(See page 8
A Newsletter of the arizona Governor’s Council for details)
on Spinal and Head Injuries
Fall 2003 Department of Economic Security, Rehabilitation Services Administration Volume 5, Number 2
Maximizing Our Resources
Doing more with less… We have also elected new Council
it seems like every officers. I’m pleased to be serving as the
organization is trying Council’s Chair this year, and Fred
to stretch its Fiedler joins us as Vice Chair. Phil Barry,
resources just a little our past Chair, now moves into the
further these days. Secretary position.
For the Arizona To further maximize the use of our
Governor’s resources, we’ve decided that this is the
Council on Spinal last edition of Vistas that will be sent by
and Head Injuries, mail. Beginning in 2004, we will produce
the effort to maximize and distribute Vistas electronically.
Clockwise from top:
Roger Schuler, Chair; our resources has focused
If you’d like to receive Vistas via email,
Phil Barry, Ph.D., Secretary; on developing productive
Chrystal Snyder, Executive Director; please visit to our Web site,
and Fred Fiedler, Vice Chair. partnerships with other agencies
www.azheadspine.org, to sign up. We’ll
whose missions are related to ours. In this
also continue to post each issue on the
issue of Vistas, you’ll find examples of the
Web, so you can check the “Publications”
results of several of those partnerships –
section of our site for the latest issue, as
programs and activities that are able to
well as back issues. You’ll find more
INSIDE flourish as a result of creative leveraging
of our resources.
about electronic distribution of Vistas on
VISTAS page 8.
One of our most important resources, of
SCI Training. . . . . . 2 We hope that this change in distribution
course, is our people, and I’m pleased to
will allow us to continue sharing news
announce that Governor Napolitano has
SCI Conference . . . 3 and information about traumatic brain
appointed three new members of the
TBI Advocacy . . . . 4 and spinal cord injuries with a wide
Council: Jill Decker of Tucson, Sharon
audience while making the most of our
National Phillips of Phoenix, and Danielle
Puentedura of Yuma. Each of these new
Coalition. . . . . . . . . 5
members brings a wealth of experience — Roger Schuler, Chair
Sharing Resources 6 and a perspective that will enrich the
Conversations. . . . 7
f o c u s o n S p i n
SCI Empowerment Training
“ mpowerment helps people to look The course is targeted to consumers and
E at all aspects of themselves –
physical, social, emotional, spiritual
– and see that they can accomplish more
their families. It also benefits professional
caregivers. Past deliveries of the course
have drawn enthusiastic responses from a
Participants than they think they can,” says Carol wide variety of participants (see sidebar).
Have Said… Browner, SCI Nursing
Program Coordinator at
“This course has been Institute’s Neurological
the best I have Rehabilitation Program.
experienced – in “People see that there’s
life beyond the
wheelchair, and they
truthfulness and become more active in
usefulness to my life.” their communities and
And that, she believes, is
the most exciting aspect
“Every single class has of the “Empowerment
been very beneficial to Training for Individuals
with SCI” course.
me and my family.”
Co-sponsored by the
Governor’s Council on
Spinal and Head Injuries
“We are all peers in the and the Barrow
process of living, Neurological Institute at
St. Joseph’s Hospital and
whether with disability Medical Center in
or without, and the Phoenix, the 13-week
course is gearing up for
opportunity to interact its third delivery.
together is an Participants in the course
exceptional privilege.” will meet twice a month,
—PROFESSIONAL from January 8 to June
24, 2004. The course will
take place from 6:00 – 9:00 p.m. in the
The empowerment project grew out of a
Grand Canyon Room at St. Joseph’s
Community Needs Assessment
Hospital and Medical Center.
conducted by the Governor’s Council on
a l c o r d i n j u r y
SCI Events Offer
Spinal and Head Injuries. Susan Wolf, Ph.D. developed Mark your calendar and plan to attend the 2003 Spinal
the extensive curriculum. Cord Injury Educational Conference, “Living Today for
Sessions address medical conditions, secondary
conditions, nutrition and wellness, life care planning, Arizona’s 4th annual conference will take place December
pain management, sexuality, psychosocial issues, 4 – 5 at the Sheraton Mesa Hotel and Convention Center
activities of daily living, mobility, accessibility and in Mesa. This year the event will include a health fair and
interventions. An additional session on women’s interactive workshops, as well as the educational conference.
wellness will be added this year.
The conference is sponsored by the Arizona Spinal Cord
“We all wanted a curriculum that would help to Injury Association, the Arizona Governor’s Council on
empower consumers through quality education, by Spinal and Head Injuries and the Arizona Chapter of the
changing attitudes and offering options for different Paralyzed Veterans of America.
health and lifestyle behaviors,” says Dr. Wolf. “The
Approximately 750 consumers, family members, health
success of the course is a testament to how community
care professionals, counselors and case managers will
experts and consumers alike can share insights and
attend the event, says Paul Mortenson, Executive Director
information and change lives.”
of the Arizona Spinal Cord Injury Association.
The curriculum was designed with the needs of adult
Educational sessions will range from insurance, to
learners in mind. “To engage adult learners, the course had
independent living and empowerment, to SCI research. In
to be comprehensive and interactive,” says Dr. Wolf. “We
addition, the health fair will feature community educators
also wanted to allow time for sharing and mutual support.”
and providers presenting information on a wide range of
Ms. Browner has seen remarkable results from the last topics, including wheelchair skills, personal wellness,
two deliveries of the curriculum. “This course gives nutrition and assistive technologies.
people the confidence to say ‘I can get out of there. I can
For more information or to register, visit
live a full life,’” she says.
www.azspinal.org or contact Robert Horton at
The course can accommodate up to 30 participants. It is (623) 572-0819 or by e-mail at email@example.com.
free of charge, but individuals must reserve a place by
Following the conference, participants may attend the 6th
calling Glenda Whitten at (602) 279-4441. Reservations
Annual Disabled Sports and Recreation Expo, December
are currently being accepted for the 2004 session.
6. Sponsored by Barrow Neurological Institute, the Expo
will be held at the Centennial Center, in close proximity to
EMPOWERMENT TRAINING FOR the conference site.
INDIVIDUALS WITH SCI The event encourages participation in adapted recreation,
including handcycling, art, track and field, skiing,
January 8 – June 24, 2004 swimming, golf and horseback riding. It will also focus on
13 sessions participation in sports, such as basketball, quad rugby,
6:00 – 9:00 p.m. power soccer, and tennis. Other topics will include air
St. Joseph’s Hospital & Medical Center, Phoenix travel, adapted driving and modified recreation vehicles.
For reservations: (602) 279-4441 For more information, call the Barrow Neurological
For information: (602) 863-0484 Institute, (602) 406-4329.
f o c u s o n T r a u m a
ACDL Reaches Out to People with TBI
“ ur goal is to help people with (AHCCCS and ALTCS), and private
O traumatic brain injuries
understand their rights,” says
attorney Jennifer Morse of the Arizona
“We learned that many insurers don’t
understand the long-term implications of
Center for Disability Law (ACDL).
a traumatic brain injury,” says Ms. Morse.
“People with TBI and their families often
find themselves dealing with a system Other concerns have focused on the
that’s fragmented and confusing. They provision of attendant care and other
can feel quite isolated and alone.” therapies. “We’re working to help health
plans understand what’s needed,” says
Assisting consumers and their families is
Ms. Morse. “They have to understand
an important aspect of ACDL’s role as
that the need for these therapies is often
Arizona’s federally designated Protection
“Our goal and Advocacy (P&A) Agency. Last year
the Center was awarded a grant by the To begin to address systemic issues, the
is to federal Health Resources and Services Center has worked closely with the
Administration, a unit of the Department Governor’s Council, the Office for
help people of Health and Human Services, to assist Children with Special Health Care Needs,
persons with traumatic brain injury. the Brain Injury Association of Arizona,
with the Division of Developmental Disabilities
“Our greatest challenge is outreach,” says
and other partners. The Center also assists
traumatic Ms. Morse. “Our focus is on the
individuals with grievances and will
consumer, but since individuals with TBI
represent clients at hearings at no cost.
brain injuries move through rehabilitation so differently,
it’s sometimes hard to reach them.” Also planned for the coming year is an
understand active schedule of training sessions for
Nonetheless, outreach is at the heart of
consumers, families and professionals.
their the Center’s efforts. Its first-of-its-kind
conference in Spring, 2003, attracted over “When I talk to individuals with TBI and
rights,” 130 people, of whom approximately 70% their families about the importance of
were consumers. At a training session in understanding their rights, I’m talking
Prescott this summer, over half of the both personally and professionally,” says
audience were people with disabilities. Ms. Morse. Her two children sustained
traumatic brain injuries in an automobile
“During our first year, we focused on
accident almost a year ago. “I understand
identifying the legal issues that were of
that recovery is a slow and painstaking
greatest concern for people with traumatic
process. We want to help consumers and
brain injuries and their families, “ says
families play a more pro-active role in
Ms. Morse. While many issues were
managing their health care.”
raised, the Center most frequently heard
concerns regarding health insurance – For more information, call (602) 274-6287
both public programs, such as Medicaid or toll-free (800) 927-2260 (voice/TTY) or
visit their Web site at www.acdl.com.
a t i c B R A I N i n j u r Y
National Coalition Promotes TBI Agenda
ver the last 10 to 12 years, a HRSA funding include:
O coalition of traumatic brain
injury advocates and systems
builders has been growing throughout
• The National Association of State
Head Injury Administrators Partners in
Communication initiative, which is
the United States. In the last five years,
designed to support the close
however, this movement has
interaction of state government
become “deliberate, integrated
employees involved in brain Other
and very active,” says
injury programs with the TBI
Chrystal Snyder, Executive
grants program created in national TBI
Director of the Arizona
on Spinal and • The Brain Injury
Head Injuries. Association of • Centers for Disease
By building Control and
initiative, which Prevention
partners, non-profit and
provides information and
advocacy at the national level • National Institutes
and state government
and supports state chapters like
agencies are not only creating for Disability and
the Brain Injury Association of
better services and support, they are
making better use of available
resources. More than 200 representatives • The Traumatic Brain Injury Technical Research
from these organizations met in Assistance Center, a provider of technical
Washington this summer as part of the assistance and support to HRSA grantees. • National Institutes
7th Annual Federal Traumatic Brain of Health
• State Protection and Advocacy
Injury Program Grantee Meeting.
Organizations for people with TBI, such
The meeting was sponsored by the US as the Arizona Center for Disability Law • US Bureau of
Department of Health and Human (see story, page 4). Indian Affairs
Services, Health Resources and Services
The coalition-building approach is
Administration's (HRSA) Maternal and
consistent with the philosophy of the
Child Health Bureau. One goal was to
Governor’s Council, says Ms. Snyder.
take the next step forward in building a
“For more than a decade, we have
national TBI coalition.
embraced the approach of collaboration
Funding is often at the heart of coalition- between national and state agencies,” she
building efforts. National partners like says. “We are pleased to be part of a
HRSA have funded several programs and strong, diverse network of organizations
projects that have become the foundation that is committed to becoming a national
for systems development. Some of the model for systems development in the
coalition-building efforts supported by area of traumatic brain injuries.”
R e s o u r c e s
Shared Vision…Shared Responsibility
MARK YOUR Because people with traumatic brain and coordination program.
CALENDAR! spinal cord injuries have very complex
“Venture” funding is time-limited seed
needs, every penny spent in this area
money that enables a program to build its
Come to an event must return as much service as possible.
capacity. The funding provided by the
dedicated to educating
Many organizations and agencies in our BHHS Legacy Foundation in the above
and improving the lives
state share a common vision to improve example – a three-year commitment to
of people with
and advocate for services for people with build community infrastructure – is
disabilities, their families
traumatic injuries. The funds that are venture funding. The Council also
and caregivers, as well
necessary to carry out that vision, provides venture funding to the Arizona
as healthcare and
however, remain limited. Spinal Cord Injury Association and to the
Brain Injury Association of Arizona to
But when these groups can come together
develop their programs.
The Arizona Disabilities to share funding responsibilities, the
Expo will take place on results are significant. Here are a few Staffing, policy and procedures, training,
Wednesday, January 28, examples of successful funding community involvement – money is
2004, from 9:00 a.m. to collaborations currently in place: needed to pay for all of this, and much
4:00 p.m. at the Arizona more. Through funding partnerships, we
“Blended” funding occurs when two or
State Fairgrounds can and will build a strong foundation for
more organizations pool their money to
Exhibition Hall in the services that are essential to
pay for client services. The Governor’s
Phoenix. enhancing the lives of children and adults
Council on Spinal and Head Injuries and
with spinal cord and brain injuries and
the State of Arizona Vocational
For additional their families.
Rehabilitation program pool funds to pay
for Traumatic Brain Injury specialists and
call Susan DeNova, at
for rehabilitation services for people with
(602) 470-1802, x114, or
brain and spinal cord injuries.
“Braided” funding allows each partner to
pay for a discreet part of the total
program when two or more
organizations share a common goal.
Arizona’s Office for Children with Special
Health Care Needs pays for service
coordination for children and youth with
TBI and their families. The Council is
responsible for the professional training
for the service coordinators and provides
family information materials. The BHHS
Legacy Foundation, an Arizona non-
profit charitable corporation, funds the
community development of resource
networks and referrals to the service
C O N V E R S A T I O N S :
Nancy Cutter, M.D.
EDITOR’S NOTE: This is the fourth of a series of What’s the greatest challenge that
profiles of Arizona professionals who work with you face?
individuals with spinal and head injuries. Dr. Nancy
Cutter is a physician with Barrow Neurological
Institute in Phoenix and a member of the Arizona Helping people to see that their disability is
Governor’s Council on Spinal and Head Injuries. not who they are -- helping them understand
that they have a spiritual essence that’s I guess I’d
Tell us a little about the work that separate from their physical self. It’s a have to say
you do. struggle, but most people eventually achieve
perspective. that I’m
I’m a physiatrist. That’s a little-known hooked on
specialty – there are only about 5,000 of us in So much is happening in this field.
the country. I’m Board-certified in Physical What are you most excited about? triumph
Medicine and Rehabilitation and Spinal Cord over
Injury Medicine. I work with people with I’m involved in a study of a drug called 4-
Aminopyridine. It’s aimed at controlling
disabilities, particularly those who have special
physical needs. spasticity. The results won’t be released until
next year, but we’re having lots of fun with
What does a typical day look like for the study. I’m also hoping to be involved in a
you? new Israeli study. It’s aimed at preventing
secondary cascading injuries in patients with
It’s busy! Most of the time I’m in the hospital, spinal cord injuries.
seeing patients who are fairly recently injured.
These are people who have had a life changing, There’s also lots of promising work going on
catastrophic event. Some people handle it involving olfactory ensheathing cells and gene
eloquently, but most really struggle. therapies. And in rehabilitation, we’re seeing
interesting work in the areas of weight-
A smaller portion of my time is spent in the supported ambulation and electrical
clinic, following up with patients who have stimulation. The challenge, of course, will be
left the hospital setting. With them, I’m to get insurers to recognize these new
looking at their longer-term needs. treatments.
How did you get involved in this What keeps you going?
I guess I’d have to say that I’m hooked on
Before I went to medical school, I was a triumph over adversity. When I see patients
physical therapist, and I loved working with who have turned their lives around, people
patients with spinal cord injuries. But my love who are achieving their goals…that’s just so
of this work began earlier than that – my exciting. There aren’t really any words to
father had hemiplegia, and I remember helping describe it.
him stretch when I was a child. I guess it’s
always been part of my life.
Vistas Goes Electronic A publication of the Arizona Governor’s Council
on Spinal and Head Injuries.
10640 N. 28th Drive, Suite B-102
Do you want to continue to receive Vistas, the Phoenix, AZ 85029
(602) 863-0484 Fax: (602) 863-0521
newsletter of the Arizona Governor’s Council on www.azheadspine.org
Spinal and Head Injuries?
Chair: Roger Schuler
If so, please go to our Web site, Executive Director: Chrystal Snyder
www.azheadspine.org, and sign up to receive it via email. Council Members:
Phil Barry, Ph.D.
To conserve resources, the Governor’s Council will distribute future issues Skip Bingham
of Vistas by email only. This is the final issue to be printed and mailed. Jane Buehrer, M.D.
Rebecca Burch, M.A., CRC
The newsletter – both current and back issues – will also continue to be Nancy Cutter, M.D.
available on the Publications section of the Council’s Web site. Readers who Jill Decker
do not have a home computer or personal email account can access the Fred A. Fiedler
Tim Flood, M.D,
newsletter on the Web from any public library. Gary Frandino, MHS, CRC-MAC
Tina Kwasnica, M.D.
Sign up now to receive future issues of Vistas by email by visiting our Maureen Priestley, Ed.S
Web site, www.azheadspine.org. Questions? Call us at (602) 863-0484. Danielle Puentedura. R.N.
Todd Schmiedl, Ph.D.
We will not sell or transfer your email address to any other entities, Bill Scott
either public or private. Donna Sturgis
Andreas A. Theodorou, M.D.
This material is available in alternative
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Arizona Governor’s Council on Spinal and Head Injuries