November 1, 1998-November 19, 1999

National Council on Disability
1331 F Street, NW, Suite 1050
Washington, DC 20004-1107

May 15, 2000

202-272-2004 Voice
202-272-2074 TTY
202-272-2022 Fax

This report is also available in alternative formats and on NCD's award-winning Web site (http://www.ncd.gov).

The views contained in this report do not necessarily represent those of the Administration, as this document has not subjected to the A-19 Executive Branch review process.

LETTER OF TRANSMITTAL

May 15, 2000

The President
The White House
Washington, DC 20500

Dear Mr. President:

On behalf of the National Council on Disability (NCD), I am pleased to submit NCD's National Disability Policy: A Progress Report, as required by Section 401 (b)(1) of the Rehabilitation Act of 1973, as amended. The report uses as benchmarks the recommendations for change made by disability leaders from throughout the country and captured in the 1996 NCD document Achieving Independence. These recommendations--elaborated upon in the ensuing annual Progress Reports--reflect a wide array of public policy areas designed to advance inclusion, empowerment, and independence of people with disabilities of all ages from diverse backgrounds consistent with the vision of the Americans with Disabilities Act of 1990 (ADA).

The attached report covers the period November 1, 1998, through November 19, 1999, the end of the 1st Session of the 106th Congress. It reviews federal policy activities by major issue areas, noting progress where it has occurred and making further recommendations where necessary. The recommendations apply to the executive and legislative branches of the Federal Government and in some instances apply to both.

NCD believes that Americans with disabilities have witnessed incremental expansion of self-sufficiency and inclusion this past year. However, far too much of our time is spent in sustaining the bedrock civil and human rights protections of the past 30 years against attempts to weaken laws such as ADA and the Individuals with Disabilities Education Act. The change in responsibility for the development of policy and program implementation from the Federal Government to state government offers opportunities for innovation. At the same time it adds tension and complexities to policy for people with disabilities who rely on such programs as Social Security benefits, vocational rehabilitation, Medicaid, Medicare, special education, and workforce development.

Thank you for the opportunity to play the independent role that our mission requires and to offer this objective assessment of progress in the past 12 months. We hope these recommendations will serve you well in the remaining months of your Administration and as we prepare to celebrate the tenth anniversary of ADA.

We also call on you to work with leaders in Congress and the next Administration to forge a disability agenda that brings children and adults with disabilities into the mainstream of American life.

NCD stands ready to work with you and stakeholders inside and outside the government to see that the public policy agenda set out in the attached report, in Achieving Independence, and in other NCD reports is implemented.

Sincerely,

Marca Bristo
Chairperson

(The same letter of transmittal was sent to the President Pro Tempore of the U.S. Senate and the Speaker of the U.S. House of Representatives.)

NCD MEMBERS AND STAFF

Members

Marca Bristo, Chairperson
Kate Pew Wolters, First Vice Chairperson
Hughey Walker, Second Vice Chairperson
Yerker Andersson, Ph.D.
Dave N. Brown
John D. Kemp
Audrey McCrimon
Gina McDonald
Bonnie O'Day, Ph.D.
Lilliam Rangel-Diaz
Debra Robinson
Shirley W. Ryan
Michael B. Unhjem
Rae E. Unzicker
Ela Yazzie-King

Staff

Ethel D. Briggs, Executive Director
Jeffrey T. Rosen, General Counsel and Director of Policy
Mark S. Quigley, Public Affairs Specialist
Kathleen A. Blank, Attorney/Program Specialist
Geraldine Drake Hawkins, Ph.D., Program Specialist
Martin Gould, Ed.D., Research Specialist
Susan Madison, Fellow
Pamela O'Leary, Interpreter
Allan W. Holland, Accountant
Brenda Bratton, Executive Secretary
Stacey S. Brown, Staff Assistant
Carla Nelson, Office Assistant

CONTENTS

Executive Summary

Public Policy 2000 Platform

Introduction

Progress, Concerns, and Recommendations

A. Disability Demographics and Disability Research

1. Census 2000
2. Demographics
3. Research Challenges and Recommendations

B. Civil Rights

1. Voter Registration and Voting
2. Supreme Court Rules on a Significant Number of ADA Cases
3. Hate Crimes
4. Enforcement
Equal Employment Opportunity Commission
Department of Justice
Department of Housing and Urban Development
Civil Rights Needs of Psychiatric Survivors

C. Education

1. IDEA
a. IDEA'97 Regulations
b. NCD Town Meeting on the Monitoring and Enforcement of IDEA
c. Garrett F. Supreme Court Decision
d. Charter Schools
e. IDEA Amendments
f. Juvenile Justice Bill Amendments to IDEA
2. Elementary and Secondary Education Act
3. Ed-Flex
4. Postsecondary Education Initiatives for Students with Disabilities

D. Health Care

1. Protections in Managed Care
2. Medicaid Buy-In
3. Medical Information Privacy
4. Physician-Assisted Suicide and Improving Pain Management

E. Long-Term Services and Supports

1. MiCASSA
2. Olmstead v. L.C.
3. Administration efforts
4. Child Care
5. Children's Health Insurance Program

F. Youth

1. Youth Task Force
2. The 1999 National Leadership Conference for Youth with Disabilities

G. Immigrants and Racial and Ethnic Minorities with Disabilities

1. White House Forum on Disability and Cultural Diversity
2. The President's Initiative on Race
3. Restoration of Legal Aliens' Eligibility for Disability and Health Benefits

H. Social Security Work Incentives and SSA and Medicare Solvency

1. Work Incentives Improvement Act
2. Social Security Solvency
3. Medicare Reform

I. Employment

1. The Workforce Investment Act of 1998
2. Job Training and Vocational Rehabilitation
3. Substantial Gainful Activity Rule Revised
4. Social Security Administration Next Steps
5. Tax Credit
6. Presidential Task Force on the Employment of Adults with Disabilities
7. Federal Government's Commitment to Hire People with Disabilities

J. Welfare-To-Work

1. Federal/State Efforts
2. Welfare Recipients with Disabilities

K. Housing

1. Section 8 Mainstream Housing Opportunities for Persons with Disabilities Program
2. Home Ownership
3. Visitability
4. Compliance with Section 504 of the Rehabilitation Act by HUD and Its Grantees

L. Transportation

1. NCD Air Travelers Report
2. DOT Action in Response to NCD Report
3. Over-the-Road Bus Rule
4. Greyhound Settlement

M. Technology and Telecommunications

1. Section 508 of the Rehabilitation Act Amendments
2. Federal Communications Commission
3. Research and International Developments

N. International Issues

1. World Bank
2. U.S. Department of State
3. U.S. Agency for International Development
4. Organization of American States

Conclusion

Appendix

Mission of the National Council on Disability

In 1999, public policy results in an unemployment rate for people with disabilities exceeding 70 percent. Public policy and expenditures give priority to institutional placements and segregated housing over independent living with appropriate support services. For households including youth with disabilities, 68 percent of the households had incomes of less than $25,000, while in the general population--households with nondisabled youth--only 18 percent had incomes of less than $25,000. A majority of the nation's 6 million students with disabilities are not receiving special education and related services in regular education environments. State and local governments are challenging the constitutionality of civil rights under the Americans with Disabilities Act (ADA).

Future public policy affecting health care, work, transportation, technology, and all other aspects of the lives of all Americans must be directed by the principles of inclusion, independent living, economic self-sufficiency, and civil rights protections in law that are protections in fact. The third edition of National Disability Policy: A Progress Report by the National Council on Disability (NCD) identifies the painfully incremental public policy changes that occurred in the past year that support these principles.

On December 17, 1999, President Clinton signed the Work Incentives Improvement Act (WIIA), the last act to become law in the millennium. This legislation gives people with disabilities the opportunity to move into employment and reduce their dependence on benefits and other assistance. The WIIA improves access to health care by (1) expanding states' ability to provide a Medicaid buy-in to people with disabilities who return to work; and (2) extending Medicare coverage for people with disabilities who return to work. The WIIA also attempts to improve access to health care by creating a new Medicaid buy-in demonstration to help people with a specific physical or mental impairment that is not severe enough to qualify for health assistance, but is likely to lead to a severe disability in the absence of medical treatment.

In addition, the WIIA will modernize the employment services system by creating a "ticket to work and self-sufficiency" that will enable Supplemental Security Income or Social Security Disability Insurance beneficiaries to go to any public or private provider for vocational rehabilitation.

The Federal Communications Commission issued final rules for implementation of Section 255 of the Telecommunications Act of 1996 that require manufacturers of telecommunications equipment and providers of services to address the needs of persons with disabilities as they design, develop, and fabricate their products and services. It allows individuals with disabilities to be a part of the technology revolution driving economic growth in the next century.

With the relentless oversight of NCD, the Department of Transportation (DOT) issued a final rule that ensures over-the-road bus service for passengers with disabilities. An agreement between the Department of Justice and Greyhound Lines, Inc., brings the largest provider of such services into compliance with DOT regulations. An NCD report on inadequate enforcement of the Air Carriers Access Act (ACAA) brought new DOT regulations eliminating caps for damage to wheelchairs and other assistive devices and allowing individuals to recover burdensome repair or replacement costs if their wheelchairs are lost or damaged in flight. DOT also charged Continental Airlines with violating the ACAA.

Final regulations for the Individuals with Disabilities Education Act, as reauthorized in 1997, were issued and became effective on May 11, 1999.

Important disability policy issues remain unresolved. Solid leadership and commitment by enforcement agencies, as well as adequate investment to enforce our civil rights laws, are needed to help make sure that protections in law are protections in fact. This is directed to the enforcement responsibilities of the Equal Employment Opportunity Commission and the Department of Justice on ADA and Title V of the Rehabilitation Act, the Department of Housing and Urban Development on fair and nonsegregated housing, and the Department of Transportation on various transportation access laws.

A strong Patients' Bill of Rights must be enacted. Legislation must be enacted to allow people with disabilities to have a real choice about where they receive certain types of Medicaid long-term services and supports. Also high on the reform agenda are the Social Security and Medicare programs, both critical programs to people with disabilities and both threatened with long-term financing problems.

One of the fundamental civil rights of Americans is exercising the right to vote for their representatives and leaders at all levels of government. The year 2000 represents a critical year in which a new President will be chosen, as well as the membership and subsequent leadership of Congress. Candidates for these offices are encouraged to establish their agendas to include individuals with disabilities, with policies supporting the bipartisan principles of inclusion, independent living, economic self-sufficiency, and civil rights protections in law that are protections in fact.

The Public Policy 2000 Platform is a nonexhaustive set of statements to inform the policy visions of potential new leaders in Washington, DC, and across the country. Individuals with disabilities, advocates, and parents are looking for vision and platform statements from potential Presidential and congressional leaders that advance the independence, full participation, and productivity of people with disabilities. In exercising one of the fundamental rights in a democratic society--voting--these Americans are looking for specifics on how we:

Enforce human and civil rights laws protecting individuals with disabilities, including the Americans with Disabilities Act, the Individuals with Disabilities Education Act, Title V of the amended Vocational Rehabilitation Act, the Fair Housing Act, Section 255 of the Technology Act, and the Air Carriers Access Act.

• Preserve and enforce the federal commitment to quality education for all children, including children with disabilities.
  
  
• Establish a system of health care that supports individualized care needs of people with disabilities, continued work opportunities, prevention of secondary conditions, and long-term care supports that allow individuals to live in their homes or in the least restrictive environment.
  
  
• Create a continually improving accessible environment in physical structures and pathways, transportation, and technology utilizing the concepts of universal design.
  
  
• Ensure that generic education, health, workforce development, housing, and other programs in which authority for development of service systems has been substantially returned to the states serve individuals with disabilities.
  
  
• Ensure a secure funding base for existing programs serving individuals with disabilities through the next decade under the goals and spending limits of the Balanced Budget Act of 1998.
  
  
• Identify the key factors that need to be addressed to significantly reduce the 75 percent unemployment rate of individuals with disabilities.
  
  
• Take national and international steps to ensure access to technology and participation in the global technological economy.
  
  
• Establish a foreign policy that supports the goals of access, civil and human rights, inclusion, and poverty reduction of individuals with disabilities throughout the world.

In the new century, America will realize even more of its promise because we have unleashed the promise of more Americans.

--President William Clinton, at the signing
of the Work Incentives Improvement Act of
1999.

The most significant legislative achievement for people with disabilities of the past year was the milestone passage of the Work Incentives Improvement Act of 1999. Enactment of this employment initiative will facilitate and catalyze the spirit of equality, justice, and opportunity embodied in the Americans with Disabilities Act (ADA). At the signing ceremony on the site of the FDR Memorial, President Clinton said:

Clearly, this is the most significant advancement for people with disabilities since the Americans with Disabilities Act almost a decade ago. It continues our administration's efforts to replace barriers to opportunity with policies based on inclusion, empowerment and independence.

The efforts of several years and sessions of Congress came to fruition when some of the major, ongoing barriers to work were addressed in the legislation. Having captured the attention of people with disabilities, their families, and advocates across the country, a bipartisan, bicameral effort was fueled by the hard work of disability advocates and the bills' chief sponsors and their staffs. Designed to enhance the employment of people with disabilities, this law has five major features: health insurance improvements--at the option of states; ticket-to-work and self- sufficiency; work incentive enhancements; new work incentive service structure; and a work incentive demonstration authority.

WIIA, along with the Workforce Investment Act of 1998, can be models for the new millennium of customer-focused, multi-agency partnerships to revamp public and private systems that help people achieve gainful, competitive employment. Most prominent among the barriers to employment that the Act removes is the disincentive to work caused by inconsistent national policies; for example, if a person with a disability gains employment she loses health and other benefits. This legislation will enable individuals with disabilities to go to work without losing their eligibility for Medicare and Medicaid. However, states have a choice whether or not to participate in this elective program. Disability advocates recognize the opportunity and responsibility to promote the benefits of the law's provisions and ensure that states elect to participate and successfully implement the Act. The Presidential Task Force for the Employment of Adults with Disabilities "push(ed) forward the message to all stakeholders, including the Administration, Congress, Governors, State and local officials, people with disabilities, employers, and other interested parties: The Time for Action is Now." The Task Force's second report to the President laid out an ambitious set of recommendations to increase the employment rate of people with disabilities. Recognizing that the era of isolation and specialized services is over, the Task Force promoted progressive changes in generic employment and training systems and supported various departmental initiatives to build the capacity of these agencies to serve people with disabilities successfully.

The Federal Communications Commission put rules and policies for implementation of Section 255 of the Telecommunications Act of 1996 into place with the issuance of final regulations. The statute and the regulations require manufacturers of telecommunications equipment and providers of services to address the needs of persons with disabilities as they design, develop, and fabricate their products and services. It allows individuals with disabilities to be a part of the technology revolution driving economic growth in the next century.

Increased funding for civil rights enforcement proved beneficial in lowering the backlog of complaints at the major enforcement agencies, the Equal Employment Opportunity Commission, and the Department of Justice, as well as in finding new enforcement strategies against discrimination toward individual with disabilities.

Final regulations for the Individuals with Disabilities Education Act, as reauthorized in 1997, were issued and became effective on May 11, 1999.

Transportation policy supporting individuals with disabilities included the April 1, 1999, publication of a final rule that ensures over-the-road bus service for passengers with disabilities as well as an agreement between the Department of Justice and Greyhound Lines, Inc., which will bring the nemesis of the disability community into compliance with Department of Transportation (DOT) regulations. Current DOT regulations permit carrying riders, but require Greyhound to provide life-equipped bus service on 48 hours' notice beginning in October 2001. Funds from the Federal Transit Authority are being made available for training and incremental capital costs in making over-the-road buses wheelchair-accessible.

Partially in response to a National Council on Disability (NCD) report on inadequate enforcement of the Air Carriers Access Act (ACAA), DOT issued new regulations eliminating caps for damage to wheelchairs and other assistive devices by allowing individuals to recover burdensome repair or replacement costs if their wheelchairs are lost or damaged in flight. DOT also charged Continental Airlines with violating ACAA.

While these victories represent a persistent, but hauntingly slow, pace for disability policy, several issues covered in all our Progress Reports remain unresolved. Health care initiatives--that now have broad-based bipartisan support--must receive action during the Second Session of the 106th Congress. A strong Patients' Bill of Rights must be enacted.

On November 16, 1999, the Medicaid Community Assistance Services and Supports Act was introduced in the Senate as bill number S. 1935, co-sponsored by Senators Tom Harkin (D-Iowa) and Arlen Specter (R-Pennsylvania). The bill allows people with disabilities to have a real choice about where they receive certain types of Medicaid long-term services and supports. It also provides grants to the States to assist them as they redirect Medicaid resources into community-based services and supports. Supported by the U.S. Supreme Court decision in Olmstead v. L.C., NCD calls for the nationwide reform of long-term care services in the least restrictive environment that this legislation provides.

Other important health care initiatives include medical records privacy protections, health care options further empowering Americans with disabilities to work free from concern of being uninsured, increased funds for children's health insurance outreach, and support services and coverage of legal immigrants.

Also high on the reform agenda are the Social Security and Medicare programs, both critical programs to people with disabilities and both threatened with long-term financing problems. Increasingly, advocacy groups of and for people with disabilities are participating in the ongoing discussions, a trend NCD is pleased to witness.

At the dawn of a new millennium, many Americans are re-evaluating how they live, learn, work, and play. It is a natural time to question whether the systems that comprise America's public and private service provision are characterized by policies, programs, products, and practices that empower and include all Americans. During the second half of the past century, developments in public policy led to unprecedented statutory affirmation of the civil rights of people with disabilities, raising expectations of access, inclusion, and participation in the mainstream of American society. NCD believes that now is the time to transform systems to make good on the promise.

This report, which updates the Progress Report issued by NCD in 1998, will describe significant policy developments in the past year and offer recommendations for the President and the Members of the 106th Congress of the United States of America.

PROGRESS, CONCERNS, AND RECOMMENDATIONS

A. DISABILITY DEMOGRAPHICS AND DISABILITY RESEARCH

1. Census 2000

In Achieving Independence, the National Council on Disability (NCD) recommended that all federal statistical activities that include data collection and reporting for other groups, such as minorities and women, include the category of people with disabilities, using definitions based on the Americans with Disabilities Act (ADA). Based on in-depth results of a multi-agency working group, which included the Census Bureau, recommendations were made to Congress to include a new disability question set in Census 2000. Questions are now integrated into Census 2000. This milestone accomplishment will yield critical information. Twenty percent of Americans have some type of disability and about 10 percent have a severe disability. The law requires the Census Bureau to ask about disability; the resulting statistical information supports programs that help people with disabilities. The 2000 Census will ask three questions in the long form, sent to one in every six households. When populations are sparse, in rural areas or are residing on reservation land, the frequency of surveys may increase. The three questions cover general areas of defining disability, age, and ability to function with a limitation:

1. The kind of disability and its limitation on essential function of daily living;

2. The limitation to work resulting from disability; and

3. The age whether over 16 in the year 2000 or under 15 in the year 2000 and the limitation the disability may effect on mobility/independence.⁽¹⁾

NCD emphasizes the importance of individuals with disabilities participating in Census 2000, when the nation will count the general population and include disability issues as a critical aspect of American demographics.

2. Demographics

The National Institute on Disability and Rehabilitation Research (NIDRR) at the Department of Education (DOED) has published an extensive Chartbook on Work and Disability in the United States in 1998. Both NIDRR and the Social Security Administration published The Summary of Data on Young People with Disabilities in 1999. These two sources draw on data from sources such as the National Health Interview Survey, the National Center for Education Statistics, the Current Population Survey, and the Survey of Income and Program Participation.

Summary Data Highlights

• Among the 25.1 million people 15 to 21 years of age, 12.1 percent have a disability, and 3.2 percent have a severe disability.
  
  
• The head of household's educational attainment was significantly lower for youth with disabilities. Parents or guardians who had not completed high school were heads of household for 41 percent of youth with disabilities. By comparison, the heads of households who had not completed high school for youth ages 12 to 17 in the general population was 22 percent.
  
  
• Typical household income for youth with disabilities was considerably lower than for youth in the general population. For 35 percent of the youth with disabilities, household income was less than $12,500, compared with the general population of youth age 12 to 17, where 18 percent of the households had incomes of less than $12,500. For households including youth with disabilities, 68 percent of the households had incomes of less than $25,000, while in the general population, households with nondisabled youth, only 18 percent had incomes of less than $25,000.
  
  
• In 1987, about half of all youth with disabilities lived in households that were receiving benefits from at least one public source. Food Stamps comprised 24 percent, and Medicaid or other state-supported health benefits comprised 22 percent.
  
  

The Chartbook on Work and Disability in the United States, 1998 reported the following:

• 32.1 million working age people, ages 15-64, have a disability. Of these, severe disabilities were reported by 14.9 million (8.7 percent).
  
  
• In the age group 18 to 69 years old, statistics by race and ethnic origin were as follows:
  

• The Chartbook reports substantially lower monthly earnings income for working people with disabilities as compared to the working nondisabled:

3. Research Challenges and Recommendations

The challenge ahead is for data and research to meet the decisionmaking needs of policymakers. In data collection and research, what the person with a disability experiences within the environment is an important perspective. The context of one's life determines the success of choice and integration.

NCD recommends that the federal research community emphasize cross-cultural studies and the experiences the environment presents to people with disabilities in all age brackets. NCD recommends that the Interagency Committee on Disability Research, required by the reauthorized Rehabilitation Act, be provided with adequate resources.

"We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain inalienable rights." The United States Congress and the President have recognized the fundamental rights of people with disabilities to make choices, pursue meaningful careers, live independently, and participate fully in all aspects of society.

--President George Bush, at the signing
of the Americans with Disabilities Act
into law, July 26, 1990.

Overseeing civil rights protection of individuals with disabilities is a vital responsibility of NCD. The 1996 Achieving Independence report overwhelmingly set improved enforcement of civil rights protections within its top priorities. In response, NCD established the "Unequal Protection Under the Law" series. The multiple-year series provides independent analyses of the federal enforcement of existing civil rights laws, including ADA, Section 504 of the Rehabilitation Act, the Individuals with Disabilities Education Act (IDEA), the Fair Housing Amendments Act, and the Air Carriers Access Act (ACAA). During the period of this progress report, NCD released its first statute-specific analysis of the ACAA (March 1999). This report will be discussed in the transportation section of this report.

The following section of the report, along with the education, technology, and transportation sections, includes NCD's analysis of specific developments in civil rights law, the courts' construction of that law, and policy during the covered period. It also reviews enforcement of existing civil rights statutes for individuals with disabilities by the primary enforcement agencies with those responsibilities. No American in the 21st century should have to face discrimination when it comes to finding a home, getting a job, going to school, or securing a loan. Solid leadership and commitment by enforcement agencies, as well as adequate investment to enforce our civil rights laws, are needed to help make sure that protections in law are protections in fact.

Agencies with primary enforcement responsibilities for civil rights for individuals with disabilities include:

• Department of Justice, Civil Rights Division. Adequate funding and leadership would permit the Justice Department to expand significantly investigations and prosecutions of criminal civil rights cases (including hate crimes and police misconduct), fair housing and lending cases, and the Division's enforcement of ADA.
  
  
• Equal Employment Opportunity Commission (EEOC). Major resources must be dedicated to reducing the backlog of private sector cases and improving the federal EEO complaint process for all protected classes, including individuals with disabilities.
  
  
• Department of Housing and Urban Development's (HUD) Fair Housing Initiatives. Adequate resources would support HUD's efforts to continue its review of policies needed to reduce housing discrimination against individuals with disabilities. Such resources would support the final year of a three-year, audit-based housing discrimination study being conducted in 20 communities around the country that includes specific questions on accessibility for individuals with disabilities.
  
  

But first, the report looks at the fundamental civil right necessary in a democracy: the right to vote. It also identifies the critical nature of this right in the coming election year.

1. Voter Registration and Voting

One of the fundamental civil rights of Americans is exercising the right to vote for their representatives and leaders at all levels of government. The year 2000 represents a critical year in which a new President will be chosen, as well as the membership and subsequent leadership of Congress. Other critical policy decisions and directions will be in the hands of the new President and Congress, including (1) reapportionment of congressional districts for the next decade, based upon the 2000 Census, and (2) the appointment of new Supreme Court Justices who will determine the trend in judicial decisions for many years to come. These actions will determine how federal civil rights protections are going to be judicially decided well into our lifetimes.

Efforts to improve the access of individuals with disabilities to the entire voting process have been enacted in the past two decades. Public Law 103-31, the National Voter Registration Act (NVRA), established a national voter registration procedure for federal elections that permits quick, convenient registration at motor vehicle and other state agencies. It was the intent of Congress to specifically encourage voting by people with disabilities who traditionally have been left out of voter registration activities. Section 7(a)(2)(B) of this Act requires each state to designate agencies for registration of voters including "offices...that provide services to persons with disabilities."

A review by NCD of the implementation of NVRA by state vocational rehabilitation agencies, who serve as many as 650,000 new individuals with disabilities a year, found that implementation of this law by states is inconsistent and poorly coordinated. Significant differences in agency attitude toward proactively implementing the Act were found. This included the level of commitment and practices in advising individuals of their opportunity to register to vote, training staff on their work responsibilities under NVRA, and assigning NVRA management and performance oversight among staff at all levels of the agency. The NCD report offers recommendations that have been successfully enacted in agencies (http://www.ncd.gov/newsroom/publications/voter.html).

NCD encourages all public disability service agencies, including special education agencies, to vigorously offer this public service to ensure that registering and voting are made easier for individuals with disabilities. NCD encourages bipartisan national, state, and local voter registration and get-out-the-vote initiatives for individuals with disabilities and their families and advocates. NCD reiterates its challenge to the President and Congress to enact legislation amending the 1984 Voting Accessibility for the Elderly and Handicapped Act. Such amendments would include the recognition of the right of all individuals to vote independently, guaranteed accessibility to all stages of the electoral process (from voter registration to election-day practices), and meaningful technical assistance and enforcement mechanisms to ensure the right to vote.

2. Supreme Court Rules on a Significant Number of ADA Cases

The U.S. Supreme Court continued its hearing of cases interpreting ADA, beginning in the first year of the 1998-1999 term. Overall, concerns raised in several Supreme Court decisions, caution must be exercised in interpreting these new rulings, which represent mixed results for the civil rights of individuals with disabilities. To realize the promise of ADA, disability legal advocates and the community must also follow the rulings with vigorous new strategies.

Olmstead v. L.C.

The Supreme Court issued a watershed opinion regarding the proper construction of the anti- discrimination provision contained in the public service portion (Title II) of the ADA in Olmstead v. L.C. (138 F.3d.893.119 S. Ct. 633). The Court specifically confronted the question of whether the proscription of discrimination may require placement of individuals with mental disabilities in community settings rather than in institutions. The Court answered the question with a qualified yes.

For the disability community, the Supreme Court's opinion in Olmstead v. L.C. represents a victory with strings attached. The L.C. opinion is the most significant ADA decision acknowledging that unjustified isolation is a form of discrimination under the ADA's integration mandate. The L.C. decision expands options for individuals who are currently in state mental institutions because it affirms a right for an individual to receive community-based services. As the Court noted: "Institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life and cultural enrichment."

The Court further stressed that confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.

However, the Court also ruled that this action hinges on whether the "state's treatment professionals have determined that community placement is appropriate, the transfer from the institutional care to a less restrictive setting is not opposed by the affected individuals, and placement can be reasonably accommodated, taking into account the resources available to the state and needs of others with mental disabilities."

NCD commends the court in its determination that unjustified isolation is properly regarded as discrimination when it is based on disability. The Department of Health and Human Services is commended for its letter to state Medicaid Directors and others emphasizing the Court's suggestion that a state could establish compliance with Title II of ADA if it demonstrates that it has (1) a comprehensive plan for placing qualified individuals with disabilities in less restrictive settings, and (2) a waiting list that moves at a reasonable pace not controlled by the state's endeavors to keep its institutions fully populated.

NCD recommends that states involve institutionalized individuals with disabilities in the development of the comprehensive plan with key principles and practices that should be considered. These principles and practices would address issues such as rendering criteria for community placement, lessening the subjectivity of treatment officials, and the chances of state funding allocations taking precedence over individualized planning. Clarification is needed of what resources must be considered by the state as causing an inequitable burden, as well as many other issues.

Sutton v. United Airlines, Albertsons Inc. v. Kirkingburg, and Murphy vs. United Parcel

The Supreme Court ruled on the "definition of disability" in Sutton v. United Airlines (130 F.3d 893, 119 S. Ct. 2139), Albertsons Inc. v. Kirkingburg (143 F.3d 1228, 119 S. Ct. 2162), and Murphy vs. United Parcel (141 F.3d 1185, 119 S. Ct. 1331), stating that ADA does not cover those persons with correctable impairments. If a person does not experience a substantial limitation in a major life activity when using a mitigating measure such as medication, glasses, or other corrective devices, then that person is not considered disabled under the law. In Albertsons Inc., the Court ruled that an employer who requires an employee as part of a job qualification to meet applicable federal regulations does not have to justify enforcing those regulations, even if there is an experimental waiver program. These rulings unfortunately restrict coverage for people with epilepsy, diabetes, and other serious long-term impairments.

The three cases involved people with poor uncorrected vision, monocular vision, and hypertension who were challenging discriminatory employer policies that unfairly excluded them based on their impairments. NCD believes that, in deciding that these people fall outside the civil rights protections of ADA because their conditions are correctable, our highest court has left many people with treatable conditions such as epilepsy, diabetes, and bipolar disorder outside the law's protection as well. Anyone who is functioning well with their disability is now at risk of losing civil rights protections as a result of the Supreme Court's "miserly" construction, to use Justice Stevens' characterization in his eloquent dissent.

One of the core findings in ADA is that "disability is a natural part of the human experience." This is a powerful statement. "Disability" should not be interpreted by the Supreme Court to exclude the many people whose conditions in their natural state result in significant impairments in functioning but who can function well with medication, assistive devices, or other mitigating measures. The people who would be left out nonetheless will continue to encounter bigotry and attitudinal barriers when they are turned down for jobs or are passed over for promotions.

When Congress defined disability in ADA, they intentionally used the inclusive, flexible definition that has been in place for many years under the Rehabilitation Act. The ADA definition includes not just people with physical or mental impairments that substantially limit at least one major life activity, but also people with a history of such impairments, and people who are regarded by others as having such impairments.

If Congress wanted to limit coverage to people in wheelchairs, blind people, and deaf people, they certainly could have. Instead, Congress followed the advice of NCD and others and incorporated an inclusive definition of the protected class that would reach the many and varied ways that fears, myths, and stereotypes come into play to unfairly limit people based on their physical or mental conditions as opposed to their work experience and proven abilities.

Cedar Rapids School District v. Garret F.

In Cedar Rapids School District v. Garret F. (106 F.3d 822, 119 S. Ct. 37), the Supreme Court affirmed the right of all students with disabilities to attend school when they are medically able to do so, regardless of the nature or extent of the health-related services they may require during school hours, as long as those services are not required to be provided by a physician.

The Court held that schools are required by IDEA to provide students with nursing and/or other health-related services during the school day. Garrett F. provides students in need of medical services an equal opportunity to attend school alongside their peers. To the extent that in-school health services are needed, they must be provided. Thus Garrett F. provides children with disabilities who need in-school health-related services meaningful access to public schools

NCD encourages state governors and state attorneys general to embrace and enforce the civil rights requirements of ADA more vigorously and to seek more cost-effective ways to bring the instruments of state and local government into compliance.

Cleveland v. Policy Management Systems Corp.

In Cleveland v. Policy Management Systems Corp. (120 F.3d 513, 119 S. Ct. 900), the Supreme Court unanimously held that pursuit and receipt of Social Security Disability Insurance (SSDI) benefits does not automatically stop a recipient from pursuing an ADA claim or create a strong presumption against success under ADA. Key distinctions were made between ADA and SSDI claims. NCD applauds the unanimous decision of the Court, bringing to an end the dilemma the "estoppel" issue had held for individuals being unable to pursue their civil rights while seeking the assistance they needed to live while unemployed.

Wright v. Universal Maritime Service Corp.

Finally, the Supreme Court ruled in Wright v. Universal Maritime Service Corp. (121 F.3d 702, 118 S. Ct. 900) that a collective bargaining agreement general arbitration clause does not require an individual to use the arbitration procedure for alleged violation of the ADA. The individual may proceed to court with his anti-discrimination claim.

3. Hate Crimes

Federal authorities currently may prosecute violent civil rights abuses when state authorities are unable or unwilling to do so. However, federal jurisdiction is triggered only when two circumstances are present. First, the impetus for the crime must have been based upon the victim's race, national origin, or religion. Second, either the crime must have occurred while the victim was enjoying a federally protected right--such as voting or serving on a jury--or the crime must have interfered with the victim's ability to engage in a similar right.

The Hate Crimes Prevention Act of 1999, added as an amendment by the Senate to the Commerce, Justice, and State appropriations bill, would extend the present hate crimes statutes to cover disability, gender, and sexual orientation. The amendment would have allowed federal officials to prosecute hate crimes even when the victim is not engaged in "federally protected activity." President Clinton vetoed the bill to fund the Departments of Commerce and State because, amongst other reasons, it didn't include the Hate Crime Prevention Act provisions. The final appropriations for these agencies negotiated between congressional leadership and the President did not include the hate crime protections. NCD believes we must do more to root out forces of hate and intolerance and encourages the 106th Congress and the President to reach agreement on strong hate crime protections to those in our society who are still threatened by violence simply because of who they are.

4. Enforcement

Equal Employment Opportunity Commission

Chair Comments on Supreme Court Decisions

EEOC chair, Ida L. Castro, has summarized the Supreme Court's decisions this past year regarding cases related to the Americans with Disabilities Act as significantly narrowing the scope of those covered under ADA. However, the decision affirms EEOC's standard of an individualized approach to the assessment of coverage under ADA. Castro stated, "(P)eople who use mitigating measures may still be substantially limited in major life activities and thus enjoy the protection of the ADA." She also noted, "the Court did not suggest that any conditions are per se excluded from coverage under ADA, and the Court did not disturb the principle that employers are required, as before, to provide reasonable accommodations for people with disabilities and may not otherwise discriminate against them." EEOC staff point out that the ADA still protects people with past and perceived disabilities--even if they have no current impairment at all. Many people who experience discrimination on the basis of currently controlled conditions will be protected under these prongs of the statute.

Budget Increases for Enforcement

The Omnibus Appropriation Bill passed by Congress on October 21, 1998, funded the agency at a level of $279 million, consistent with the President's Civil Rights Enforcement Initiative.

EEOC Enforcement Practices

Comprehensive Enforcement Program: During 1999, EEOC began implementing an agency-wide Comprehensive Enforcement Program (CEP) to improve all components of agency operations in both the private and federal sectors. As a result of several years of reform in management of incoming and pending complaints, the pending inventory has been slashed to a 15-year low of 40,234--a 23 percent decline from 52,011 at the close of fiscal year (FY) 1998.

EEOC resolved more cases that impact large groups of individuals. The resolution of systemic cases increased by 67 percent during FY 1999. EEOC resolved 50 such cases, compared to 30 in FY 1998. EEOC filed more lawsuits affecting multiple parties or addressing discriminatory policies. EEOC filed 112 of these suits in FY 1999 compared to 82 in FY 1998.

National Mediation Program: EEOC's National Mediation Program was launched in February 1999 and became fully operational in April 1999. By the end of FY 1999, the agency had nearly tripled the number of successful charge resolutions handled through voluntary mediations to 4,833 (up from 1,631 in FY 1998).

NCD compliments EEOC on its continued efforts toward reducing the pending inventory of private sector charges and lowering the average charge processing time. It is critical that improved complaint processing cut across all protected classes, including individuals with disabilities. ADA charges surrounding failure to hire and to provide reasonable accommodations can be subtle and complex, just as coding and other employer practices proved to be in race-based cases. Continual evaluation of the Priority Charge Handling Process and the new CEP practices must ensure that ADA charges are proportionally among the cases determined meritorious. NCD wants to make sure the increased merit factor rate, those charges that show a favorable finding for the charging party (settlements including mediation, cause resolutions including those litigated, and charge withdrawals with benefits), represents all protected classes. Data currently show the merit factor rate for non-ADA cases as 17.4 percent, while the rate for ADA cases is 13.3 percent. NCD commends the increased use of systemic and multiple party litigation and recommends ADA-based discrimination as a part of the enforcement plan for such litigation.

ADA-Specific Conciliations and Litigation

• A $167,000 settlement in a disability discrimination suit brought under the Americans with Disabilities Act against TMC Transportation of Des Moines, Iowa, on behalf of a former TMC over-the-road truck driver. The suit alleged that TMC violated ADA by refusing to schedule the driver's runs in a way that would accommodate regularly-scheduled medical visits to treat his lupus disease, and by firing him because of the disease rather than returning him to work as a driver.
  
  
• A jury in the disability discrimination case against the Chuck E. Cheese's pizza chain returned its verdict on damages Friday, awarding a record $13 million in compensatory and punitive damages to Donald Perkle. This verdict represents the largest monetary relief awarded by a jury in a case brought by the EEOC under the ADA. The jury found that Chuck E. Cheese's violated the employment provisions of the ADA by discriminating against Mr. Perkle when they fired him because of his disability, mental retardation.
  

Policy Guidance and Regulations

Federal Sector Regulations: On July 12, EEOC issued new regulations (29 C.F.R. Part 1614) to improve the federal equal employment opportunity (EEO) complaint system by eliminating unnecessary layers of review, modifying data collection, utilizing alternative dispute resolution thro ughout the process, and addressing perceptions of unfairness in the system.

ADA Guidance: On March 1, 1999, EEOC released comprehensive policy guidance titled "Reasonable Accommodation and Undue Hardship Under the Americans with Disabilities Act (ADA)." The guidance provides answers to the most frequently asked questions concerning what reasonable accommodations are, when they must be provided, and when employers may refuse to provide them. It points out that providing a reasonable accommodation does not mean excusing poor performance or hiring unqualified people. The guidance also represents the Commission's most complete discussion to date of "undue hardship," which is a limitation on an employer's obligation to make a reasonable accommodation.

NCD commends EEOC for instituting a series of actions to review its own documents that may need to be revised and updated. NCD wishes to work with EEOC and the new Reinventing Government initiative on federal sector civil rights complaint processing practices to ensure that the new Federal Sector Regulations adequately collect data on federal employees with disabilities and provide adequate procedural protections.

Department of Justice

ADA Penalties Adjusted for Inflation

The Department of Justice (DOJ) may file lawsuits in federal court to enforce ADA and may obtain court orders including compensatory damages and back pay to remedy discrimination. As of September 29, 1999, the limit on possible penalties has been adjusted upward for inflation to $55,000 for the first violation and $110,000 for any subsequent violation.

Circuits Split on Constitutionality of ADA Suits Against States

DOJ has made concerted interventions in U.S. Courts of Appeals and District Courts in upholding the constitutionality of ADA suits against states and localities. This has become a critical court test, likely to reach the Supreme Court during the second half of the current Court term.

Two more U.S. Courts of Appeals have upheld ADA as appropriate legislation to enforce the equal protection guarantees of the U.S. Constitution. The Second Circuit in Muller v. Costello (997 F. Supp. 299), an employment suit alleging discrimination against a New York State prison, and the Tenth Circuit in Martin v. Kansas (996 F. Supp. 1297), an employment claim against a Kansas prison, ruled that it is constitutional for Congress to permit individuals to directly sue states for ADA violations under Title I because ADA is appropriately tailored to remedy and prevent discrimination against people with disabilities.

On the other hand, the Eighth Circuit in Alsbrook v. City of Maumelle (184 F. 3rd 999 [8th Cir. 1999]) ruled that a Title II suit against the Arkansas Commission on Law Enforcement Standards and Training was unconstitutional because ADA's protections go beyond the equal protection rights guaranteed by the U.S. Constitution. It also ruled for the same reason in DeBose v. Nebraska that a Title I employment suit against Nebraska was unconstitutional. In all four of these cases the DOJ intervened to defend the constitutionality of the ADA. Seven of the eight circuits ruling on this issue so far have upheld the constitutionality of ADA suits against states. As urged by the Department, the U.S. District Court for the District of Connecticut also upheld the constitutionality of a Title II suit against the Connecticut Department of Corrections in Hicks v. Armstrong.

The Department sought to intervene in two additional district court cases, Campos v. San Francisco State University N.D. Cal., 1999 (No. C-97-2326 MMC) and Jeffreys v. New Jersey, in which states are arguing that it is unconstitutional for Congress to permit ADA lawsuits directly against state governments. California and New Jersey assert that Congress lacks authority under the Fourteenth Amendment to subject them to lawsuits under ADA, because ADA's protections go beyond the equal protection rights guaranteed by the U.S. Constitution. The Department, however, believes that ADA is constitutionally appropriate legislation to remedy the history of pervasive discrimination against people with disabilities.

NCD commends DOJ in its efforts on this constitutional issue critical to the entire meaning of ADA and Section 504 regarding the civil rights of individuals with disabilities in their relationships with state and local units of government. NCD encourages the Supreme Court, should they review this issue, to determine that Title II of ADA and Section 504 of the Rehabilitation Act constitutionally apply to state and local governments.

Furthermore, federal judges need to develop greater understanding of the principles of ADA and other disability civil rights laws. NCD recommends to the President and Congress that they work together to identify, appoint, and confirm to the federal bench qualified lawyers and judges with disabilities who have an understanding of the legal and philosophical principles of the disability civil rights movement.

Department of Housing and Urban Development

Laws such as the Fair Housing Act (FHA) are intended to end the unnecessary exclusion of persons with disabilities from the American mainstream and to provide them with the freedom to choose where they wish to live and be free of discrimination in housing. In combination with Section 504 of the Rehabilitation Act, FHA and ADA redress discrimination in housing and in community development programs.

Complaint Investigations

The Department of Housing and Urban Development's (HUD) field offices and state and local governmental agencies that have substantially equivalent laws investigate complaints alleging discrimination based on disability under FHA. Complaints alleging discrimination on the basis of disability filed against both private and federally assisted housing providers now constitute the second highest number of complaints filed with HUD. FHA provides the same or greater remedies to victims of discrimination as Section 504, and a finding of discrimination can render a HUD recipient of funding ineligible for future HUD funding. HUD's policy is that, any time a Title VIII complaint is filed against a recipient of HUD funds, that complaint also is filed under Section 504 as well as the ADA, if the latter applies.

From October 1, 1989, to the close of FY 1998, 2,791 discrimination complaints alleging discrimination under Title VIII and Section 504 and/or ADA were filed with HUD. Of those complaints, HUD successfully conciliated 1,224. A determination of reasonable cause was made in 43 HUD cases. These figures do not include the relatively small number of complaints filed against HUD recipients [?] that allege disability discrimination in employment or a program unrelated to housing, which would be filed only under Section 504 or ADA. During the past five years, there has been a 68 percent increase in the total number of Section 504 cases filed with HUD compared with the previous five years.

Sections 810(f) and 817 of the FHA authorize referral of fair housing complaints to state and local agencies certified to provide substantially the same rights, procedures, remedies, and judicial review as are found in the FHA and to reimburse those certified agencies for effectively processing complaints referred to them. Certified agencies received federal and technical assistance through the Fair Housing Assistance Program (FHAP).

From FY 1991 to FY 1998, a total of 6,016 complaints that alleged housing discrimination based on disability were filed with FHAP agencies under Title VIII. Of those complaints, 96 resulted in cause-type determinations. The number of disability complaints filed with FHAP agencies during the latter half of this eight-year period is more than double the number filed during the previous four years. FHAP agencies conciliated 2,263 cases during the eight-year period and, likewise, conciliated twice the number of cases during the second four years than were conciliated during the first four years. These FHAP conciliations obtained 534 housing units (a 200 percent increase over the first four years) and $3.9 million in relief to complainants (a 767 percent increase over the first four years).

Even though conciliations increased for FHAP agencies during this period, these statistics also point out the concerns of disability housing advocates. Accounting for cause-type determinations and conciliations, 51 percent of the complaints made to HUD and 54 percent of the complaints filed with FHAP agencies remain unresolved or nearly half have been closed without cause. Based upon previous court decisions, HUD developed a guide for all investigators to use in FHA and Section 504 disability fair housing discrimination complaints. A review pointed out inquiries to the nature and severity of an individual's disability and other factors unnecessary to the determination of a person's eligibility for fair housing protection and not ancillary to the facts surrounding the complaint. As a result of discussions with advocates, the HUD Office of Fair Housing and Equal Opportunity (FHEO) has agreed to modifications to the guide questionnaire focusing on the actions of the parties identified in the discrimination complaint.

NCD continues to recommend that HUD use consecutive fiscal year increases in appropriations for fair housing to expand its enforcement of the Fair Housing Act and Section 504 of the Rehabilitation Act on behalf of people with disabilities. To the extent that HUD continues its commitment to doubling enforcement efforts under the Fair Housing Act, NCD recommends that HUD's efforts under section 504 also be doubled. This goal has not been met. The changes in the FHEO guide and questionnaire for Fair Housing Analysts to conduct these enforcement activities are commended.

Through the Real Estate Assessment Center, which reports to the Secretary, HUD continues a three-year systematic review of the physical plants of HUD-financed projects to assess compliance with many different safety and conservation standards. Also being surveyed are all newly constructed multifamily housing (with four or more contiguous units) built since March 1991 (the effective date of the Fair Housing Act's new construction guidelines). As part of this effort, HUD inspectors are assessing compliance with accessibility laws and regulations, such as section 504 of the Rehabilitation Act. Four items are being assessed:

• Is there an accessible route to and from the main floor entrances of buildings inspected (e.g., a level surface to the door and, if there are stairs, a ramp)?
  
  
• Is the main entrance for every building inspected at least 32 inches wide, measured from between the face of the open door and the opposite door jamb?
  
  
• Are there accessible routes to all exterior common use areas (e.g., curb cuts, stairs, ramps, lever-type door handles, pathways at least 36 inches wide)?
  
  
• For multi-story buildings, are the interior hallways to all units and common areas at least 36 inches wide?
  
  

While these questions will not determine whether full access exists, the answers will provide statistically reliable information on the numbers, types, and locations of buildings that do and do not comply with even the basics of the Fair Housing Act. Initial sample survey results have been collected by the Real Estate Assessment Center, but the process for release of the data through FHEO or HUD's Division of Policy Development and Research has not been established. NCD strongly encourages HUD to make the results of this survey public at statistically valid periods throughout the data collection activities. This information could be invaluable in supporting appropriate funding for Mainstream Tenant Based Rental Assistance (TBRA) and the TBRA authorities of the 811 program. It will assist in the development of State Consolidated Plans and local "Public Housing Authority Plans" that adequately address the housing needs of individuals with disabilities.

In March, U.S. Department of Agriculture (USDA) rural Housing Programs representatives opened discussions with advocates regarding fair housing and civil rights for individuals with disabilities in rural USDA-funded rental and home ownership programs. NCD commends USDA in this effort.

Civil Rights Needs of Psychiatric Survivors

A. NCD Albany Conference on Civil Rights for Psychiatric Survivors

NCD conducted a hearing in Albany, New York, in November 1998, to learn more about the problems of psychiatric disability. Psychiatric survivors are routinely deprived of their rights in a way no other disability group has been. At the hearing, NCD heard testimony from mental health professionals, lawyers, advocates, and relatives of psychiatric survivors. However, unlike most investigations on the topic of psychiatric disability, the primary participants in this hearing were psychiatric survivors themselves, who testified passionately and eloquently both about the mistreatment they had experienced or witnessed and their proposals for real and viable change. NCD heard testimony graphically describing how psychiatric survivors have been beaten, shocked, isolated, incarcerated, restricted, raped, deprived of food and bathroom privileges, and physically and psychologically abused in institutions and in their communities. The testimony pointed to the inescapable fact that psychiatric survivors are systematically and routinely deprived of their rights and are treated as less than full citizens or full human beings.

NCD has also concluded that one of the reasons public policy concerning psychiatric disability is so different from that concerning other disabilities is the systematic exclusion of people with psychiatric disabilities from policy making. They must be allowed to speak for themselves in policy-making forums.

Among other recommendations established in the report of the hearing, NCD recommends that the use of involuntary treatments, such as forced drugging and inpatient and outpatient commitment laws, should be viewed as inherently suspect and as incompatible with the principles of self-determination. Public policy should be directed toward establishing a totally voluntary mental health system.

NCD also recommends that aversive treatments, which involve the infliction of pain or the restriction of movement for purposes of changing behavior, should be banned, since they are also incompatible with self-determination principles. Practices that often would be illegal if administered to people without disabilities are routinely used on psychiatric survivors in the name of "treatment." Such practices should shock the consciences of all Americans.

All of the recommendations in NCD's report follow the same basic principles: that people with psychiatric disabilities are, first and foremost, citizens who have the right to expect that they will be treated according to the principles of law that apply to all other citizens. All laws and policies that restrict the rights of people with psychiatric disabilities solely because of their disabilities are at odds with basic principles of law and justice, as well as with such landmark civil rights laws as the ADA.

B. White House Conference on Mental Health and Surgeon General's Report

On June 7, 1999, Tipper Gore chaired the White House Conference on Mental Health that brought together members of Congress and the Administration, people with mental disabilities and their families, mental health providers and advocates, and community, state, private sector, and foundation entities from around the country. The purpose was to announce new proposals and to expand community responses to help those with mental illnesses.

On December 13, 1999, David Satcher, M.D., Surgeon General of the United States, released a comprehensive report on mental health. The report builds on the White House Conference on Mental Health, highlighting mental illness as a public health problem that warrants national concern. The report documents sound scientific evidence for mental disorders and describes a system plagued with treatment barriers, including stigma, discriminatory health insurance practices, and the unavailability of appropriate services. Its final chapter highlights the disparity between science and service delivery and provides the evidence base for future policy initiatives.

Unlike NCD's Report of the Albany Conference, the Surgeon General's report does not adequately address the issue of coercion. NCD shares the view of the Bazelon Center for Mental Health Law that this is especially regrettable because a climate of coercion significantly impedes the help-seeking behavior that is the Surgeon General's principal recommendation to the public.

Efforts continued on the part of the Administration and Congress to increase opportunities for all children to learn to high standards; however, students with disabilities, parents, and advocates across the country still continue to document high levels of noncompliance with IDEA, particularly related to placement in the least restrictive environment, transition services, and the requirements for a free, appropriate, public education (FAPE).

While an amendment to the Juvenile Justice bill eroded certain due process protections under IDEA for dangerous students, another amendment nearly made it federal law that educational services may not cease for any student even if suspended or expelled. The Supreme Court decision in Garrett F. should increase the number of students with disabilities educated in the regular classroom. Finally, reauthorization of the Elementary and Secondary Education Act (ESEA) was not completed, leaving the review and extension of critical education provisions (e.g., school modernization, charter schools) to the second session of this Congress.

1. IDEA

A. IDEA '97 Regulations

Effective May 11, 1999, the final regulations for the IDEA amendments of 1997 appeared in the March 12, 1999, Federal Register. Some of the major issues addressed in the regulations are Individualized Education Programs (IEPs), assessment, discipline, and parent and regular teacher involvement. Prior to 1997, the law did not specifically address general curriculum involvement of students with disabilities. The 1997 amendments and regulations shifted the focus of IDEA to one of improving teaching and learning, with a specific focus on the IEP as the primary tool for enhancing the child's involvement and progress in the general curriculum. NCD strongly encourages local jurisdictions to use the federal regulation as a model in developing their own guidelines for implementing IDEA and incorporating best practices drawing on their local successes.

Also, the final regulations address the IDEA '97 provisions that incorporated prior court decisions and DOED policy that (1) allow schools to remove a child for up to 10 school days at a time for any violation of school rules as long as there is not a pattern; (2) provide that a child with disabilities cannot be long-term suspended or expelled from school for behavior that is a manifestation of his or her disability; and (3) specify that services must continue for children with disabilities who are suspended or expelled from school. Federal policy must support solutions aimed at directing resources toward creating safe and inclusive educational environments; thorough, yet manageable, information management systems; and collaboration between parents and state and local school personnel in meeting the educational needs of all students.

B. NCD Town Meeting on the Monitoring and Enforcement of IDEA

On September 22, 1999, NCD conducted a town meeting in Arlington, Virginia, on the enforcement and implementation of IDEA. More than 100 disability advocates, parents, and children from across the country participated in the meeting intended to highlight the release of the monitoring and enforcement report. NCD recommends that DOED and DOJ recognize and correct the inadequacy of current federal compliance monitoring activity. School systems that fail to provide services required under IDEA are compromising the futures of children with disabilities. Federal authorities must develop more effective monitoring mechanisms to identify and challenge failures to comply. School systems found not in compliance must be held accountable for correcting deficiencies within specified time frames or face sanctions. Where the will to fully implement IDEA is lacking, sanctions must be applied in combination with positive incentives to change resistance to definitive action.

C. Garrett F. Supreme Court Decision

The Court held that schools are required by IDEA to provide students with nursing and/or other health-related services during the school day. (See Civil Rights.)

D. Charter Schools

A letter of informal guidance was issued in fall 1998 by the U.S. DOE D concerning the responsibility of charter schools to provide a FAPE to children with disabilities in accordance with IDEA and Section 504 of the Rehabilitation Act of 1973, as amended. It clarified that charter school programs are considered public school programs with the obligation to provide FAPE and that DOE D has broad discretion as to which enforcement options they may use to ensure full compliance. NCD is concerned that public charter schools are being created in some jurisdictions without actually ensuring that the teachers and administrators are prepared to comply with IDEA, ADA, and section 504 of the Rehabilitation Act when children with disabilities seek to enroll. NCD encourages Congress to fund a study determining the level of compliance of charter schools with IDEA and Title II of ADA. DOED should use the full force of its enforcement powers to provide technical assistance, oversight, and monitoring to the growing number of charter schools to ensure compliance and best practices for educating students with disabilities.

E. IDEA Amendments

Ed-Flex and two bills amending IDEA, H.R. 636 and H.R. 697, were the first of several bills introduced this year that could adversely impact children with disabilities. H.R. 636 would amend IDEA to give schools flexibility in changing the educational placement of children with disabilities by removing the 45-day maximum that a child with a disability can remain in an alternative placement. H.R. 697 would amend IDEA to allow state and local schools to establish discipline policies.

F. Juvenile Justice Bill Amendments to IDEA

IDEA suffered a devastating blow in May 1999, when the Senate voted 74-25 to amend IDEA. The amendment allows the cessation of educational services to students with disabilities who are suspended or expelled from schools for gun and/or firearms offenses.

The IDEA amendment was introduced as part of the Juvenile Justice bill, the Violent and Repeat Juvenile Offender Accountability and Rehabilitation Act. The amendment states that school personnel may expel or suspend a child with a disability for an unlimited amount of time as it would any other child, if that child carries or possesses a gun or firearm to school or to a school function. Further, the school would not be responsible for providing a free and appropriate public education during the period of expulsion.

An amendment was introduced to the Juvenile Justice bill, not IDEA, which would apply to all children and would achieve the intended objective of making schools safer. The amendment passed by voice vote. The amendment would require schools to provide appropriate interventions and services, including mental health services, to all children including children with and without disabilities removed from school for acts of violence.

2. Elementary and Secondary Education Act

ESEA was up for reauthorization this year but the committees did not complete the review and extension in time so it will be taken up in the second session of the 106th Congress. According to DOED, there are eight major themes to the Administration's proposal:

• Academic excellence in high-poverty schools
• High standards in the classroom
• Using educational technology to improve teaching and learning
• Strengthening safe and drug-free schools
• Equity, excellence, and public school choice
• Class-size reduction
• Helping limited English proficient students learn English and reach high standards
• After school programs.

All of these areas are critically important to students with disabilities and their families. NCD encourages the President and Congress to take advantage of the opportunity provided by the ESEA reauthorization to address the need for mainstream education policy to integrate the needs of students with disabilities and students from low-income families so that the educational outcomes of all students may be improved. NCD encourages the President and Congress to use the reauthorization to

• ensure that students with disabilities are meaningfully included in standards- based reform and accountability systems and are expected to meet high standards, with appropriate accommodations;
  
  
• expand parent training and information efforts by building upon and promoting linkages with community-based parent training and information centers funded under IDEA, so that all parents can work together to promote high-quality programming that meets the individual needs of all students; and
  
  
• improve teacher training and professional development to better meet the diverse needs of students in mainstream settings.
  
  

NCD strongly encourages Congress to use this legislative opportunity to amend IDEA to create a complaint-handling process at the federal level to address systemic IDEA violations occurring in a state education agency or local education agency and to provide DOJ with independent authority to investigate and litigate cases brought under IDEA.

School Modernization

Communities across the country are struggling to address critical needs to build new schools and renovate existing ones to make up for years of deferred maintenance, to accommodate rising student enrollments, to help reduce class sizes, and to make sure schools are accessible to all students and well-equipped for the 21st century.

According to a Government and Accounting Office report, one-third of all schools--about schools--need extensive repairs. The average public school in America is 42 years old, and school buildings begin rapid deterioration after 40 years. A growing body of research has linked student achievement and behavior to the physical building conditions, and conditions such as overcrowding have negative impact on the achievement of students. NCD urges the President and Congress to pass legislation designed to provide states and localities the incentives necessary (e.g., School Modernization Tax Credit Bond, the School Renovation Loan and Grant Program) to renovate schools. NCD strongly supports the President's initiative to modernize our schools. NCD recommends that funding to support school modernization must require compliance with Title II of ADA, or a plan to achieve such compliance, thus making the new and renovated schools models of universal design. Thus, all students, teachers, and parents will be able to participate fully in all aspects of the schools of the future.

3. Ed-Flex

The Education Flexibility Partnership Act of 1999 (Ed-Flex) gives states greater latitude in spending federal school aid. The bill makes all 50 states eligible to waive many provisions of ESEA and the Carl D. Perkins Vocational Education Act (Perkins). Ed-Flex passed in the House (330-90) and Senate (98-1) on March 11. An IDEA discipline amendment was attached to the Senate version of the Ed-Flex bill that adds language regarding weapons possession "at school," "on school premises," and "at a school function" to Section 615(k) of IDEA 1997.

The manner in which this provision was added, that is, at the last minute with no debate, was very disturbing to disability advocates and underscores the need for ongoing vigilance to ensure that the civil rights of students with disabilities are not dismantled. Without hearings or a written report, the Senate Committee on Health, Education, Labor and Pensions reported out the Ed-Flex bill. Efforts to recommit the bill for hearings, however, were unsuccessful. Another amendment, dropped later during conference, would allow funding for hiring new teachers included in last year's omnibus spending package to be used on programs in IDEA. A third amendment authorized an additional $500 million for special education.

4. Postsecondary Education Initiatives for Students with Disabilities

Because of significant changes in education laws for persons with disabilities, the proportion of first-time, full-time freshmen with disabilities attending college increased more than threefold between 1978 and 1994, from 2.6 percent to 9.2 percent. The Chronicle of Higher Education reports that 17 percent of students attending higher education programs in this country have a disability. Yet research indicates that students with disabilities are less likely to enroll in postsecondary education than their nondisabled peers. Moreover, when students with disabilities attend postsecondary programs, they are more likely to attend two-year or vocational programs rather than four-year, degree-granting institutions and when they do attend, they are less likely than their nondisabled peers to persist in these programs and graduate.

The U.S. DOED's Office of Postsecondary Education has initiated a discretionary grant program to increase the number of students with disabilities who persist in attaining a four-year degree. Approximately 20 grants were funded in 1999 that provide technical assistance and professional development activities for faculty and administrators in institutions of higher education, in order to provide a quality education to students with disabilities. This program is newly authorized by the Higher Education Act Amendments of 1998 and funded for the first time in FY 1999 at $5 million.

1. Protections in Managed Care

In the 1997-1998 Progress Report to Congress, NCD recommended that the 106th Congress "forge a strong, enforceable ['patient's bill of rights'] in managed care and in "medical rehabilitation." This means that people with disabilities and their families have access to the quality health care they require, and that people with disabilities receive the appropriate level of necessary supports and services from medical rehabilitation professionals.

In the second report of the Presidential Task Force on Employment of People with Disabilities issued on November 15, 1999, titled Re-Charting the Course: If Not Now, When?, the task force recommends the following:

Guaranteed access to emergency room services when and where the need arises; continuity of care protections so that patients will not have an abrupt transition in care if their providers are dropped; access to a fair, unbiased, and timely internal and independent external appeals process to address health plan grievances and to help govern decisions about medically necessary treatments; and an enforcement mechanism that ensures recourse for patients who have been harmed as a result of a health plan's actions.⁽²⁾

Seven major patient protection bills have been introduced in both houses of Congress since January 1999. The major area of conflict for this legislation continues to be the definition of medical necessity. Another major issue for people with disabilities is which entity will decide what will be medically necessary--the physician or the managed care organization. In the 105th Congress, the major conflict was the structure of grievance and appeals.⁽³⁾

NCD recommends to the Congress the formulation of a comprehensive Patients' Bill of Rights that will cover the health care concerns of people with disabilities.

2. Medicaid Buy-In

Under Section 4733 of the Balanced Budget Act, states now have the option to allow individuals with disabilities who start or return to work the ability to purchase Medicaid coverage as their earnings increase, up to 250 percent of the poverty level. Currently, a number of states, including Oregon, South Carolina, Wisconsin, Minnesota, Alaska, and Mississippi, have been approved by the Health Care Finance Administration to amend their State Medicaid Plans to exercise the option of extending Medicaid coverage to eligible working individuals with disabilities. NCD commends the President on his Executive Memorandum that directed the Secretary of Health and Human Services to ensure that governors, state legislators, and state Medicaid directors work with consumer organizations to increase public information about the State "Medicaid Buy-In." NCD also encourages other states to follow the example of the above-noted states to adopt this option in their Medicaid coverage.

3. Medical Information Privacy

There is no comprehensive federal law that protects the privacy of people's health information. The 106th Congress had until June 1999 to develop a health privacy statute, a deadline Congress had imposed on itself in prior legislation. That same legislation requires the Secretary of Health and Human Services to issue regulations by February 2000. Because the regulatory authority of the President, through the Department of Health and Human Services (HHS), is limited, those regulations are limited to privacy protections for medical information stored or transmitted electronically.

With Congress failing to act, the President and HHS Secretary Shalala proposed regulations that would apply to all health plans and many health care providers, as well as to health care clearinghouses such as billing companies. The regulations would (1) limit the nonconsensual use and release of private health information; (2) inform consumers about their right to access their records and to know who else has accessed them; (3) restrict the disclosure of protected health information to the minimum necessary; (4) establish new disclosure requirements for researchers and others seeking access to health records; and (5) establish new criminal and civil sanctions for the improper use or disclosure of such information.

The President indicated that the need for comprehensive federal privacy protections still exists. The HHS-proposed regulations, for instance, do not cover all paper records. They do not directly regulate many entities, including employers, other insurers, or public health agencies--thus allowing for unlimited reuse of information by such entities. Federal legislation is also needed to fortify the penalties and to create a private right of action so that citizens can hold health plans and providers directly accountable for inappropriate and harmful disclosure of information. NCD calls upon the Administration and Congress to complete the job of enacting comprehensive protections of health information.

The Consortium for Citizens with Disabilities, a coalition of approximately 100 national consumer advocacy, provider, and professional organizations that advocate on behalf of persons with disabilities, adopted the following principles:

Federal legislation should statutorily establish an individual's right to privacy with respect to individually identifiable health information, including genetic information. It should prohibit the use or disclosure of individually identifiable health information absent an individual's informed consent. Legislation should guarantee an individual the right to access his or her own health information and the right to amend such information. Such legislation should establish strong and effective remedies for violations of privacy protections. This legislation should provide a floor for the protection of individual privacy rights, not a ceiling. Finally, while protecting individual privacy rights, federal legislation should not impede important clinical and medical research.⁽⁴⁾

NCD concurs with these principles.

4. Physician-Assisted Suicide and Improving Pain Management

NCD finds that the countervailing arguments against permitting physician-assisted suicide outweigh its benefits. In making this finding, NCD notes that the benefits of physician-assisted suicide apply only to the small number of people who actually have an imminently terminal condition; are in severe, untreatable pain; wish to commit suicide; and are unable to do so without a doctor's involvement. Moreover, NCD notes the substanti