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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Did you read your own link?
The computer Kara Lynn had earlier was capable of synthesizing written words into voice but even if it was a laptop, lugging it around with a small child would be onerous.
The iPhone has "text-to-speech software" so she can communicate more readily with her five year old son who has Down's Syndrome and probably can't read written words from his mother. BTW, the iPhone wasn't even around five years ago. Also you may be unaware of Moore's Law:
"Moore's Law describes a long-term trend in the history of computing hardware, in which the number of transistors that can be placed inexpensively on an integrated circuit has doubled approximately every two years.. Rather than being a naturally-occurring "law" that cannot be controlled, however, Moore's Law is effectively a business practice that has seen the advancement of transistor counts occurring at a fixed rate.
The capabilities of many digital electronic devices are strongly linked to Moore's law: processing speed, memory capacity, sensors and even the number and size of pixels in digital cameras. All of these are improving at (roughly) exponential rates as well. This has dramatically increased the usefulness of digital electronics in nearly every segment of the world economy. Moore's law precisely describes a driving force of technological and social change in the late 20th and early 21st centuries. The trend has continued for more than half a century and is not expected to stop until 2015 or even later."
http://en.wikipedia.org/wiki/Moore%27s_law
If a person has significant special needs which can be addressed with technological devices, using one which is five years old could well be "barbaric". Got an idea. Why not write to Stephen Hawking and ask him?
Nobody is saying that the same specific adaptations or modifications can be justified for an entire demographic ("60 million seniors"). Exaggeration is unwarranted. Just as with an IEP, INDIVIDUAL disabilities mean INDIVIDUAL accommodations which should not be extrapolated as being either necessary or appropriate for all.
Before making negative comments about the disabilities or special needs of others, maybe try a walk in their shoes. Spend a day without being able to communicate verbally with anyone, even when you desperately want or need to. Might work wonders with that "failure to understand".
Jabberwocka
I'm a bit confused.
1) Are you volunteering to lug an $8,000 computer around behind her while she cares for her 5 year old who has DS so that she doesn't use a far cheaper and more effective means of communication, or is this a rant that assistive devices are provided at all to people with disabilities?
2) Do "all" of your seniors have handicapped parking permits now?
3) Do you honestly think that all of the seniors in the USA will fake losing their voices in order to get assistive technology?
4) As for your questions re: Medicare, I promised myself that I wouldn't ask anymore if you'd read your own OP, so... nevermind LOL.
Good grief.
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~Could you explain to me, why a mute needs a phone plan? Why an iPod touch wouldn't do?~
Just to clarify, the text-to-speech capacity used by those with speech disorders (from stroke, ALS, etc.) isn't actually installed right on the iphone or ipod.
Instead, a website and dedicated server w/voice synthesizer are accessed via the phone or ipod.
You go to the site, type in what you want to say, and touch a button on the page which then activates the speech.
Yes, an ipod will also suffice (now... I'm not sure about two years ago, though), the difference being that with the iphone you access the site via 3G cell phone network and with the ipod a wifi internet connection is required.
The iphone seems to me to be more practical in terms of out of the house, etc., which may be why the person in your OP opted for that. I gather that the extra gizmo she bought for her iphone isn't needed on the new ones.
Also, nobody has suggested that only the iphone should be used. In fact, in your OP, for ex., they mention netbooks.
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~If an iTouch has a text to speech option, that would be a great idea and...~
See my explanation above.
It's a good option if someone only needs to speak in areas where wifi internet service is available (ie. the iphone you can use in the 3G networks), as a website and dedicated server must be accessed in order for it to work.
I'm gathering with her son's disability there are appointments, meetings, etc., on top of regular life stuff which may be why the woman in the OP opted for the phone (and quite possibly ipods didn't offer the app yet).
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Possibly the poster is referencing the way that some people use the disabled parking permits of other family members (ex. their parents).
That does happen sometimes here. Culprits have been caught because the serial number is assigned to the person the permit is meant for, and if that person isn't with them or if they haven't just dropped them or are there to pick them up, etc., then it can't be used.
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Do you know why a story like this makes the news? Because it's one-of-a-kind. It is an abuse, plain and simple and any idiot can see that. That doesn't make it the norm though.
You know what doesn't make the news because it happens so frequently? The children who don't get the cancer treatment they need because their parents' insurance won't cover it. The paraplegic who doesn't get the physical therapy he needs because he has no insurance. The family who lost their home because dad got cancer and couldn't work, lost his insurance...and everything else.
Why not show us THOSE stories?
This is a HUGE abuse where I live. We see it every time we go anywhere with a parking lot. We watch people park in the handicapped spaces and walk perfectly well into the store.
I walk perfectly well sometimes. But I have to make every step count and count every step. I have to shop for clothes for my kid and buy food
Bravo!
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