Breakdown

 Disability, Personal  No Responses »
Oct 012012
 

Over the weekend, my wheelchair stopped working during a walk across the Stone Arch Bridge. The power toggle switch had been glitchy last week and I probably should have stayed home, but the gorgeous weather and a desire to see Looper compelled me to abandon caution to the wind. Fortunately, I was able to get a taxi ride home. My equipment vendor is now working on finding a replacement part for my aging wheelchair.

These assorted tech failures are beginning to wear a little thin. As I’ve noted previously, wheelchair malfunctions are particularly frustrating because they leave me housebound until they can be fixed. It may be time to start the process of getting a new wheelchair approved before this one becomes the gimp equivalent of a rusted-out car resting on cement blocks on the front lawn.

The gremlins have avoided my computer, at least. But at this rate, I may have to start staying up nights with all the lights on to stand guard.

Abandoned In The Sunshine State

 Disability, Law  No Responses »
Sep 192012
 

The Justice Department is suing the state of Florida for dumping kids with disabilities into nursing homes. Many of these kids have complex medical needs, which most nursing homes are ill-equipped to handle. The article also notes that Florida has turned down federal funds to keep people out of nursing homes. Florida has also made deep cuts to Medicaid home care payments rates.

Florida’s neglect and warehousing of kids with disabilities is further evidence of the need for stronger federal Medicaid policy on providing care in community settings. Two decades after the passage of the Americans with Disabilities Act and more than a decade after the Supreme Court’s landmark Olmstead decision, people with disabilities continue to face the threat of institutionalization. If the nation is ever going to live up to the ideals of integration expressed in those documents, the DOJ better be prepared to file many more lawsuits like this one.

Thanks to Adam for the link.

Farewell, Faithful Servant

 Disability, Personal  3 Responses »
Sep 122012
 

After 25 years of using the same model of ventilator, I’ve completely switched to the newer and smaller Trilogy. It feels a bit different than what I’m used to, but I’m sure I’ll adapt soon enough. But I’ll always have a soft spot in my heart for the sturdy old LP-10. It accompanied me from early adolescence to middle age without failing me once. It even survived being dropped a few times. When I build my panic room to keep out the rampaging zombie hordes, I’ll stock it with a few LP-10s.

Smashing Success

 Disability  No Responses »
Sep 052012
 

Nicole Gelinas at City Journal compliments the British press for its in-depth coverage of the Paralympics while excoriating NBC for assuming that Americans aren’t interested in the event. It does seem that the London Paralympics are receiving great press from those media outlets bothering to cover them and the hometown crowd seems genuinely interested in the games. But I wonder if that’s a function of holding the Paralympics in a developed nation with a fairly vocal disability rights movement and laws enshrining accessibility and inclusion. I hope the Paralympics are as successful when they are held in Sochi and Rio, but I’m not sure it’s fair to expect those countries to pour the same resources into them that the U.K. clearly has.

Are We There Yet?

 Disability, Personal  No Responses »
Sep 042012
 

I am one spoiled cripple. I was reminded of this again today when I had to take the local paratransit service to and from work. What’s normally a twenty-minute commute in my own van became a sixty or ninety-minute journey into aggravation. I respect anyone who uses the service on a daily basis; it requires patience and fortitude. I’ll have my van back in a few days, but I get ulcers just thinking about having to depend on paratransit on a daily basis.

Like I said, spoiled cripple here.

Modding For Accessibility

 Disability, Tech  No Responses »
Aug 212012
 

I don’t have much time to post tonight, but I thought this video from the hacking-themed Ben Heck Show is interesting. It shows Ben trying to create a hands-free control for a wheelchair used by an expectant father with a disability. It’s a little technical, but still enjoyable:

Doesn’t Hurt To Ask

 Disability  No Responses »
Aug 152012
 

One of my nurses is heavily involved in her local 4-H chapter and recently began working with a child who has some type of neuromuscular disability. She wants to discuss the child’s disability with her parents in order to figure out how to better accommodate the kid in group activities, but she worries about offending the parents. I told her that I doubt the parents will mind answering a few questions, particularly if she prefaces them with her own experience working with people with similar disabilities. Parents of kids with disabilities put up with a good deal of clueless and insensitive behavior from the general public, but I haven’t known any who didn’t appreciate questions motivated by a desire to include their children. I’m guessing most parents in these circumstances would hope to receive such questions on a more regular basis.

Any thoughts on my advice?

Ending The Paralympics

 Disability  No Responses »
Aug 102012
 

Slate has a good article examining the pros and cons of merging the Olympics and Paralympics. Some worry that the able-bodied sporting events would completely obscure the events featuring athletes with disabilities, while others believe a merger would give such athletes more visibility. I’m in the latter camp. As it is, the Paralympics receive almost no media coverage (although it sounds like the London Paralympics will receive a fair amount of coverage in the U.K.). A merger might result in a measurable audience actually watching wheelchair rugby. And any televised Paralympic event is bound to be more compelling than yet another tediously bland Ryan Seacrest segment.

No Death Panels Here

 Disability, Health Care  No Responses »
Aug 012012
 

Andrew Sullivan points us to a blog post written by a young pro-life mom who moved to Canada and discovered that universal health care is not so scary after all. But she makes some curious statements about people with disabilities:

With Universal coverage, a mother pregnant unexpectedly would still have health care for her pregnancy and birth even if she was unemployed, had to quit her job, or lost her job. If she was informed that she had a special needs baby on the way, she could rest assured knowing in Canada her child’s health care needs would be covered. Whether your child needs therapy, medicines, a caregiver, a wheelchair, or repeated surgeries, it would be covered by the health care system. Here, you never heard of parents joining the army just so their child’s “pre-existing” health care needs could be covered. In fact, when a special needs person becomes an adult in Canada, they are eligible for a personal care assistant covered by the government. We saw far more developmentally or physically disabled persons out and about in Canada, than I ever see here in the USA. They would be getting their groceries at the store, doing their business at the bank, and even working job, all with their personal care assistant alongside them, encouraging them and helping them when they needed it.

Why, she could be talking about me! Except my nurses just give me quizzical looks whenever I ask them to write my policy papers for me.

I’m not sure where the author lives now, but I’m fairly certain people with disabilities live in her general vicinity, buying groceries and working jobs. And many of us receive Medicaid, which has that same great socialist flavor as Canada’s health care system. That’s not to say that life on medicaid is plush, but I’m willing to bet our Canadian brethren have similar gripes about finding quality assistants and jumping through the hoops of the pre-authorization process.

What say you, Canadian gimps? Are you better off than Yanks like me?

Youthful Voices

 Disability, Tech  No Responses »
Jul 262012
 

The NY Times looks at how more genuine-sounding children’s voices are now being included in communication software for kids with disabilities. While the technology still can’t reproduce the countless nuances of human vocalization, it’s still an improvement over the robotic monotone voices that used to be standard on most kids’ talkers. As research on neural computer interfaces advances, perhaps kids and adults with speech impairments will be able to speak with whatever voice they choose at a rate comparable to natural speech. But until that tech arrives, it’s good to see software developers giving some thought to the style as well as the substance of communication.

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