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Policy News...
News Alert:
Earlier this week, the President signed the TBI Act into law.
Click here for the latest Brain Injury Association of America
Policy Corner E-Newsletter - A weekly update on federal
policy activity related to traumatic brain injury
Other
News...
VA
Study: Seattle's VA Part of National Study to Use
Robots for Stroke Treatment.
Read all about it
Agreement for Veterans: On March 25, Brain Injury
Association of Executive Director Gene van den Bosch and
Washington State Department of Veterans Affairs Director John
Lee Sign signed an Agreement to help the BIAWA and WSDVA work
together to ensure veterans and their families have access to
and information on all entitlements and services for which they
are eligible...
Read more about it
New
Study: UW has announced a new study to test a device
designed to help people with brain injuries find different
places in the community.
Click here
for more information (word)
A Visit to Delta
Rehabilitation! On February 11, 2008, Administrative Assistant
Shannon Fountain, Helpline Manager Laura Hankins, and IT
Consultant Brian Reynolds paid our dear friends at the Delta
Rehabilitation a visit.
Here are a few of the
amazing people we met that day
The Spokane
Spokesman Review has recently featured Pastor Craig
Sicilia and his account of living with a brain injury. Read
the full article.
Seattle PI recently published
an article on Northwest punk icon Calvin Johnson's re-emergence
after a traumatic brain injury.
Click here for the full article.
The Spokane
Brain Injury Support Group now has their own Web Page:
Click Here
The Olympian has
done a great 3 part article on brain injury recently. Follow
these links to read the story:
(NOTE:
Look for the Close X button on the annoying popup ad)
http://www.theolympian.com/570/story/262373.html
http://www.theolympian.com/news/story/262654.html
http://www.theolympian.com/news/story/262374.html
Read about the highly anticipated
WSJ article on Dr. Donald Stein’s research regarding
progesterone.
One Doctor's Lonely Quest To Heal Brain Injury, By Tom Burton
and
Treating Traumatic Brain Injuries
Microsoft
Conference Features Logan Olson!
Click here for
details and to view video
An important Survey:
How can advocates do a better job when people with disabilities
experience domestic violence or sexual assault?
Click Here
Historic Legislation
Supported and Welcomed by BIA-WA Members Statewide.
Click here for photos!
Eastern Washington
Resource Guide is now available online!
Click on the Eastern Washington link to your left
BIAWA Board Member, Jay Uomoto,
PhD, is featured in a Seattle Magazine article on the subject of
our returning soldiers.
Click here for the
full article. (a large 1.7 meg .PDF file)
We Support Our Troops
BIA-WA will be meeting with veterans - and with those who
support our veterans - over the next few weeks to develop plans
and funding support for a statewide support project specifically
for returning veterans with traumatic brain injuries.
Click
here for the video
Position Statement
Concerning Our Troops Read the Statement of Brain Injury
Association of America President/CEO Susan Connors Endorsing
Public/Private Collaboration to Meet TBI Care Needs.
Click Here
"I Want My Brain Back"
What happens when you’re a
PhD economist and you suddenly can’t remember things or think
straight? One woman’s story of perseverance reveals some of the
mysteries of the brain.
Read this moving story by Sherri Delphonse.
BIAWA's Adler and Bell
on KJR FM Radio
Click here
for an
mp3 version (requires Media Player)
Sports Concussion
on NPR
Program
Click here to link to the
broadcast
Tacoma Support Group
Facilitator Published Penny Condoll's Op-Ed piece made
the Tacoma News Tribune March 20th, 2007. To read her story,
"House bill offers overdue help for victims of brain injuries."
click here
Bob Woodruff
Partnering With BIAA
Click here for the
BIAWA Press Release
(also available in
PDF format)
Click here for BIAA Press Release (39k PDF file)
Click here to visit www.bobwoodrufffamilyfund.org (External
web site)
NEW MAGAZINE:
Washington state based Logan Olson and her mother Laurie have
created a publication called
Logan
Magazine.
Return to Homepage
Our Newsletter - Mind Matters
Spring
2007
Survivor pursues her dream
By Rhonda Howard
Giving up” is not an acceptable phrase for 22-year-old Logan
Olson and her mom Laurie. Born with congenital heart disease,
Logan survived a heart attack at age 16 that sent her into a
coma, causing a brain injury.
After
a long rehab, Logan wanted to move on with life. Her life’s
dream pre-TBI was to attend beauty school. Though her beauty and
fashion sense hadn’t changed, the rest of her life had. She
searched for publications with fashion tips for young women with
varying disabilities, and found nothing that inspired her. In
Logan’s words, “It was all stuff for old men.”
That’s when she and her mom, both from Spokane, got creative.
For fun, they used magazine covers for their palette, and
with cut-and-paste techniques, created their own fashion
magazines. Logan’s teachers in the Spokane School District
encouraged her to approach the state Department of Vocational
Rehabilitation for assistance in acquiring the tools she needed
to create a Web site, where she could develop her dream job. The
DVR counselor she spoke with during her first visit didn’t see
the “feasibility” of the project, and her request was denied.
“We were sometimes tired, and very discouraged, but it gave
me the learning tools I needed to become a stronger advocate for
my daughter,” Laurie Olson said. “I knew if I gave up, she would
too, so we pressed on.”
Logan and Laurie attended focus groups and transition fairs.
Each time they would display Logan’s creations and ask observers
to fill out questionnaires regarding their interest in what she
was trying to do. At a Transition’s Conference in Ellensburg,
Logan and Laurie got such strong input encouraging them to
pursue the dream that they decided it was time to re-approach
DVR. Seeing the pages of signatures of people interested in
subscribing to Logan’s proposed publication, DVR approved a
“self-employment plan” for Logan — and agreed to pay for
advisory services.
Kathy Reichgerdt of Venture Advisory Services in Seattle was
hired to assist Logan. Referring to her as the “football coach
of advisory plans,” Laurie notes that “Kathy has helped many
individuals with disabilities.”
The rest of the story is in the publication itself. Last
November, Logan and Laurie hosted the launch party for Logan
Magazine. The current issue can be seen at
http://www.loganmagazine.com.
Bill makes its way to the Governor
Thanks to advocacy from Washington’s brain injury survivors
and their families, the Washington State Legislature passed a
bill supporting those with traumatic brain injuries. As of
MindMatters press time, HB 2055 was at Gov. Christine Gregoire’s
desk for her signature.
Two bills were introduced at the beginning of the session —
one in the Senate, by Sen. Ken Jacobsen and the other in the
House by Rep. Dennis Flannigan. The bill that gained final
approval in the House and Senate, HB 2055, would create a
Washington Traumatic Brain Injury Strategic Partnership Advisory
Council that would report to the Governor, the Legislature, and
the Secretary of the Department of Social and Health Services (DSHS).
Through a Traumatic Brain Injury Account, funded by an
additional $2 fee on all traffic infractions, DSHS may authorize
spending on information and services related to a public
awareness campaign, support groups, or information and referral
services.
It is estimated that this fund would receive $1.9 million
every two years. Most of these funds would be made available to
community-based organizations to provide services to meet
statewide needs of TBI survivors through a request-for-proposal
(RFP) process. The Council would also be asked to consider using
the Department of Information Services to develop a statewide
registry.
The bill is officially named “The Tommy Manning Act,” after
survivor Tommy Manning of Tacoma. “We really owe quite a bit to
Tommy Manning and to the other survivors of Tacoma,” said BIAWA
Executive Director Gene van den Bosch. “It was their persistent
advocacy and passion that inspired this legislation.”
Executive Director’s Message
Changing for the better
During
my initial visits with board members, chapter leaders and the
founders of this Association, I have heard one consistent theme.
Everyone is aware that our surrounding environment has changed.
You, our members, expect and want the Association to change as
well — in fact, you want us to proactively anticipate — and
initiate — change.
The Brain Injury Association of America is now 27 years old,
and the Washington affiliate will be 25 years old next year.
During the past quarter of a century, this Association and its
national affiliate have accomplished much with the support and
participation of many fine, heroic people.
Yet, times have changed and they continue to change. New
issues and opportunities arise, and new challenges face us as
well. Even as medical technology improves, traumatic brain
injuries are increasing in Washington state. More than 4,500 new
cases were diagnosed in our state’s hospitals in 2004, according
to the Washington State Department of Health. That’s 1,000 more
cases than were reported 10 years earlier.
The realities of 21st century warfare are contributing to
these growing numbers. Brain injury is the signature war injury
from Iraq and Afghanistan, and the number of Iraq war veterans
returning with traumatic brain injuries will likely increase
dramatically. An estimated one in five soldiers received brain
injuries during the Korea, Vietnam, and World War II conflicts,
and we know the numbers from Iraq will be larger. Thousands of
veterans will return to live in Washington, and they and their
families will need community-based support services.
At our state Capitol, two bills were recently introduced
proposing $1.9 million every two years for a Traumatic Brain
Injury Account to fund community-based programs for public
awareness campaigns, support groups, and information services
for TBI survivors and their families. One of these bills — House
Bill 2055 — is on its way to the governor for her signature.
Our experiences in the Legislature highlighted another
change: the increased speed of communication and decisions made
by elected officials and policymakers. What took place over a
week’s time 25 years ago seems to occur within minutes today.
Keeping up with this fast-paced world requires us to have the
technology to communicate with our stakeholders and respond to
consumers, so we do not lose opportunities to provide the
services that survivors and their families need.
In this quickly changing environment, the Brain Injury
Association of Washington must change as well — or die. Here is
a short list of the changes we are making or are about to make
to meet the needs of our consumers — survivors and families;
solicit funding support for our programs and manage the funds
with which we are entrusted in a way that most benefits
survivors and their families, today and tomorrow.
1. Supporting the chapters and support groups, NOT being
supported by the chapters and support groups
I am told that in the past, some people perceived the state
association as “taking our money” and “just asking for money.”
We propose a completely different approach: Working with local
support groups and regional chapters to provide services that
are truly statewide. Rather than asking chapters to send the
state association their funds, the state association will send
most of the membership dues received within a chapter’s county
to the chapter — to be used at the regional level. (Of course, a
small amount will also be sent to our national affiliate, the
Brain Injury Association of America.)
The state association will take a similar approach with
fundraising. Most of the funds raised by the state association
from local or regional sources will be shared with the regional
chapters. All of the funds raised by local and regional groups
will remain with the local and regional groups.
2. Sharing, NOT taking
Each local community and region has its own challenges and
strengths. Each has its own experts on various topics related to
brain injury. We are currently receiving funding and seeking
funding to offer statewide training — using local and regional
experts — for support groups and regional chapters. This
training will be provided beyond our state’s urban areas. It
will especially reach out to underserved, hard-hit Native
American/tribal communities, as well as other rural/frontier
areas of our state.
3. Customizing, NOT standardizing
We are soliciting grants to provide greater accessibility for
survivors and their families. This means we plan to use funds
and volunteers to translate our informational materials into
other languages — including Braille, for those who are blind. We
plan to offer training that is culturally sensitive and matches
the realities of each community we address. And for this, we
will collaborate with other organizations and with each
community’s experts.
Customizing also means tailoring our relationship with each
support group and chapter, recognizing that each group has a
different mix of strengths and challenges. Some chapters, for
example, will be more inclined to offer community education and
initiate local fundraising projects. Others will be more
involved in the advocacy process, or in building stronger
support groups. Some chapters or groups may need assistance with
conflict resolution, while others may need guidance in financial
accountability. In the end, each chapter and each support group
will develop a customized relationship with the BIAWA through
new staff positions we are developing — a Support group
coordinator and a chapter coordinator. These positions will be
part time at first and we expect them to grow as new funding
sources are achieved.
4. Minimizing, NOT maximizing
Many non-profit organizations of the past embraced the
“bigger is better” mindset. They hoped to maximize their
influence through an ever-increasing square-footage of office
space and number of full-time staff. Of course, office space and
full-time staff are sometimes quite helpful — even necessary for
certain types of services. But for our Association, a different
approach seems to be advisable — at least for now. We will
minimize our operations in certain ways in order to maximize our
services for survivors and their families.
How will we do this? We will resist the temptation to drain
local and regional groups of funds to support statewide
services. We will remind ourselves that support services and
training are best when they happen at the local level. We will
get away from providing services that are best provided at the
local level and seek instead to build up, support and train
local services.
One of our primary jobs as a state association is to support
local and regional services for survivors and their families.
Consequently, we must remind ourselves that the exercise of
control by the state association and its officials over local
support groups and regional chapters needs to be kept to a
minimum. And when such “control” is exercised, it should be done
only for the sake of the survivors and families involved, and
not to build structure for structure’s sake.
A minimalist approach will characterize the re-emerging Brain
Injury Association of Washington. We will reduce, wherever
possible, our financial needs so that our limited funds may be
invested in solid programs. And we will ensure that our programs
are outcome-based and actually improve the system, increase
public awareness, and support survivors and families lost and
confused as they attempt to navigate through difficult,
complicated, and fragmented community services. We must minimize
our requests for information, forms, committees, compliance and
more as we support local support groups and regional chapters.
Is some structure necessary? Of course it is. And wisdom will
mean knowing what is helpful and what is just diverting limited
energy, and time and funds from more important work. Are we
fully minimized yet? No, but we must get there — and as fast as
possible.
Looking back, looking forward
After reading this, you may react in different ways. You may
be apathetic. You may say to yourself, “We’ve heard all this
before.” You may disagree with me. You may agree, strongly. You
may be defensive because change seems threatening. You may think
change is too hard, too impossible or too late. You may think we
should keep on doing the “same-old, same-old” and yet expect
different results.
But remember, life and our world are always changing and
those who want to survive — even thrive — must change as well.
We may choose to change a little or change a lot. We may choose
to act dramatically or do nothing at all. But whatever course we
take will be costly. The question is: What costs are worthwhile?
Let’s celebrate 24 years as a statewide affiliate as if we
are adults — and not teenagers or children. We know the
difference. An adult remembers lessons learned, looks forward to
the future, and is more willing to change to meet the real
demands of the day and the expected demands of tomorrow.
We face new issues, new challenges and new opportunities.
Let’s be willing to change and let us — together — get to work.
Gene van den Bosch,
Executive Director
Chairman's Message:
We
are at a point in the organization’s development that we can
actually handle more than one urgent and important project at
the same time. And we are doing it well and succeeding. Many
hands do make light work.
BIAWA is off to a most exciting start in
2007. We are actively and vigorously pursuing legislation that
could result in profound short- and long-term changes for TBI
survivors in the state of Washington.
Legislation that was introduced in January
2007 proposed creating a dedicated fund for TBI resources
totaling approximately $160,000. The legislation has morphed
into something more profound, with dedicated funds approximating
$2 million.
The momentum is with us. But we need to
push this issue to conclusion. Our executive director and
president, along with many board members and volunteers, are
going full throttle on this issue. Many others are actively
involved. Can you imagine what we could do with just a portion
of these funds?
At the same time, we are reviving our
statewide presence. We have just approved policies and
procedures that will allow chapters to grow in Spokane, Tacoma
and Yakima. Leaders have been identified in each of these areas
and they are committed to establishing viable, reliable and
vibrant chapters. These leaders will be presented as nominees
for inclusion on the board at the April Board meeting. We have
also committed to sponsoring a significant fundraising
auction/gala on Oct. 27, 2007 at the Seattle Grand Hyatt. A
contract has been signed. We have a major sponsor (UBS) agreeing
to underwrite $20,000 of the costs of the event. Many board
members and volunteers are meeting, planning, consulting and
getting the “blueprints” ready to make this a first class event.
Can we do this all at the same time? The
answer is simple. Yes. However, starting something is very
different than completing it. We all have other commitments that
require ongoing balancing of time and calendars. I am confident
that our board members and volunteers are ready for action and
ready for results.
Thank you for all that you do. Our many
hands are making work lighter, but we now need all hands. Let’s
finish what we started as we have the opportunity to accomplish
something truly significant for TBI survivors, their families
and our community. We can and will make this a better place
because of our time, dedication and efforts.
Richard Adler
President/Board Chairman
20 attend facilitator training workshop
Twenty BIAWA facilitators and co-facilitators recently
participated in a two-day training workshop led by Janet
Novinger, board member and professional facilitator.
The training started with an informal Friday night “meet and
greet” that allowed facilitators to network; a welcome dinner;
service awards for Board President Richard Adler, and retirement
ceremonies for long-time facilitators Bill Nelson and Lou Nash.
On Saturday, an all-day workshop focused on what is needed to
run a successful support group and practicing the skills
necessary to become a good facilitator.
The facilitator training workshop was funded through a
federal TBI Implementation Grant awarded to Washington State
Department of Health and Human Services Aging and Disability
Services Administration. Additional donations of time, gifts and
funding were made by BIAWA volunteers and board members.
Helpline assistance expands
Since the BIAWA receives virtually no “walk-in” requests for
information, moving our Helpline support services to satellite
home offices — each linked by phone, fax and email — allows us
to actually expand our services, even as we stay within our
current budget. Our current statewide toll-free number Helpline
services are offered by two staff members working 30 hours per
week, with call-back assistance responding to voice mail
received during other hours. Janet Mott, Ph.D., is our new
program director; Laura Hankins is our new Helpline manager
and Valerie Wootton is our new Helpline coordinator.
Our expanded Helpline assistance program includes these
features:
1. Information is provided primarily by telephone so that
the TBI survivor or caregiver can obtain information about
rehabilitation and independent living programs, services, and
resources that are appropriate. These services are soon to
include a statewide toll-free Helpline service provided by
trained peer mentors, graduate-level interns supervised by a
rehabilitation professional, and language translation services
available by appointment.
2. Telephone call-back assistance is offered to train and
empower TBI survivors and their caregivers to become more
knowledgeable about — and predisposed to use — basic
problem-solving and decision-making tools to properly access
services, particularly those relating to employment, supported
employment, and independent living.
3. Supportive materials (including updated resource
directories for each region of the state, and information
packets or printed “Toolkits” — planned to soon include a Native
American Toolkit) offer critical information for caregivers and
for professionals who provide care and critical services for TBI
survivors and their caregivers.
Telephone case management supports the development of the
individualized plan for employment and rehabilitation. It also
provides follow-up support for TBI survivors and their
caregivers seeking to interact and use the services of our
community partners and any other agency, organization, or
professional offering services in the areas of transition and
employment programs as well as rehabilitation services.
We are recruiting and requesting partners and volunteers to
build the following supportive groups to achieve our desired
outcomes:
Three advisory councils — comprised of survivors,
caregivers and professionals — to provide critical perspectives
for needs assessment, guidance and project evaluation, and to
help program staff understand the challenges faced by a person
recovering from a TBI and his or her caregivers.
Ongoing routine and formal quarterly evaluations of the
project’s processes and outcomes — including input from
consumers, advisors, and staff — and recognition of
time-specific benchmarks, responsible parties, delays, barriers
and accomplishments.
Ongoing formal quarterly communication with professionals
from state agencies, community partners, and public officials
within a 35-member Washington State Traumatic Brain Injury
Strategic Partnership to target resources to the areas of
greatest need.
The desired outcome of this demonstration project is for
individuals with traumatic brain injuries and their caregivers —
particularly those living in underserved tribal communities and
rural areas and those with significant and severe communication
challenges — to participate more effectively with professionals
in meeting the vocational, independent living, and
rehabilitation needs of individuals with TBI living in
Washington state.
The targets for this project include:
Training all of the Association’s 20 TBI support group
facilitators and three regional chapter leaders to enlist their
support and assistance for this project at their own local and
regional areas.
Providing at least one training in each of Washington’s
counties over each 12 months of this project’s 60-month period
for TBI survivors and their caregivers living in that county.
Distributing TBI information packets (TBI Toolkits) to
the caregiver-service agencies and organizations in Washington,
along with a description of this project and an invitation to
participate in this project’s training sessions as trainers or
as students; assisting in the distribution of further
information on TBI; and referring TBI survivors and caregivers
to BIAWA for telephone information and training support.
Support service improvements
Here is an example of other improvements BIAWA has made to
support services:
More TBI Toolkits to be distributed: Thanks to a federal TBI
grant to Washington’s Department of Social and Health Services (DSHS),
the BIAWA recently received a contract to distribute 625 more
TBI Toolkits and Resource Guides — basic information and
resources on traumatic brain injury — throughout the state of
Washington. This contract followed an earlier contract to
distribute 1,400 initial Toolkits and Resource Guides in 2006.
Support group training and coordination: Under a contract
from DSHS, the BIAWA will be providing 200 hours of services to
sustain BIAWA-affiliated support groups for survivors of
traumatic brain injury and their family members within a
three-month period of time, ending June 30, 2007. A BIAWA-affiliated
support group is a TBI-related support group in Washington state
with a group facilitator trained by the BIAWA. Valerie Wootton
will serve as the association’s support group coordinator, and
will provide up to 200 hours of outreach and technical
assistance for BIAWA-affiliated groups through in-person
contact, or will refer other BIAWA consultants as appropriate
for the support groups’ needs. In addition to outreach, funds
from this contract will sponsor four regional support group
facilitator trainings, and will also cover information packets
for support groups and family members requesting TBI
information, and mailing equipment. In addition, the grant
allows the purchase of audiovisual equipment for the BIAWA to
lend to facilitators for use in support group meetings.
Family training and helpline assistance support program in
development: The BIAWA is applying for grants from federal and
state sources, and is requesting donations from private
foundations and individuals to initiate a statewide Family
Training Program that would benefit all family members,
caregivers and guardians of individuals with traumatic brain
injury. The model demonstration project would use $500,000 in
federal grant funding (for example, $100,000 per year) and
$1,297,000 in non-federal funds over 60 months (or five years).
The project would provide training and information to enable
individuals with traumatic brain injuries and their caregivers
to participate more effectively with professionals in meeting
the vocational, independent living, and rehabilitation needs of
individuals with TBI living in Washington State — with service
priority and special focus on those who are:
-
living in
underserved tribal communities and rural areas;
-
who are also
low-functioning TBI and deaf or low-functioning TBI and hard
of hearing; and/or
-
are youths with TBI
or parents/caregivers of youths with TBI.
Training and information would be provided for residents of
every county in Washington state in collaboration with local,
regional, state and national partners. This project will use
paid professional staff, contractual services, as well as
graduate school interns and volunteers. Distribution of training
and information will be sensitive to the cultures of the
audience addressed and use local/regional experts with high
credibility for each audience, as practical.
How you can support ‘Heroes At
Home Act’
On March 29, U.S. Senator Hillary Rodham Clinton (D-NY)
introduced the Heroes At Home Act of 2007, a series of
initiatives to improve services and support for Armed Forces
personnel with TBI and their families. Senator Susan Collins
(R-ME) is an original co-sponsor.
Brain Injury Association of America Honorary Spokesperson Lee
Woodruff and President/CEO Susan Connors were among the invited
speakers at the press event. Together they emphasized the need
for public/private cooperation in the provision of post-acute
care and called for increased family caregiver training and
support.
BIAA proudly endorses the Heroes at Home Act of 2007 as a
critical step forward in meeting needs of service members with
TBI. The bill contains two key provisions of interest to BIAA:
- Implementation of an objective, computer-based assessment
protocol to measure cognitive functioning both prior to and
after deployment in order to improve the screening process for
TBI in soldiers deployed to Iraq and Afghanistan.
- Establishment of a Traumatic Brain Injury Family Caregiver
Personal Care Attendant Training and Certification Program,
which would train and certify family caregivers of TBI
patients as personal care attendants, enabling them to provide
quality care at home while also qualifying for compensation
from the VA.
Note that the legislation specifies that the curricula for
the TBI Family Caregiver Personal Care Attendant Training and
Certification Program “shall incorporate applicable standards
and protocols utilized by certification programs of national
brain injury care specialist organizations.”
BIAA state affiliates can take two key actions to support
this bill:
Initiate a letter-writing campaign as soon as possible to
generate short notes from brain injury advocates in your state
thanking Senator Clinton for introducing this bill and for her
leadership on brain injury issues. (See a sample letter, below.)
Sample letter to Senator Clinton
Date
Senator Hillary
Rodham Clinton
Russell Senate
Building, Suite 476
United States Senate
Washington, DC 20510
Dear Senator Clinton:
I am writing to express my sincere appreciation to you for
introducing the “Heroes at Home Act of 2007,” and for your
leadership in the Senate on brain injury issues. Your
legislation represents a critical move forward in meeting the
rehabilitation and emotional adjustment needs of traumatic brain
injury (TBI) survivors of Operation Iraq Freedom (OIF) and
Operation Enduring Freedom (OEF).
Following in the footsteps of the successful passage of last
year’s “Heroes at Home Act of 2006,” your introduction of this
follow-up bill further demonstrates your understanding of the
gravity and complexity of TBI as it is impacting so many of
America’s brave young men and women serving in the Armed Forces,
as well as millions of civilians.
Your recognition of the critical role played by family
caregivers in facilitating recovery from brain injury, and for
addressing the pressing need to increase support for these
caregivers by providing access to education, training and
financial compensation, is also greatly appreciated.
Again, thank you for your continuing leadership on brain
injury issues.
Sincerely,
Your signature here
2. Encourage brain injury advocates to write to their
senators and encourage them to cosponsor the Heroes at Home Act
of 2007. (See sample letter, below.)
Sample letter to your own Senator
Date
Senator XXXXX
XXX Senate Office
Building
United States Senate
Washington, DC 20510
Dear Senator XXXXX:
I am writing to ask you to cosponsor the “Heroes at Home Act
of 2007,” which represents a critical move forward in meeting
the rehabilitation and emotional adjustment needs of traumatic
brain injury (TBI) survivors of Operation Iraq Freedom (OIF) and
Operation Enduring Freedom (OEF).
This legislation was introduced by Senator Hillary Clinton
(D-NY) on March 29, 2007, and is supported by the Brain Injury
Association of America, Wounded Warrior Project, American
Legion, National Military Families Association, Military
Officers Association of America, Gold Star Mothers and Lee
Woodruff, TBI caregiver and co-author with husband Bob Woodruff
of the New York Times bestseller In An Instant.
This legislation recognizes the critical role played by
family caregivers in facilitating recovery from brain injury,
and for addressing the pressing need to increase support for
these caregivers by establishing a Traumatic Brain Injury Family
Caregiver Personal Care Attendant Training and Certification
Program. This program would train and certify family caregivers
of returning soldiers with TBI as personal care attendants,
enabling them to provide quality care to their loved ones at
home and at the same time qualify for compensation from the VA.
The “Heroes at Home Act of 2007” will also take important
steps to establish a protocol for the assessment and
documentation of cognitive functioning of each member of the
Armed Forces both before and after deployment, including
appropriate mechanisms to permit the differential diagnosis of
TBI and post traumatic stress disorder (PTSD) in returning
service members. There is a great need for improved diagnostic
capabilities in detecting the occurrence of one or, as
frequently occurs, the coexistence of both conditions.
Again, as a constituent of yours, I urge you to cosponsor the
“Heroes at Home Act of 2007,” to proactively address one of the
most important issues related to the War on Terror, the
unanticipated high incidence of traumatic brain injuries among
America’s brave soldiers returning from combat.
Sincerely,
Your signature here
Shop for Cause nets dollars
for BIAWA
BIAWA participated for the first time this spring in Shop for
the Cause, a fundraising event for non-profit organizations in
the Northwest. For one month, ending on March 17, Shop for the
Cause Savings Passes were sold for $5 each. BIAWA received $5
for each Savings Pass sold by BIAWA members. Thanks to Macy’s
and its sponsorship, BIAWA has added $1,260 to its treasury.
Special thanks go to Dana Lough for selling the most Savings
Passes. Dana and Michael Lough were indeed the BIAWA ambassadors
as they greeted hundreds of shoppers at Alderwood Mall and
shared our newsletters with interested parties on March 10 and
17. Chairman of the Board Richard Adler was the runner-up for
selling the most Savings Passes.
TBI organization support
profiles:
Neurology Vocational Services Unit
The Department of Neurology Vocational Services Unit (NVSU)
at Haborview is in its second year of a federally funded Project
With Industry (PWI) grant. NVSU has a target population of
clients with neurological disabilities such as TBI, epilepsy,
multiple sclerosis and stroke. Through this grant, the program
helps find meaningful and financially viable work for those who
are unemployed and underemployed with neurological disabilities
— at no cost to the client. The goals of the grant include
serving 450 clients with neurological disabilities over a
three-year period, and assisting 270 clients to find job
placement.
The Neurology Vocational Services Unit ended the first year
of this grant with a 60-percent successful placement rate and an
average hourly salary of $12 for 30 hours of work per week. A
significant segment of the clients seek part-time work to
complement Social Security subsidy. Work at the center suggests
that two-thirds of clients with severe TBI can return to work
with specialized interventions. The PWI grant allows clients to
attend a twice-weekly job club, receive job leads screened to
match their needs and abilities, and have on-going vocational
advisement and follow-up. In addition to seven partner companies
providing openings, the project has an incorporated employer
board and a Business Advisory Council (BAC), which is building
to 40 companies. Once hired, clients have access to paid
co-workers as trainers and receive follow up from date of hire
for one year, including quarterly dinner Career Enhancement
sessions. New client referrals who would like to consider
entering the program are invited to meet with an experienced
vocational counselor any Tuesday morning at 10:30 a.m. If you
have TBI and are seeking work, you are encouraged to come to the
Pat Steel Building, 401 Broadway (corner of Broadway and
Jefferson), Ste. 2088, in downtown Seattle. Please call
206-744-9130 for more information, or visit the Web site at
nvsrehab.org.
Pedestrian InRoads
Pedestrian InRoads was founded by Andrea Okomski in 2006, two
years after her teenage son was nearly killed crossing the
street to catch the city bus to high school. He suffered severe
traumatic brain injury and remained comatose for over three
months.
The organization’s mission is “to claim for each person the
basic human right to walk and move freely throughout our
communities without fear or pain of sudden violent loss through
a traffic collision,” Okomski said. “Prevention and healing go
hand in hand. Our greatest wish is that no more families suffer
as we have from preventable injury. Our greatest hopes for our
loved ones surviving with TBI are the same as for anyone, that
they find purpose and acceptance in this life.” Pedestrian
InRoads hopes to partner with BIAWA and other community
organizations to build a TBI Clubhouse for the Puget Sound Area.
A clubhouse is a day center run by and for TBI survivors, with
minimal staff control. It is a place where survivors, friends,
and family reconnect with the broader community to build a
future. Clubhouses are based on the idea that work is healing.
“We can build from proven successful clubhouse models like
the nationally accredited Midwest Brain Injury Clubhouse,”
Okomski said. “We will incorporate values of empowerment,
fellowship, dignity and independence, and embrace a holistic
health and wellness orientation, focusing on spirit, mind and
body. And strengthen partnerships with educational and health
institutions to foster greater understanding of the changing
needs of survivors and families.” For more information on
Pedestrian InRoads, visit www.peinroads.org.
Why we must support those
living with TBI
By Penny Condoll
Ed. Note: Penny Condoll, facilitator of the Tacoma Brain
Injury Support Group, wrote this article as an op-ed piece that
appeared in the March 20 Tacoma News-Tribune.
Living with a traumatic brain injury can be a life altering
experience.
Closed and open head injuries often happen in a matter of
seconds, without warning and without preparation for what will
come next. The seconds it took to change my life left me with
short-term memory problems, difficulty organizing, planning,
initiating and sequencing of tasks, irrational anger outbursts,
trouble being in situations with various stimuli (overload) and
seizures.
My injury happened as the result of a fall in my driveway. I
have no memory of the month afterward, but can vividly remember
the years that followed. It has taken that long to learn new
strategies to manage the requirements of being a mother, an
employee and frankly, a valuable resident of Washington.
My injury sidelined my career as a social worker and manager
for Group Health Cooperative at St. Joseph Medical Center. After
my brain injury, I was struck by the inadequacy of services and
support for persons with brain injury and their families. I now
volunteer as the facilitator of the local Tacoma Brain Injury
Support Group. Every two weeks when we meet, I hear similar
stories about the uncoordinated services, the hurdles of
managing both medical and rehab services, challenges with
insurances and transportation, and the frustration of trying to
understand our “new” selves. Many survivors simply fall through
the cracks of the state’s health care and social service safety
nets because traumatic brain injuries are medical in nature but
usually require support, guidance and long-term care that are
underfunded and uncoordinated.
However, new hope is emerging as our Legislature is finally
taking notice of our plight.
Our support group recently learned of an important bill that
would start to address these inadequacies. HB 2055 was
introduced by Rep. Dennis Flannigan (D-Tacoma) and has received
strong support in the House of Representatives. It now needs to
clear the Senate and Governor’s office. In a world were TBI is
rarely discussed or understood, our group is excited about the
chance to educate the legislature and our community.
HB 2055 would create an Advisory Council to help state
leaders understand the needs of those with traumatic brain
injuries. It would also support the work of organizations
currently providing services and support to survivors of brain
injury, and it would create a public awareness campaign.
Jim Kelly, a longstanding support group member, is the father
and caregiver for his 40-year-old daughter, Beverly, who has a
brain injury. Although his family is largely self sufficient, he
has seen many others fall through the cracks because they do not
have anyone to speak for them. Many are mistakenly diagnosed
with something else or simply ignored by both civilian and
military health systems. Instead they may be “force fitted” into
mental institutions, sentenced into correction facilities or
simply left to fend for themselves on the street leaving the
root cause untreated.
The extent of this crisis is hard to ignore. Over 100,000
Washington residents live with a disability because of a brain
injury. At least 20,000 Washington residents will suffer a
traumatic brain injury this year. These injuries often alter the
survivor and their family’s lives forever. Vets returning from
the wars in Iraq and Afghanistan have intensified the need to
address the problem of brain injury in Washington. Rep. Ahern
(R-Spokane) recently remarked in a House floor debate on HB 2055
that of the vets coming back from Iraq and Afghanistan “4,500
right now have one degree or another of traumatic brain injury.”
Later he added, “You are all only a car wreck away from a TBI.”
The Tacoma Brain Injury Support Group is celebrating Brain
Injury Awareness Month this month. We are a wonderful support
group that has been in existence for more than 20 years. This
group meets every second and fourth Thursday of each month at
TACID. It provides the opportunity to learn, make friends and
feel heard by others who understand our unique challenges. We
strongly support this bill and hope that others will join us to
tell the legislature that it is time for a different approach to
this problem.
BIAWA briefs
Save the date: Oct. 27 fundraising auction
“Unmasking the Myths of Brain Injury” is the theme of gala
auction and fundraising dinner scheduled for Saturday, Oct. 27,
2007 at the Grand Hyatt Hotel in downtown Seattle. The event
will include dinner and a silent and live auction, with all
proceeds benefiting the BIAWA.
Look for more details in the next issue of MindMatters.
Next social event: ‘Spiderman’ May 19
Survivors and caregivers are invited to attend the Saturday,
May 19, BIAWA social event, which includes seeing the movie
“Spiderman” at the Pacific Science Center’s IMAX Theater at 4:45
p.m. and dinner at the Seattle Center Food Court.
If you want to attend, email
biawasocial@comcast.net
or call the BIAWA office at 253-238-6085.
Participants will meet at the stage in the Center House.
Those running late should go directly to the Pacific Science
Center ticket kiosk in the Seattle Center (not the Denny Street
entrance). Cost of the movie is $7 for survivors; caregivers are
free.
All attendees must also pay for their own dinner at the Food
Court.
Anyone interested in helping with future event planning,
administration and general assistance, or developing a phone
tree to call people without email addresses, send an email to
biawasocial@comcast.net.
New chapters being formed
Two new BIAWA chapters in Spokane and Tacoma are now being
formed. In addition, meetings to form regional chapters are
planned for Seattle and Yakima. Ashley Richards is president of
the Spokane chapter-in-formation and Penny Condoll is president
of the Tacoma chapter-in-formation.
Caregiver conference June 4 in Tukwila
“Challenges in Caregiving: Giving Care, Taking Care” is the
topic of a day-long conference sponsored by the Washington State
Aging and Disability Services Administration June 4. The
conference runs from 9 a.m. to 4:30 p.m. at the Tukwila
Community Center. Issues to be covered include techniques for
managing challenging behaviors; effective ways to improve
communications with family members and professionals; healthy
ways to cope with emotions and stress; and legal and financial
planning issues. The keynote speaker will be Donna Benton,
director of the Los Angeles Caregiver Resource Center and an
expert on family caregiving issues.
Cost is $25 for family and volunteer caregivers and $50 for
those who are agency-based.
Pre-registration is required. Call 360-725-2544 or toll-free
800-422-3263 to receive a registration form by mail.
Support Groups:
Click here for the current listing
We sincerely thank our sponsor!
|
Adult day health program
for adults with acquired brain injuries
ages 18-59. Many funding options.
www.elderhealth.org
|
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