[Congressional Record Volume 145, Number 148 (Wednesday, October 27, 1999)]
[Senate]
[Pages S13269-S13272]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. JEFFORDS (for himself, Mr. Kennedy, Mr. Harkin, Mr. Frist, 
        Ms. Collins, Mr. Wellstone, Mr. Reed, Mr. Dodd and Mrs. 
        Murray):
  S. 1809. A bill to improve service systems for individuals with 
developmental disabilities, and for other purposes; to the Committee on 
Health, Education, Labor, and Pensions.


 The Development Disabilities Assistance and Bill of Rights Act of 1999

 Mr. JEFFORDS. Mr. President, it is a pleasure to introduce 
today, for myself, and my colleagues from the Health, Education, Labor, 
and Pensions Committee, Senators Kennedy, Harkin, Frist, Collins, 
Wellstone, Reed, Dodd, and Murray, The Developmental Disabilities 
Assistance and Bill of Rights Act of 1999. This bill is the 
reauthorization of a piece of legislation with a rich legacy, and a 
long history of bipartisan Congressional support. Originally authorized 
in 1963 and last reauthorized in 1996, it has always focused on the 
needs of our most vulnerable citizens, an estimated four million 
individuals with severe disabilities, including individuals with mental 
retardation and other lifelong, pervasive disabilities.
  Initial versions of this legislation focused primarily on the 
interdisciplinary training of professionals to work with individuals 
with developmental disabilities. The University Affiliated Facilities 
(UAFs) were the first federally funded programs charged with expanding 
the cadre of professionals to address the needs of individuals with 
developmental disabilities. The name of these programs was changed to 
University Affiliated Programs (UAPs) in a subsequent reauthorization 
and their mission was expanded to include community services and 
information dissemination pertaining to individuals with developmental 
disabilities. Finally, in 1996, after 33 years of planned expansion by 
Congress, each State established and received core funding for at least 
one UAP.
  In the 1970 reauthorization of the DD Act, Congress recognized the 
need for, and value of strengthening State efforts to coordinate and 
integrate services for individuals with developmental

[[Page S13270]]

disabilities. As a result, Congress established and authorized funding 
for State Developmental Disabilities Councils (DD Councils) in each 
state. The purpose of the Councils was, and continues to be, to advise 
governors and State agencies on how to use available and potential 
resources to meet the needs of individuals with developmental 
disabilities. Every State has a DD Council. The Councils undertake 
advocacy, capacity building, and systemic change activities directed at 
improving access to community services and supports for individuals 
with disabilities and their families.
  In 1975, Congress created and authorized funding for Protection and 
Advocacy Systems (P&As) in each state to ensure the safety and well 
being of individuals with developmental disabilities. The mission of 
these systems has evolved over the years, initially addressing the 
protection of individuals with developmental disabilities who lived in 
institutions, to the present responsibilities related to the protection 
of individuals with developmental disabilities from abuse, neglect, and 
exploitation, and from the violation of their legal and human rights, 
both in institutions and in the community.
  The 1975 reauthorization of the DD Act also established funding for 
Projects of National Significance. Through this new authority Congress 
authorized funding for projects that would support national initiatives 
related to specific areas of need. Over the years, projects related to 
areas such as people with developmental disabilities and the criminal 
justice system, home ownership, employment, assistive technology, and 
self-advocacy for individuals with developmental disabilities have been 
initiated through these projects.
  The 1999 reauthorization of the DD Act builds on the past successes 
of these programs, reflects today's changing society, and seeks to 
provide a foundation to provide the services and supports that 
individuals with developmental disabilities, their families, and 
communities will need as we enter the next century. Let me take a few 
moments to highlight the major provisions of this bill.
  The Developmental Disabilities Assistance and Bill of Rights Act of 
1999 continues a tradition of support for a DD Network in each State 
that is able to provide advocacy, capacity building, and systemic 
change activities in quality assurance, education and early 
intervention, child care, employment, health, housing, transportation, 
recreation and other services for individuals with developmental 
disabilities and their families. This approach reflects current trends 
in society and in the field of developmental disabilities in that it 
emphasizes the empowerment of individuals with developmental 
disabilities and their families and joins it with state flexibility and 
increased accountability.
  The bill continues and further develops the important work of the DD 
Act programs in each State. It seeks to ensure that more individuals 
with developmental disabilities are able to fully participate in and 
contribute to their communities through full integration and inclusion 
in the economic, political, social, cultural, and educational 
mainstream of our nation. It also assists DD Act programs to improve 
the quality of supports and services for individuals with developmental 
disabilities and their families regardless of where they choose to 
live.
  Unfortunately, in keeping with other realities of our time, the bill 
also recognizes that individuals with developmental disabilities are at 
greater risk of abuse, neglect, financial and sexual exploitation, and 
the violation of their legal and human rights, than the general 
population. Based upon this recognition, the bill supports the extra 
effort and attention that is needed, in both individual and systemic 
situations, to ensure that individuals with developmental disabilities 
are put at no greater risk of harm than others in the general 
population.
  The bill recognizes that individuals with developmental disabilities 
often have multiple, evolving, life long needs that require interaction 
with agencies and organizations that offer specialized assistance as 
well as interaction with generic services in their communities. The 
nature of the needs of these individuals and the capacity of States and 
communities to respond to them have changed. In the past 5 years, new 
strategies for reaching, engaging, and assisting individuals with 
developmental disabilities have gained visibility and credibility. 
These new strategies are reinforced by and reflected in this bill.
  In the past, the Councils, Centers, and P&A Systems have been 
authorized to provide advocacy, capacity building, and systemic change 
activities to make access to and navigation through various service 
systems easier for individuals with developmental disabilities. Over 
time there has been pressure for these three programs to provide 
assistance beyond the limit of their resources and beyond their 
authorized missions. The bill clearly and concisely specifies the roles 
and responsibilities of Councils, Centers, and P&A Systems so that 
there is a common understanding of what the programs are intended to 
contribute toward a State's efforts to respond to the needs of 
individuals with developmental disabilities and their families.
  The bill gives States' Councils, Centers, and P&A Systems more 
flexibility. Each program in a State, working with stakeholders, is to 
develop goals for how to assure that individuals with developmental 
disabilities and their families participate in the design of and have 
access to needed community services, individualized supports, and other 
forms of assistance that promote self-determination, independence, 
productivity, integration, and inclusion in all facets of community 
life. Goals may be set in any of the following areas of emphasis: 
quality assurance, education and early intervention, child care, 
health, employment, housing, transportation, recreation, or other 
community services.
  Consistent with Congressional emphasis on strengthening 
accountability for all federal programs, this legislation requires each 
program to determine, before undertaking a goal, how it will be 
measured. Measurement of a goal must reflect the impact of the goal on 
individuals with developmental disabilities. The Secretary of the 
Department of Health and Human Services (HHS) is to develop indicators 
of progress to evaluate how the three programs in each State have 
engaged in activities to promote and achieve the purpose and policy of 
the Act in terms of choices available to individuals with developmental 
disabilities and their families, their satisfaction with services, 
their ability to participate in community life, and their safety. In 
addition, the Secretary is to monitor how the three programs funded in 
each State coordinate their efforts, and how that coordination affects 
the quality of supports and services for individuals with developmental 
disabilities and their families in that State.
  During the past several years, a clearer picture has emerged of what 
individuals with developmental disabilities are able to accomplish when 
they have access to the same choices and opportunities available to 
others and with the appropriate support. There has also been increasing 
recognition of and support for self-advocacy organizations established 
by and for individuals with developmental disabilities. This bill 
reflects and promotes such efforts by authorizing State Councils in 
each State to support self-advocacy organizations for individuals with 
developmental disabilities.
  The legislation renames the University Affiliated Programs as 
University Centers for Excellence for Developmental Disabilities 
Education, Research, and Service, expands their responsibilities to 
include the conduct of research, and links them together to create a 
National Network.
  By administering the three programs specifically authorized under the 
DD Act and by funding projects of national significance to accomplish 
similar or complementary efforts, the Administration on Developmental 
Disabilities (ADD) in HHS plays a critical role in supporting and 
fostering new ways to assist individuals with developmental 
disabilities and in promoting system integration to expand and improve 
community services for individuals with disabilities. This bill 
provides ADD with the ability to foster similar efforts across the 
Executive Branch. The bill authorizes ADD to pursue and join with other 
Executive Branch entities in activities that will improve choices, 
opportunities, and services for individuals with developmental 
disabilities.
  The bill recognizes that forty-nine States have begun to develop 
family

[[Page S13271]]

support programs for families with children with disabilities. This 
supports States by providing grants (one, 3-year grant per State, on a 
competitive basis) to assist States to provide services to families who 
choose to keep their children with disabilities at home and not be 
forced to place their children in institutions due to the lack of 
support. The bill gives States maximum flexibility to use targeted 
funds to strengthen or expand existing State family support programs.
  Finally, in response to a national need to increase the number and 
improve the training of direct support workers who assist individuals 
with developmental disabilities where they live, work, go to school, 
and play, the bill includes provisions proposed by Senators Frist and 
Wellstone. One provides funding for the development and dissemination 
of a technology-based training curriculum to provide state of the art 
staff development for individuals in direct service roles with people 
with developmental disabilities and their families. The other is a 
scholarship program to encourage continuing education for individuals 
entering the field of direct service
  Throughout the country, the DD Act programs have a long history of 
achievement. In Vermont, the DD Act programs make ongoing contributions 
to major initiatives affecting individuals with developmental 
disabilities and their families. They play significant roles in many of 
Vermont's accomplishments, including: the inclusion of children with 
severe disabilities into local schools and classrooms; early 
intervention and family leadership initiatives that are national 
models; and innovative programs in the areas of employment, and 
community living options for individuals with developmental 
disabilities. Based upon the letters our office has received from 
across the country, it is clear that these small programs make 
substantial, positive differences in their states.
  The bill we present today reflects the foundation of what Congress 
has supported over the past 36 years, combined with our best efforts to 
support individuals with the most severe disabilities, their families, 
and their communities into the next century. It represents the best of 
what we in Congress have the opportunity to do . . . to ensure that 
those who are among our most vulnerable citizens, are protected, 
supported, and encouraged to achieve their potential. My colleagues and 
I are proud to present it to you today and hope to see it enacted as 
soon as possible. 
  Mr. KENNEDY. Mr. President, today I join with my colleagues, Senator 
Frist, Senator Jeffords, Senator Mikulski, Senator Murray, Senator 
Durbin, and Senator Cochran to introduce the ``Clinical Research 
Enhancement Act of 1999''.
  Our goal is to enhance support for clinical research, which is 
central to biomedical research. Major advances in basic biological 
research are opening doors to new insights into all aspects of 
medicine. As a result, extraordinary opportunities exist for cutting-
edge clinical research to bring breakthroughs in the laboratory to the 
bedside of the patient. Clinical research is essential for the 
advancement of scientific knowledge and the development of cures and 
treatments for disease. In addition, the results of clinical research 
are incorporated by industry and used to develop new drugs, vaccines, 
and health care products. These advances in turn strengthen the economy 
and create jobs.
  Unfortunately, the number of physicians choosing careers in clinical 
research is in serious decline. Between 1994 and 1998, the number of 
physicians applying for first-time NIH grants decreased by 21%. Studies 
by the Institute of Medicine, the National Research Council, the 
National Academy of Sciences, and the National Institutes of Health 
have all highlighted the significant problems faced by clinical 
researchers, including lack of grant support, lack of training 
opportunities, and the heavy debt burden from medical school.
  The legislation we are introducing today seeks to enhance clinical 
research by addressing these issues. Our bill will provide research 
support and training opportunities for clinical researchers at all 
stages of their careers, as well as the necessary infrastructure to 
conduct clinical research.
  The bill establishes several research grant awards. The Mentored 
Patient-Oriented Research Career Development Awards will support 
clinical investigators in the early phases of their independent careers 
by providing salary and other support for a period of supervised study. 
The Mid-Career Investigator Awards in Patient-Oriented Research will 
provide support for mid-career clinicians, to give them time for 
clinical research and to act as mentors for beginning investigators.
  To encourage the training of clinical investigators at various stages 
in their careers, the bill establishes several programs. The NIH will 
support intramural and extramural training programs for medical and 
dental students. For students who want to pursue an advanced degree in 
clinical research, the bill provides support for both students and 
institutions to create training programs. For post-graduate education, 
NIH will support continuing education in such research.
  Our legislation also creates a clinical research tuition loan 
repayment program to encourage recruitment of new investigators. 
Student debt is a major barrier to clinical research. Young physicians 
graduate from medical school with an average debt of $86,000. Because 
of the limited financial opportunities in clinical research to repay 
their large debts, many young physicians are under great pressure to 
choose more lucrative fields of medical practice. NIH has acknowledged 
this problem, and has established an intramural loan repayment program 
to encourage the recruitment of clinical researchers to NIH. Our 
legislation expands the current program, so that researchers throughout 
the country will be eligible.
  A solid infrastructure is essential to any research program. In 
clinical research, that infrastructure is provided, in part, by the 
general clinical research centers at academic health centers throughout 
the country. Our bill provides statutory authority for those clinical 
research centers.
  In the past, support for these centers was once provided largely by 
academic health centers. However, academic health centers today are 
confronted with heavy competition from non-teaching institutions and 
are increasingly emphasizing patient care over research to minimize 
costs. In the face of these changes, clinical researchers have become 
much more dependent on NIH for infrastructure support.
  I look forward to working with my colleagues to move this important 
legislation through Congress. Our bill is supported by over 70 
biomedical associations and organizations. I commend the American 
Federation for Medical Research for its support of this legislation.
  Mr. FRIST. Mr. President, I rise to offer my support as a 
cosponsor of the Developmental Disabilities Assistance and Bill of 
Rights Act Amendments of 1999, a bill to extend and improve our 
Nation's developmental disabilities programs which allow individuals 
with developmental disabilities, such as mental retardation and severe 
physical disabilities, to live more independent and productive lives.
  As the Chairman of the Senate Subcommittee on Disability Policy 
during the 104th Congress, I introduced the Developmental Disabilities 
Assistance and Bill of Rights Act Amendments of 1996 which successfully 
extended this vital law. Through this experience, I became aware of the 
importance of the programs under this Act and how they work to improve 
the lives of individuals with developmental disabilities.
  Before the DD Act was first signed in 1963, Americans who happened to 
be born with developmental disabilities often lived and died in 
institutions where many were subjected to unspeakable conditions, far 
worse than conditions found in any American prison. Over the last 
several decades, thanks in part to the programs included in the DD Act, 
we have learned how to help families to bring up their children with 
developmental disabilities in their family homes; we have learned how 
to teach children with developmental disabilities; we have learned how 
to make room for these citizens to live and work in the heart of our 
communities; and we have learned how to ensure safe living environments 
and dependable care for those

[[Page S13272]]

individuals with developmental disabilities who remain in residential 
facilities.
  The bill introduced today will ensure that these activities will 
continue. This bill will update and increase the accountability and 
flexibility of these programs under the law. These programs include the 
university affiliated programs which educate students in developmental 
disabilities related fields and which conduct research and training on 
how to meet the needs of the disabled. The law also authorizes funding 
for State Developmental Disabilities Councils which advise governors 
and State agencies on how to use available and potential resources to 
meet the needs of individuals with developmental disabilities. To help 
protect the rights of the developmentally disabled, the law provides 
grants for Protection and Advocacy Systems to provide information and 
referral services and to investigate reported incidents of abuse and 
neglect of individuals with developmental disabilities.
  I am pleased that Senator Jeffords has agreed to include a provision 
in this bill which I drafted to address the training of direct service 
personnel for individuals with developmental disabilities. The training 
of direct service personnel is a national challenge in both magnitude 
and complexity. The size of this workforce is over 400,000 persons with 
an estimated annual turnover rate of 50 percent. In addition, nearly 
half of these workers are part time, working nontraditional hours. To 
address this dilemma, I have drafted a provision to develop a training 
program to create, evaluate, and disseminate a multimedia curriculum 
for staff development of individuals who are direct support workers or 
who seek to become direct support workers. This program will help 
develop a training regime that will be both cost and time effective for 
providers of services for the developmentally disabled.
  Mr. President, I am pleased to offer my support to the Developmental 
Disabilities Assistance and Bill of Rights Act Amendments of 1999, 
which will improve and strengthen an important law which provides 
support for individuals with developmental disabilities and their 
families and which will assist individuals with developmental 
disabilities to live independently and work in the community, out of 
institutions, with as little bureaucracy and government intrusion as 
possible.
 Mr. HARKIN. Mr. President. The Developmental Disabilities Act 
has been a cornerstone of federal registration for people with 
disabilities. I am pleased to be here today with Senator Jeffords, 
Senator Kennedy, and other colleagues from the Health, Education, 
Labor, and Pensions Committee to introduce legislation that will 
reauthorize this important law.
  The entities funded under the Act--The Developmental Disabilities 
Councils, University Affiliated Programs, and the Protection and 
Advocacy agencies--have enabled us to move away from a service system 
dominated by large public institutions, and to establish services where 
families and individuals want them--in their own homes, communities, 
and neighborhoods. In fact, the Supreme Court cited the Developmental 
Disabilities Act in the recent Olmstead decision as one of several 
pieces of federal legislation that secure opportunities for people with 
disabilities to enjoy the benefits of community living.
  This year's reauthorization is important for a number of reasons. 
First, we must continue our progress toward providing better community 
services for all people with disabilities. The Development Disabilities 
Act is instrumental in that work.
  Second, we must ensure that people with developmental disabilities 
are free from abuse and neglect in all aspects of the service delivery 
system. This bill will help protect people with disabilities from abuse 
and neglect no matter where they live--inside an institution or in the 
community.
  And, finally, we must do more to strengthen and support families as 
they provide care and support to family members with a disability. 
Family Support programs are one of the fastest growing services on the 
State level. State policy-makers are realizing that family caregivers 
are the true heroes of our long-term care system and they need help if 
they are going to keep their children at home. In this year's 
reauthorization of the Developmental Disabilities Act, we have included 
a Family Support program to help states strengthen and coordinate their 
support systems for family caregivers.
  I commend the disability groups for all of their work to make this 
reauthorization possible. I thank my colleagues and their staff for 
their hard work to reauthorize this law into the next millennium. I 
applaud their commitment to people with developmental 
disabilities.
                                 ______