Spinal Cord Advocates

It case you hadn’t realized, computer technologies have come a long way over the last decade. What once took a room full of computers has been repeatedly modified, enhanced, shrunken and commoditized to the extent that my son’s calculator has more power than the entire computing power of Apollo 11. (That’s the rocket that carried man to the moon, in case your Google is lagging.)

• People with disabilities are denied technologies that are medically necessary when they also have the effect of improving quality of life.
• Medicare is concerned about waste, yet it pays more than 10x what off-the-shelf superior technology will cost.

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Computers have opened pathways to employment, communication, socialization and exploration for people with disabilities (oh yeah, and everyone else too). I guess this is why I became so enraged recently when I realized that common sense had failed.

Kara Lynn has amyotrophic lateral sclerosis, or A.L.S., and it has impacted her ability to speak. In order to communicate with everyone, including her 5-year-old son Aiden - who has Down syndrome - Kara uses a voice synthesizer. Kara, who is insured through Medicare, got a computer with a voice synthesizer a few years ago. The hitch is, for Medicare to pay for the computer, the manufacturers had to render all functions besides voice synthesis inoperable. No email. No internet capacity. No chance of typing a letter to Aiden’s teacher.

You see, under Medicare’s byzantine rules, Medicare will not pay for any equipment that would “be useful in the absence of illness or injury.” So Medicare bought a computer for Kara, and then paid extra to render its inherent functions useless aside for voice synthesis. A few years ago, Medicare apparently paid approximately $8,000 to supply Kara with a computer with limited capacity at additional expense.

Wait, the lunacy gets better…

Kara has been trucking around Poughkeepsie in her power wheelchair with her voice-synthesizer (it’s not a computer any longer) for a few years now and she stumbles upon a retailer who manufacturers superior computers and phones, all of which begin with an “i” in the name (endorsements aren’t cheap). After a quick comparison, Kara realizes that this new phone is one tenth the size of her voice synthesizer, and it has infinitely more utility. Plus, it has built in voice synthesis. And for an extra $150, there’s an application that improves on the built in technology which rivals the voice synthesizer supplied by Medicare.

To summarize:

• Medicare voice synthesizer - a few years old, original cost $8,000, artificially limited functionality. Weighs a ton, limited battery life.
• New smart phone - new technology, includes phone, internet access, GPS, computer, voice synthesizer and about 100,000 other applications, cost $450 with souped-up voice synthesizing capacity.

To summarize from a social justice perspective: people with disabilities are denied technologies by Medicare that are medically necessary because they may also have the capacity to improve quality of life. We’ve seen this before. People with mobility impairments are denied medically necessary power wheelchairs and scooters because they do not medically require the devices within the confines of their homes. They’re unable to walk to the corner, see their doctors, or participate in church services, but none of that matters because these activities don’t occur ‘in-the-home.”

In the midst of health care reform, I beg Congress to stop and use a common sense approach to revising these archaic rules. Want to stop government waste, start in your own programs. Make it easier for people with disabilities to get the right equipment, as prescribed by a medical provider, to address their medical needs and improve their quality of life.

Paul J. Tobin
President, United Spinal Association