INTRODUCTION OF THE ALTERNATIVE COMMUNICATION DEVICES MEDICARE COVERAGE ACT -- HON. RANDY ``DUKE'' CUNNINGHAM (Extensions of Remarks - May 17, 2000)

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HON. RANDY ``DUKE'' CUNNINGHAM OF CALIFORNIA IN THE HOUSE OF REPRESENTATIVES Wednesday, May 17, 2000

Mr. CUNNINGHAM. Mr. Speaker, I rise today to introduce legislation that will help America's seniors take better care of themselves. This legislation will direct the Health Care Financing Administration (HCFA) to give Medicare beneficiaries coverage of Augmentative and Alternative Communication Devices (``AAC devices''). AAC devices provide individuals who are unable to speak, use sign language, or write because of cerebral palsy,
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muscular dystrophy, stroke or ALS, the ability to communicate--and therefore to lead safer and more productive lives.

I am joined in this effort by my colleagues from California and New York, the Honorable RON PACKARD and JERROLD NADLER, and several other colleagues. In addition, full Medicare coverage of AAC devices is urged by a broad range of the professional medical community, including the American Medical Association, the American Academy of Neurology, and 13 of America's leading disability organizations, including the United Cerebral Palsy Association.

For over a year and a half, I have been working with other Representatives and Senators in hopes of accomplishing administratively through HCFA this goal of AAC device coverage. On Dec. 30, 1999, these 13 leading disability organizations filed a formal request to HCFA for Medicare coverage of AAC devices. On April 26, 2000, the HCFA, after missing its own earlier 90-day deadline for a decision, took only an incomplete and partial step. It withdrew a prior, inexplicable national non-coverage decision of AAC devices, issued in the 1980's, which was an obstacle to granting coverage. However, HCFA failed to take the needed step of granting Medicare beneficiaries coverage of AAC devices.

The legislation we are introducing today will accomplish that goal, and secure AAC device coverage for America's seniors through their Medicare health benefits.

For many of the people who need these devices, the ability to speak and interact with society though a communications device has a profound and positive impact on their lives. One of the most prominent users of these devices is the famed physicists Dr. Stephen Hawking, who suffers from amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease. Dr. Hawking's story of how his disease forced him to communicate through an augmentative communication device is best told in his own words:

In 1985, I had to have a tracheotomy operation. After this, I had to have 24 hour nursing care. This was made possible by grants from several foundations. Before the operation, my speech had been getting more slurred, so that only a few people who knew me well could understand me. But at least I could communicate. I wrote scientific papers by dictating to a secretary, and I gave seminars through an
However, a computer expert in California, called Walt Woltosz, heard of my plight. He sent me a computer program he had written, called Equalizer. This allowed me to select words from a series of menus on the screen, by pressing a switch in my hand. The program could also be controlled by a switch, operated by head or eye movement. When I have built up what I want to say, I can send it to a speech synthesizer. At first, I just ran the Equalizer program on a desk top computer.
However David Mason, of Cambridge Adaptive Communication, fitted a small portable computer and a speech synthesizer to my wheel chair. This system allowed me to communicate much better than I could before. I can manage up to 15 words a minute. I can either speak what I have written, or save it to disk. I can then print it out, or call it back and speak it sentence by sentence. Using this system, I have written a book, and dozens of scientific papers. I have also given many scientific and popular talks. They have all been well received. I think that is in a large part due to the quality of the speech synthesizer, which is made by Speech Plus. One's voice is very important. If you have a slurred voice, people are likely to treat you as mentally deficient: Does he take sugar? This synthesizer is by far the best I have heard, because it varies the intonation, and doesn't speak like a Dalek. The only trouble is that it gives me an American accent.
I have had motor neuron disease for practically all my adult life. Yet it has not prevented me from having a very attractive family, and being successful in my work. This is thanks to the help I have received from Jane, my children, and a large number of other people and organizations. I have been lucky, that my condition has progressed more slowly than is often the case. But it shows that one need not lose hope.

Mr. Speaker, Dr. Hawking's story is one of triumph over a terrible disease. But he is not alone.

More than 30,000 Americans suffer from ALS, another 30,000 from cerebral palsy and untold others from various diseases that rob them of their ability to speak. Fortunately, modern technology is making these augmentative communication devices smaller, easier to handle and affordable for many individuals.

However, for those who cannot afford these devices, they are already covered by every state Medicaid program as well as by TRICARE, the Department of Veterans Affairs, and hundreds of commercial health providers. They are not covered by Medicare. The Medicare program remains alone among federal government health care providers in choosing not to cover AAC devices, despite numerous attempts to secure this needed coverage.

We believe that HCFA can and should grant coverage of these devices to Medicare beneficiaries. Our legislation will accomplish that goal. Further delay is a great disservice to Medicare beneficiaries--seniors who often simply cannot speak for themselves--who need access to AAC devices. The challenges suffered by the greatest physicist of our time, Dr. Hawking, made clear to us through his own words, are likewise shared by thousands of other seniors around this country, who, without these devices, cannot speak for themselves. At the most basic level, the ability to communicate with a doctor, pharmacist, or care worker could save a senior's life. Moreover, securing Medicare coverage for seniors to use AAC devices gives voice to Americans who are kept silent, improving the quality of their lives immeasurably.

Attached are letters from the United Cerebral Palsy Association and Sunrise Medical, a communications device manufacturer, supporting this legislation. I urge all my colleagues to join me by co-sponsoring this timely and important legislation to achieve Medicare coverage of AAC devices.

United Cerebral Palsy Associations,

Washington, DC, May 9, 2000.
Hon RANDY (DUKE) CUNNINGHAM

Attn: Tim Charters, Rayburn House Office Building, Washington, DC 20515.
DEAR REP. CUNNINGHAM:
Medicare has failed to act in spite of the compelling case for the efficacy of AAC devices, in spite of physicians who determine these devices are medically necessary for many Medicare beneficiaries with severe speech disabilities, and in spite of the policy of every other health insurer to pay for them. As a result, some Medicare beneficiaries are unable to communicate because they cannot afford to buy these devices themselves.
Thus we believe Congress should enact your bill at the earliest possible time. We look forward to continuing to work with you as this proposal is considered by Congress.
Sincerely,

Kirsten A. Nyrop,

Executive Director.

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Sunrise Medical,

Carlsbad, CA, May 16, 2000.
Congressman RANDY ``DUKE'' CUNNINGHAM,
Rayburn House Office Building, Washington, DC.
DEAR CONGRESSMAN CUNNINGHAM:
Sunrise Medical designs, manufactures and markets AAC devices. These devices are covered by every state Medicaid program, as well as by Tri-Care, the Department of Veterans Affairs, and hundreds of commercial health providers. Only Medicare has to date not covered AAC devices.
Full Medicare coverage of AAC devices is urged by virtually the entire professional medical community, including the American Medical Association, the American Academy of Neurology, and the 13 leading disability organizations. These organizations, including Sunrise Medical, filed on December 30, 1999 a request with HCFA for Medicare coverage of AAC devices. On April 26, 2000 HCFA, after missing its own earlier 90-day deadline for a decision, took only an incomplete and partial step. It withdrew the prior inexplicable national non-coverage decision of AAC devices, but it failed to take the needed step granting Medicare beneficiaries coverage of AAC devices. To leave this issue only half way done is a great disservice to Medicare beneficiaries who need access to AAC devices now.
Sunrise Medical supports your sponsoring legislation to provide Medicare coverage of AAC devices to give voice to seniors who cannot speak for themselves.
Sincerely,

Steven A. Jaye,

Senior Vice President.

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