Lex Frieden, Chairperson
August 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).

NCD Calls for Federal Disability Recovery Plan in Response to Hurricane Katrina

NCD expresses its deep concern for the tremendous loss of life and devastation caused in the southern part of the United States by Hurricane Katrina and urges the Federal Government to craft a strong coordinated Federal Disability Recovery Plan for the victims and survivors of the hurricane.

According to NCD chairperson Lex Frieden, “Current data indicates that people with disailities are now most at risk in this situation—and will need recovery assistance for months or years. A disproportionate number of the hurricane survivors are people with disabilities whose needs for basic necessities are compounded by chronic health conditions and functional impairments. Relief agencies must prioritize efforts and take special steps to address the unique and complex needs of this population.”

NCD’s 2005 report titled Saving Lives: Including People with Disabilities in Emergency Planning (http://www.ncd.gov/newsroom/publications/2005/publications.htm) recommends immediate federal changes in emergency planning for people with disabilities. NCD encourages Hurricane Katrina responders to follow the findings and recommendations in this timely report.

“Saving Lives: Including People with Disabilities in Emergency Planning, NCD’s 2005 report, provides an overview of steps the Federal Government should take to build a solid and resilient infrastructure that will enable the government to include the diverse populations of people with disabilities in emergency preparedness, disaster relief, and homeland security programs. This infrastructure would incorporate access to technology, physical plants, programs, and communications. It also would include procurement and emergency programs and services.”

“NCD commends the Administration and those in leadership positions for the issuance of the July 22, 2004, Executive Order on people with disabilities and emergency preparedness. In addition, NCD acknowledges the work of the Department of Homeland Security and the Federal Communications Commission in their efforts to ensure that Americans with disabilities are included in the developing infrastructure.”

“All too often in emergency situations the legitimate concerns of people with disabilities are overlooked or swept aside. In areas ranging from the accessibility of emergency information to the evacuation plans for high-rise buildings, great urgency surrounds the need for responding to the concerns of people with disabilities in all planning, preparedness, response, recovery, and mitigation activities. The homeland security terrorist event of September 11, 2001, as well as the recent energy blackouts in the U.S. Northeast and Midwest and, more recently, the natural disaster hurricane events in Florida, the tsunami event of 2004, and this most recent event, Hurricane Katrina, underscore the need to pay attention to the concerns raised in this report,” Frieden said.

The decisions the Federal Government makes, the priority it accords to civil rights, and the methods it adopts to ensure uniformity in the ways agencies handle their disability-related responsibilities are likely to be established in the early days of an emergency and be difficult to change if not set on the right course at the outset. Through this report, NCD offers advice to assist the Federal Government in establishing policies and practices in these areas. This report provides examples of community efforts with respect to people with disabilities, but by no means is it a comprehensive treatment of the emergency preparedness, disaster relief, or homeland security program efforts by state and local governments.

Please visit https://disasterhelp.gov/portal/jhtml/index.jhtml, the Federal Government’s Web portal for disaster information and help.

NFI Proposals Transmitted to Congress

On August 5, the Secretary of Health and Human Services, Michael O. Leavitt, transmitted to Congress a draft bill titled the “New Freedom Initiative Medicaid Demonstrations Act of 2005.”

The New Freedom Initiative would establish several demonstration projects including: the Money Follows the Person Rebalancing demonstration, a respite demonstration for caregivers of adults, respite for caregivers of children with substantial disabilities, and home and community-based alternatives to psychiatric residential treatment facilities for children. Additional provisions would give states the option of providing Medicaid home- and community-based services for up to 90 days during the time final Medicaid eligibility is being determined and remove disincentives for people with disabilities from returning to work by protecting the Medicaid coverage of spouses, if those spouses also have a disability.

IDEA Burden of Proof

On August 9, NCD released Individuals with Disabilities Education Act Burden of Proof: On Parents or Schools? a position statement on Schaffer v. Weast, which is pending in the Supreme Court of the United States (http://www.ncd.gov/newsroom/publications/2005/burdenofproof.htm).

The Individuals with Disabilities Education Act 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.

In Schaffer v. Weast, the United States Court of Appeals for the Fourth Circuit held that “parents who challenge an IEP . . . have the burden of proof in the administrative hearing.” The court noted that the “. . . circuits are split—and splintered in reasoning—on this question.” The split revolves around the Tatro / Alamo Heights line of cases contrasted with the Lascari / Oberti line of cases. Five circuits have assigned the burden of proof, the Tatro / Alamo Heights rule, to parents. Five other circuits, following the Lascari / Oberti rule, assign the burden to schools. The United States Supreme Court agreed to resolve the split between the Circuits. Oral argument is scheduled for October 5, 2005.

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.

The release of the NCD position statement caused Hogan & Hartson L.L.P., one of the counsels for the respondents, to petition the Court to dislodge the NCD position statement and other material from the Court’s view. On August 25, the Court granted the plaintiff’s motion to lodge these documents, including NCD’s position statement, for the record.

CRIPA

On August 8, NCD released its long-awaited report titled The Civil Rights of Institutionalized Persons Act: Has It Fulfilled Its Promise? (http://www.ncd.gov/newsroom/publications/2005/personsact.htm).

Congress enacted the Civil Rights of Institutionalized Persons Act (CRIPA) in 1980 to enable the Department of Justice (DOJ) to protect the rights of people residing in state institutions. The law authorizes the Attorney General to initiate or intervene in lawsuits in federal court to vindicate the rights of people in state-run or locally operated jails and prisons, juvenile correctional facilities, public nursing homes, mental health facilities, and institutions for people with intellectual disabilities.

Twenty-five years later, CRIPA remains critically important. The isolated nature of institutions and the vulnerability of their residents combine to create environments ripe for abuse. One and a half million Americans reside in 17,000 nursing homes, and 30 percent of those facilities have been cited for harming residents or placing them at risk of serious injury or death.

The actual incidence of abuse is far higher. Studies suggest that 80 percent to 85 percent of abuse in institutions goes unreported. Abuse typically occurs behind closed doors. Residents and family members are often reluctant to report abuse for fear of reprisal. In some cases, disabilities may interfere with residents’ ability to ask for help or may lead caregivers to disregard what residents say.

This report examines how DOJ has used its congressional mandate. DOJ’s enforcement of CRIPA has been excellent in some respects and lacking in others. DOJ’s investigations of complaints are thorough and effective. Its letters of findings accurately reflect the results of its investigations and provide information about how states can remedy constitutional and statutory violations. CRIPA requires DOJ to attempt to persuade states to voluntarily comply with the law before initiating lawsuits, but DOJ has been too reluctant to use its authority to litigate, focusing too much time and energy on conciliation as a means of achieving compliance. When DOJ does litigate, it does so skillfully; however, it undermines its advocacy by resolving some cases through private agreements rather than enforceable consent decrees.

NCD Makes Recommendations on Disability in America

On August 1, 2005, NCD staff attended an Institute of Medicine (IOM) invitational workshop titled “Disability In America: A New Look.” Based on NCD staff attendance at that workshop, including a review of the workshop materials and presentations, NCD offered the IOM Committee on Disability in America recommendations for its impending report on Disability in America.

The full text of the NCD’s recommendations can be found at http://www.ncd.gov/newsroom/correspondence/2005/field_08-09-05.htm.

NCD Comments on NIDRR Long-Range Plan

On August 9, NCD submitted comments to the Office of Special Education and Rehabilitative Services in response to its July 27 Federal Register notice seeking comment on the National Institute on Disability and Rehabilitation Research’s (NIDRR) Long-Range Plan (Plan) for fiscal years 2005 through 2009.

The full text of the NCD letter is available at http://www.ncd.gov/newsroom/correspondence/2005/tingus_08-09-05.htm.

Surgeon General Issues First Call to Action for People with Disabilities

On July 26, U.S. Surgeon General Richard H. Carmona, M.D., M.P.H., FACS, released The Surgeon General's Call to Action to Improve the Health and Wellness of Persons with Disabilities, appealing to all Americans to help improve the quality of life for people with disabilities through better health care and understanding. This first-ever Surgeon General's Call to Action on disability was issued on the 15th anniversary of the signing of the Americans with Disabilities Act.

Developed by the Surgeon General in collaboration with the Department of Health and Human Services Office on Disability, the Call to Action describes the particular challenges to health and well-being faced by persons of all ages with disabilities and identifies four goals that, together, can help people with disabilities experience full, rewarding and, above all, healthy lives as contributing members of their communities.

The four goals of the Call to Action are as follows:

Increase understanding nationwide that people with disabilities can lead long, healthy, and productive lives.

Increase knowledge among health care professionals and provide them with tools to screen, diagnose, and treat the whole person with a disability with dignity.

Increase awareness among people with disabilities of the steps they can take to develop and maintain a healthy lifestyle.

Increase accessible health care and support services to promote independence for people with disabilities.

Today, 54 million Americans, or one in five people, are living with at least one disability, and most Americans will experience a disability sometime during the course of their lives. Some individuals are born with a disability; others acquire them through illness, injury, genetic predisposition, or any number of other causes.

The Surgeon General's Call to Action to Improve the Health and Wellness of Persons with Disabilities is available at www.surgeongeneral.gov.

International Update

The Sixth Ad Hoc Committee Meeting on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities met during the first two weeks of August. On August 2, NCD held a side-event at the United Nations to release several topical papers (http://www.ncd.gov/newsroom/publications/2005/alltheseries.htm) that give a snapshot overview of the U.S. experience of people with disabilities with respect to: employment; health; political participation; independent living and living in the community, transportation, education, and the accessibility of electronic and information technology. NCD cosponsored this event with Mental Disability Rights International (MDRI), and NCD member Kathy Martinez moderated the panel. Speakers included Janet Lord (coauthor of three of NCD’s papers), who gave an overview of all seven papers; Eric Rosenthal and Allison Hillman (of MDRI), who discussed enforcement through the Inter-American Commission on Human Rights; and Professor Gerard Quinn of the National University of Ireland, who compared the U.S. and European experiences. The side-event was well-attended and well-received by participants, with every member of the U.S. delegation who was in New York in the audience.

The rights to health and rehabilitation, the right to work, social security and adequate standards of living, as well as participation in political, public and cultural life and in recreation, leisure and sport, were among the articles negotiated during the current session of the Ad Hoc Committee on a Comprehensive and Integral Convention to Promote and Protect the Rights and Dignity of Persons with Disabilities. Ambassador MacKay, the Chair, made significant progress during the two-week-long meeting, managing to hold discussion on every article on the agenda.

The next meeting is scheduled for January 2006, and it will likely be three weeks long. The Chair is hoping to conduct a complete read-through of the text at that time. An advance, unedited report on the meeting can be found at: http://www.un.org/esa/socdev/enable/rights/ahc6reporte.htm. You can also visit the following link for a summary of each day’s proceedings: http://v1.dpi.org/lang-en/resources/details.php?page=286.

NCD Youth Advisory Committee Recruiting Announcement

On August 9, the NCD Youth Advisory Committee (YAC) announced the opening of a nationwide search for new members. The YAC, a 12-member advisory committee with members ranging in age from 16 to 25, has openings for new members (between 16 and 25 years of age) across disability sectors, from diverse cultures and underrepresented areas of the country.

The YAC ensures that NCD's policy recommendations and activities include the perspectives of young people with disabilities. NCD is an independent federal agency, made up of 15 executive members appointed by the President. They are responsible for making recommendations to the President and Congress on issues affecting Americans with disabilities. NCD's overall purpose 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.

The recruiting process began on August 9, 2005, and will close September 18, 2005, (i.e., e-mails by 12 midnight and postal mail post-marked by this date). To submit an application, please send (1) a resume, (2) a letter of recommendation, and (3) a cover letter describing your leadership experiences and your disability-oriented experiences to youth@ncd.gov or YOUTH-YAC Recruiting, c/o Dr. Gerrie Hawkins, NCD, 1331 F Street, NW, Suite 850, Washington, DC 20004.

If you have further questions please feel free to contact Isaac Huff, YAC Chair, at I_Huff@superaleja.org or Rebecca Hare, YAC Vice-Chair, at harer@iel.org.

To read more about the YAC's past work, check the NCD Web site at http://www.ncd.gov/newsroom/advisory/youth/youth.htm.

NCD Quarterly Meeting and Livable Communities

NCD’s next quarterly meeting will take place October 5–6 at the Crowne Plaza San Francisco Union Square Hotel, 480 Sutter Street, San Francisco, California. The meeting will focus on livable communities and NCD’s report Livable Communities for Adults with Disabilities (http://www.ncd.gov/newsroom/publications/2004/LivableCommunities.htm). This meeting is open to the public and free of charge.