Lex Frieden, Chairperson
October 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).

Congressional Briefing on Emergency Management

On November 10, a number of organizations and agencies in cooperation with the House Disabilities Caucus will conduct a briefing on emergency management and people with disabilities, with a special focus on Hurricanes Katrina and Rita. The briefing is scheduled from 1:30 p.m. - 3:30 p.m. in 2168 Rayburn House Office Building. It is open to all Congressional staff, the public, and the media. NCD vice chairperson Pat Pound will be among those speaking.

NCD Provides Advice on Katrina

On September 30, NCD chairperson Lex Frieden wrote to the President stating that NCD is encouraged by the Federal Government’s recent statements of long-term commitment to leading recovery and reconstruction efforts in the Gulf Coast areas affected most by Hurricane Katrina, as well as those regions in Texas and Louisiana hit by Hurricane Rita. In the wake of Hurricanes Katrina and Rita's devastation, we have an opportunity to improve life for citizens including those with disabilities. The nation is poised to undertake an unprecedented reconstruction effort in rebuilding homes, as well as schools, medical centers, businesses, and other public infrastructure. Estimated costs for this massive effort are conservatively placed upwards of $200 billion.

As this reconstruction effort unfolds over the months and years ahead, we can ensure universal livability in addition to making structural improvements for the hundreds of thousands of people with disabilities and people who are elderly in the Gulf Coast region. We recommend that a universal livability approach be followed in meeting the needs of people with disabilities affected by recovery, rebuilding, and resettlement efforts in all regions affected by Hurricanes Katrina and Rita. Universal livability involves the application of planning and design principles to create communities where universal access and design are an integral part of life. A livable community strives to maximize people's independence, ensure safety and security, promote inclusiveness, and provide choice.

In following basic principles at the outset of the recovery, rebuilding, and resettlement efforts, we can create livability for all citizens. NCD recently transmitted to you a report titled Livable Communities for Adults with Disabilities, which offers a compelling vision for our nation. NCD's report findings make clear that the elements that make a community livable for people with disabilities make it a livable place for all members of the community. Thus, in improving its livability for one particular group of constituents, the community actually accomplishes considerably more.

A livable community is one that achieves the following:

• Provides affordable, appropriate, accessible housing;
• Ensures accessible, affordable, reliable, safe transportation;
• Adjusts the physical environment for inclusiveness and accessibility;
• Provides work, volunteer, and education opportunities;
• Ensures access to key health and support services for people with disabilities; and
• Encourages participation in civic, cultural, social, and recreational opportunities.

The focus of Livable Communities is in line with your Administration's emphasis in the New Freedom Initiative on community integration, participation, and enhancement of the independence of people with disabilities at home, at work, and throughout the course of their daily lives.

NCD recommends that to maximize the potential for success, the following approaches be used to effect change on behalf of people with disabilities evacuated and displaced by Hurricanes Katrina and Rita:

• Consolidate administration and pool funds of multiple programs to improve ease of access to, and information about, benefits and programs for consumers;
• Use tax credits and other incentives to stimulate change in individual and corporate behavior and encourage investment in livable community objectives;
• Provide a waiver or other authority to help communities blend resources from multiple public funding streams to provide and coordinate different services; and
• Require or encourage a private sector match to leverage public funding and stimulate public-private sector partnerships.

NCD suggests that by Executive Order the Federal Government should mandate universal livability and set standards for implementation. Obviously, to ensure that Gulf Coast reconstruction occurs competently, disability organizations should be joined with all governmental recovery, rebuilding, and resettlement (and nongovernment) operations and be relied on for ongoing advice, guidance, and leadership.

NCD joins in the deep concern for all of the citizens who are now displaced as a result of the hurricane-caused disasters, many of whom have disabilities or who are older and experience a high rate of disabling conditions. We are pleased to note the improved initial federal response to Hurricane Rita over the past few days.

Supreme Court Update

Schaffer v. Weast

On October 5, the Supreme Court of the United States heard oral arguments in Schaffer v. Weast (No. 04-698) to decide which side, the parents or the school district, has the burden of proof under the Individuals with Disabilities Education Act (IDEA). When parents of a student with a disability and a local school district reach an impasse over the student's individualized education program, either side has a right to bring the dispute to an administrative hearing officer for resolution.

On August 9, NCD released Individuals with Disabilities Education Act Burden of Proof: On Parents or Schools? a position statement on Schaffer v. Weast.

IDEA does not specify whether parents or school districts have the burden of proof in special education litigation. It is NCD's position that school districts, not parents, should have the burden of proof in issues about IEPs, placement, eligibility, and other matters related to appropriate education.

If a parent disputes an IEP, the courts agree that it is the parent's burden to "place in issue the appropriateness of the IEP." The next issue is whether the parent has the burden of proving that the IEP is not appropriate or whether the school district has the burden of proving that the IEP is appropriate.

There are several competing principles. Should the party attacking the terms of an IEP bear the burden of showing why the IEP is not appropriate? Or should the party that prepared the IEP and has greater expertise and resources have the burden of proving that the IEP is appropriate?

If a statute is silent regarding which party has the burden of proof, the complainant usually has the burden of proof. The U.S. Supreme Court has issued several decisions about burden of proof in the absence of statutory guidance. In most cases, the Court, relying on the policy and history of the statute and concerns of fundamental fairness, has been consistent in assigning the burden of proof to the party more likely to have access to the information that explains its actions in order to arrive at a result that is 'right' and 'just.'

This paper reviews the history of special education, special education law, the Mills case (which formed the backbone of the procedural safeguards in the Individuals with Disabilities Education Act), special education burden of proof cases, and U.S. Supreme Court cases.

Brian Schaffer, Peter Mills and Bill Dunstan are children with disabilities whose cases were decided by different courts. Their own educational and legal processes are typical of the circumstances when parents and schools disagree. Because the burden of proof was assigned to Bill Dunstan, the outcome in his case was not fair or right; it was unjust.

Oregon v. Ashcroft

On October 5, the Supreme Court heard oral arguments in Gonzales v. Oregon (No. 04-623) that discussed whether the Attorney General has permissibly construed the Controlled Substances Act, 21 U.S.C. 801 et seq., and its implementing regulations to prohibit the distribution of federally controlled substances for the purpose of facilitating an individual’s suicide, regardless of a state law purporting to authorize such distribution.

On June 9, NCD reissued its March 1997 paper Assisted Suicide: A Disability Perspective 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.

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 the Americans with Disabilities Act (ADA) continues. In view of the aging of our population, policy-makers 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 Schiavo, 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 any anticipated or actual limited potential of a person or lack of resources.

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

It is critical that the rights of people with disabilities, old and young, to choose home- and community-based long-term care services be fully implemented, 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.

Legislative Update

On September 19, S.1679, titled WE CARE Kids: Working to Enhance Courts for At-risk and Endangered Kids Act of 2005, was introduced by Senators DeWine and Rockefeller and incorporates the Pew Commission's recommendations to improve state courts that oversee foster care cases. This bill amends part E of Title IV of the Social Security Act to strengthen courts for at-risk children and for other purposes.

The legislation would strengthen collaboration between courts and child welfare agencies; enhance representation by better trained attorneys and volunteer advocates; and provide for training for judges and court personnel. The bill was referred to the Senate Committee on Finance.

Youth Advisory Committee

On October 27, NCD renewed its Youth Advisory Committee (YAC) for a two-year period and announced new committee members. They are: Desmeon Thomas, Matthew Cavedon, Zachary Damon, Jennifer Fitz-Roy, Gary Goosman, Amy Litzinger, Regan D. Lynch, Michael D. Murray, Stephanie Orlando, Miranda Pelikan, Andrew S. Phillips, and Gina Semenza.

YAC provides advice to NCD on various issues such as NCD’s planning and priorities. NCD is seeking this type of input in order to make sure NCD’s activities and policy recommendations respond to the needs of youth with disabilities.

NCD to Release Reports: Save the Dates

On November 17, NCD will release its report National Disability Policy: A Progress Report at a media availability at NCD at 1331 F Street, NW, Suite 850, Washington, DC. Vice chairperson Glenn Anderson, Ph.D., will preside.

On November 30, NCD will release a report titled The Social Security Administration’s Efforts to Promote Employment for People with Disabilities: New Solutions for Old Problems at a news conference and Congressional briefing beginning at 10:30 a.m. in the Committee on House Administration Hearing Room, 1310 Longworth House Office Building, Independence and New Jersey Avenues, SE, Washington, DC. Members of Congress and staff, and the public and the media are invited to attend.

On December 15, NCD will release The State of 21st Century Long-Term Services and Supports: Financing and Systems Reform for Americans with Disabilities at a news conference and stakeholder conference beginning at 10:00 a.m. at the National Press Club, First Amendment Room, 529 14th Street, NW, Washington, DC. This event is open to the public and the media.

UN Convention Update

On October 24, NCD cosponsored a symposium with Mental Disability Rights International and American University to bring stakeholders up to date on the status of the current negotiations on monitoring taking place during deliberations on the United Nations Convention on the Rights of People with Disabilities. The symposium brought together human rights and disability experts to discuss innovative models for monitoring the implementation of the convention, as well as gave attention to national level components of monitoring. A report will be prepared of the day’s proceedings and will be available on NCD's Web site at www.ncd.gov.