ASCC
Welcomes Susan Hancock
Susan Hancock is the new Case
Manager in the ASCC Batesville office
Susan
Hancock joined the Arkansas Spinal Cord Commission (ASCC) staff in April
and has assumed the responsibilities of Batesville Case Manager. She is
a graduate of the University of California with a degree in Sociology.
Susan
has thirteen years of case management experience and brings a wealth of
knowledge to the position. Having previously worked with individuals with
many different disabilities,she is very adept at accessing information
and locating resources. Susan and her husband Elliott have lived in Mountain
View for the past twenty years. She has one daughter, Willow, and one
son, Ben. Her familiarity with the counties she will be serving is a definite
asset.
Over
the past few months changes have been occurring in several ASCC Case Management
offices. Rose Trosper has transferred from the Jonesboro Office
to the Little Rock Case Management Office. She is replacing Dan Stell,
who retired in February, and covers Faulkner and North Pulaski counties.
Russell Henry has transferred from the Batesville office to the Jonesboro
Case Management Office to replace Rose.
The
result of these changes was the need for a new Case Manager in the Batesville
office. ASCC is very fortunate to have found Susan with her excellent
background.
The
Commission members and staff of ASCC are excited to have such a qualified
individual joining our agency. Please join us in welcoming Susan!
2001
Miniconferences Coming Up!
We know
that not everyone can travel to Little Rock to participate in ASCC’s Living
with Spinal Cord Injury conferences. That’s why since 1997 we have
alternated the Little Rock conference every other year with regional miniconferences
in local communities.
This
year our first regional miniconference will be at the University of Arkansas
Community College at Hope on Friday,
July 27. The second regional miniconference
will be conducted in collaboration with the North Arkansas Partnership
for Health Education at the North Arkansas Community College in Harrison
on Friday, October 12.
Each
of the miniconferences will feature educational sessions on topics including
medical issues, community resources, health and wellness and new technology
related to spinal cord disability. The target audience for the sessions
will be people living with spinal cord disabilities, their families and
care givers, and health care professionals such as case managers, nurses,
therapists and other interested individuals. The miniconferences will
also feature an opportunity to see the newest durable medical equipment
and medical supplies. Lunch will be provided.
Mark
you calendar now to attend one of the miniconferences! You will be receiving
program and registration information in the mail as the dates come closer.
Do
You Have More Than One Wheelchair?
Dear
Editor:
One
of my clients recently learned the hard way that Medicare will only reimburse
for repairs on one wheelchair. This person has a manual and an electric
wheelchair. He got reimbursed a small amount for replacement of a wheelbearing
on the manual chair but soon needed to replace the batteries on the electric.
When he submitted the much larger bill for the batteries, Medicare rejected
it stating they were already maintaining the manual chair.
So,
if you have more than one chair you will probably be better off having
Medicare repair the electric or more expensive chair and you pay for repairs
on the manual or less expensive one.
Robert
Griffin
ASCC Case Manager, Russellville, AR
From
the Director
By
Cheryl L. Vines, ASCC Executive Director
It happened
again, and I’m back on my soapbox.
It was
Memorial Day and a lovely young teenager, spokesperson for Mothers Against
Drunk Driving (MADD), was in a motor vehicle crash on a Little Rock freeway.
Ejected from her car, she died at the scene—17 years old! Would a seat
belt have saved her life? Can’t say for sure, but the friend riding with
her, who was buckled up, sustained only minor
injuries, though the car rolled several times. Such a waste
of a young life! And so ironic, as it happened during National Buckle
Up Week, when Arkansas police were out on extra duty, as part of a
national safety campaign promoting the buckle up message!
There
is no question in my mind that seat belts save
lives and prevent injuries. I consider it just another little
insurance policy every time I buckle up. Maybe Representative Jake Files
of Fort Smith feels the same way. He sponsored a bill during the legislative
session that requires children up to 60 pounds or 6 years old to be secured
in child safety seats and children from ages 6 to 15 to be buckled up
in seat belts. Or, maybe Mr. Files knows another young woman who was in
a motor vehicle crash when she was 17—she lives in his area, and lives
with a spinal cord injury and on a ventilator.
It’s
not worth taking the chance. Take a second and buckle
up!
With
Thanks
Donations this quarter from:
Jimmy Ashley
David Huddleston
Sandy Turner
Judy & Rick Layton
Richard Bradshaw
Donald & Diane Hancock
In Memory of Maria Sullivan:
Micki Gott
Susan Geis
Mr. & Mrs. Russell Patton, Jr.
ASCC
accepts tax deductible donations. The generosity of the many individuals
and families, who over the years have made memorial donations, is greatly
appreciated. Contributions are used to assist our clients through purchases
of equipment and educational resources.
If you
would like to make a contribution, please contact the Commission at 501-296-1788
/ 800-459-1517 (voice) / 501-296-1794
(TDD), or send your donation to:
AR
Spinal Cord Commission
1501 N. University, Suite 470
Little Rock, AR 72207
Hendren
Overhauls Disabled Parking Laws
Representative
Kim Hendren came to the 2001 legislative session with a mission, to assure
that people with disabilities are the only ones who use disabled parking
spaces. Working with Governor’s Commission on People with Disabilities
Executive Director Barry Vuletich, he sponsored House Bill 1196, now Act
609 of 2001—an Act to enhance the penalty for parking in a disabled parking
space and reduce the time period for issuance of disabled parking certificates.
This is yet another step to strengthen the Arkansas disabled parking laws.
Act
609, which will go into effect on August 17, 2001, increases the penalty
for parking in a disabled space. In addition to the present fines of $100
to $500 for a first offense and $250 to $1,000 for a second or subsequent
offense, Hendren’s legislation adds that upon the second or subsequent
offense, the court shall suspend the driver’s license for up to six months.
That should get parking abusers’ attention!
The
Act also requires the Department of Finance and Administration to include
a notice with all applications for special license plates or placards
informing the applicant and anyone driving for the applicant of the fines.
The
notice specifically informs them that the privilege to park in spaces
reserved for people with disabilities shall be available only
when the person for whom the plate or placard was issued or a person with
a physical disability is in the car.
Finally,
the Act makes two other administrative changes. It requires that special
license plates or placards be returned to the State Department of Finance
and Administration when a person moves from the state, or within 30 days
of the death of the person to whom it was issued. This should prevent
placards from being handed down like family heirlooms or sold at garage
sales (don’t laugh—it has happened). It also decreases the period the
placard is issued for from five to two years, but will not require additional
medical certification to renew.
Thanks
to the work of Representative Hendren of Gravette and Barry Vuletich,
the bill sailed through the House and Senate and was signed into law by
Governor Huckabee on March 7, 2001. The Arkansas Spinal Cord Commission
extends our appreciation to Representative Hendren and Barry for their
work on behalf of folks with disabilities.
Now,
parking abusers beware! You are warned in advance: illegal parking in
spaces reserved for people with disabilities, even in a vehicle with a
placard or special plate, could cost you a lot of money or your driver’s
license! It’s not worth it—if you can walk the few extra feet, do it!
What
You Should Know About CAPPS, Part I
Consumer
Action to Prevent Pressure Sores (CAPPS) was a research project conducted
by the Arkansas Spinal Cord Commission and funded by the Centers for Disease
Control and Prevention. The purpose of the project was to determine if
an in-home education program could be effective in preventing pressure
sores in persons with spinal cord injury (SCI). Although this study involved
only persons with SCI, the results can be applied to all persons with
a spinal cord disability.
This
article briefly summarizes the main points and some findings of the study.
Sixty-six Arkansans with SCI, aged 18 to 64, were recruited to participate.
These individuals were randomly assigned to an intervention group or to
a control group. The 33 persons in the intervention group participated
weekly in in-home, pressure sore prevention education sessions conducted
by a home health nurse. The control group received no education sessions.
The prevention education material focused on four areas: skin maintenance,
nutrition, equipment utilization and maintenance, and healthy living.
To measure
the effect of the prevention education on the number and severity of pressure
sores, all participants attended three clinics. The presence and severity
of sores were determined by a physician at the clinics during a medical
examination. The first clinic was conducted before the intervention began.
The second clinic was held six months later at the end of the intervention
and before the monitoring period. The third clinic was conducted at the
end of the monitoring period (12 months after clinic one). In the monitoring
period, the intervention group was instructed to continue on their own
with their pressure sore prevention plan; the control group received no
instructions.
The
number of sores in the control group at clinic one was 15; at clinic three
it remained 15. The number of sores at clinic one for the intervention
group was 24; at clinic three, the number had decreased to 13.
The
severity of sores was measured by the sum of all severity scores of all
participants in each group. (Higher scores indicate sores of greater severity.)
Severity scores for the control group a clinic one was 278 and by clinic
three it had increased to 452. The clinic one sum for the intervention
group was 546 and by clinic three it had decreased significantly to 350.
The difference in severity scores between the control and intervention
group was statistically significant (p<.0001).
Physical
Therapist Twala Maresh performs Xsensor Pressure Mapping to
check for risk of pressure sores for CAPPS participant Lonnie Clark.
The
intervention group, who had worked through the prevention education material
with their home health nurses, experienced a decrease in the number and
severity of pressure sores. On the other hand, the control group who did
not receive the home health nurse visits experienced no decrease in the
number of sores and the severity of sores increased. Thus, it was concluded
that a home education prevention program can reduce and prevent pressure
sores in persons
with SCI.
So,
how did the intervention group do it? What did they do that the control
group did not? Turns out it wasn’t one or two things but a combination
of things. The intervention group made a difference by learning how to
improve their lifestyle in a healthy manner. They learned to exercise
more, manage their stress better,
improve their nutrition, receive more personal
support, and, most importantly, they learned to
take more responsibility for their own health. In other words,
they took a more active part in deciding their own health related activities.
So,
what does this study have to do with you? I mean you’re not like these
study participants, are you? Maybe you’ve never had a pressure sore. What
do you have to worry about?
Perhaps
a lot. At the second clinic, all participants were asked to rate themselves
for their risk of getting a pressure sore in 30 categories. At the same
time the professional clinic staff rated each participant in the same
categories. The results were very revealing. Participants tended to rate
themselves as “low risk” in nearly every category. The difference between
the clinic staff and participant rating was significant (p<.001) and
confirms that individuals with SCI tend to underrate their pressure
sore risk. In other words, people with SCI tend
to think that they are at low risk for developing a pressure sore, but
their actual risk may be much higher.
How
about you? What’s your risk of developing a pressure sore? Do you inspect
your skin every day? Do you exercise/stretch enough? Are you eating healthy?
Do you use a cushion on every seating surface? Is today the day you decide
to take greater responsibility for your own health?
Next
time in What You Should Know about CAPPS, Part 2, we’ll look at
some of the general characteristics of this study population.
Vocare
Bladder System
By
Tom Kiser, M.D., ASCC Medical Director
After
a spinal cord injury a lot of your body systems are affected. The ability
to empty your bladder is one of those systems, and often individuals have
to empty their bladder with a catheter, or for males, use their bladder
spasms to empty the bladder and a condom catheter to catch their urine.
Others go on to have surgery to help with bladder emptying and collection.
An electrical stimulation system, which has been successfully used in
Europe for approximately ten years, has recently been introduced to the
United States. It is called the Vocare Bladder system, and was known as
the Brindley device in Europe (named after its developer, Brindley).
The
Vocare Bladder system is an implantable electromagnet receiver, which
is usually placed on the abdomen under the skin. Wires from the receiver
are then tunneled under the skin, and around to the sacrum where the bone
on the top of the sacrum is unroofed to expose the sacral nerves. The
wires end in a silicon-coated cuff, which are placed around the anterior
sacral nerve roots at the S2-4 level. The sacral nerves are then stimulated
to cause the bladder to contract and empty. They also can stimulate the
lower bowel to empty and help with your bowel program. To allow the bladder
to expand well and not spasm, the sensory nerve roots from the bladder
are cut at a second surgical site higher up on your back after unroofing
the bone over the spinal cord. The surgery takes about six to eight hours
to perform, and you are usually in the hospital for approximately five
days.
The
advantage of the system is that it can be used to stimulate your bladder
to empty without using a catheter, so the risk of bladder infections are
greatly reduced. Usually the system can almost entirely empty the bladder
with less than 50 cc. left in the bladder. With a different stimulation
frequency and duration, the bowels will also contract and the system can
be used to help empty your bowels. For males, erections may be lost when
the sacral sensory nerves are cut, however, at the time of surgery the
surgeon can determine which sacral nerve roots cause erections and the
system can be programmed to provide erections. Nonetheless, to achieve
an erection the transmitter must be placed and held over the receiver
the entire time. The use of Viagra and the Vocare Bladder system is being
investigated to see how they work together.
The
Vocare Bladder system is not for everyone. An individual with an
incomplete SCI will lose sacral sensation and, therefore, is not a candidate.
You need to have reflex bladder contractions, which can generate adequate
bladder pressures. Usually a urodynamic study will determine if your are
a good candidate. If your present bladder system is working well there
is no real reason to switch methods of bladder management. The ideal candidate
is an individual with a complete SCI who periodically has bladder incontinence
and frequent bladder infections with the present bladder management method.
You must be able to transfer to a toilet or wear a condom catheter to
collect the urine when the system is used.
The
system has yet to be fully implemented in Arkansas and just recently has
become available at the Baptist Health Medical Center in Little Rock.
If you, or someone you know, want to learn more about the system or to
be assessed you can learn more at the following web site: www.neurocontrol.com,
or call the company, NeuroControl at 1-888-333-4918.
We’re
Updating Our Website
Due
to personnel changes, the ASCC website, www.state.ar.us/ascc,
has gotten behind the times and needs updating. So, we are now in the
process of revising the website.
The
site presently contains information about the agency and services we offer.
Copies of the legislation that created the agency are available. Our fact
sheets and past issues of Spinal Courier are on the website and
ready to be downloaded. Also, information on the ADA, statistics about
spinal cord disability and long term care information are listed.
Our
revised website will be including news of upcoming events that are of
interest to our clients and spinal cord disability professionals. The
updated site will also have links to other related websites.
We would
like to know what you would like to
see on our website. E-mail us at
[
courier@arspinalcord.org ] with your
ideas!
More
Incentives on the Road to Independence
By
Phil Klebine, Editor, Pushin’ On
Many
readers of Incentives to Get You Working were surprised by the
work incentives offered by the Social Security Administration. [See
the January 2001 issue of Spinal Courier] However, most everyone wanted
to know more, so this article briefly
highlights other incentive programs that may help individuals with spinal
cord injury (SCI) maximize their independence.
Buying
a Car or Van
Lack of transportation is a major issue for many individuals with SCI.
Public transportation does not exist in all areas and is often limited
and unreliable where it does exist. There are some people who could, and
would, drive if they had the money for a car or van. The problem is many
cannot afford the high monthly payment for a car or van. However, most
large automakers such as Chevrolet, Ford and Chrysler offer extended financing
for people with disabilities to help bring down the monthly payment. Those
who qualify get extended financing from between 72 to 96 months. This
means you can stretch payments for up to three years longer than most
payment plans. Automakers may also provide a small rebate (usually up
to $1000) for selected adaptive equipment. Talk to your area dealership
if you are interested because every program is different.
Home
Financing
Owning a home is the American dream for most people. This is usually a
dream never realized by many people with disabilities because they have
low to moderate incomes and limited savings. Fannie Mae’s HomeChoice program
helps individuals with disabilities overcome these obstacles. The Fannie
Mae Foundation works with lenders, mortgage insurers, state and federal
government agencies and non-profit organizations across the country to
help find various programs to assist with down payments, closing costs,
cost for modifications and other costs necessary to buy a home. This process
is very complex, so talk to a professional if you want to buy a home.
To find a housing counselor in your area, contact Fannie Mae HomePath®
Services at 1-800-732-6643 (www.homepath.com)
or the National Home of Your Own Alliance at 1-800-220-8770.
Conclusion
The overall goal for most individuals with SCI is to have all those things
that most everyone wants in life: a job, family and a home of their own.
There are many more programs available to help you reach your goal. Many
of these programs are hard to understand. You may have to provide proof
that you have a disability. You may be asked to provide personal financial
information. Before you can qualify for a program, you must know the process
and requirements of the organizations providing the assistance. It is
up to you to investigate all of the programs to find and use the ones
that are right for you. When you reach a point when you are truly as independent
as possible, you will see that it was all worth the effort.
This
article was reprinted with permission from Pushin’ On, 19(1), January
2001, page 5. Pushin’ On is a publication of the University of
Alabama at Birmingham (UAB) Medical Rehabilitation Research and Training
Center on Secondary Conditions of SCI and UAB Model SCI Care System.
Wheelchair
Parking
By
Mark Hoyt, Clinton, AR
Recently
I wrote a letter to the Commission about the wheelchair parking problem.
In return, Cheryl Vines wrote back informing me of the act Representative
Kim Hendren got passed for us. This was very good news indeed. But I would
like to go a step further and address the disability problem from a different
point of view.
At first
there was a bill passed for people in wheelchairs allowing them to be
able to park directly in front of a business. This was done for several
reasons. One reason was that people in wheelchairs are low to the ground
and someone might back into them as they travel from a distant parking
space. Another reason is to allow an extra wide space to open the car
door all the way to get in and out of the vehicle or to allow adequate
space for vans equipped with chair lifts.
Soon,
everyone with any kind of disability you could possibly think of joined
in on the special parking spaces—and now the people in wheelchairs can’t
find a place to park.
If we’re
going to let everyone with a disability park up front, then we need to
design a system for everyone. This can be done very easily. All we need
to do is create a new space for all the other people with disabilities
that don’t require a wheelchair.
I propose
we have normal size spaces for these people, right next to the ones designated
for wheelchairs. They don’t require a wide space to park and three parking
spaces can fit in the same space needed for two wheelchair spaces. We
can save room and keep everyone happy at the same time.
There
are signs now that say “handicapped” and would be perfect for these smaller
areas. Their car tags could stay the same so there would not be any confusion.
Everyone would be happy and people in wheelchairs could reclaim the parking
spaces they fought so hard to get.
I have
been in a wheelchair for 23 years, and for 23 years I have had a problem
finding a space to park. Why? Not because there are so many people in
wheelchairs, but because there are so many people misusing the spaces
made available. Every year I have witnessed more and more people obtaining
handicap permits. Even if all the people who are misusing these spaces
are made to stop, the problem of people in wheelchairs finding a place
to park will remain. Although we have people like Cheryl Vines and Kim
Hendren helping with this battle, I don’t see people in wheelchairs regaining
their spaces with the way things
are now.
Cheryl
informed me that this issue should be directed to our state representatives
and senators. So, I am asking everyone who reads this and agrees with
it to write their legislators so we
can reclaim the space for wheelchair parking.
Jeremy’s
Wish Came True!
Eleven-year
old Jeremy Wisham of Lake City, AR, born with spina bifida, is a true
St. Louis baseball fan. He wished he could meet the Cardinals, especially
his idol, Mark McGwire. His wish came true this past spring when
he served as Honorary Bat Kid for the St. Louis Cardinals at their spring
training camp in Florida.
On March
6 he left Memphis and flew to West Palm Beach, FL. Jeremy was accompanied
on the trip by his parents, Randell and Carol Wisham, and his brother
Jeffery, age 15. The next day he was the Honorary Bat Kid at the spring
training game between the Cardinals and the Baltimore Orioles.
Cardinal
Lou Brock escorted Jeremy to home plate as he presented the Cardinals
lineup cards. His name was displayed on the scoreboard and announced over
the PA system. As he was leaving the field, Jeremy was presented a ball
signed by some members of the Orioles team.
Jeremy
Wisham is very proud of the autographed
bat he received while serving as Honorary Bat Kid
for the St. Louis Cardinals at their spring training camp.
Jeremy
met the members of the Cardinals team and got several autographs, including
those of Hall of Famers Lou Brock and Red Schoendienst. Lou Brock told
him he was a native Arkansan born in El Dorado. His favorite, though,
was Mark McGwire. McGwire signed Jeremy’s bat and told him to enjoy the
game.
His
father said, “I want to thank the Make-A-Wish Foundation and everybody
in Paragould who contributed to make this possible.” The Jonesboro chapter
of the foundation had set a goal of $5,000, but exceeded their target.
The Jr. Food family of employees from the company’s 17 Northeast Arkansas
stores raised $5,200 to fund Jeremy’s trip. Jeremy is a very happy young
man whose wish came true!
National
Wheelchair Basketball
Tournament Update
Arkansas
was well represented in the National Wheelchair Basketball post-season
tournaments this year! The Junior Rollin’ Razorbacks were one of 16 teams
that qualified for the National Junior Wheelchair Basketball Tournament
(NJWBT) at Oklahoma State University in Stillwater, March 16 to 18. This
was the Junior team’s sixth appearance at the NJWBT.
Though
the Junior Hawgs didn’t fare well in the competition, their point guard
Ryan Buchman won the Sportsmanship award and was also selected to the
NWBA Academic All American team. Buchman and teammates Tyler Garner and
Kevin Hosea will represent the United States on the U.S. Junior National
team competing in Sydney, Australia in October. Razorback Coach Doug Garner
will serve as the U.S. Team Coach.
Not
to be outdone by their Junior counterparts, the Rollin’ Razorbacks upset
the Music City Lightning in the South Division 1 regional tournament to
qualify for their 13th consecutive trip to the National Wheelchair Basketball
Tournament this year in Chicago on April 13 and 14. The Razorbacks lost
in the semifinals to this year’s national champions, the Golden State
Road Warriors. It was still a good weekend for the Razorbacks, one of
the winningest teams in NWBA history, as long-time Coach Harry Vines was
elected to the National Wheelchair Basketball Hall of Fame, recognizing
his role in the team’s success.
SAILS
Ninth DeGray Playday
Coming Soon
SAILS
(Spa Area Independent Living Services) in Hot Springs will hold its ninth
DeGray Playday, Saturday, August 25, 2001,
at the Caddo Bend Swimming Area on
DeGray Lake State Park. This one-day,
no cost event provides people with disabilities the opportunity to try
recreational equipment usually taken for granted by the nondisabled world.
This
year’s activities include swimming, scuba diving, and riding jet skis,
party barges and inner tubes. Land activities include volleyball, bingo
and just plain old crowd watching.
As always,
plenty of strong, young volunteers will be on hand to help participants
on to and off of each activity. Picnic lunch will be served at noon. Activities
start at 10:00 a.m. with Playday IX
t-shirts given to the first 100 registrants.
Make
your plans now to attend. For further information, call SAILS toll free
at 1-800-255-7549v/tdd, or in Hot
Springs, 624-7710.
Hope
to see you there!
New
Videos and Books
in the Resource Center
The
McCluer Education and Resource Center on Spinal Cord Injury has added
a number of new items to its collection. If you are interested in checking
out any of the resources, please call the Resource Center at 501-296-1792
or 1-800-459-1517.
Dealing
With Aging: Physical Function Presentation
by Twala Maresh, P.T., (video) helps the aging person grow old gracefully
and easily. With tips and advice from this skilled Physical Therapist,
you can be sure to remain active long after you thought you might.
The
Antibiotic Paradox ? How Miracle Drugs Are Destroying the Miracle
by Stewart B. Levy, M.D., (book) examines how the overuse of some antibiotics
have caused problems in today’s society.
Climbing
Back
by Mark Wellman and John Flinn, (book) encourages the disabled to accomplish
great physical achievements and personal goals.
Disability
in America
by the Institute of Medicine, (book) details new groundbreaking approaches
to the prevention of disability. It also offers statistics on spinal cord
injuries.
Sexual
Rehabilitation of the Spinal Cord Injured Patient,
edited by J.F.L. Leyson, M.D. While this book provides comprehensive coverage
of sexuality in disabled persons, it has an additional focus on the psychosocial
aspects of sexuality.
Quest
For The Cure
by the Paralyzed Veterans of America, (book) details new advancements
in restoring function after spinal cord injures.
SPINAL
COURIER
Published quarterly by Arkansas Spinal Cord Commission
Cheryl L. Vines, Executive Director
Thomas L. Farley and Dee Ledbetter, Coeditors
Commission Members: James Miller, Chair; Sheila Galbraith Bronfman; Joe
McNiel; Russell Patton, III; Sandra Turner
The Arkansas Spinal Cord Commission does not discriminate on the basis
of race, color, national origin, sex, religion, age or disability in employment
or the provision of services.
Visit our website at: www.state.ar.us/ascc
or e-mail us at: courier@arspinalcord.org
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