Heartless insurance denies needed device
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| Tue, 09-15-2009 - 1:37pm |
Sometimes people who aren't ill just don't understand. I know a few people, who are able bodied, ski, walk Disney on vacation, and love to march in bands or hike, however they need their handicapped parking. I sometimes don't understand their handicap, but fortunately their doctor and our glorious state does.
Today my failure to understand, to get it, was once again challenged. A New York Times sad story about a crippled woman who absolutely needs an iPhone as a medical device had me scratching my head. It turns out not only is the iPhone a medical device, but it MUST be covered by insurance. Failure to do so, limits the ill to only $8,000 devices.
It also turns out these poor unfortunates are often required to keep their old hardware for 5 years before a new one can be purchased under insurance. Can you imagine that, forcing someone to use a 5 year old iPhone ... how barbaric!
Yes, our health insurance companies currently don't respect the iPhone as the great medical device it really is. I'm certain that an iPhone with an unlimited calling plan will be just the trick for many millions, perhaps tens of millions, who suddenly discover this need.
I also thought our government was more enlightened, and compassionate, than the private sector. Sadly, Medicare denies this necessary equipment. People are always posting about how much better government run insurance is. Why isn't Medicare in the lead ... providing everyone with a doctors script a free iPhone?
Imagine 60 million seniors, all with handicapped parking permits, rolling around with free Medicare provided iPhones and unlimited calling plans. Wouldn't we be be proud as a nation to have such great insurance?
You know, I suddenly feel grocery shopping causes me emotional distress. It isn't just the shopping, but also the bill, the driving, the gas. Can't insurance cover this for me, to help reduce my emotional stress. I'll also need an iPhone, ohh and free internet! It is a must! I'm not certain of the basis for the medical need yet, but undoubtedly someone will enlighten me.
With needs like an iPhone, how are we going to keep costs down? If the application really helped, wouldn't an iPod do? Does she really need phone service tossed in?
Story at - http://www.nytimes.com/2009/09/15/technology/15speech.html?_r=1
SAN FRANCISCO — Kara Lynn has amyotrophic lateral sclerosis, or A.L.S., which has attacked the muscles around her mouth and throat, removing her ability to speak. A couple of years ago, she spent more than $8,000 to buy a computer, approved by Medicare, that turns typed words into speech that her family, friends and doctors can hear.
Under government insurance requirements, the maker of the PC, which ran ordinary Microsoft Windows software, had to block any nonspeech functions, like sending e-mail or browsing the Web.
Dismayed by the PC’s limitations and clunky design, Ms. Lynn turned to a $300 iPhone 3G from Apple running $150 text-to-speech software. Ms. Lynn, who is 48 and lives in Poughkeepsie, N.Y., said it worked better and let her “wear her voice” around her neck while snuggling with her 5-year-old son, Aiden, who has Down syndrome.
Medicare and private health insurers decline to cover cheap devices like iPhones and netbook PCs that can help the speech-impaired, despite their usefulness and lower cost.
Instead, public and private insurers insist that, if Ms. Lynn and others like her want insurance to pay, they must spend 10 to 20 times as much for dedicated, proprietary devices that can do far less.
The logic: Insurance is supposed to cover medical devices, and smartphones or PCs can be used for nonmedical purposes, like playing video games or Web browsing.
“We would not cover the iPhones and netbooks with speech-generating software capabilities because they are useful in the absence of an illness or injury,” said Peter Ashkenaz, a spokesman for the federal Centers for Medicare and Medicaid Services. Private insurers tend to follow the government’s lead in matters of coverage. Two years ago, iPhones and netbooks barely existed, so it may not be surprising that the industry has yet to consider their role as medical devices.
But the health care system has long had trouble keeping up with Moore’s Law, the principle that computing power rapidly increases even as costs fall sharply.
Doctors must still bring a patient into their offices instead of, say, inspecting an e-mailed photo of a rash if they want most insurers to pay for the consultation. Digitizing medical records is such a vast undertaking that the government is now spending billions of dollars to jump-start it.
In the case of A.L.S., also called Lou Gehrig’s disease, advocates spent years fighting to have any speech-specific devices covered by insurance, finally succeeding in 2001.
For the millions of Americans with A.L.S., Down syndrome, autism, strokes and other speech-impairing conditions, the insurance industry’s aversion to covering mainstream devices adds to the challenges they face. Advocates say using an everyday device to communicate can ease the stigma and fear of making the adjustment.
At the same time, current policies mean that the government and private insurers may be spending unnecessary dollars on specialty machines.
Dr. Stanley E. Harris, who helps set device coverage policies for Horizon Blue Cross Blue Shield of New Jersey, said that if enough patients requested new types of devices, the insurer would study their usefulness. “We’re looking for evidence-based data to support the effectiveness of whatever is being requested,” he said.
In the meantime, people with speech disabilities have a choice: pay for a cheaper product from their own pockets, try to borrow one from a private assistance group or spend their insurer’s money on a specialty device from a company like DynaVox Mayer-Johnson or Prentke Romich.
DynaVox, a leading maker of devices for the speech-impaired, has computers that start at $8,000 and run Windows, just like 90 percent of all PCs. To meet insurance rules, DynaVox disables the general computing tools. After the insurer pays, customers can pay $50 to DynaVox to reactivate the full functions.
The proprietary devices have some special qualities. They are sturdier than typical computers and have better speakers and links to support services.
But the prices may seem hard to justify based on components alone. One $5,000 DynaVox product is essentially the speech software bundled with a two-pound keyboard that has a six-inch screen. And the manufacturers mark up standard accessories by as much as 2,000 percent. Prentke Romich, for example, charges $250 for a Bluetooth wireless adapter similar to those that cost $20 in stores.
Jim Shea, vice president for marketing at DynaVox, says his company’s prices run high because it must do a lot of custom work and research to serve a niche that mainstream companies ignore. “We are not riding the wave of consumer electronics in terms of cost,” he said. “We’re building the devices here in Pittsburgh from scratch.”
In addition, the do-it-yourself approach isn’t for everybody, he said. “You have to be somewhat savvy, get the software and set it up,” he said.
Disease experts say companies like DynaVox and Prentke Romich make many sophisticated, helpful products. Still, advocates argue, advances in computing and easy-to use speech software have opened doors to use cheap mainstream alternatives. Indeed, the price drops have made it possible for A.L.S. assistance groups to buy dozens of netbooks, install specialized software like Proloquo2Go and lend them to clients.
Betsy Caporale, a speech language pathologist in Danville, Calif., has tested various devices and software with children who have Down syndrome and autism.
“The iPhone has been a runaway success with these kids,” she said. “It takes them about 10 minutes to learn how to use the iPhone, and there is this cool factor for them.”
Ms. Lynn, from Poughkeepsie, would like to see insurers loosen their rules to accommodate general-purpose devices and give people like her more financial flexibility. Since insurers will typically cover only one device every five years, people with degenerative conditions like A.L.S. often hold off any claims until their condition worsens, and they really need an expensive specialty product that can track their eye and head movements.
Perhaps the government could set a certain dollar limit and then let patients find the products that fit their needs, Ms. Lynn suggested. “I really would like to see Medicare do away with the dedicated-device rule and the one-device limit,” she said by e-mail.
But so far, government and private insurers are not swayed. “We look at determining the effectiveness of the technology — and not the cost — first,” Mr. Harris said.
For Ms. Lynn, the iPhone, with the special software, is cheaper, more effective and essential. “Technology has become as important to me as air, food, water,” she wrote.
Edited 9/15/2009 1:42 pm ET by postreply

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Possibly they are easier to get in the US, so I can't comment on that part.
I'm okay about them being issued for some other conditions that limit how far one can walk in terms of heart, pain, etc., but I understand what you are getting at.
My dd has a permit. We only use it if the parking is too tight to allow her to transfer into her chair without tinging the car beside us, or if there is too much snow to otherwise navigate okay.
What really gets my goat is when people use disabled parking spots (without a permit) for "just a few minutes", thinking that if they are only dashing into a store for a while it won't matter.
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That's exactly the sort of thing that I am okay about.
You probably need such a permit even more than my dd in terms of mobility (basically she needs it in order to get out of the car or over snow). That's one reason why we only use the spots when necessary, as they get filled fast here.
It's when some guy is using his grandmother's permit so he can get a prime spot on his way to work without her that annoys me (and I only know this if someone has been caught).
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You may not be seeing "prejudice".
Years ago when my children were much younger, I worked with a parent advocacy group to increase awareness of disabilities. Kids can be horribly cruel to those who aren't like them and the goal was to help them understand similarities and challenges; rather than focus on the obvious differences.
One of the speakers was a very patient and insightful man from a group which worked, if I recall correctly, with therapeutic horsemanship. He told me that we're programmed through evolution to feel repulsed by those with obvious physical deformities because proximity could mean contagion. Getting too close to a person with a disfiguring disease could mean contracting that disease and possibly dying.
Learning that helped me feel less guilty about the initial jolt which the sight of some might cause. Since survival depends on staying alive, the feeling can be very intense.
Jabberwocka
What abuse? ALS (aka Lou Gehrig's disease) is progressive. Some have compared the disease to being imprisoned. The mind is healthy but the body stops responding. From the OP link:
"Since insurers will typically cover only one device every five years, people with degenerative conditions like A.L.S. often hold off any claims until their condition worsens, and they really need an expensive specialty product that can track their eye and head movements."
Jabberwocka
That's a really interesting theory. Sometimes I feel a tiny bit uncomfortable at first in a store, for ex., when I realize that I'm by someone not elderly in a chair even though I'm by someone in a chair much of the time already and even if she's with me. It passes almost instantly but I wondered what the deal was about that lol.
As an aside, one of the most common questions I've been asked is how my dd came to have disabilities. Parents will visibly relax, have relief in their eyes, etc., when I confirm that it was congenital (ie. not something they have to worry may happen to their child via accident or illness, for ex.).
Also, as an aside, the fact that my dd is very pretty has been quite a boon in terms of how she's treated by strangers. People seem to have more trouble re: facial differences than some others.
While I'm rambling I'll add that a friend and I noticed the reaction to her daughter (severe developmental delays) were often different than those to my dd. People seemed to feel more anxious re: brain disorders, which makes sense given how vulnerable we are, and also more able or willing to relate to my dd who seemed more like them.
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