[Congressional Record (Bound Edition), Volume 146 (2000), Part 6]
[Extensions of Remarks]
[Pages 8360-8361]
[From the U.S. Government Publishing Office, www.gpo.gov]



INTRODUCTION OF THE ALTERNATIVE COMMUNICATION DEVICES MEDICARE COVERAGE 
                                  ACT

                                 ______
                                 

                     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, 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 interpreter, who 
     repeated my words more clearly. However, the tracheotomy 
     operation removed my ability to speak altogether. For a time, 
     the only way I could communicate was to spell out words 
     letter by letter, by raising my eyebrows when someone pointed 
     to the right letter on a spelling card. It is pretty 
     difficult to carry on a conversation like that, let alone 
     write a scientific paper.
       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.

[[Page 8361]]

     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: UCP, the nation's largest health 
     charity, is pleased to endorse your forthcoming bill to 
     require the Department of Health and Human Services to issue 
     a Medicare National Coverage Determination for augmentative 
     and alternative communication (AAC) devices. Many people with 
     severe speech disabilities, such as those due to cerebral 
     palsy, need these devices to communicate, but requests by UCP 
     and other organizations for Medicare to issue a national 
     coverage determination have not been heeded.
       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.

                                  ____
                                  

                                              Sunrise Medical,

                                       Carlsbad, CA, May 16, 2000.
     Congressman Randy ``Duke'' Cunningham,
     Rayburn House Office Building, Washington, DC.
       Dear Congressman Cunningham: Sunrise Medical appreciates 
     your leadership in introducing legislation to provide 
     Medicare coverage for Augmentative and Alternative 
     Communication devices (``AAC''). These devices provide 
     individuals who are unable to speak, use sign language, or 
     write because of cerebral palsy, muscular dystrophy, stroke 
     or ALS, the ability to communicate and therefore lead safer 
     and more productive lives.
       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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