Vistas: a newsletter of the Arizona Governor's Council on Spinal and Head Injuries

              Clockwise from top:
Chrystal Snyder,
Annette Zaccari,
Gary Venjohn,
Joseph Corrigan
A Newsletter of the arizona Govenor’s Council
on Spinal and Head Injuries
Saluting Our Partners
Welcome to the second issue of Vistas,
the newsletter of the Arizona
Governor’s Council on Spinal and
Head Injury.
In this issue we highlight the
work of two of our key
partners, the Brain Injury
Association of Arizona and
the Arizona United Spinal
Cord Injury Association.
Both organizations fill a
tremendously important
role in the continuum of
services for individuals with brain and
spinal cord injuries as well as for their
families, friends and the professionals
who work with them.
What do the Associations do? Many
things—but in a nutshell, we’d say that
they serve as the authentic voice of the
community. They reach out to those we
serve; they provide vital feedback to the
Council on a host of grassroots issues;
they partner with us in our efforts to
make information available to the
public.
While both Associations are statewide
in their focus, they also bring us exper-
Winter 1999 Volume 1, Number 2
INSIDE
Vistas
New Directions
for BIA of AZ ........ 2
Dealing with School
Re-entry................. 3
New SCI
Association ........... 4
Navajo Artist ........ 5
Wheelchair Suns .. 6
Resources .............. 7
tise on a national level. For example,
the Brain Injury Association of Arizona
recently hosted the National Brain
Injury Association’s annual training
conference on Information and
Resources. The Arizona United Spinal
Cord Injury Association will be the next
host of the National Spinal Cord Injury
Association’s Annual Education
Conference. These connections to
national organizations broaden our
perspective and help us learn from the
successes (and sometimes the mistakes)
of other states.
Both organizations run, largely, on
volunteer energy. While both have
talented professional staff, their success
is due in great measure to the commit-ment
and the caring of the many indi-viduals
who give their time, energy and
resources.
We believe that, working together, the
Council and the Associations represent
what’s best about public/private
partnerships. We appreciate their
efforts, and we’re proud to salute them
in this issue of Vistas.
— Chrystal Snyder
f o c u s o n T r a u m a t
The Brain Injury Association of Arizona
(BIA of AZ) has served individuals with
traumatic brain injury and their families for
16 years. This summer, the Association
hired its first Executive Director, Linda
Weinberg. Recently, Vistas spoke with
Ms. Weinberg about her goals for the
Association.
Vistas: The Brain Injury Association of
Arizona has been active for nearly two
decades as a volunteer organization.
What prompted the decision to hire an
Executive Director?
Linda Weinberg: The Association has an
incredibly dedicated Board of Directors.
Volunteers established the Association;
they present at confer-ences,
they advocate
for funding. How-ever,
the Association
has grown to the point
where the Board
needs a full-time staff
person to implement
its ideas and pro-grams.
That’s where I
come in.
Vistas: What kind of
background do you
bring to the position?
LW: I have a strong
background in behav-ioral
health. I’ve
worked as a planner
and negotiated and monitored behav-ioral
health contracts. I’ve also done a
lot of grant writing, and I served as
Executive Director of an agency that
assisted homeless families. I received a
grant from the National Institute of
Mental Health to complete my Masters
in Social Work degree from ASU.
Vistas: What are the primary areas
of focus for the Association in the
upcoming year?
LW: We’re focusing on three areas—
visibility, awareness, and resources.
Vistas: Why visibility?
LW: While the Board has been incred-ibly
active over the years, it hasn’t
always been real visible—so people who
need our assistance the most may not
know we’re here. We also need to raise
our visibility because it will help us in
soliciting funding. As a first step, we’re
establishing an office in space donated
by one of our board members.
Vistas: How does the Association plan
to raise awareness?
Every 15 seconds someone sustains a
head injury, and 5.3 million people—
about 2% of the population—are living
with head injuries. Yet one of the most
difficult aspects of a head injury is that
often the damage is not visible—so
people aren’t aware of the extent of the
injury, and misdiagnosis may occur.
We need to educate professionals about
injury prevention and about the lasting
Brain Injury Association of Arizona
Charts a New Course
“we’re
focusing
on
visibility,
awareness
and
resources.”
2
i c B R A I N i n j u r Y
effects of a head injury. We also need to
establish educational programs in the
schools. Just as we teach children about
fire safety and “stranger danger,” we
also need to raise their awareness about
preventing head injuries.
Vistas: What are you planning in the
area of resources?
LW: We want to be the focal point in
the community for prevention,
education, and advocacy efforts.
Currently, we have information lines in
Phoenix and Tucson. Our next step will
be to establish a toll-free number so we
can assist individuals statewide.
Vistas: How can people contact the BIA
of AZ?
LW: Call us! Our phone number in
Phoenix is (602) 952-2449 and in Tucson,
(520) 747-7140.
Clinic Helps Ease
School Re-entry
A major
goal is to
provide
schools
with
better
information.
3
“Children who return to school after a
traumatic brain injury face significant
challenges,” says Dr. George Prigatano,
director of the Clinical Neuropsychol-ogy
Department at Barrow Neurological
Institute. “So do their parents, teachers
and peers.”
Yet little guidance is currently available
for professionals and family members as
they help children negotiate these
challenges, says Dr. Prigatano. To better
understand the difficulties of school
re-entry, Dr. Prigatano conducted an
intensive summer clinic for children
with traumatic brain injury. The clinic
took place at Barrow Neurological
Institute in Phoenix.
Participants in the unique 6-week
program were children between the
ages of 7 and 8 who had sustained
traumatic brain injuries. All had been
determined to be ready to return to
school, but had experienced difficulties
in the school environment.
“Academically, students struggled in
the areas of language, memory, and
concentration,” explains Dr. Prigatano.
“They also had problems understanding
appropriate classroom behavior and
cooperating with others.”
A major goal of the study is to provide
schools with better information on
working with children with brain
injuries, particularly as they re-enter the
school setting.
Continued on Back Page...
f o c u s o n S p i n a l
“People
with a
spinal cord
injury
have a
right to
dream of
a better
tomorrow.”
4
New Spinal Cord Injury Association
Tackles a Big Job
On April 1, 1999, the Arizona
United Spinal Cord Injury
Association (AUSCIA opened
for business with a grant from the
Governor’s Council on Spinal and Head
Injuries. But for Paul Mortensen, Execu-tive
Director, the effort really began on
September 23, 1997.
That’s the day his 23-year-old daughter
suffered a spinal cord injury. Up to that
point, Mortenson says, “I really didn’t
know what a spinal cord injury was.”
His reaction was not unusual. “Spinal
cord injuries happen so suddenly and so
unexpectedly that the trauma takes the
family and the injured person totally by
surprise,” he says. And that’s also the
reason there is so much work to be done
by the newly formed association.
The Arizona United Spinal Cord Injury
Association wants to provide
information and guidelines for people
with spinal cord injuries and their
families. Its agenda is ambitious.
Peer and family support groups,
education of consumers, families and
professionals, and a link to resources
are just a few of its areas of concern.
The Association is setting up an
information and referral library, not
only in hard copy but also on the
Internet. Support groups for adult
consumers, for family members and for
young people 8-18, are now meeting on
a monthly basis with neuropsychologist
Stewart Thomas. An Early Intervention
Program designed to work with people
during the first 90 days after an injury is
in place. The Association is also making
a special effort to focus on the preven-tion
of spinal cord injury by supporting
programs that teach safe driving and
recreation habits.
To describe the goals of the Association,
Mortensen quotes the organization’s
new theme: “Wheels Toward a Dream,”
a paraphrase of an old ragtime duet. It
means, Mortensen says, that ���people
with a spinal cord injury have a right to
dream of a better tomorrow, to dream of
and hope for the maximum possible
physical, psychological and social
recovery.”
The Association has already begun to
take major strides in helping people
achieve that dream. To contact
AUSCIA, please call (602) 239-5929.
c o r d i n j u r y
Goldie” looks over her bare left
shoulder, strands of hair
falling across her face, a
butterfly tattooed on her back. She
gazes right past you, as if you were not
there, as if there were something far
more important happening elsewhere.
This lovely, mysterious image is the
work of Isabelle Jackson, a Navajo artist
from Keams Canyon. For more than 20
years, she has painted with a brush held
in her mouth. Her career began after a
spinal cord injury received in an auto-mobile
accident at age 17 left her unable
to use her hands.
Isabelle started to paint soon after she
left the hospital. The young man who
eventually became her husband and
Carolyn Mitchell, her social worker,
encouraged her to do so. Both are still
encouraging her, although today many
know the work of Isabelle Jackson.
Isabelle works in water-color,
oil, and pen and
ink. Most of the images
come from her imagina-tion,
although all have
roots in Navajo culture:
maidens with shy smiles,
a young boy herding
sheep, a hogan covered
with snow, the Madonna
and child stylized to
reflect the Navajo vision.
A thread of introspection, calm assur-ance
and private thoughts run through
5
Most of
the images
come
from her
imagination,
although
all have
roots in
navajo
culture.
The Art of Isabelle Jackson: Inspiring,
Serene and Hauntingly Beautiful
her work. Carolyn
Mitchell, now a close
friend, says that
these images “are
reflective of Isabelle
herself.” She knows
who she is and what
she can do, and she
is strong and beauti-ful.
Isabelle Jackson, the
artist, is also a wife
and mother of a
15- year-old son.
She is a member of
the International Foot and Mouth
Artists Organization.
Isabelle Jackson’s work is available
through AUSCIA. Please call (602) 239-
5929 for more information.
“
6
Prevention
The Banner Wheelchair Suns.
Score One for SCI Prevention.
Wheelchair Basketball Association. (It’s
actually an international league, with
teams in Latin America, too). They play
from coast to coast, from Miami to San
Diego, and last year, the 15-member
Wheelchair Suns came within 6 points
of making “The Final Four” in Chicago.
“Wheelchair basketball is a tough,
competitive, demanding game,” notes
Venjohn. “We play a full-court fast-break
offense, switch to half court if
necessary, play zone and triangle zone
defenses as well as man-to-man. Our
guys are in shape.”
Gary points out that all basketball
players need to control the ball and
their body; wheelchair players need to
control the ball, their body (which often
does not respond as they’d like) and the
chair as well. No small task.
Even with those demands, good teams,
like the Wheelchair Suns, can average
70-80 points during a regulation NCAA-level
40-minute game!
The Banner Wheelchair Suns are scoring
big points for people with disabilities,
and doing their best, as well, to prevent
others from being injured. Go, team, go!
p r e v e n t i o n
Since 1988, they’ve been playing
wheelchair basketball to drama-tize
that people with disabilities
have abilities – significant and impres-sive
athletic abilities. Now, the Banner
Wheelchair Suns are taking that mes-sage
to schools and expanding it to
include a powerful prevention message
as well.
Former Council president Gary
Venjohn, Access Employment Coordina-tor
at Arizona State University and also
the coach of Banner Wheel-chair
Suns, says that the
team is doing presentations
in schools because the
teenage audience is in need
of a glimpse of reality right
now. (The incidence of
teenagers, under 18
arrested for DUI, notes
Gary, has doubled in the
last few years!)
“Before they get their
driver’s license,” Venjohn
says, “teenagers need to
hear about the dangers of
drinking and driving.
Someone sitting in a
wheelchair, someone who’s
an athlete, can deliver that
‘drive safe’ message in a powerful way.”
The Banner Wheelchair Suns are
sponsored by the Phoenix Suns, Banner
Health Care and America West Airlines.
The team plays as many as 30 games a
season as part of the 200-team National
7
(Editor’s Note: In each issue of Vistas, we
spotlight a resource—a book, tape, Web site or
other publication—that may be helpful to
people with spinal cord or brain injuries or to
their families and friends. If you have any
suggestions for resources to be featured in this
column, please let us know and we’ll try to
spotlight them in future issues.)
With the holiday season upon us, Santas
in every corner of the state are making
their lists and checking them twice. If
Santa’s list includes a child with a brain
or spinal cord injury, he may want to
consult the Toy Guide for Differently-
Abled Kids.
This colorful catalog is a joint effort of
Toys ‘R’ Us, the National Parent Net-work
on Disabilities, and the National
Lekotek Center, an organization
dedicated to bringing families of
children with disabilities together to
play, explore and just have fun.
The catalog presents 27 pages of toys
for children of all ages. Each toy is
paired with a series of symbols,
representing the developmental skills
or senses that it enhances: auditory,
language, visual, tactile, gross motor,
fine motor, social skills, self-esteem,
creativity and thinking.
The goal, according to Toys ‘R’ Us CEO
Robert Nakasone, is to help parents and
others by “making it a lot easier to buy
the right toy for any differently-abled
child.”
The catalog recognizes that finding the
right match between a child and a toy
r e s o u r c e s
RESOURCE REVIEW
Toy Guide Gives Santa
a Helping Hand
can be challenging. It offers guidance
to parents and others on what to look
for in evaluating a toy’s suitability for a
particular child—for example, method
of activation, adjustability, opportunities
for success, and potential for
interaction.
Actress Marlee Matlin, who is deaf,
appears on the catalog’s cover and
stresses the importance of finding the
right toys in her introduction.
“Children…who have disabilities have
the same dreams as all children,” she
writes. “Toys are a child’s tools to help
them build their dreams and create their
future.”
Now in its 6th edition, the catalog is
available free of charge at the customer
service desk at Toys ‘R’ Us stores na-tionwide.
It’s also available by calling
toll-free, 1-800-732-3298 or 1-888-859-
8011 (TDD/TTY).
Available from the
Governor’s Council
Visit our Web site at
www.azrsa.org/head&spine
The Council donates materials to
these libraries and organizations:
Flagstaff Public Library
(520) 779-7672
Prescott Public Library
(520) 445-8110, ext. 3
Yuma Public Library
(520) 782-1871, ext. 124
Phoenix:
Emily Anderson Center
(602) 239-6902
Maricopa County Library
(602) 506-5763
Phoenix Public Library
(602) 261-8690
Raising Special Kids
(602) 242-4366
Tucson:
Pilot Parents Partnership
(520) 324-3150
Ronald McDonald House
(520) 326-9003
Tucson-Pima Public Library
(520) 791-4393
Brain Injury Resource Centers
(BIRCs) are interactive multimedia
programs that provide information
on brain injury. You’ll find a BIRC
kiosk located at these hospitals:
Flagstaff Medical Center
1st Floor West, Outpatient
Therapy
St. Joseph’s Hospital
Phoenix
1st Floor, Inpatient Neuro
Rehab
Tucson Medical Center
Surgical Waiting Room
For more information, call:
Brain Injury Assoc. of Arizona
Phoenix: (602) 952-2449
Tucson: (520) 747-7140
AZ United Spinal Cord Injury Assoc.
(602) 239-5929
Arizona Governor ’s Council on Spinal and Head Injuries
10640 N. 28th Drive, Suite B-102
Phoenix, AZ 85029
PRSRT STD
US POSTAGE
PAID
TUCSON, AZ
PERMIT #475
Vistas
A publication of the Arizona Governor’s
Council on Spinal and Head Injuries.
10640 N. 28th Drive, Suite B-102
Phoenix, AZ 85029
(602) 863-0484 Fax: (602) 863-0521
www.azrsa.org/head&spine
Executive Director: Chrystal Snyder
Chair: Annette Zaccari, C.I.S.W.
Council Members:
Phil Barry, Ph.D.
Skip Bingham
Jane deVeer Buehrer, M.D.
Joseph M. Corrigan
Tim Flood, M.D.
Ernest Griffith, M.D.
KV Kumar, M.A.
Raymond Norris
Dan Overton, N.C.C., C.T.R.S., M.C.
Kathern Plenge, M.D.
Lola Satoe, M.Ed.
Bill Scott
Raj M. Singh, M.D.
Rhoda Sokal, M.A., M.Ed.
Ann Tarpy, M.Ed.
Judy Tucker, M.A.
Gary Venjohn
This material is available in alternative
format. Call (602) 863-0484 (voice) or the
Arizona Relay Service.
Each day at the clinic featured a
variety of rehabilitation and
educational activities. These
included cognitive retraining,
academic assistance, physical
activity, quiet time, and group
discussion.
A staff of four psychologists, an
occupational therapist, and a
special educator worked with the
children, individually and in small
groups.
Dr. Prigatano believes the program
benefited the students as well as
parents and professionals. He
plans to conduct a similar clinic
next summer and, if funding
allows, during the school year’s
winter break.
For more information on the clinic,
call Barrow Neurological Institute,
(602) 406-3671.
School Re-entry
Continued from Page 3...
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