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					                                                                                                                           VISTAS GOES
                                                                                                                           ELECTRONIC
                                                                                                                             (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
                                                                                              finite resources.
                                           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
                                           Council.
 Conversations. . . . 7
         f o c u s                                              o n                      S p i n

                           SCI Empowerment Training
                           Changes Lives
                           “      mpowerment helps people to look          The course is targeted to consumers and


What Past
                           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
                           Barrow Neurological
“This course has been      Institute’s Neurological
the best I have            Rehabilitation Program.
experienced – in           “People see that there’s
                           life beyond the
information and
                           wheelchair, and they
truthfulness and           become more active in
usefulness to my life.”    their communities and
                           their lives.”
            —CONSUMER
                           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
        —FAMILY MEMBER
                           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


2
a l             c o r d                                        i n j u r y

                                                               SCI Events Offer
                                                               Education, Support
 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
                                                               Tomorrow.”
 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 azscia2003conf@cox.net.
 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.


                                                                                                                      3
      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
                                                               insurance plans.
                                                               “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
                                                               lifelong.”
 “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.


4
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
                                                                  1996.
  Governor’s Council
                                                                                             partners:
  on Spinal and                                                        • The Brain Injury
  Head Injuries.                                                         Association of      • Centers for Disease
                                                                        America Partners
  By building                                                                                  Control and
                                                                    in Communication
  coalitions, national
                                                                 initiative, which             Prevention
  partners, non-profit and
                                                             provides information and
  professional organizations,
                                                          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
                                                 Arizona.                                      Rehabilitation
  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.”


                                                                                                                5
           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
education professionals.
                                                                             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
information,
                               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.
visit www.azdx.com.
                               “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


6
Conversations:
 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
                                                                                                          adversity.
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?
specialized field?
                                                       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.


                                                                                                                   7
                                                                                                   Vistas
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.
                                                                                     Raymond Norris
                                                                                     Sharon Phillips
 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
                                                                                         format. Call (602) 863-0484 (voice) or use the
                                                                                                    Arizona Relay Service.




                                                                                                 Client Self-Sufficiency
                                                                                                 Quality Service, Organizational Pride,




                                                                Phoenix, AZ 85029
                                                                10640 N. 28th Drive, Suite B-102
                                                                Arizona Governor’s Council on Spinal and Head Injuries

				
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