Spinal Courier January 2007

Governor Mike Beebe made his first appointment to the Arkansas Spinal Cord Commission on May 3, 2007, appointing Jon Wilkerson of Center Ridge. Mr. Wilkerson replaces James Miller, who had completed his ten year term in January, and will serve until 2017.

Some might consider Mr. Wilkerson ‘new’ to the world of spinal cord disability. He sustained his spinal cord injury in June of 2006 while mountain biking near Seattle, Washington. He lives with C4 tetraplegia. However, Jon had actually learned about the disability nearly a decade ago, as a Physical Therapy (PT) student at University of Central Arkansas. After receiving his Master’s degree in PT, he went on to work at HealthSouth Rehabilitation Hospitals in Fayetteville and Sherwood, Arkansas. He was working in a private practice in Hot Springs when he decided he wanted to see more of the country and took a ‘traveling’ PT position. He had been in Washington for 10 days when he was injured.

Jon brings his knowledge of therapy practice, his own recent rehabilitation experience and a keen interest in assistive technology to his new role. He plans to continue to work in the health care field, particularly in the area of systems change and legislative issues. All of these skills will serve the Commission well.

Please join the members and staff of the Arkansas Spinal Commission in welcoming Jon Wilkerson to his new position.

According to Dr. Julie van Putten, Medical Director at Columbus Neighborhood Health Center Inc., people with disabilities who decide to change doctors should keep these things in mind to avoid a disruption in their care.

• Does the physician you are considering offer a longer appointment? Most physicians allot about 15 minutes per visit. But people with disabilities may need a longer appointment time, at least for the initial visit, to coordinate services and fully discuss health issues.

• Does the physician you are considering do hospital visits? If not, then your care will be switched to another physician if you are hospitalized.

• Are the age, sex and religion of a doctor important to you? “For some people, it may make a difference,” van Putten said.

• Does the office you are considering have just one doctor or several, and will you see the same doctor all the time?

• When communicating with your doctor, make a list of concerns and take the list with you to the appointment. “Consider bringing a family member or friend,” van Putten advised.

• Ask your prospective doctor if you will be able to get copies of your tests and test results, as well as a copy of your list of medications. “That’s real critical for continuity of care,” van Putten said. Patients, she suggested, should maintain a folder at home with those copies of tests, etc.

• Is your new doctor willing to speak with your specialists? “Ultimately, your primary care physician should be someone who is advocating for you and your care,” she said. Many times, people with disabilities have several specialists, and good communication between them is vital.

• Will parking cost you extra? Sometimes, even a big parking lot becomes full, so consider where the overflow parking will be and at what cost. In addition, people who decide to switch to a community health center for their care need to be aware of the following important items:
Obtain your medical files yourself from your previous doctor, if possible. Bring as many of your medical records as you have to your first appointment with the new doctor. “That allows your doctor to make the appointment much more meaningful,” van Putten said. “It can take between two to three months for medical offices to transfer records, so having records with you lets the doctor see what’s been done. Otherwise, a lot of tests get reordered.” If your previous doctor’s office won’t give you your records, give them the address of your new doctor, so they can forward your records.

If switching to a community health center in your area, you need to prove that you are financially eligible for continued services by providing the following as proof of income or proof of no income: last paycheck stub and a picture ID, or records of your disability income.

This article was reprinted with permission from DD Quarterly, January 2007, page 7. DD Quarterly is a publication of the Ohio Developmental Disabilities Council.

Hot Springs Area Support Group Meets

Dear Readers:

The first meeting of a new support group for caregivers was held in Hot Springs at St. Joseph’s Mercy Health Center on July 10th in the Mercy Room. The Arkansas Spinal Cord Commission and Advance Care Hospital of Hot Springs are jointly sponsoring this group.

For information on the next support group meeting, please contact me at 624-4411, Ext. 428.

Kim Brown, ASCC Case Manager

This year’s ASCC Achieving Your Dreams conference was our best yet. Yes, I know I say that every year, but it is true, each seems better than the last! We had excellent speakers, demonstrations including one by the Rollin’ Razorbacks, great exhibitors with state-of-the-art equipment and over 200 participants to share their own experiences and knowledge.

One topic really hit a chord with me. Marilyn Hamilton, inventor of the Quickie wheelchair gave a very interesting talk. Her topic was ‘In the Home.’ As she related, ‘in the home’ was a great accomplishment 40 years ago—it meant people could get out of institutions and have federal assistance from a then new program, Medicare, to live ‘in the home.’

Fast forward to the twenty first century. Many more people live with disabilities. Relatively few live in institutions. Most would tell you they live ‘in the community’ not ‘in the home.’ Unfortunately, Medicare hasn’t made that leap. They still evaluate need based on in the home, not in the office, the mall, the grocery store or the park. What folks with disabilities need to be independent extends way past the home!

Unfortunately, Medicare hasn’t gotten the picture, and many other providers follow Medicare’s rules. We have great assistive technology available, but many folks cannot access it. This is not a new problem, but it is becoming a huge problem. Many advocacy groups are working to get this changed, but they need help.

What can you do? You can contact your Senator or Congressman and let them know you live in the community, not just ‘the home.’ You need assistive technology to help you be independent in the world, not just your house! Work with your medical equipment providers to get the message to Medicare that your needs go beyond the home! Advocate for your needs before we go back in history and people with disabilities end up back ‘in the home!’

With Thanks

Donations this quarter from:

Jimmy Ashley
Sandra Boger
Jane Darnell

In Memory of John Haskins
Robert and Beverly Doerflein
Ben Frank
Freda Hinerman
Bill and Janet Raymich
Jane Swope
Mary S. Wood

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 Arkansas Spinal Cord Commission at 501-296-1788 / 1-800-459-1517 (voice) / 501-296-1794 (TDD), or send your donation to:

Amid applause and cheers, Jani Watson drove her new van for a short ride around the neighborhood while friends and family enjoyed the sight. Jani could hardly believe it. Her friends and family had surprised her with a newly converted van that she could access with her wheelchair. Now, for the first time in seven years, she could taxi her two sons around town, go to the grocery store on her own and drive herself to attend college classes.

Putting Jani Watson back in the driver’s seat took the efforts of many people in the community. Funds for the van and its conversion came from a variety of sources: Joni and Friends, Little River Missionary Baptist Church at Lost Cane, First Baptist Church of Russellville, Arkansas Rehabilitation Services, Arkansas Spinal Cord Commission, a discount from a local car dealer and donations from Jani’s family and friends. Presidential Conversions of Jonesboro tied everything together and did the van conversion work.

Community of Jonesboro and others–give yourself a pat on the back, you deserve it.

The 2007 Achieving Your Dreams conference on June 15, 2007, was a wonderful success! The conference was well attended by approximately 220 individuals who began the day with Mr. Glenn McIntyre, who spoke on Always, There is a Way. Marilyn Hamilton of Sunrise Medical followed with her discussion of Change is Inevitable—Direction is Choice.

The halls of the 4-H Center were lined with vendors who had the latest equipment and lots of helpful information. Attendees were privileged to have several special demonstrations—the biggest hit of the day was the Rollin’ Razorbacks.

Nine special sessions filled the afternoon, including overviews of bowel and bladder care, disaster preparedness, treating tethered cord and syringomyelia, and other helpful topics. “This information is so vital for many of our clients and their family members, plus health care professionals,” stated one ASCC Case Manager. “I’m glad the agency and sponsors see the importance of sharing and socializing for persons with spinal cord disabilities.”

The conference closed with the drawing numerous door prizes. The grand prize, a new Quickie manual wheelchair donated by Sunrise Medical, went to Joseph Hogue of El Dorado, Arkansas.

Haleybeth Davis has a wonderful new pony named Chocolate Dream! She was given Chocolate Dream by Ponies with a Purpose, Inc. This group places trained ponies and horses with children with disabilities and their families.

Haleybeth is now receiving hippotherapy on her new pony and loving it! Her therapist, Dana Warren, will be opening a clinic later this summer. For more information regarding hippotherapy, call Recovery Zone Pediatric Therapies at 501-968-1198.

More information on how to get your very own pony or horse contact: Kim Harvel, Ponies With A Purpose, Inc., P.O. Box 6091, Cabot, AR 72806, 501-944-9897 or 501-676-9380.
They also have a website at: www.angelfire.com/ar3/ponieswithpurposeinc/.

Summer and heat go together, at least in Arkansas. This is a potentially dangerous time for anyone with a spinal cord injury (SCI). Impairment of temperature regulation is a recognized problem in SCI. What makes it worse is that, if you have SCI, you may not be aware of the problem until it is too late. This makes it essential that you take precautionary and preventive measures to avoid becoming overheated and having a heat stroke.

Body temperature is maintained by a balance between heat production and heat loss. Sensation of hot and cold is located peripherally in the skin and centrally in the brain.

A person with a complete SCI and tetraplegia has the most impairment in temperature control and thus the highest risk of overheating. The big problem is that an individual with SCI does not sense the heat and cannot get rid of heat like the able-bodied individual. The skin is unable to feel the sensation of heat; the body’s circulatory system is not able to dilate the blood vessels of the skin; and sweating below the level of the SCI is severely impaired.

The most important mechanisms of heat loss are dilation of peripheral blood vessels, sweating and behavioral changes (moving to a cooler environment, changing body position, changing amount of clothing). Therefore, if you were in a hot environment you may be unable to sense the heat until the central core temperature had risen significantly. By the time you start feeling hot it may be too late to cool off, or your first signs might be symptoms of heat stroke.

Symptoms of heat stroke range from: headache, increased respiration rate, dizziness, and confusion to loss of consciousness. Complications include: breakdown of the muscle tissue, electrolyte disturbances, acute renal failure and possibly death.

If you or somebody you know experiences this problem, medical attention should be sought promptly. Heat stroke is a medical emergency. Until help arrives, attempt to cool the person off as much as possible. Place the person in an air-conditioned environment, remove excessive clothing, use spray bottles of water to cool the skin, and massage the skin above the level of the SCI to stimulate peripheral dilation of blood vessels.

To prevent you from having trouble with heat this summer, please follow these simple measures.

Rozene Whitby and Russell Patton III were two of ten individuals honored at The Triumph of the Human Spirit held March 5, 2007 in Jonesboro, Arkansas.

Both Rozene and Russell have lived with spinal cord injuries for over thirty years. Russell went on to complete college with degrees in banking and finance and accounting to become a certified public accountant. Rozene worked around her obstacles to give her children a normal life. Later, she survived breast cancer and went on to get her college degree. Rozene is now a tax preparer.

The event was sponsored by HopeCircle, a program of the NEA Clinic Charitable Foundation and The Jonesboro Sun.

Over 3,000 bills were presented during the 2007 legislative session. One of the most important to people with disabilities is Act 753 (HB 2249) – “To Revise and Modernize the Access to Parking for Persons with Disabilities Act and to Ensure that Beginning Drivers are Given Information and Tested on Parking for Persons with a Disability.” Representative Sandra Prater of Jacksonville sponsored the bill.

After a fairly rocky start, with numerous advocates for people with disabilities testifying against various objectionable provisions of HB2249, a compromise was reached with Representative Prater, who agreed to amend the bill to address the concerns of those who opposed it. The bill passed both the House and Senate with the amendments and was signed by Governor Beebe on April 2, 2007.

According to the Disability Rights Center May 2007 DRC Newsletter, the following are the important aspects of the new law:

• The Department of Finance and Administration (DFA) shall produce a photo ID card containing a color photograph of the person with a disability who is either applying for a special person-with-a-disability certificate (placard) or the special license plate or being transported by the vehicle for which the special license plate is issued. The photo ID card is to be carried on the person for verification of identity.

• The photo ID is only required to be issued to applicants for special license plates who do not have a valid Arkansas driver’s license or ID card. A person who holds a valid driver’s license or state ID card may choose to have an endorsement on his/her driver’s license or ID card (in lieu of the photo ID card) that authorizes parking in areas designated as parking for a person with a disability. If a driver’s license endorsement or ID card endorsement is chosen, then the issuance and expiration of the driver’s license shall correspond with the expiration date of the special person-with-a-disability certificate issued.

• The Office of Motor Vehicles shall not charge an additional fee for adding the endorsement on a currently issued driver’s license or ID card.

• Any person who applies for and does not currently have a driver’s license or ID card and requests the endorsement will pay only the fee required under current law for the issuance of a driver’s license or ID card and will not pay an additional fee for the endorsement.

• A person who is a resident of a facility that provides long-term medical care or personal care (a licensed nursing home, a licensed residential care facility, or a licensed assisted living facility) is not required to obtain a photo ID card but instead shall carry documentation from the administrator of the facility attesting that the person is a resident.

• An owner of a motor vehicle that is issued a special license plate shall submit every four years to the Office of Motor Vehicles a physician recertification of the person with a disability to be transported by the vehicle to continue to qualify for the special license plate, unless the person with a disability has a permanent disability.

• Permanent disability means a medically determined condition that is continuous without the possibility of improvement and that substantially impacts a person’s mobility. “Permanent disability” includes a spinal cord injury, a genetic ambulatory disorder, an amputation, spina bifida, multiple sclerosis, chronic heart disease; or any other medically determined permanent condition that substantially impacts a person’s mobility.

• The requirement of a photo ID card and physician recertification shall not apply to an applicant in the business of transporting persons with a disability.

• A parking space reserved for a person with a disability that is designated as “van accessible” shall be used exclusively by vehicles that load or unload a wheelchair, a three or four-wheeled scooter, or a similar device that is commonly used to transport persons who have limited or no use of their legs; unless the parking lot or parking facility has only one parking space reserved for a person with a disability.

• Any of the following designations that are displayed on each parking space for persons with disabilities and visible to the driver’s eye level shall be enforced and are regulatory in nature: A sign that displays the blue and white international symbol of access, accompanied by one (1) or more of the phrases: “Disabled Parking;” “Van Accessible;” “Handicapped Parking;” “Reserved for Handicapped;” “Reserved Parking” with the blue and white international symbol of access; or “Permit Required—Towing Enforced;” or a sign that is compliant with R7-8, R7-8a, or R7-8b of the Manual on Uniform Traffic Control Devices promulgated by the Federal Highway Administration of the United States Department of Transportation.

• Corresponding pavement markings of the blue and white international symbol of access are preferred but not required for enforcement.

• The Arkansas driver’s license test shall include written questions concerning accessible parking for a person with a disability; and penalties for the unauthorized use of designated parking spaces.

• The driver’s instruction manual issued by the Arkansas State Police shall include information related to accessible parking for a person with a disability, including without limitation: (1) The importance of accessible parking for a person with a disability. (2) The penalties for the unauthorized use of parking designated for the exclusive use of a person with a disability. (3) The Arkansas State Police may coordinate with the Arkansas Governor’s Commission on People with Disabilities in developing information to include in the manual.

• After receiving approval of materials from the Commissioner of Education and the Director of the Division of Health of the Department of Health and Human Services, the Arkansas Governor’s Commission on People with Disabilities may provide educational and instructional materials regarding accessible parking for persons with disabilities to school districts for use in the classroom.

• Driver education courses and high school health classes shall include information or instructional materials regarding accessibility issues for persons with disabilities. Inclusion of educational information or instructional materials is mandated beginning with the 2008 - 2009 school fiscal year.

While lack of enforcement will continue to be a problem in the misuse of accessible parking spaces, these new laws will prevent the issuance of placards and plates to those who do not have disabilities and will provide education for new drivers.

ASCC thanks Representative Sandra Prater for her work on this important legislation.

Gaylon began his duties in January 2006 and provides services to clients living in parts of Pulaski and Saline counties.

A graduate of the University of Arkansas at Pine Bluff, he majored in Rehabilitation Science and completed an internship with Arkansas Rehabilitation Services. His previous position as a Waiver Supervisor, working with people with physical disabilities, and his knowledge of Pulaski County community resources has served him well at ASCC.

“Gaylon is doing an excellent job. He has a strong background in advocating for individuals with disabilities and is relentless when it comes to finding resources for his clients,” stated Client Services Administrator Patti Rogers.

Gaylon recognizes that you have to be willing to accept people for who they are and what they aspire to be. Gaylon best sums this up by saying, “ You can’t judge a book by its cover because the cover doesn’t tell you the story!”

Gaylon calls himself a “gym rat” and loves to play basketball. He recently displayed his talents as a player for Team ASCC competing in a charity wheelchair basketball tournament at Arkansas Tech University in Russellville.

PROFILE:

Date And Place Of Birth: September 8, 1971, in Little Rock, Arkansas.

Family Members: My wife, LaShaun, and my two-year-old son, Jaylon.

If I Did Not Live In Eureka Springs, I Would Want To Be: In Texas or California.

I Absolutely Will Not Eat: Anything that looks or smells bad.

One Thing People Would Find Surprising About Me Is: How much I eat—I’m hungry right now!

My Favorite Movie Is: Rush Hour 1, Rush Hour 2 and possibly Rush Hour 3.

My Favorite Song Is: Do for Love.

The Last Book I Read Was: The Purpose Driven Life by Rick Warren.

I Am Most Comfortable With People Who: Have good common sense.

My Favorite Pastimes Are: Watching movies, playing basketball and hanging out with family and friends.

The Best Advice I Ever Received Was: “You can’t do it all in one day.”

My Favorite Saying Is: “Look toward the hills which cometh my help; my help cometh from the Lord!”

I Knew I Was Grown Up When: I had bills in my name.

The One Thing I Always Wanted To Do But Have Never Had The Chance Was: Beat up my third grade bully (I’m still looking for you!) or visit another country.

One Word To Sum Me Up: Observant.

New Jonesboro
Caregiver Support Group

Are you a caregiver for a person with a spinal cord disability? Could you benefit from some care and support for yourself?

If so, you’re invited to attend a new caregiver support group now being formed for Northeast Arkansas. This group is specifically for caregivers, family or not, of persons with a spinal cord disability. Learn new solutions to the unique and challenging problems that you face on a daily basis. Share common experiences and draw on each other for support and encouragement. The success of this group is dependent upon the attendance and participation of its members. Take care of yourself by attending this support group.

Meetings are held on the fourth Tuesday of each month at 7:00 p.m. at the HealthSouth Rehabilitation Hospital in Jonesboro. For additional information please contact ASCC Case Manager Russell Henry at 870-268-0425, or email: rhenry@arspinalcord.org.

The Squeaky Wheel

The squeaky wheel . . . gets the grease! This column is about grease—things that make life for persons with spinal cord disability go smoother and ease your way in the world. “Things” can be hints, equipment adaptations, innovations, tricks-of-the trade, procedural shortcuts, life experiences, or things you “should have done but didn’t.”

Eddie Still of Hot Springs, Arkansas suggests a way to keep the summer fun going. Here is his advice:

We invite you to send in your helpful hint—your bit of “grease.” Contact your ASCC Case Manager, write us at Spinal Courier, Arkansas Spinal Cord Commission, 1501 N. University, Suite 400, Little Rock, AR 72207 or e-mail us at courier@arspinalcord.org and make the subject line read “Attention: Squeaky Wheel.”

Commission Members: Joe McNiel, Chair, Jimmy Ashley, Sandra Turner, Jon Wilkerson and John Wyrick

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.spinalcord.ar.gov or e-mail us at: courier@arspinalcord.org