Letters: May 2013

Boot Camp Needed
Thank you for the article about current clinical trials for SCI! This really is an exciting time for all of us. Having an SCI myself for the last 24 years, I’ve experienced the highs and lows and have seen the promises come and go. But being in the thick of research as well, I know we are slowly but surely moving forward to identifying successful future treatments. On the chronic side, it’s important to highlight studies like our “boot camp” and other studies around the country focusing on exercise and rehabilitation.  We need healthy, strong individuals for future clinical trials targeting chronic injury. So participation in these boot camp studies is critical to pave the way for all of us and for those who will come behind us. Please continue keeping us all educated on all aspects of SCI!
Kim Anderson-Erisman,
Director of Education
The Miami Project

Elephant in Room
All too often, family dysfunction when there is a disabled member is like an elephant in the room or hidden under the carpet [“All in the Family: Dealing With Dysfunction,” March 2013]. I applaud you for bringing this to the forefront. Acceptance of a disability is crucial to feeling like a member of society, and when someone is surrounded by parents, siblings, spouse or friends who cannot quite come to terms with the disability, it is harder to find that acceptance. The article was well written, especially with the heart-felt case studies.
Mary Parks
McFarland, Wisconsin

Unhappy
My experience with the Scooter Store was not very pleasant [“Scooter Store Headquarters Raided by Federal Agents,” April News]. I have a three-wheel scooter, a manual wheelchair, and a four-wheel scooter, a Pride Wrangler. All these were paid for by me. I bought all three without any help from anyone. My doctor signed for all three. When I would contact the store, they always wanted to sell me something else, upgrade to the next model up, which I would have to pay for. The Pride Wrangler was different. I knew that Medicare would not cover anything that I could not use in the house. So their plan was for me was to take the chair upgrade and sell it, then buy the Wrangler. I didn’t, maybe I am just plain stupid. After an order goes through, they worry the dickens out of you to upgrade, and make promises they could not keep. I have thought they were a rip-off after dealing with them.
Eddie Parker
Frankfort, Kentucky

We Need an Answer
Consumer directed services are covered by Medicaid. Residential care facilities [such as those that provide assisted living] are not skilled nursing facilities, so the Olmstead Act/Money Follows the Person does not apply [News Analysis: “The Obama Administration and Community Choice,” March 2013]. That brings me to the point. Many people without good insurance, SSI, or SSDI are left in an institutional system, are homeless, in jail, or with a family if they are not estranged from their relatives. If you find the answer, please share with your subscribers and associated agencies.
Chris Brandsberg
Warrensburg, Missouri

More Image Problems
Everybody is talking about the March 22 NPR segment of This American Life, on disabilities — “Unfit for Work.” The findings are startling: The number of people on disability is skyrocketing, even as work becomes increasingly less physical, and sit-down tasks dominate, either in the intellectual domains or in the vastly expanding service sector. Yet despite that reality, there are 14 million people getting monthly checks from the federal government. This program now costs national taxpayers as much as welfare and food stamps combined. Are there that many sick people in America? A powerful study, too bad it’s so badly flawed. The most important factor it failed to take into account is education: States with low rates of high-school completion generally have high rates of disability insurance. Another is age — the percentage of folks on disability goes way up as we get older; areas like New England and Appalachia have much higher rates than the Southwest. The proportion of immigrants in an area also affects the rate of disability, as does the number of industrial jobs in the local economy. All these factors were left out of the NPR report. Worst of all, there was no effort to contact anyone for an alternative viewpoint, a basic of journalism.

There are a lot of dangers here for our community. Look at how the term “welfare” got distorted, especially during the Reagan years, so that the widely accepted meaning was “a program for lazy deadbeats that the rest of us pay for.” That makes it infinitely harder to defend appropriations. Popular culture, popular definitions count.

Right now the term disability is still seen as denoting a legitimate community. But both the National Review and breitbart.com praised the NPR report as exposing another vast collection of rip-off artists. If they carry the day, we and our community are in very deep trouble indeed.
Robert Slayton
Chapman University, California

Check out FuelCall
I just read Alan Troop’s Motorvation column about life on the road [“Roadtripping Made Easier,” February 2013]. I was surprised that life on the road didn’t include getting gas and what a struggle it is for many people.

Fuelcall.net (www.fuelcall.net) is a great resource for motorists with disabilities so that they will know which gas stations will pump their gas. I just got a call from someone who found our system while on a road trip in Port Huron, Michigan, and he said it was like being in the desert and finding a glass of water when he came across our FuelCall system.

I realize that we don’t have critical mass on our site (500 gas stations), but with more support from the disability community pushing it, it can only help drive the need.
Patrick Hughes, Jr.
Founder/CEO

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