[Congressional Record (Bound Edition), Volume 145 (1999), Part 21]
[Senate]
[Pages 30551-30552]
[From the U.S. Government Publishing Office, www.gpo.gov]



           TICKET TO WORK AND WORK INCENTIVES IMPROVEMENT ACT

  Mr. KENNEDY. Mr. President, today, the House of Representatives will 
take up one of the most important bills to come before this Congress, 
now labeled the Ticket To Work and Work Incentives Improvement Act, 
which is intended to move us closer to opening the workplace doors for 
the disabled in communities across the country.
  It is a sad day when the U.S. Congress finds it necessary to attach a 
controversial provision to the legislation that could jeopardize the 
opportunity for large numbers of people with disabilities to fulfill 
their hopes and dreams of living independent and productive lives.
  A decade ago, when Congress enacted the Americans With Disabilities 
Act, we promised our disabled fellow citizens a new and better life in 
which disability would no longer put an end to the American dream. Too 
often, for too many Americans, that promise has been unfulfilled. The 
Ticket To Work and Work Incentives Improvement Act is basically the 
legislation that Senator Jeffords of Vermont and I, Senator Roth, and 
Senator Moynihan urged the Senate to accept and had been accepted by 
the Senate by a 99-0 vote. Now the title is the Ticket To Work and Work 
Incentives Improvement Act, and it will dramatically strengthen the 
fulfillment of that promise.
  We know that millions of disabled men and women in this country want 
to work and are able to work. But they are denied the opportunity, 
primarily because they lack the continued access to needed health care. 
As a result, the Nation is denied their talents and contributions to 
our community.
  Eliminating the health care barriers to work will help large numbers 
of disabled Americans to achieve self-sufficiency and enable them to 
become equal partners in the American dream. The Ticket To Work and 
Work Incentives Improvement Act removes these unfair barriers to work 
that face so many Americans with disabilities. It makes health 
insurance available and affordable when a disabled person goes to work, 
or develops a significant disability while working; it gives people 
greater access to the services they need to become successfully 
employed; it phases out the loss of cash benefits as income rises, 
instead of the unfair sudden cutoff that workers with disabilities face 
today; it places work incentives in communities, rather than 
bureaucracies, to help workers with disabilities to learn how to obtain 
the employment services and support they need.
  For far too long, disabled Americans have been left out and left 
behind. It is time for us to take the long overdue action needed to 
correct the injustices that have unfairly been placed upon those with 
disabilities. We should not have this legislation brought down by a 
controversial provision that does not belong in this bill--a provision 
that is effectively what they call around here a ``poison pill.'' A 
provision that endangers the legislation.
  I want to say that for a time it looked as if we were going to see a 
successful achievement for this legislation, and I want to commend my 
colleague and friend, the Senator from Vermont, Mr. Jeffords, for his 
strong leadership, as chairman of our Human Resource Committee. He has 
worked long and hard for this legislation. If we are able to achieve 
it, his role in support of it and also in its development is enormously 
important.
  On the unacceptable amendment that I had mentioned, it is the 
amendment

[[Page 30552]]

which would effectively undermine the proposal of the Secretary of HHS 
on Final Rule for organ transplantation. There is an excellent 
editorial in the Washington Post, dated 11-17-99. It puts this issue in 
perspective. It says:

       Congress has not quite given up the year-long attempt to 
     block rules that would make the Nation's organ transplant 
     network more equitable. House leaders are maneuvering to undo 
     a deal reached by conferees allowing the rules to go into 
     effect, even threatening to block an unrelated authorization 
     for research and training at children's hospitals if the 
     organ rules are not further delayed.

  This was written at a time when they were threatening to hold up the 
help and assistance that pediatric hospitals need to train 
pediatricians, to make sure that pediatric hospitals were going to be 
treated fairly and equitably, as other teaching hospitals.
  There is broad and wide bipartisan support for the proposal to 
support teaching in pediatric hospitals. But that was going to be the 
messenger, and the poison pill was going to be the language which, as I 
understand, would be a part of the legislation that we will see later 
on in the day.
  Let me continue with the Post editorial:

       The rules issuance last year touched off furious counter-
     lobbying by the supporters of the small local transplant 
     centers who feared that a new system based more on finding 
     the patients with the most urgent need, and less on keeping 
     organs near home, would force small centers to close. Never 
     mind if it also would save lives. Currently, when an organ 
     becomes available, it is offered locally first and then 
     regionally. That leads to situations in which people languish 
     on long waiting lists in some places, while the wait in other 
     regions is much shorter. The wealthy can get on multiple 
     waiting lists and fly to wherever a liver or kidney becomes 
     available. Since some 4,000 people a year die while waiting 
     for an organ, you would think a proposal to purge the 
     distribution system of some of its inefficiencies would have 
     been welcome. Instead, local transplant centers turn to 
     Congress, which twice attached riders to appropriations bills 
     delaying the regulations' effective date. They also turned to 
     State governments, many of which passed laws that bar and 
     prevent organs from being transferred out of State. Finally, 
     conferees reached a compromise that would delay the rules 6 
     more weeks, then let them go into effect.

  Mr. President, that agreement was broken with the language that has 
been included on the disability legislation. By breaking that 
agreement, the lives of tens of thousands of desperately ill people are 
put at risk. Every year, thousands of people die while waiting for 
transplantation--and at least one person every day dies because the 
transplantation system is not equitable. The language included on the 
disability legislation violates fundamental fairness--the fairness of 
the bargaining process in which an agreement was reached between the 
Secretary and the appropriators, and the fairness of the organ 
allocation system.
  Mr. President, I will take only a moment or two more--because the 
time is moving on--to refer to the Institute of Medicine report, which 
really is the authoritative report on this whole issue. I will mention 
relevant parts of the institute report, and focus on the conclusion 
that the Institute of Medicine had on the whole question of developing 
rules on fairness for organ transplantation--the question of how to 
best address the moral issues and the ability of people to be able to 
be treated fairly under a system of organ distribution.
  The Institute of Medicine's analysis shows that patients who have a 
less urgent need for a transplant sometimes receive transplants before 
more severely ill patients who are served by different OPOs. There is 
no credible evidence that implementing the HHS's recommendation would 
result in closure of smaller transplant centers.
  Mr. President, that fear about the fate of small centers is the heart 
of the argument of those that have put on this rider. A rider that has 
no business being put on this legislation.
  The Institute of Medicine analysis further found that there is no 
reason to conclude that minority and low-income patients would be less 
likely to obtain organ transplants as a result. Likewise, data does not 
support the assertion that potential donors and their families would 
decline to make donations because an organ might be used outside the 
donor's immediate geographical area.
  The Institute of Medicine recommended that HHS--and this is on page 
12 of the report--should exercise the legitimate oversight 
responsibilities assigned to it by the National Organ Transplant Act, 
and articulated in the Final Rule, to manage the system of organ 
procurement and transplantation in the public interest.
  Federal oversight is needed to ensure that high standards of equity 
and quality are met. Those high standards of equity and quality were 
included in the Secretary's excellent recommendation. By tampering with 
those, we are undermining enormously powerful and important health 
policy issues. And this extremely controversial rider is added onto 
underlying legislation which is so important to millions of disabled 
individuals in our country. Individuals who thought--when this 
legislation moved through with very strong bipartisan support in the 
Senate, and then through the final months, has moved through the House 
of Representatives, and has the strong support of President Clinton, 
and has had the bipartisan support here in the Congress--thought that 
there was going to be a new day for those who have physical or mental 
challenges and disabilities to have the ability to participate in the 
workforce and become more productive, useful, active, and independent 
citizens in this country, and also to be able to contribute to the 
Nation in a more significant way.
  I certainly hope we can work through this process because the 
legislation, which as I mentioned, has been completed and supported in 
a bipartisan way, is a lifeline to millions of Americans and deserves 
passage.
  I see my friend and colleague, Senator Jeffords, who has been 
instrumental in having this legislation advanced. I am glad to see him 
on the floor at this time. I hope he will address the Senate on this 
issue.

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