Lex Frieden, Chairperson
June 2005

The Bulletin, which is free of charge and at NCD’s award-winning Web site (www.ncd.gov), brings you the latest issues and news affecting people with disabilities. To subscribe to the new NCD listserv, go to http://listserv.access.gpo.gov, click on Online mailing list archives, select NCD-NEWS-L, click on Join or leave the list, then complete the short subscription form. Please send your editorial comments to Bulletin editor Mark S. Quigley (mquigley@ncd.gov).

ADA 15th Anniversary Update

On July 25, NCD and its federal partners will celebrate the 15th ADA anniversary with two events. The first is a commemorative, invitation-only reception at The John F. Kennedy Center for the Performing Arts in Washington, D.C., where former President George H. W. Bush will be the keynote speaker. Also speaking are Health and Human Services Secretary Michael O. Leavitt, Labor Secretary Elaine L. Chao, Housing and Urban Development Secretary Alphonso Jackson, and Transportation Secretary Norman Y. Mineta.

The second part of the program is an ADA seminar that will take place on July 26, from 9:00 a.m. until 1:00 p.m. at the Marriott at Metro Center in Washington, D.C. The seminar, which is open to the public, will include an opening plenary session, six ADA-related workshops, and a closing plenary session. Speakers include Homeland Security Secretary Michael Chertoff, Transportation Secretary Norman Y. Mineta, Equal Employment Opportunity Commission Chair Cari M. Dominguez, and Social Security Administration Commissioner Jo Anne Barnhart.

NCD Releases Transportation Report

On June 13, NCD released its report The Current State of Transportation for People with Disabilities (http://www.ncd.gov/newsroom/publications/2005/current_state.doc), stating that improvements have been made in transportation for people with disabilities, but more remains to be done.

The report was developed with the input of individuals with disabilities and transportation professionals from around the country. The purpose of this project was to develop a better understanding of access to transportation and mobility for people with disabilities, including access to traditional public transportation systems, private transportation services, alternative transportation initiatives, and the pedestrian environment; to identify transportation barriers as well as promising practices and models; and to develop recommendations in keeping with the goals of President Bush’s New Freedom Initiative to “expand transportation opportunities for people with disabilities.”

There have been many advances in America’s transportation systems and services for citizens with disabilities, particularly since the passage of the Americans with Disabilities Act of 1990. The U.S. Department of Transportation and the nation’s public transportation industry are to be applauded for their part in bringing about this progress. However, research reveals that many barriers to transportation continue to exist, and prevent the full inclusion and full participation of people with disabilities in society.

The report highlights industry best practices and successful initiatives that can serve as models for communities for enhancing transportation and mobility for people with disabilities. This report also sets forth a variety of recommendations for service improvements and for additional research that will lead to greater options for the 6 million Americans with disabilities who have difficulties obtaining the transportation they need to live independent and productive lives.

Panelists included: Graham Hill, Member, NCD; David Wenzel, Member, NCD; Michael A. Winter, Director, Office of Civil Rights, Federal Transit Administration, U.S. Department of Transportation; William Millar, President and CEO, American Public Transportation Association; Maureen McCloskey, National Advocacy Director, Paralyzed Veterans of America; Robert Coward, President, Washington, DC ADAPT; and Julie Carroll, Senior Attorney Advisor, NCD. Remarks can be found at http://www.ncd.gov/newsroom/testimony/05testimony.htm.

The Associated Press ran a story on the NCD transportation report that was carried in more than 400 news outlets around the world. This coverage also sparked a CNN interview with NCD chairperson Lex Frieden.

NCD Reissues Assisted Suicide Paper

On June 9, NCD reissued its statement opposing the legalization of assisted suicide.

In 1997, NCD issued Assisted Suicide: A Disability Perspective

(http://www.ncd.gov/newsroom/publications/1997/suicide.htm), as part of its role as the principal agency within the Federal Government charged with the responsibility of providing cross-disability policy analysis and recommendations regarding government programs and policies that affect people with disabilities. At the time the position paper was issued, the U.S. Supreme Court was preparing to rule on appeals from the Second and Ninth Circuit Courts, each of which had declared assisted suicide a constitutional right.

After a thorough review of the forms of discrimination people with disabilities experience in American society, the Council decided to oppose legalization of assisted suicide, concluding that:

Current evidence indicates clearly that the interests of the few people who would benefit from legalizing physician-assisted suicide are heavily outweighed by the probability that any law, procedures, and standards that can be imposed to regulate physician-assisted suicide will be misapplied to unnecessarily end the lives of people with disabilities . . . . At least until such time as our society provides a comprehensive, fully-funded, and operational system of assistive living services for people with disabilities, this is the only position that the National Council on Disability can, in good conscience, support.

In the eight years since the position paper was issued, the U.S. Supreme Court has overturned the Second and Ninth Circuits and ruled that there was no constitutional right to assisted suicide, but that the states could experiment with state laws allowing it. There has been an opportunity to observe the implementation of the Oregon assisted suicide law, and the evolution of cultural attitudes toward so-called “mercy killing,” of both the medical and non-medical variety. Jack Kevorkian was convicted of second degree murder for euthanizing a man with ALS; utilitarian euthanasia advocate Professor Peter Singer was hired for a prestigious bioethics chair at Princeton University; two movies favorably depicting euthanasia of people with quadriplegia won Oscars; and numerous courts upheld the right of a guardian to starve and dehydrate a severely brain injured but healthy woman in Florida.

The U.S. Supreme Court has agreed to hear a case this year about the Oregon Death with Dignity Act. Congress has also begun taking a look at federal legislation to address laws governing surrogate decisions to withhold life-sustaining treatment in the aftermath of the Schiavo case. Accordingly, in the context of the current public debate, NCD reaffirms its position opposing the legalization of assisted suicide by reissuing its 1997 position paper along with a statement of its reasons for doing so (http://www.ncd.gov/newsroom/publications/2005/assisted_suicide.htm).

The Council’s position paper carefully examined the many forms of discrimination and devaluation people with disabilities experience in today’s society. The struggle to implement the social vision embodied in ADA continues. In view of the aging of our population, policymakers should turn to the disability rights movement for its expertise in cost-effective services to enhance self-determination and independence. While study and consensus building continue with respect to the formulation of public policies in the aftermath of the Schiavo case, some principles recently expressed to a Congressional subcommittee by attorney, parent, and advocate Rud Turnbull seem clear:

• Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society.

• The nation’s policy for people with disabilities is to ensure their equal protection under the law, advance their self-determination, and promote their independent living.

• Discrimination against any person with a disability, regardless of the nature or severity of the disability, is morally and legally indefensible.

• When medical care is clearly beneficial, it must be provided.

• It is impermissible to take into account the anticipated or actual limited potential of a person, or their lack of resources.

• The person’s disability itself must never be the basis for a decision to withhold treatment.

It is critical to fully implement the rights of people with disabilities, old and young, to choose home- and community-based, long-term-care services, consistent with Title II of the ADA and the U.S. Supreme Court decision in Olmstead. If individuals with disabilities feel that they have lost control of their lives, been devalued because of their impairments, and become a burden to others, the appropriate response from society is to support him or her to live independently in the community. Legalized medical killing solely based on disability should be rejected. People with disabilities are not better off dead, and society is not better off without them.

NCD Civil Rights Forum Information Now Available

On March 29, 2005, NCD sponsored a civil rights forum entitled “Same Struggle, Different Difference.” The forum was held to encourage greater collaboration and communication among disability advocates and the broader civil rights coalition on common policy priorities. The forum was organized by the American Association of People with Disabilities with the support of the Leadership Conference on Civil Rights, AARP, and NCD’s Cultural Diversity Advisory Committee. More than 90 individuals from 47 civil rights and disability rights organizations participated in the forum. A summary of the forum is posted at: http://www.ncd.gov/newsroom/publications/2005/forum_summary.htm. In addition, workgroup notes summarized from forum discussions among national and state level civil and disability rights representatives are posted at: http://www.ncd.gov/newsroom/advisory/cultural/group_notes.htm. A resource directory, drawn from NCD’s Cultural Diversity Initiative toolkit, is posted at: http://www.ncd.gov/newsroom/advisory/cultural/resource_directory.htm.

White House Update

Susan Buckland, Office of Disability Employment Policy, U.S. Department of Labor, has been selected as the Disability Liaison to the White House Domestic Policy Council.

Legislative Update

ADA Notification Act

On June 8, 2005, the ADA Notification Act (H.R. 2804) was introduced in the U.S. House of Representatives. This legislation would amend Title III of the Americans with Disabilities Act of 1990 to require, as a precondition to commencing a civil action with respect to a place of public accommodation or a commercial facility, that an opportunity be provided (at least 90 days) to correct alleged violations. This bill was referred to the House Committee on the Judiciary.

Ending the Medicare Disability Waiting Period Act of 2005

The Ending the Medicare Disability Waiting Period Act of 2005 has been introduced as legislation in both Houses of the U.S. Congress. S. 1217 was introduced in the U.S. Senate June 9, 2005. H.R 2869 was introduced in the U.S. House of Representatives June 13, 2005. These bills amend Title II of the Social Security Act to phase out the 24-month waiting period for individuals with disabilities to become eligible for Medicare benefits and to eliminate the waiting period for individuals with life-threatening conditions. S. 1217 was referred to the Senate Committee of Finance. H.R. 2869 was referred to multiple House Committees with jurisdiction: Ways and Means, Energy and Commerce, Transportation and Infrastructure Subcommittee on Railroads.

The Services for Ending Long-Term Homelessness Act

The Services for Ending Long-Term Homelessness Act has been introduced as legislation in both Houses of the U.S. Congress. S. 709 and H.R. 1471 were introduced on April 5, 2005. These bills would amend the Public Health Service Act to require the Secretary of Health and Human Services, acting through the Administrator of Substance Abuse and Mental Health Services Administration, to design national strategies, including a matching grant program, for providing services in supportive housing that will assist in ending chronic homelessness and to implement programs that address chronic homelessness. S. 709 was referred to the Senate Committee on Health, Education, Labor, and Pensions. H.R. 1471 was referred to the House Committee on Energy and the Commerce Subcommittee on Health.