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Vol. 12 No. 2 |
January 2001 |
www.state.ar.us/ascc |
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New Commission Member
Welcome! Joe McNiel, ASCC's new commission member from Hope, AR Governor Mike Huckabee appointed Joe McNiel to the Arkansas Spinal Cord Commission (ASCC) on September 29, 2000. Joe has lived with a spinal cord injury since June of 1986 when a mobile home he was working on fell on him. He and his wife Linda and their children live in the Spring Hill community outside Hope, Arkansas where Joe raises cattle and works as a personal trainer. A well known wheelchair athlete over the past decade, before his recent retirement, Joe was a regular participant in wheelchair road races and marathons around the state and the nation. Joe brings a unique experience to the Commission and has already become an active member. He replaces Deanna VanHook, who recently moved out of state, to fulfill a term through January 2009. Disability Rights Center Advocates for YouThe Disability Rights Center (DRC) is a federally mandated protection and advocacy system that serves people with disabilities in the state of Arkansas. Its mission is to protect the human, civil and legal rights of individuals with disabilities. It is a DRC policy to assure confidentiality of client information and to respond to client complaints. Some of the programs provided include CAP, PAIR and PAAT. What is CAP?Client Assistance Programs provide assistance in informing and advising all clients and client applicants of all available benefits under the Rehabilitation Act, and, upon request of such clients or client applicants, to assist and advocate for such clients or applicants in their relationships with projects, programs and services provided under the Act, including assistance and advocacy in pursuing legal, administrative or other appropriate remedies to ensure the protection of the rights of such individuals and to facilitate access to the services funded under the Act through individual and systemic advocacy. The client assistance program provides information on the available services and benefits under the Act and Title I of the Americans with Disabilities Act of 1990 to individuals with disabilities in the State, especially with regard to individuals with disabilities who have traditionally been unserved or underserved by vocational rehabilitation programs. Federal Mandate - (CAP) Rehabilitation Act - (P.L. 105-220), 29 U.S.C. 732. Funded through U.S. Dept. Of Ed., Rehabilitation Services Administration. What is PAIR?Protection and Advocacy of Individual Rights (PAIR) has as its purpose to support a system in each State to protect the legal and human rights of individuals with disabilities who: (A) need services that are beyond the scope of services authorized to be provided by the Client Assistance Program; and (B) (i) are ineligible for protection and advocacy programs under Part C of the Developmental Disabilities Assistance and Bill of Rights Act (42 U.S.C. 6041 et seq.) because the individuals do not have a developmental disability as defined in section 102 of such Act (42 U.S.C. 6002); and (ii) are ineligible for services under the Protection and Advocacy for Mentally Ill Individuals Act of 1986 (42 U.S.C. 10801 et seq.) because the individuals are not individuals with mental illness as defined in section 102 of such Act (42 U.S.C. 10802). Federal Mandate - PAIR is authorized in the federal law Rehabilitation Act - (P.L. 105-220), 29 U.S.C. Sec. 794e. Funded by U.S. Dept. Of Ed., Rehabilitation Services Administration. What is PAAT?Protection and Advocacy for Assistive Technology (PAAT) is provided under the Assistive Technology Act. The purpose of the Act is to provide financial assistance to States to undertake activities that assist each State in maintaining and strengthening a permanent comprehensive statewide program of technology-related assistance, for individuals with disabilities of all ages; and, to identify Federal policies that facilitate payment for assistive technology devices and assistive technology services; to identify those Federal policies that impede such payment; and to eliminate inappropriate barriers to such payment. Federal Mandate - (PAAT) Assistive Technology Act - (P.L. 105-394), 29 U.S.C. Sec. 3001 et seq. Funded by the U.S. Dept of Education, National Institute of Disability and Rehabilitation Research. The
Disability Rights Center is located at 1100 N. University, Suite 201,
Little Rock, AR 72207-6344. For more information, call
501-296-1775 (V/TTY), 800-482-1174
(V/TTY) or 501-2961779(FAX). Their
e-mail address is: panda@arkdisabilityrights.org.
Check out the DRC website at www.arkdisabilityrights.org.
Reprinted
with permision from Disability Rights Center General Information.
Web SitesDear Editor: I’m wondering if any of the Spinal Courier readers have found particularly informative or helpful web sites. Topics I would like to learn more about include: quality of life issues, accessibility, durable medical equipment, etc. Many of my clients now have computers with internet access and are increasing their potential knowledge base, which could be useful information for one and all. Robert
Griffin Editor’s Note: Readers please see the related article, “Life on the Internet,” found in this issue on pages 6 and 7.
From
the Director
As you read this we have begun a new year (maybe a new millennium, depending how you count years). How ever you count the years, I hope 2001 brings you great joy! These days it is sometimes difficult to stop and enjoy our activities and accomplishments. We seem to move from one thing to another, never stopping to bask in the glow of what we have done or to give due to those who have helped us do it! So this year I want to startoff right by saying thank you to those of you who have been of such great help to the Commission and to me. So often, over the past several years, we have asked many of you for your help in completing our research projects. These projects are important to the Commission and our mission, as they provide us with information and knowledge about life with spinal cord disability in Arkansas. We use the information in our attempts to obtain and maintain our funding, as well as in developing our programs. We could not do it without you! Thank you to each of you who have filled out a survey, answered a phone interview, attended a focus group or a clinic when we asked you. We appreciate your help and your commitment to making life better for others with spinal cord disabilities. Thanks, too, to all the health care professionals, family members and friends who have taken time to share your expertise with us. Your help and experience are invaluable to our mission. And finally, I want to say thank you to the staff of the Spinal Cord Commission, who for 25 years have been committed to making sure that folks with spinal cord disabilities in our state get the services they need. I’m proud to work with such a dedicated group of people! A new year must be good, when you start it off by being thankful!
With Thanks Donations this quarter from: Tommy
Miller In
Memory of Martha Henderson: In
Memory of Ella Garner: 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 Kruegger’s
On Board
ASCC client Jimmie Richardson of West Memphis, AR would like everyone to welcome Kruegger, the newest member of his family. Kruegger is a two-year-old Labrador Retriever mix service dog acquired from Canine Companions for Independence (CCI). CCI is a nonprofit organization that betters the lives of people with disabilities by providing highly trained assistance dogs and ongoing support to ensure quality partnerships. According to Jimmie, Kruegger is the best service dog in the world. Kruegger has a large range of skills that help in Jimmie’s daily activities. Not only does Kruegger retrieve items for Jimmie, he has been trained to handle financial exchanges from high counter tops to Jimmie’s chair height. Both Jimmie and Kruegger had to undergo intense and rigid standards to make sure that they were compatible to each other’s personalities. There was also intense course work and then a certification test to use the canine companion in public. So far, Jimmie has taken Kruegger from stores such as WalMart to his college classrooms. “On each outing Kruegger has performed admirably,” remarked Jimmie. Unfortunately, the waiting list is extremely long for a canine companion and restrictions do apply. Jimmie had nearly a three-year wait for a spot in the program. “Still,” said Jimmie, “in the end it has all been worth it.” Join us in wishing Jimmie and Kruegger well in their many adventures! For more information, please contact the CCI National Headquarters, 2965 Dutton Avenue, PO Box 446, Santa Rosa, CA 95402-0446, 707-577-1770 (voice), 707-577-1756 (TTD), 707-577-1711 (FAX) or info@caninecompanions.org (e-mail).
Tips for Healthy Living: Pain Pain is a major issue for many individuals with SCI. Those with pain can fall into a repeating cycle of pushing themselves until the pain becomes severe enough that they must rest. This cycle often results in negative consequences like periods of increased pain and fatigue, anticipating pain, increased tension, worry/anxiety, a decrease in the ability to do daily activities and a tendency to totally avoid daily activities. Pacing of activities is a method that may help to manage everyday pain and improve quality of life.
This
activity/rest cycle is not a cure for pain. It is a simple method that
has been shown to improve the quality of life for many individuals with
SCI. Pacing of activity should work for you if you stick to it. But it
is important to always talk to your doctor before you try any new treatment.
This article was reprinted with permission from Pushin’ On, August 2000, page 4. Copies of this article are available from Pushin’ On, Research Services, UAB Spain Rehabilitation Center, 619 19th Street South - SRC 529, Birmingham, AL 35349-7330.
Do
Yourself a Favor - Exercise!
The benefits of exercise are widely known—it decreases the risk of heart disease, obesity and hypertension, plus makes us feel better. If it could be prescribed in pill form, I would have almost all my patients on exercise (and I would be taking it myself!). It is especially important to think about exercise as we celebrate the holidays, so we can avoid the problems associated with being around too much good food-weight gain. To keep from gaining weight we have two choices: eat less and/or burn more calories by exercising. The body is an efficient machine and when we eat less it decreases the rate at which calories are burned. So to increase the rate at which the body burns calories, we need to exercise. This is not an easy task when you have a spinal cord injury with either paraplegia or tetraplegia. You can exercise by just increasing your routine daily physical activity. Use your manual wheelchair to exercise, choose to dress yourself even if it takes more time or choose to transfer yourself even though it is faster if someone else does it for you. This has the double benefit of increasing your independence and decreasing the work load on your care giver. It also improves your strength and endurance, and helps you burn more calories and, if combined with decreased food intake, possibly helps you to lose weight. If your choice is a more aggressive form of exercise, you must consider any cardiac risk factors you may have that increase your risk of a heart attack. You are at increased cardiac risk if:
If you have more than two of these risk factors you may want to discuss your proposed exercise program with your physician and undergo an exercise test with an arm exercise machine while having your heart monitored with an EKG. Here are some exercise ideas to consider as you ponder whether you can start an exercise program for yourself:
Your goal will be to achieve 50 to 80% of peak heart rate (as determined by a stress test or, in a normal young adult, use the formula: 220 minus your age) for a duration of 20-30 minutes. You may need an abdominal binder and leg wraps to maintain a good blood pressure level. It is also important to protect your shoulder and upper extremity joints to prevent overuse syndrome and accelerating the development of arthritis. If your exercises cause you to have joint pain, review your exercise program with your therapist or physician. So,
do yourself a favor and get some exercise! Incentives to Get You Working
Here is an example of this incentive. You take a job earning $1000 per month. You work for three months but leave the job because you cannot do the work. However, your monthly benefits continue while you work and after you leave. A year later, you find a job that you can do. You work for another six months and earn $1000 per month, still without losing any benefits. Now you have worked a trial period of a total of nine months over a two year period while getting regular Social Security and Medicare benefits. If you continue to work, you will be eval-uated by SSA to see if your gross earnings are considered substantial. Help
With Other Work Expenses Here is an example. Your trial work period is over. Your gross monthly income is $1000 per month. You pay $400 per month for a PCA. The cost for your PCA can be subtracted from your gross earnings. Your adjusted, or counted, earnings are only $600 per month, which is below the substantial earnings amount of $700. This means you keep regular monthly benefits for at least 36 months, as long as your counted earnings are less than $700 per month. You will lose your Social Security check if your counted earnings are $700 or more. But you can receive a check for any month that your counted earnings drop below $700 per month if it occurs within 36 months after the nine-month trial period ends.
Some individuals with very little income may qualify to have their state pay the Medicare fee, deduct-ibles, coinsurance cases and other “out-of-pocket” expenses. Check with your local Social Security office to see if you qualify. Leaving
Your Job
Another incentive started on January 1, 2001. For five years after both the trial work period and the 36 months, you will get six months of benefits while your claim is being processed. These payments will not have to be paid back if you no longer qualify for benefits. These
incentives can change. Call your local Social Security office with questions
about benefits. The SSA is working to improve the way individuals with
disabilities get answers to questions about benefits. An Employment Support
Representative will be available after January 1, 2001, to provide more
consistent, accurate infor-mation about Social Security and Supplemental
Security Income (SSI) benefits.
This article was reprinted with permission from Pushin’ On, August 2000, page 5. Copies of this article are available from Pushin’ On, Research Services, UAB Spain Rehabilitation Center, 619 19th Street South - SRC 529, Birming-ham, AL 35249-7330. Life on the Internet
Some
e-mails are easy to dispose of—like those with a subject line about making
money at home, easy weight loss or investment opportunities from people
I don’t know. I really trash them fast (without opening them) if they
have an attachment! • Computer viruses, myths and hoaxes can be checked out at www.Vmyths.com. • So called urban myths or legends can be uncloaked at www.Snopes2.com. This site is run by the San Fernando Valley Folklore Society and can give you the straight poop on thousands of rumors, schemes and stories. • Alternative medicines, herbs and the misuse of prescription medication can be investigated at www.Quackwatch.com. This nonprofit corporation combats health-related frauds, myths, fads and fallacies. Spinal
Cord Disability Sites • National Spinal Cord Injury Association at www. spinalcord.org • Spina Bifida Association of America at www.sbaa.org •
National Multiple Sclerosis Society at www.nmss.org
Reach
Out and Touch Someone
According to a survey conducted by the Harris Poll for the National Organization on Disability and sponsored by Aetna U.S. Healthcare, forty-eight percent of people with disabilities say the Internet has significantly improved the quality of their life compared with 27 percent of persons without disabilities. Computer users with disabilities reported spending nearly twice as many hours online and using e-mail as nondisabled users. (From AXIS Newsletter, Fall 2000). So, if you’re not online yet maybe you should consider it. Where
Have You Been? PS:
Just for Fun
Better, Not Bitter
Jeff Watts says, "Just don't quit!" There is a saying: “The more things change, the more they remain the same.” In some ways, this could be applied to the outlook and activities of Jeff Watts. In January 1999, Jeff was working anywhere from 40 to 60 hours per week on the night shift as a Maintenance Technician. The main responsibility of a Maintenance Technician is to figure out how to make things work right when they go wrong. Jeff would leave work, arrive home early in the morning and help get his kids off to school and his wife off to work. On weekends he worked on farming activities. While doing some farm work in July 1999, a 1000-pound round bale of hay slipped off a tractor spear and onto Jeff. He sustained a T-12 fracture. He went to Craig Rehabilitation in Colorado and continues now with rehabilitation therapy at Baptist Rehabilitation Institute and at a clinic in Benton. Jeff sums up his perspective on life in very simple terms. “God has given me a talent of figuring out how to do things. God has me here to be better or bitter. Since this injury didn’t kill me, I know I have been chosen to do some-thing better.” Jeff credits countless friends and well-wishers who lifted him up. “The walls in my room at Craig were literally covered with cards and letters from so many people. My wife has been by my side and my two children have been constantly involved.” It has been just over a year since the injury and Jeff is very realistic about his future. “My long range goal is to return to work full-time. However, therapy is my most important task right now. I have plenty to live for. I have two wonderful kids, a wonderful wife, a supportive employer, more friends that I could imagine and a strong belief that God has a plan for me.” Jeff is a living demonstration of his beliefs. He has been called upon to talk with other newly injured patients. He provides words from someone who has been there. “I let them know that what they are facing is nothing easy. I tell them, ‘Just don’t quit!’ Anyone can be a quitter. There is a purpose for all of us to be here.” New Videos and Books in the Resource CenterThe 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. Some of the new additions include:
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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It
is easier than ever for individuals with disabilities to work. The Social
Security Administration (SSA) is now offering improved incentives
to get you working.
Medicare
While You Work
“You’ve
Got Mail!” Ah, such sweet words. There’s nothing like e-mail in your computer’s
mailbox to warm the cockles of your heart. But lately it’s getting harder
and more time-consuming to deal with all the junk e-mail or so called
“spam.” 