Testimony of

Lex Frieden
Chairperson
National Council on Disability

submitted for the record of the

U.S. Senate
Committee on Appropriations
Subcommittee on Labor, Health and Human Services,
Education, and Related Agencies
184 Senate Dirksen Office Building
Washington, DC

March 31, 2004

Introduction

Mr. Chairman and members of the Committee, I am Lex Frieden, chairperson of the National Council on Disability (NCD). I am presenting our budget proposal for Fiscal Year (FY) 2005. NCD's appropriation for FY 2004 is $3,021,070 inclusive of the rescission.

First, I will present you with an overview of NCD and its work, particularly our work during the last few years. Then, I will present our proposed budget for FY 2005 with an explanation of this proposal. Finally, I will make a few closing remarks and would be delighted to respond in writing to any questions the Committee might have.

NCD Overview

Let me explain the function of our very small but vital agency. NCD is an independent federal agency making recommendations to the President and Congress on disability policy that affects 54 million people with disabilities regardless of age, disability type, perceived employment potential, economic need, specific functional ability, status as a veteran, or other individual circumstance. NCD consists of 15 members appointed by President Bush and confirmed by the U.S. Senate. Our members span from coast to coast. We come from all walks of life. We come from rural and urban areas. We are culturally diverse. We represent all disabilities. We draw upon all that is the United States.

NCD is truly dedicated to the goals of the Americans with Disabilities Act (ADA). Established in 1978 within the Department of Education, NCD was designated as an independent agency in 1984, so that it would be in a unique position to offer objective and independent expert advice to Congress and the Administration. Our authorizing legislation, the Rehabilitation Act, provides a very broad mandate, covering all aspects of disability policy.

When NCD brought together a diverse group of disability community leaders from around the country in 1996, a consensus emerged that our public policies and programs needed to undergo a paradigm shift that truly mirrored the values of ADA. NCD captured the consensus recommendations of the participants in a report entitled Achieving Independence. NCD's annual report, National Disability Policy: A Progress Report, addresses NCD's progress and the progress made in federal policy for people with disabilities and makes recommendations on how public policy might better meet the needs of the disability community.

While many government agencies deal with issues and programs affecting people with disabilities, NCD is the only federal agency charged with addressing, analyzing, and making recommendations on issues of public policy that affect people with disabilities regardless of age, disability type, perceived employment potential, economic need, specific functional ability, status as a veteran, or other individual circumstance. NCD recognizes its unique opportunity to facilitate independent living, community integration, and employment opportunities for people with disabilities by ensuring an informed and coordinated approach to addressing the concerns of people with disabilities and eliminating barriers to their active participation in community and family life.

In its efforts to provide leadership in the development and evaluation of disability policy, NCD conducts a variety of activities. In addition, NCD meets quarterly in Washington and occasionally at other sites around the country to deliberate on these and other disability-related issues.

Major Accomplishments During FY 2003

NCD, with its mandate to advise the President and Congress on disability policy, is in a key position to articulate recommendations to help formulate a strong, cohesive, national disability policy.

In a manner of speaking, NCD continues to serve as an incubator for a variety of emerging issues and recommendations in the disability community. NCD is currently working on a series of reports known as Investing in Independence, which interrelate with centerpiece initiatives presented in President Bush's New Freedom Initiative (NFI). These reports focus on universal design in information and assistive technology; consumer oriented/directed health care; long-term health care; and effective return-to-work strategies.

NCD continues to be a leader in the development and analysis of disability civil rights policies that affect 54 million Americans with disabilities and their families. With a budget authorization of $2,839,423, NCD conducted an array of activities in Fiscal Year (FY) 2003 that supported the President's NFI. Those activities highlighted policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability, from all cultural backgrounds. They also helped people with disabilities realize the promise of the ADA by empowering them to achieve economic self-sufficiency, independent living, inclusion, and integration into all aspects of society.

In FY 2003, NCD continued to review and evaluate new and emerging policy issues that impact people with disabilities. NCD continued to identify the overall needs and concerns of people with disabilities by conducting hearings, forums, and conferences throughout the country, and by responding to thousands of telephone, e-mail, and written inquiries on ADA and other disability civil rights issues.

Major activities for FY 2003 also included the release of an inaugural paper that addresses specific topics raised by U.S. Supreme Court rulings on the ADA. NCD also published several significant reports and papers including: Rehabilitating Section 504; TANF and Disability: Importance of Supports for Families with Disabilities in Welfare Reform; Addressing the Needs of Youth with Disabilities in the Juvenile Justice System; The Status of Evidence-Based Research; National Disability Policy: A Progress Report; People with Disabilities on Tribal Lands: Education, Health Care, Vocational Rehabilitation, and Independent Living; Olmstead: Reclaiming Institutionalized Lives; and Foreign Policy and Disability: Legislative Strategies and Civil Rights Protections to Ensure Inclusion of People with Disabilities.

In addition, during FY 2003, six of President Bush's nominees to NCD were confirmed by the U.S. Senate. They were: Glenn B. Anderson, Ph.D., Little Rock, AR; Milton Aponte, Cooper City, FL; Barbara Gillcrist, Santa Fe, NM; Graham Hill, Arlington, VA; Joel I. Kahn, Ph.D., Wyoming, OH; Anne M. Rader, New York, NY; Marco Rodriguez, Elk Grove, CA; David Wenzel, Scranton, PA; and Linda Wetters, Columbus, OH.

NCD literally receives thousands of telephone calls, e-mail messages, and letters from concerned individuals and organizations about disability issues. With the continued refinement of its award-winning Web page (www.ncd.gov) that receives more than 4,000,000 hits per year, and e-mail capabilities, NCD's outreach to its consumers continued to grow in record numbers. NCD continued to disseminate important disability-related information through its monthly publication NCD Bulletin, special mailings, published articles, special reports, annual reports, brochures, position papers, other disability organizations, the Internet, and ongoing interaction with the news media.

Current Activities for FY 2004

In the past year, NCD has worked quite effectively in support of our mission to promote the full inclusion, independent living, and economic self-sufficiency of people with disabilities of all ages and backgrounds by providing advice, analysis and recommendations on disability policy to the President, Congress, and other federal agencies. I am proud of these accomplishments and will briefly detail them for you.

NCD plays a major role in developing disability policy in America. In fact, it was NCD, during my tenure as executive director, that originally proposed what eventually became ADA. NCD will continue its work on a cycle of research studies and projects entitled Investing in Independence, which focuses on federal polices and programs that advance the independence, integration and the full participation of people with disabilities in society. Solutions enabling people with disabilities to become and remain independent participants in livable communities is the focus of NCD's FY 2004 policy work. NCD's FY 2004 work is linked to NCD's strategic plan and will reaffirm alignment with the President's NFI. NCD will continue follow-up work on the Americans with Disabilities Act and recommendations included in several reports and projects such as: Foreign Policy and Disability: Legislative Strategies and Civil Rights Protections to Ensure Inclusion of People with Disabilities; Olmstead: Reclaiming Institutionalized Lives; People with Disabilities on Tribal Lands: Education, Health Care, Vocational Rehabilitation, and Independent Living; Understanding Disabilities in American Indian and Alaska Native Communities; Enforcing the Civil Rights of Air Travelers with Disabilities; Reconstructing Fair Housing; Addressing the Needs of Youth with Disabilities in the Juvenile Justice System; Rehabilitating Section 504; The Well Being of our Nation: An Intergenerational Vision of Effective Mental Health Services and Supports; Civil Rights of Institutionalized Persons Act (CRIPA); Educational Outcomes; Universal Design; Medicaid/Medicare; Livable Communities; and FY 2003 Progress Report. NCD plans to conduct research studies/projects in the following areas: ADA's Impact; Long-term Services and Supports; Social Security (Employment), and Transportation. NCD will continue to address emerging issues and develop the FY 2004 progress report on the status on disability in America.

NCD received an additional $200,000 in FY 2004 to support its "Righting the Americans with Disabilities Act" initiative. NCD plans to evaluate the impact of the Americans with Disabilities Act (ADA) and the effects of U.S. Supreme Court cases interpreting the ADA. The contractor will gather input from ADA stakeholders from the field about the impact of the ADA, gather testimony and documentation regarding the impact of the Supreme Court's decisions on people with disabilities, assemble all information gathered, organize all testimony and incidents reported into a consistent format within each of the issue areas, and summarize the findings. The contractor will also prepare a compilation of all cases and reported incidents by state and by congressional district.

Planned Activities and Budget Request for FY 2005

NCD's priorities are based upon the goals and objectives outlined in NCD's strategic plan and recommendations from stakeholders. Research studies and projects are commissioned by NCD when it is necessary to enlist the support of outside individuals and groups who possess expertise not available within NCD. Given the limited size of our agency, the judicious use of external research studies and projects substantially enhances our capability to meet our basic mandate to provide expert advice to the Administration and Congress on disability policy issues.

In proposing the NFI, President George W. Bush and his Administration gave their immediate and firm commitment to moving forward with initiatives aimed at achieving independence and full integration of Americans with disabilities. FY 2002-2004 NCD studies interrelate with centerpiece initiatives presented in President Bush's NFI and the findings and recommendations of these research studies will critically guide Congress and the Bush Administration's implementation of the NFI.

NCD has a number of projects under review for FY 2005 that directly reflect the interests and concerns that thousands of people with disabilities have brought to the agency's attention. NCD's FY 2002-2004 initiatives relate to its Investing in Independence series of reports, capitalizing upon NCD's ability to play a unique and valuable role in the federal policy process. With level funding in FY 2004, NCD will carry out the following proposed projects:

1. Employment Related Initiatives

This will be an evaluation of labor market interventions in addressing the employment of people with disabilities.

The high number of people with disabilities who are unemployed and/or underemployed has been a chronic problem in the United States. The Federal Government has had to take a multifaceted approach (i.e., legislation, rehabilitation, employment programs, and work incentives) in increasing the number of active labor market measures that are directed at the problems of unemployment and/or underemployment. In some instances, the Federal Government has partnered with businesses and industries in the use of various labor market interventions. The Federal Government and the private sector believe that these interventions will be instrumental in assisting individuals with disabilities to gain employment and/or to improve their employment earnings potential. NCD is interested in determining: How accurate are these claims? Which of the different interventions and programs in place are effective? Which, if any, subgroups of people with disabilities benefit the most from these schemes? What are the roles, expectations, experiences, benefits that accrue, and level of satisfaction of employers who are involved in any of these labor market interventions? This NCD study will examine the effectiveness of the aforementioned types of labor market interventions on increasing the employment of individuals with disabilities in the United States.

2. Tax Incentives

NCD will carry out an evaluation of the current usage of tax incentives for businesses and places of public accommodation, as well as personal federal tax provisions of particular interest to people with disabilities. This study would evaluate the ability of business incentives and other provisions such as individual exemptions and deductions to encourage increased opportunity and accessibility, as well as make recommendations for increasing availability, awareness and usage of these incentives.

NCD's study would evaluate the extent tax credits, personal exemptions (such as medical deductions and the standard deduction available for individuals who are blind), and other financial incentives have been or could be used to increase access to employment, housing, transportation, health care, long-term services and technology. A recent General Accounting Office report found that tax credits have had a limited effect on employment of people with disabilities, noting that a very small proportion of corporate and individual taxpayers with a business affiliation use the tax credits that are available to encourage the hiring, retention, and accommodation of workers with disabilities, and that information on the effectiveness of incentives is limited and inconclusive. It is probable that there is an equal lack of information and understanding of financial incentives that promote a wide range of independent living activity. NCD's study would seek information on the extent to which use of incentives reduce society's costs in the unnecessary dependent living and economic dependence of certain people with disabilities. The study would look at the implications of expanding tax credits or deductions. The study would also assess whether better coordination of government efforts, clarification of tax incentive provisions, and increased outreach and education would increase usage.

3. Righting the ADA Initiative

During Fiscal Years 2003 and 2004, NCD's ADA work focused on the Supreme Court's ADA cases. In Fiscal Year 2005, NCD will broaden the focus to implementation of the ADA in general. NCD will host national forums to discuss the implementation of the ADA and establish a national dialogue on ADA across ADA stakeholders, including individuals with disabilities, businesses, employers, and federal agencies, examining strategies for more effectively implementing the ADA. NCD will prepare a report to Congress on its findings and make recommendations to strengthen the implementation of the ADA.

4. Report Implementation

NCD would continue with its follow-up work on implementing the recommendations made in its Investing in Independence series of reports. NCD will provide an ongoing assessment of how these recommendations are being implemented. As part of this assessment, NCD also will identify and describe systems, programs and models demonstrating successful partnerships between the Federal Government and state, local or private organizations to effectively implement and enforce disability civil rights laws.

5. Emerging Issues

NCD will continue to conduct studies on emerging issues such as genetic discrimination. In addition, NCD will work on policy priorities related to international, mental health and cultural diversity issues.

6. Public Education and Awareness Strategy

As part of its ongoing public education and awareness outreach efforts, NCD will highlight findings and recommendations from its primary FY 2005 projects. NCD will do this while focusing and increasing attention on issues of cultural diversity. NCD will continue to elevate the voices of underserved and unserved segments of this nation's population, which will help NCD develop federal policy that addresses the needs and civil and human rights of people from diverse cultures.

As President Bush has stated in his NFI, "Too many Americans with disabilities remain outside the economic and social mainstream of American life." NCD research has shown that this is especially true for people with disabilities from culturally diverse backgrounds.

NCD will work with the Administration and the proposals in the President's NFI to ensure that all Americans have the opportunity to learn and develop skills, engage in productive work, choose where to live, and participate in community life. NCD's public education and awareness outreach efforts represent an important step in achieving these goals. NCD's efforts will help to further integrate all Americans with disabilities into the workforce and help remove barriers to participation in community life.

NCD's FY 2005 initiatives capitalize on NCD's ability to play a unique and valuable role in the federal policy process. With this budget request, NCD will continue to strengthen the linkage between the Administration, Congress, and the growing but often overlooked constituency of people with disabilities.

In FY 2005, NCD is proposing to undertake major and important initiatives designed to markedly improve disability policy in this country. NCD has historically operated in a cost-effective manner, with a small core staff to identify issues and coordinate research projects. Much of our actual policy research is privatized through external contracts. NCD then considers the findings of this research and develops recommendations to the President and Congress based on this independent research.

During FY 2005, NCD will continue its interagency policy liaison activities with the National Institute on Disability and Rehabilitation Research, the Rehabilitation Services Administration, the Office for Special Education and Rehabilitative Services, the Centers for Disease Control and Prevention, the National Center for Medical Rehabilitation Research, the White House Initiative on Asian Americans and Pacific Islanders, and other governmental entities. NCD will also continue to increase our outreach to people with disabilities and their families, national organizations concerned with disability policy, as well as the private sector. In this way, NCD will be able to ensure that the policy guidance it provides to the President and Congress is truly representative of the needs and aspirations of people with disabilities.

Conclusion

The President's budget for FY 2005 includes $2,873,422 for NCD. NCD's FY 2005 workplan is based on funding at its FY 2004 level. As an independent federal agency representing the concerns, needs, and interests of our constituents and yours - currently 54 million Americans with disabilities, or one in five people - NCD will continue to provide the President and Congress with timely information and advice on the most important issues facing all Americans with disabilities. NCD will be ready to provide assistance to you and most importantly to people with disabilities. I hope, by my testimony and budget request document, that I have conveyed to you an understanding of the depth and breadth of our activities and the need to do more for people with disabilities. With sufficient funding, NCD can take on these challenges. I urge you to support the President's request for the National Council on Disability. Thank you.

Appendix A
Biographical Information on Witness

Lex Frieden was selected by President George W. Bush to be chairperson of the National Council on Disability (NCD), an independent federal agency making recommendations to the President and Congress on disability policy. He was confirmed by the U.S. Senate on July 26, 2002, the twelfth anniversary of the Americans with Disabilities Act (ADA).

Mr. Frieden is also senior vice president at TIRR (The Institute for Rehabilitation and Research) in Houston, Texas. TIRR is a comprehensive medical rehabilitation center which provides clinical, educational, and research programs pertaining to spinal cord and brain injuries and other disabling conditions. He is also director of TIRR's Independent Living Research Utilization Program and professor of Physical Medicine and Rehabilitation at Baylor College of Medicine.

Mr. Frieden currently serves as president of Rehabilitation International, a federation of 200 national and international organizations and agencies in 90 countries working for the equalization of opportunities for persons with disabilities and their families within society, and for the rehabilitation of people with disabilities. Mr. Frieden also serves as a member of the United Nations Panel of Experts on the Standard Rules for Disability.

From 1984 to 1988, Mr. Frieden served as executive director of the National Council on the Handicapped (now NCD), located in Washington, D.C. In this capacity, he was instrumental in conceiving and drafting the original ADA.

A graduate of Tulsa University, Mr. Frieden has been honored as a Distinguished Alumnus. He also holds a master's degree in social psychology from the University of Houston. He has done additional graduate work in rehabilitation psychology at the University of Houston with support from an SRS doctoral fellowship, and he has been awarded a World Rehabilitation Fund Fellowship to study programs for people with disabilities in Europe.

Mr. Frieden, a quadriplegic due to spinal cord injury, has been involved in the organization of several groups of people with disabilities including the American Coalition of Citizens with Disabilities, the Coalition of Texans with Disabilities, and the Houston Coalition for Barrier Free Living. He is past Chairman of the American Association of People with Disabilities.

Working in the independent living movement by severely disabled people since the early 1970s, Mr. Frieden has published several books and papers on independent living. He served as a consultant panel member for the United States House of Representatives' Committee on Science and Technology from 1976 through 1978, and he prepared the background paper on Community and Residential-based Housing for the White House Conference on Handicapped Individuals in 1977. From 1989 to 1990, he represented the United States on a disability and employment panel at the Organization for Economic Cooperation and Development in Paris, France.

He has received two Presidential Citations for his work in the field of disability, and he was honored by the U.S. Jaycees in 1983 as one of America's Ten Outstanding Young Men. In 1998, he received the Henry B. Betts Award for "efforts that significantly improve the quality of life for people with disabilities."

Appendix B
Mission of the National Council on Disability

Overview and Purpose

NCD is an independent federal agency led by 15 members appointed by the President of the United States and confirmed by the U.S. Senate.

The overall purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability; and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.

Specific Duties

The current statutory mandate of NCD includes the following:

• Reviewing and evaluating, on a continuing basis, policies, programs, practices, and procedures concerning individuals with disabilities conducted or assisted by federal departments and agencies, including programs established or assisted under the Rehabilitation Act of 1973, as amended, or under the Developmental Disabilities Assistance and Bill of Rights Act; as well as all statutes and regulations pertaining to federal programs that assist such individuals with disabilities, in order to assess the effectiveness of such policies, programs, practices, procedures, statutes, and regulations in meeting the needs of individuals with disabilities.
• Reviewing and evaluating, on a continuing basis, new and emerging disability policy issues affecting individuals with disabilities at the federal, state, and local levels, and in the private sector, including the need for and coordination of adult services, access to personal assistance services, school reform efforts and the impact of such efforts on individuals with disabilities, access to health care, and policies that operate as disincentives for individuals to seek and retain employment.
• Making recommendations to the President, the Congress, the Secretary of Education, the Director of the National Institute on Disability and Rehabilitation Research, and other officials of federal agencies, respecting ways to better promote equal opportunity, economic self-sufficiency, independent living, and inclusion and integration into all aspects of society for Americans with disabilities.
• Providing the Congress, on a continuing basis, advice, recommendations, legislative proposals, and any additional information that the Council or the Congress deems appropriate.
• Gathering information about the implementation, effectiveness, and impact of the Americans with Disabilities Act of 1990 (42 U.S.C. 12101 et seq.).
• Advising the President, the Congress, the Commissioner of the Rehabilitation Services Administration, the Assistant Secretary for Special Education and Rehabilitative Services within the Department of Education, and the Director of the National Institute on Disability and Rehabilitation Research on the development of the programs to be carried out under the Rehabilitation Act of 1973, as amended.
• Providing advice to the Commissioner with respect to the policies and conduct of the Rehabilitation Services Administration.
• Making recommendations to the Director of the National Institute on Disability and Rehabilitation Research on ways to improve research, service, administration, and the collection, dissemination, and implementation of research findings affecting persons with disabilities.
• Providing advice regarding priorities for the activities of the Interagency Disability Coordinating Council and reviewing the recommendations of this Council for legislative and administrative changes to ensure that such recommendations are consistent with the purposes of the Council to promote the full integration, independence, and productivity of individuals with disabilities;
• Preparing and submitting to the President and the Congress an annual report titled National
  Disability Policy: A Progress Report.

International

In 1995, NCD was designated by the Department of State to be the official contact point with the U.S. government for disability issues. Specifically, NCD interacts with the special rapporteur of United Nations Commission for Social Development on disability matters.

Consumers Served and Current Activities

While many government agencies deal with issues and programs affecting people with disabilities, NCD is the only federal agency charged with addressing, analyzing, and making recommendations on issues of public policy that affect people with disabilities regardless of age, disability type, perceived employment potential, economic need, specific functional ability, status as a veteran, or other individual circumstance. NCD recognizes its unique opportunity to facilitate independent living, community integration, and employment opportunities for people with disabilities by ensuring an informed and coordinated approach to addressing the concerns of persons with disabilities and eliminating barriers to their active participation in community and family life.

NCD plays a major role in developing disability policy in America. In fact, it was NCD that originally proposed what eventually became ADA. NCD's present list of key issues includes improving personal assistance services, promoting health care reform, including students with disabilities in high-quality programs in typical neighborhood schools, promoting equal employment and community housing opportunities, monitoring the implementation of ADA, improving assistive technology, and ensuring that persons with disabilities who are members of minority groups fully participate in society.

Statutory History

NCD was initially established in 1978 as an advisory board within the Department of Education (Public Law 95-602). The Rehabilitation Act Amendments of 1984 (Public Law 98-221) transformed NCD into an independent agency.