaptive equipment and home or vehicle
modifications. Members of the American Association of People
with Disabilities (AAPD) are eligible to join the credit union.
You can
be there for her.
Even if you can’t be there with her.
CaringBridge helps connect people during a
significant health challenge. Patients and
families can easily create a free website to
share the experience, save time and energy,
and receive support.
To create your own website
that gives recognition to
Brain Injury Association of America, visit
www.CaringBridge.org/BIAUSA
American Association of People with Disabilities
Telephone: 800-840-8844 toll free (voice or TT)
or 202-457-0046 (voice or TT)
Email: aapd@aol.com
Website: www.aapd.com
Members of AAPD are eligible to join the Digital Federal Credit
Union, which offers Mobility Vehicle Loans and Access Loans
for adaptive equipment and modifications.
Modest Needs
Telephone: 212-463-7042
Email: general.questions@modestneeds.org
Website: www.modestneeds.org
A nonprofit organization that offers one time, small grants to
assist people who otherwise would not receive assistance from
public resources.
THE Challenge! | Spring 2011
26

THE Challenge!
NEWS & NOTES
10 Tips to Maximize Stroke & Aphasia Recovery
By Paul E. Berger, stroke survivor, award-winning speaker, author of
“How to Conquer the World With One Hand…And an Attitude.”
I
had a stroke from a ruptured aneurysm when I was 36. I was severely disabled, paralyzed on my right side (hemiplegia)
and unable to talk, read, or write (aphasia). I had inpatient rehabilitation until my insurance ended. I wanted to continue
my recovery, and believed that I could get better. It was hard, but I did it. Here’s how you can do it too:
1
2
3
4
Take responsibility for your recovery.
Consider your doctors, therapists,
and other health care professionals
as partners or coaches who guide
you in making decisions.
Set treatment goals that are
important to you.
Maximize inpatient therapy.
The end of insurance coverage
does not mean the end of recovery.
5
6
7
8
9
10
Before insurance ends, try to negotiate
more.
Consider all forms of therapy and
rehabilitative care for stroke recovery.
If your insurance doesn’t cover it,
look for alternative funding sources.
Do multiple activities every day.
Try new things.
Get involved.
Chartered State Affiliates
Brain Injury Association of Arizona 602-323-9165 ~ 888-500-9165
Brain Injury Association of Arkansas 501-374-3585 ~ 800-444-6443
Brain Injury Association of California 661-872-4903 ~ 800-444-6443
Brain Injury Association of Connecticut 860-219-0291 ~ 800-278-8242
Brain Injury Association of Delaware 302-346-2083 ~ 800-411-0505
Brain Injury Association of Florida 850-410-0103 ~ 800-992-3442
Brain Injury Association of Georgia 404-712-5504 ~800-444-6443
Brain Injury Association of Hawaii 808-791-6942
Brain Injury Association of Illinois 312-726-5699 ~ 800-444-6443
Brain Injury Association of Indiana 317-356-7722 ~ 866-854-4246
Brain Injury Association of Iowa 515-274-9757 ~ 800-444-6443
Brain Injury Association of Kansas
and Greater Kansas City 913-754-8883 ~ 800-444-6443
Brain Injury Association of Louisiana 504-619-9989 ~ 800-500-2026
Brain Injury Association of Maryland 410-448-2924 ~ 800-221-6443
Brain Injury Association of Massachusetts 508-475-0032 ~ 800-242-0030
Brain Injury Association of Michigan 810-229-5880 ~ 800-444-6443
Brain Injury Association of Minnesota 612-378-2742 ~ 800-669-6442
Brain Injury Association of Mississippi 601-981-1021 ~ 800-444-6443
Brain Injury Association of Missouri 314-426-4024 ~ 800-444-6443
Brain Injury Association of Montana 406-541-6442 ~ 800-241-6442
Brain Injury Association of Nebraska 402-423-2463 ~ 800-444-6443
Brain Injury Association of Nevada 702-259-1903
Brain Injury Association of New Hampshire 603-225-8400 ~ 800-773-8400
Brain Injury Association of New Jersey 732-745-0200 ~ 800-669-4323
Brain Injury Association of New York State 518-459-7911 ~ 800-228-8201
Brain Injury Association of North Carolina 919-833-9634 ~ 800-377-1464
Brain Injury Association of Ohio 614-481-7100 ~ 800-444-6443
Brain Injury Association of Oklahoma 800-444-6443
Brain Injury Association of Pennsylvania 866-635-7097 ~ 800-444-6443
Brain Injury Association of Rhode Island 401-461-6599 ~ 888-824-8911
Brain Injury Association of South Carolina 803-731-9823 ~ 877-824-3228
Brain Injury Association of Tennessee 615-248-2541 ~ 877-757-2428
Brain Injury Association of Texas 512-326-1212 ~ 800-392-0040
Brain Injury Association of Utah 801-484-2240 ~ 800-281-8442
Brain Injury Association of Vermont 802-244-6850 ~ 877-856-1772
Brain Injury Association of Virginia 804-355-5748 ~ 800-444-6443
Brain Injury Association of Washington 206-897-5755 ~ 877-982-4292
Brain Injury Association of Washington, DC 202-659-0122 ~ 800-444-6443
Brain Injury Association of West Virginia 304-400-4506
Brain Injury Association of Wisconsin 262-790-9660 ~ 800-882-9282
For any state not listed here, call 800-444-6443
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THE Challenge! | Spring 2011

Classifying
Brain Injury
Classifying Brain Injury as a Chronic Disease
(Continued from pg. 10)
including spacticity, which requires life-long treatment, and a
high incidence of fractures that places the individual at risk for
heterotopic ossification (HO), which may not develop for as
long as three months post injury.
It is critical to note that psychiatric disease and psychological
deficits are among the most disabling consequences of TBI.
The overwhelming majority of individuals who survive a
moderate-to-severe TBI are left with significant long-term
neurobehavioral consequences. In addition to the aggression,
confusion and agitation seen in the acute stages, TBI is
associated with an increased risk of developing numerous
psychiatric diseases, including obsessive compulsive disorders,
anxiety disorders, psychotic disorders, mood disorders, and
major depression.
Individuals with a TBI appear to have higher rates of depressive
disorders, anxiety disorders and substance abuse, and often have
suicidal plans, suicidal behavior, or suicide completion in the
context of these illnesses. A TBI clearly may cause decades-long,
and possibly permanent, vulnerability to psychiatric illness.
Historically, individuals living with a brain injury have been
referred to as brain injury survivors. Perhaps this concept of
merely staying alive was used because, as little as 30 years
ago, the majority of individuals with a moderate-to-severe TBI
succumbed soon after their injury. Perhaps the terminology
was used to imply that the individual outlived their injury and
persevered despite the hardship of the trauma.
“Survivor” however, does not address the reality of brain injury.
Cancer survivors are survivors because it is believed they are
cured – and they indeed have outlived their disease. Many
individuals who sustain a TBI recover 100 percent. They have
truly survived their injury. However, in the U.S. alone, every
year, more than 125,000 individuals who sustain a TBI become
disabled.
This article addresses only a small percentage of the causes of
disability and the ongoing and developing medical conditions
individuals with TBI face. Presently, more than three million
individuals in the U.S. are disabled due to the myriad
consequences of a TBI. Their brain trauma has resulted in a
condition that is disease-causative and disease-accelerative.
As a result of their brain trauma, these individuals now have
life-long brain injury disease.
Care and treatment of brain injury disease should be reimbursed
by medical insurers and managed on a par with all other
diseases. Only then will the individuals with this disease of
Traumatic Brain Injury get the medical surveillance, support
and treatment they deserve. Only then will brain injury research
receive the funding it requires. Only then will we be able to
truly talk about finding a cure.
THE Challenge! | Spring 2011
28

THE Challenge!
Brain Injury Association of America
INFORMATION
Upcoming BIAA Webinars
July 14, 2011, at 3pm ET (FREE)
The Brain Injury Association of America will
present a free webinar on the status of Health Care
Reform legislation and regulation and how HCR
impacts the field of brain injury rehabilitation. Peter
Thomas and Bobby Silverstein of Powers Pyles Sutter
and Verville PC are panelists. Go here to register:
www2.gotomeeting.com/register/867692635.
June 21, 2011, 3 p.m. ET
Strauss Memorial Lecture Webinar
Initial Presentation and Treatment
Jeff Bazarian, M.D., Ph.D.
July 19, 2011, 3 p.m. ET
Business of Brain Injury Webinar
Preparing for a CARF Survey
Christine MacDonell
Sept 27, 2011, 3 p.m. ET
Strauss Memorial Lecture Webinar
Hypoxic-Ischemic Brain Injury
David Arciniegas, M.D.
Visit www.biausa.org for more information
Oct. 4, 2011, 3 p.m. ET
Rosenthal Memorial Lecture Webinar
Suicide and TBI
Lisa Brenner, Ph.D., ABPP and Grahame Simpson, Ph.D.
Oct. 25, 2011, 3 p.m. ET
Strauss Memorial Lecture Webinar
Adolescent TBI
Lindsey Piland, M.A., CCC-SLP
Registration for upcoming webinars, as they become available, is available in the Marketplace of the Brain Injury Association of
America’s website, at secure.biausa.org/SearchResult.aspx?CategoryID=61. Recordings of most webinars are available for purchase
in the Marketplace here: secure.biausa.org/SearchResult.aspx?CategoryID=12
advertiser index
pa g e advertiser w e b s i t e
22 | Avanir www.pbainfo.org
28 | Bancroft www.bancroft.org
28 | Beechwood Rehabilitation Services www.beechwoodrehab.org
26 | CaringBridge www.caringbridge.org/BIAUSA
12 | CORE Health Care www.corehealth.com
7 | Florida Institute of Neurologic Rehabilitation, Inc. www.finr.net
30 | Lakeview Neurorehabilitation Centers www.lakeviewsystem.com
19 | Montero Law Center www.lexcenter.com
24 | NeuroRestorative www.neurorestorative.com
20 | Rainbow Rehabilitation Centers www.rainbowrehab.com
12 | ResCare Premier www.rescarepremier.com
21 | Shepherd Center www.shepherd.org
10 | Special Tree www.specialtree.com
24 | Stark & Stark www.stark-stark.com
21 | Success Rehabilitation, Inc. www.successrehab.com
18 | The Lighthouse Neurological Rehabilitation Center www.lighthouserehab.com
12 | Titolo Law Office www.titololawoffice.com
17 | Tree of Life www.tree-of-life.com
If you or a loved
one has had a brain
injury, call the
National Brain Injury
Information Center
toll–free for
information at:
1-800-444-6443
Call for information about:
• Local treatment and
rehabilitation options
• Funding for services
• Legal issues
• Veterans information
• Living with brain injury
• Returning to school
and work
• Coping with changes
29
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THE Challenge! | Spring 2011
30

Non-Profit Org.
US Postage
PAID
Richmond, VA
Permit No. 320
1608 Spring Hill Rd., Suite 110
Vienna, VA 22182
The Corporate Sponsors Program gives rehabilitation
providers, long-term care facilities, attorneys and other
leaders in the field as many as 15 ways to support
the Brain Injury Association of America’s advocacy,
awareness, information and education programs. BIAA
is grateful to the Corporate Sponsors for their financial
contribution and the many volunteer hours their companies
devote to spreading help, hope and healing nationwide.
For more information on how to become part of Brain Injury
Association of America Corporate Sponsors Program, please visit the
sponsorship and advertising page at www.biausa.org or contact
Susan H. Connors at 703-761-0750 or shconnors@biausa.org.