Dedication

Colleen Fraser

July 29, 1950 - September 11, 2001

Perhaps no one believed more strongly in the rights of all Americans with disabilities than Colleen Fraser. Colleen was a well-respected activist for community living. She served as Executive Director of the Progressive Center for Independent Living in Ewing, New Jersey, which is a nonprofit, consumer-controlled, community-based organization providing services and advocacy by and for people with all types of disabilities. Colleen was a member of the heroic group of passengers on board the highjacked flight in rural Pennsylvania on September 11. Less than one week earlier, on September 5, 2001, Colleen traveled to Washington, D.C., to attend and give testimony at the National Listening Session on the New Freedom Initiative and Executive Order 13217. We deliver this report in tribute to Colleen’s work and dedication to guaranteeing the freedom for all Americans to choose community living.

I. Federal Agency Actions to Eliminate Barriers
and Promote Community Integration

"By the authority vested in me as President by the Constitution and the laws of the United States of America, and in order to place qualified individuals with disabilities in community settings whenever appropriate, it is hereby ordered as follows: The Federal Government must assist States and localities to implement swiftly the Olmstead decision, so as to help ensure that all Americans have the opportunity to live close to their families and friends, to live more independently, to engage in productive employment, and to participate in community life."

Executive Order 13217 directs six federal agencies, including the Departments of Justice, Health and Human Services, Education, Labor, Housing and Urban Development and the Social Security Administration to "evaluate the policies, programs, statutes, and regulations of their respective agencies to determine whether any should be revised or modified to improve the availability of community-based services for qualified individuals with disabilities."

Executive Order 13217 represents a milestone in the implementation of the American with Disabilities Act’s (ADA) integration mandate. The Order is unique in its recognition that the federal government has a critical role to play in promoting community living. Conceptually, too, the Order is remarkable; its emphasis on public input and a comprehensive federal-state partnership around achieving community living for people with disabilities is groundbreaking. Finally, the Order is notable for the broad sweep of its mandate for federal agency collaboration. The Order represents the first time that federal agencies have been directed to act together to ensure compliance with Title II of the ADA and achieve community living for people with disabilities. This cross-agency charge recognizes that in order for integration and full participation in community life to be realized, agencies must work together towards this goal. They must address barriers within their own programs and services, and collaborate to create an environment in which people with disabilities have the opportunity for participation and contribution in ways that promote self-determination and choice.

SUPPLEMENTAL INFORMATION: On June 18, 2001, President Bush signed Executive Order No. 13217 on Community-Based Alternatives for Individuals with Disabilities. The Order commits the United States to community-based alternatives for individuals with disabilities and recognizes that such services advance the best interests of the United States. The Order calls upon the federal government to assist states and localities to swiftly implement the decision of the United States Supreme Court in Olmstead. SUPPLEMENTAL INFORMATION: On June 18, 2001, President Bush signed Executive Order No. 13217 on Community Based Alternatives for Individuals with Disabilities. The Order commits the United States to community based alternatives for individuals with disabilities and recognizes that such services advance the best interests of the United States. The Order calls upon the federal government to assist states and localities to swiftly implement the decision of the United States Supreme Court in Olmstead.

Part I of this Preliminary Report sets forth the federal agencies’ vision for a successful community service system consistent with the Order. In 13 major areas, the Report discusses the barriers to community integration articulated by the agencies and highlights key solutions. Detailed descriptions of all agency activities will be provided in the individual reports of each agency, which will be released shortly.

Part II of the Preliminary Report describes federal agency efforts to ensure public input in conducting self-evaluations of agency programs, policies, statutes and regulations, and provides the legal and factual context for the Order. Specifically, it describes the roots of the Executive Order, providing background on the Supreme Court decision in Olmstead v. L.C. and on the ADA.

As a result of the self-evaluation process required by Executive Order 13217, federal agencies devised literally hundreds of solutions to facilitate the community integration of individuals with disabilities. These solutions fall into the following categories:

• Health Care Structure and Financing
• Housing
• Personal Assistance, Direct Care Services and Community Workers
• Caregiver and Family Support
• Transportation
• Employment
• Education
• Access to Technology
• Accountability and Legal Compliance
• Public Awareness, Outreach and Partnerships
• Income Supports
• Gathering, Assessment and Use of Data
• Cross-Agency Collaboration and Coordination

• HHS will establish a Medicaid Community Services Reform Task Force to advise the Department on actions that may be advisable to remove barriers and promote community living for people with disabilities. The Task Force would include representatives of all age and target groups within the disability community as well as representatives from key national, state and local organizations and government associations.

• HHS will propose a coordinated package of regulatory or potential legislative improvements that would quickly reduce some of the barriers to community living and reduce institutional biases in the Medicaid program, in consultation with states, tribes, and people who have a disability or long term illness. Among other things, this reform package may include proposals that: (a) make waiver renewal requirements less burdensome; (b) clarify the ability of Medicaid to cover individuals’ one-time transition costs from institutional settings; (c) allow states that tighten eligibility for hospitals and Intermediate Care Facilities for the Mentally Retarded (ICF-MRs) to do so without simultaneously narrowing eligibility for Medicaid Home and Community Based Services (HCBS) waiver eligibility; and (d) let states disregard state-specified income or assets of HCBS waiver recipients specifically for those individuals who meet an institutional level of care and are served through home and community-based services waivers (rather than apply such disregards to an entire Medicaid eligibility group).

• HHS will examine the costs and benefits of a statutory change to establish a state option enabling presumptive Medicaid eligibility for people determined to need nursing facility or Intermediate Care Facility for the Mentally Retarded (ICF-MRs) level of care who are being discharged from hospitals or other institutions to the community, similar to the presumptive eligibility for pregnant women but retaining the asset test. Hospitals now represent the single most frequent source of nursing facility admissions. Presumptive eligibility in this circumstance may make it more feasible to discharge a hospitalized person to the community rather than to a nursing facility or similar institution, or ensure that the institutional placement is one of short duration.

• HHS will propose statutory improvements to create a ten-year Home and Community-Based Services demonstration as an alternative to Medicaid-funded psychiatric residential treatment centers. The demonstration would allow states to set up home and community-based alternatives for children who would typically be served in psychiatric residential treatment facilities.

• HHS will allow Durable Medical Equipment, prosthetics, orthotics, and supplies (DMEPOS) to be furnished in a skilled nursing facility prior to discharge.

• HHS will establish an Office on Disability and Community Integration. The Office on Disability and Community Integration will oversee the coordinated development and implementation of policies, programs and special initiatives within HHS that impact people with disabilities regardless of age or type of disability. The Office on Disability and Community Integration will serve as the focal point within the Department for disability issues, including the coordination of disability science, policy, programs and special initiatives within the Department and with other federal agencies. The Office on Disability and Community Integration will be led by a senior-level HHS official.

• HHS will develop a multi-pronged strategy to address quality of care issues in home and community-based services. This strategy will include: (a) establishing defined expectations for home and community-based services; (b) assisting states in using the results of HHS quality reviews of community placements; (c) providing technical assistance to states and HHS regional staff in effective systems design or quality improvement strategies; and (d) implementing new quality assurance and improvement systems uniquely suited for services in one’s own home.

• HHS will review current Medicare and Medicaid discharge planning policies to ensure that institutions participating in Medicare and Medicaid provide more effective discharge planning for adequate and appropriate community-based care.

• HHS has already begun taking steps to help ensure that individuals with disabilities are able to live in their communities by awarding $70 million in "Systems Change Grants for Community Living" to more than 38 states and territories. HHS received over $240 million in proposals in response to the FY 2001 solicitation. These grants assist states as they improve or redesign their Medicaid and long-term care systems to enable individuals to reside and participate in their communities. The Administration believes these grants will help states implement the Olmstead decision.

• HHS’ Health Resources and Services Administration (HRSA) will take the lead, in partnership with states, tribes, and other organizations, in developing and implementing a plan to achieve appropriate community-based service systems for children and youth with special health care needs and their families.

• VA will consider expanding its authority to pay for assisted living or board and care home services following evaluation of a pilot program for VA-paid assisted living. Many veterans who could reside in a less restrictive environment are placed in nursing homes because they do not have the income to pay for assisted living or board and care. The Veterans Health Administration currently has statutory authority only to pay for nursing home care. However, Public Law 106-117 provided for a pilot program for VA-paid assisted living. Evaluation of this pilot program will determine the feasibility of expansion.

• VA will increase the availability of mental health services at its community-based outpatient clinics. Currently, some of the clinics do not offer basic mental health services. The clinics will now be required to submit plans for the provision of mental health services to veterans receiving care in the clinics in fiscal year 2002.

• VA will evaluate its community-based programs (e.g., Contract Adult Day Care Program, providing services to veterans who would otherwise be placed in institutions, Homemaker and Health Aide Program, and Home Based Primary Care Program) to determine whether any of these could be expanded or modified to further promote service to veterans with disabilities in community-based settings.

• VA will focus resources on reducing a backlog of over 661,000 claims for benefits and appeals. Adjudicating these claims -- starting with those pending longest, and from the oldest veterans -- will result in enhanced opportunities for veterans with disabilities.

The lack of accessible, affordable housing continues to present a major barrier to the participation of people with disabilities in their communities and in the economic life of the nation. There exists a full range of housing barriers, manifesting themselves differently depending on geographic location, available services, infrastructure arrangements, and whether the individual is currently living in a community or an institutional setting.

There currently is not enough appropriate or affordable housing for those people with disabilities who already live somewhere in the community. As more people with disabilities leave institutions to enter community life, this housing shortage will become even more acute. There are an insufficient number of accessible privately owned rental units in some housing markets in the nation, often resulting in families with general or targeted vouchers having an extremely difficult time locating an accessible unit that meets their needs.

In order to address these barriers, federal agencies will carry out the following activities.

• HUD will provide technical assistance to local Public Housing Authorities (PHAs) to expand knowledge of need and utilization of vouchers for people with disabilities. HUD will strongly encourage local PHAs to consult with local disability organizations on how best to distribute that knowledge and maximize usage within their local areas.

• HUD will coordinate efforts with DOJ to devote substantial resources to investigations and enforcement actions against developers, architects, and site engineers who design and/or construct multi-family housing that does not comply with the accessibility provisions of the Fair Housing Act (FHA).

• HUD proposes to allow Section 811 (Cranston-Gonzales National Affordable Housing Act) tenant-based assistance to be used for homeownership, and will seek changes to the Section 811 statute to allow greater flexibility in terms of supportive services.

• RSA will identify resources for funding opportunities for modifications to living spaces and disseminate that information to consumers of independent living services.

• DOJ will devote substantial resources to investigations and enforcement actions against developers, builders, architects, and site engineers who design and/or construct multi-family housing that does not comply with the requirements of the FHA and rental offices and other places of public accommodation within housing complexes that do not comply with the ADA.

• DOJ will encourage advocacy groups and private counsel representing persons with disabilities to alert DOJ to private lawsuits where amicus participation by DOJ would assist the court in interpreting and applying the provisions of the FHA and Section 504 of the Rehabilitation Act.

• DOJ will work with other agencies to improve the accessibility of public housing and to ensure that tax incentives do not go to those who discriminate on the basis of disability in housing.

• DOJ will develop guidelines to assist HUD in identifying section 504 accessibility cases that should be referred to DOJ for enforcement action.

• DOJ will meet with HUD on a quarterly basis to discuss section 504 accessibility cases that meet the guidelines for referral to DOJ for enforcement action.

• HHS will work with HUD and with other federal agencies to devise and implement strategies on housing issues as part of the Interagency Council on Community Living.

As the President's Executive Order is implemented and more people with significant disabilities live in home and community-based settings and enter the workforce, the already critical need for personal care assistants and other direct care staff and community service workers will become even more pronounced. A chronic inability to attract and retain dedicated people in these fields can be traced to the fact that traditionally, across the country, these workers earn very low pay, work long hours, and often receive no benefits. There is an urgent need to address the areas of recruiting, training, retaining, promoting, and improving the earnings/benefits of personal assistants and other community service workers. The following activities are planned to address these barriers.

Department of Labor

• ODEP and ETA will explore increased access to personal assistance supports through the One-Stop Center system.

• ODEP will establish an online registry, similar to America's Job Bank, on DisAbilityDirect.gov where local or community-based organizations that help locate personal assistance can be identified.

• HHS will, together with a limited number of volunteer states, initiate a national demonstration designed to address workforce shortages of community service direct care workers. The demonstration will test the extent to which workforce shortages and instabilities might be addressed through (a) better coordination with the Temporary Assistance for Needy Families (TANF) program; and (b) the availability of vouchers for worker health insurance or for tuition or day care credits. Participating states would be expected to develop options for workers to purchase affordable group health coverage through the state health insurance system or similar organized insurance group.

• HHS components will collaborate on a joint initiative to: (a) mobilize and make available to states a coherent body of information about methods to address worker shortage issues; (b) research significant issues; and (c) partner with foundations, other private sector organizations, the Department of Labor, and other agencies to formulate a comprehensive approach to the worker issue.

• HHS will work with other federal agencies to devise and implement additional strategies on workforce issues as part of the activities of the Interagency Council on Community Living.

There is little debate about the critical role that families and other informal caregivers play in supplying services to people with disabilities. Recent studies confirm that the vast majority of direct care (about 64 percent) is provided by families, friends, and neighbors. Among elderly persons needing assistance with activities of daily living, 95 percent have family members involved in their care. Unfortunately, despite the enormous contribution of family and informal caregivers to the community integration of people with disabilities, these caregivers receive little direct assistance and often face tremendous financial and emotional pressures. Inadequacies in family and caregiver supports such as respite services pose significant challenges to community integration for individuals with disabilities and their families.

A growing body of evidence confirms that the provision of supportive services can diminish caregiver burden, permit caregivers to remain in the workforce, and enable people with disabilities to remain in community settings - possibly delaying or avoiding institutionalization. Federal government efforts to provide supportive services to family and informal caregivers are highlighted below.

• HHS will use the Administration on Aging’s (AoA) National Family Caregiver Support Program (NFCSP) to assist states in the implementation of Olmstead. The NFCSP was launched in February 2001 and is currently funded at an annual appropriation of $125 million. It provides innovative and flexible service options for families and other informal caregivers of older persons, as well as for older caregivers of relative children, including children with Developmental Disabilities. The goal of the program is to help families maintain their loved ones at home and in the community. The program is being implemented in all 50 states and 6 territories through AoA’s national network of State Units on Aging, Area Agencies on Aging, Tribal Organizations, and local service providers. States can use the program to serve caregivers of the non-Medicaid elderly population. The program serves an "early intervention" that can help caregivers early in their caregiving careers, long before they burn out.

• HHS will provide states with a simplified model waiver on electronic media (for 1115 and other waivers) that offers both person-centered planning and self-directed service options. HHS will also develop technical assistance materials outlining existing options for states to develop flexible, cost-effective and consumer-driven methods of providing home health or personal assistance services.

• HHS will seek authorization and funding from Congress to conduct a national demonstration that would allow states to include respite care (temporary care that offers support to family caregivers) for adults as a fixed budget demonstration. Unrelieved caregiver burden is a major contributing factor to institutionalization of individuals with disabilities. Respite care is the service most often requested by families in an effort to keep their family member with a disability at home.

Accessible transportation is necessary for people with disabilities to go to work, get an education, receive medical care, and to have an active, inclusive role in society. The most commonly used mode of transportation by individuals moving from institutions into the community is likely to be public transportation. The ADA requires basic transportation services such as public transit services (including paratransit services), over-the-road buses, and passenger railroads to be accessible. Over-the-road bus accessibility is being phased in. Rental cars and taxis are covered to a lesser extent.

Barriers to transportation supports and services for people with disabilities generally fall into two major categories: a lack of available transportation options (due in large part to shortages of public transportation in rural and suburban areas) and a lack of access to existing transportation services (due to physical inaccessibility, limited or no travel training for individuals with cognitive disabilities, little coordination among transportation providers).

The following agencies will address these barriers through a number of activities:

• DOT will work with the Department of Health and Human Services to revitalize the DOT/HHS Council on Access and Mobility.

• DOT is considering the issuance of a Notice of Proposed Rulemaking that will require air carriers to file with DOT detailed information on the disability-related complaints they receive, to be used for enforcement, educational, and other relevant purposes by DOT, disabled air travelers, and Congress.

• DOT is considering the issuance of a Notice of Proposed Rulemaking to ensure that foreign air carriers operating to or from the United States or sharing codes with U.S. air carriers do not discriminate on the basis of disability.

• RSA, through partnerships with other public agencies, will seek resources to assist independent living service providers to establish and operate transportation systems.

• DOJ will look for opportunities to participate in private lawsuits as amicus curiae on issues involving paratransit services and accessible public transportation and will continue its efforts to expand the available modes of accessible transportation nationwide.

• Working collaboratively with DOT, DOJ will develop a list of criteria to guide DOT to refer appropriate paratransit complaints to DOJ for enforcement purposes.

• HHS will work with DOT and other federal agencies to devise and implement strategies on transportation issues as part of the activities of the Interagency Council on Community Living.

If people with disabilities are to fully access and be a part of their communities, they must have the opportunity to work. Work is so essential that without it people with disabilities often face isolation and segregation from the very communities in which they wish to participate. The dignity, responsibility, and economic independence resulting from gainful employment is the most effective way of reducing dependency on public benefits, enhancing self-reliance, changing attitudes, and promoting community acceptance of persons with disabilities.

The multiple barriers to employment and economic empowerment of adults with disabilities include the fragmentation of existing employment services; the isolation and segregation of people with disabilities from mainstream programs and services; the lack of access to health insurance; the complexity of existing work incentives; the lack of control and choice in selection of providers and other agents; inadequate work opportunities resulting from attitudinal barriers based on historical and erroneous stereotypes; and the lack of accurate data on employment of people with disabilities needed to measure progress in eliminating barriers to their employment. The following actions are planned to help address these barriers and to increase employment opportunities for people with disabilities.

Assuming that the President’s FY 2002 Budget is passed in its proposed form, the following activities will be funded out of existing budgetary resources:

• ODEP will expand the Customized Employment Grant Initiative to 10 additional sites in FY 2002. These grants support Local Boards in systematically reviewing their policies and practices in terms of services to persons with disabilities, incorporating new and innovative practices, as appropriate, and developing comprehensive models of customized employment services and supports for individuals with significant disabilities.

• ODEP will collaborate with ESA’s Wage and Hour Division to develop training and technical assistance on increasing earnings and customized employment for individuals with significant disabilities earning commensurate wages under section 14(c) of the Fair Labor Standards Act, and disseminate this assistance to their stakeholder networks.

• The Presidential Task Force on the Employment of Adults with Disabilities will convene the Youth Advisory Committee, composed of 15 young people (ages 14 to 28) with diverse disabilities and backgrounds to advise the Secretary of Labor and her designees (which include the Office of the 21st Century Workforce and the Office of Disability Employment Policy) on education, transition, employment, health, rehabilitation, and independent living issues affecting young people with disabilities.

• ODEP will work with other DOL agencies, the Department of Education, and other appropriate federal departments on activities that promote the transition of young people with disabilities from school to post-secondary opportunities and/or employment, including researching, demonstrating, and disseminating successful strategies for transitioning young adults with significant disabilities into employment, and initiation of policy actions and implementation ensuring such strategies are utilized within DOL programs and activities.

• DOL will expand self-employment, small business, micro-enterprise development, and other entrepreneurial opportunities for people with disabilities who want to transition from institutions to their communities, or who are at risk of institutionalization or segregation. ODEP, in concert with the Task Force, will develop and implement an action plan with multiple DOL agencies to promote self-employment and small business development among people with disabilities, particularly those with the most significant disabilities.

• DOL, with ODEP in the lead, will work with other agencies to increase One-Stop center employment services for people with psychiatric disabilities, including those transitioning to the community from institutions or those at risk of placement in residential facilities.

• OSERS will continue to actively enforce the new VR regulation that eliminates extended employment as a final employment outcome under the State Vocational Rehabilitation Services Program, so that an employment outcome may only be counted if an individual with a disability is working in an integrated setting in the community.

• HHS will work with SSA, DOL, and HUD and with other federal agencies to devise and implement strategies on employment issues as part of the Interagency Council on Community Living.

• HHS will initiate a Disability Fellows Program to bring more individuals with direct experience with disability into the HHS workforce.

• The Ticket to Work and Self-Sufficiency Program is the cornerstone of SSA's current efforts to support work. Continued swift implementation of the Ticket Program is a key commitment of the President's New Freedom Initiative, and SSA is working aggressively toward that end.

• SSA will continue to work with private and public organizations in each state through grants, cooperative agreements, and contracts to provide benefit planning and assistance to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) beneficiaries to assist them in their efforts to work.

• SSA is expanding its corps of employment support representatives (ESRs). The ESRs are specially trained to facilitate the efforts of SSDI and SSI beneficiaries to work by ensuring that SSA's employment support policies are used to maximum effect and that the public receives full and accurate information about the effect of work on benefits.

• SSA will conduct research and demonstration projects to explore new ways to encourage the employment of SSDI and SSI beneficiaries.

• OPM will consider revisions to its regulations in order to allow the Social Security Administration to certify that a federal job applicant has a disability.

• OPM will revise its Employment Guide for People with Disabilities in the Federal Government to incorporate regulatory changes that allow individuals with psychiatric disabilities to become permanent federal employees, and will revise its guidance in order to make it easier for individuals with disabilities to apply for federal employment.

Young people with disabilities face particular barriers to succeeding in school, going to college, becoming employed and living independently. Low educational attainment, low education and employment expectations, and confusing government programs and benefits with conflicting eligibility criteria have resulted in many young people with disabilities not making successful transitions from school to post-secondary education, employment, and independent living.

• OCR is also conducting technical assistance and training initiatives, through its 12 field offices throughout the country, to stakeholders regarding transition of students from secondary school to postsecondary institutions and improved vocational education services to students with disabilities so that they can progress further in education and employment.

• OVAE will seek to address any barriers in adult education programs due to statutory requirements under the Adult Education and Family Literacy (AEFLA) Act, which provides more than $500 million annually to states to support community-based adult basic education, English literacy and adult secondary educational instruction. Currently, due to ambiguity in the language of the AEFLA, some out-of-school youth with disabilities between the ages of 16 through 21 may not be receiving both adult education and the special education services under the IDEA to which they are entitled. Several critical factors, including both programmatic and physical accessibility issues, may limit the effectiveness of services for students with disabilities.

• OSEP will seek to improve the post-school results of students with disabilities by continuing to provide guidance to education and other services providers on and to enforce the requirements in IDEA for transition planning and transition services so that students and families may be better prepared for the challenges and complexities of the adult world, including post-secondary school, employment and independent living.

Access to technology is an essential component of ensuring that people with disabilities are able to be a part of the community and are not placed unnecessarily in institutions like nursing homes, hospitals, and other segregated settings. Assistive devices and universal design concepts provide a means by which people with disabilities may live independently or reduce their need for assistance services. Technology also provides a gateway to a wealth of information about employment opportunities, community events, and educational forums, and has fundamentally changed the workplace and the requisite skills and knowledge needed to fully participate in the 21^st century workplace.

While the accelerated development and use of electronic and information technologies in the home, school, and workplace appears to offer seemingly endless possibilities, it also has the potential to create new challenges. Technology can be a great equalizer, but it also has the capacity to further divide the class of citizens with significant disabilities who are neither computer literate nor connected to information.

The New Freedom Initiative promises to level the playing field by ensuring that Americans with disabilities have affordable access to the best technologies of today and that even better technologies are available in the future. In order for people with disabilities to maximize the opportunities that technology presents, it is also imperative that adequate training and skills development be provided. The following actions are planned to ensure that people with disabilities affected by the Olmstead ruling have access to technology and the ability to use it:

• The DOL Office of Disability Employment Policy (ODEP) will work with the ED, HHS, the Department of Agriculture (USDA), and other agencies and departments, as appropriate, to coordinate and implement a plan that improves the availability, affordability, and accessibility of technology in the school, home, and workplace for youth and adults with significant disabilities.

• ODEP will expand its DisAbilityDirect.gov web site to better serve the employment-related needs of people with disabilities. This interagency portal will give employment information and links; provide educational and life-long learning opportunities for people with disabilities, employers, organizations, and other interested people; and aggregate federal resources providing access to assistive and universally based technologies.

• ODEP will work with other DOL agencies to expand opportunities in the critical high-tech area for young people and adults with significant disabilities, and to provide information and technical assistance to employers about the benefits of hiring people with disabilities as employees.

• The National Institute on Disability and Rehabilitation Research (NIDRR) will establish and implement innovative programs and policies that lead to greater access to assistive technology, employment, and transportation through increased interagency workgroups and rehabilitation research.

• HHS will work with other federal agencies to devise and carry out activities regarding assistive technology through the work of the Interagency Council on Community Living.

Federal agencies will take the following actions to promote and ensure compliance with the ADA and the Olmstead decision:

• DOJ will engage in stepped-up enforcement efforts of the federal laws and regulations that protect individuals with disabilities from discrimination, including the ADA and its integration regulation, the Civil Rights of Institutionalized Persons Act (CRIPA) and the Fair Housing Act.

• DOJ will use its Fair Housing Testing program to identify patterns or practices of discrimination against individuals with disabilities by persons and entities engaged in the sale or rental of housing.

• DOJ will engage in additional outreach and research to determine how the Department should address the need to provide community services for children with significant disabilities so that such children may remain with their families and within the community.

• DOJ will encourage state and local officials to review plans for multi-family housing and public housing for compliance with federal accessibility requirements or, alternatively, to provide developers, builders, architects, engineers, and others involved in the design and construction of housing with literature outlining federal accessibility requirements and notice that plans have not been reviewed for compliance with these requirements.

• DOJ will initiate a nation-wide effort to enforce rights of individuals with disabilities to access mental health services, focusing in particular on individuals with communications-related disabilities, and individuals with developmental or cognitive disabilities, as part of an effort to make necessary services within communities accessible to individuals leaving institutional settings.

• DOJ will consider mechanisms that would give it greater investigative abilities under CRIPA, address issues arising from community placements, and address allegations of discrimination in purely private institutions.

• HHS will collaborate with the Department of Justice to enhance alternative dispute resolution options available to individuals who file ADA administrative complaints with HHS that allege non-compliance with Olmstead.

• HHS will expand its dissemination to states, tribes and other stakeholders of information about: a) voluntary compliance with the ADA's most integrated setting regulation and the Olmstead decision; b) promising practices in the provision of services in the most integrated setting to individuals with disabilities; and c) specific examples of individuals with disabilities who have moved from institutional to community life and other relevant developments.

• HHS will provide technical assistance and guidance to states and tribes regarding options available to devise and implement innovative service systems to best meet the needs of older individuals.

• HHS will ensure the provision of a national program of technical assistance to states to promote the most efficient use of existing Medicaid authority in order to enhance opportunities for community living and community participation.

• HHS will work with states and persons with disabilities to improve the quality of home and community-based services.

• ED’s Office of Special Education and Rehabilitation Services (OSERS) will coordinate, where appropriate, joint agency monitoring of state VR agencies and state education agencies regarding transition services from school to the world of work for adolescents and young adults, in accordance with Title I of the Rehabilitation Act and the Individuals with Disabilities Education Act (IDEA).

• ED will implement a variety of technical assistance and public information activities to promote better understanding of Olmstead’s implications for people with disabilities who utilize Department of Education programs, including: (a) expansion of an ongoing training project to provide information to the disability community on Olmstead-related issues; (b) coordination of technical assistance activities to be provided to individuals with disabilities and the parents of children with disabilities regarding the Olmstead decision, community living options, community-based resources and related issues; (c) development of technical assistance documents to promote the involvement of Protection and Advocacy of Individual Rights programs (authorized to protect the legal and human rights of people with disabilities) in community integration activities; (d) preparation of a resource document for parents and students identifying the rights of students and the obligations of schools as students transition from high school to post-secondary education; (e) targeted technical assistance and training concerning the transition from high school to post-secondary school; and (f) technical assistance and workshops for states to facilitate their ability to improve vocational education programs.

• ED’s Office for Civil Rights (OCR) vigorously enforces two Federal statutes – Title II of the ADA and Section 504 of the Rehabilitation Act – that prohibit discrimination on the basis of disability. OCR also engages in a number of proactive technical assistance and training initiatives with states, local school districts, advocacy organizations, parents, educators, and other stakeholders.

Department of Housing and Urban Development

• HUD will coordinate efforts with DOJ to devote substantial resources to investigations and enforcement actions against developers, architects and site engineers who design and/or construct multi-family housing that does not comply with the accessibility requirements of the Fair Housing Act.

• HUD will work with DOJ to increase accessibility of public housing by improving enforcement of the nondiscrimination requirements of Section 504 of the Rehabilitation Act and the Fair Housing Act against Public Housing Authorities.

• HUD will implement the provisions of a Memorandum of Understanding between DOJ and IRS in order to ensure that housing providers who discriminate against persons with disabilities do not benefit from low income housing tax credits.

• HUD will enhance its guidance to public housing agencies, private landlords and persons with disabilities who participate in the housing choice voucher program, to remind agencies and landlords of their responsibility to provide reasonable accommodations to persons with disabilities, and inform persons with disabilities of their right to reasonable accommodations.

• ODEP will work with other DOL agencies to provide information and technical assistance to employers about the benefits of hiring young people with disabilities as employees.

Many individuals with disabilities and their families have yet to fully appreciate the implications of the Olmstead decision. Many families are not aware of the full range of community services that are available for individuals with disabilities as alternatives to institutionalization. Furthermore, service providers, employers, and others often have similar gaps in their knowledge. Outreach to provide these stakeholders with information, and to incorporate the views of stakeholders into federal policy and other actions when appropriate is one means of addressing this knowledge gap and of better informing federal activities,

In addition, pervasive misconceptions, prejudices, and attitudes exist which must be addressed that prevent many individuals with disabilities from becoming employed or self-employed, and otherwise fully participating in American society. Information and familiarity are key to defeating these negative images, myths, and stereotypes.

Facilitating the full inclusion of people with disabilities in American society will also require more than government programs. Innovative partnership initiatives must be developed and implemented at the national level if the inclusion of people with disabilities in the workplace and the community is to become a routine part of how employers, businesses, and people with and without disabilities go about their normal activities. Effectuating such broad sweeping change will require that government work cooperatively and collaboratively, through appropriate legal arrangements, with private industry and problem solvers representing all sectors of the community.

The following activities are planned in the areas of public awareness, outreach and partnerships.

• RSA will re-evaluate current methods for providing in-service training for independent living service providers and, as appropriate, implement identified improvements.

• DOJ will hold a meeting with disability rights advocates and the Assistant Attorney General for Civil Rights to open improved lines of communication regarding Olmstead-related issues.

• DOJ will consider additional outreach targeted at determining what specific barriers keep children in institutions, and away from family settings. Specifically, DOJ would like to meet with advocacy groups and others to assess whether the problem of children residing within institutions lies chiefly in a lack of accessibility in child care settings, or other similar barriers that are covered by the ADA. DOJ will also work with childcare organizations and educators to promote the delivery of services to people with disabilities. DOJ intends to collaborate with ED on this issue.

• HHS’ Centers for Disease Control and Prevention (CDC), through the Department of Education and others, will continue its educational and self-help curriculum, pioneered with the nation’s Independent Living Centers, entitled "Living Well with a Disability."

• HHS will provide technical assistance to states to maximize the use of existing Medicaid authority to promote opportunities for community living and community participation, including productive employment. The program may include developing a "Promising Practices" website for community services.

Cash and medical benefits can be critical to an individual’s ability to live in the most integrated appropriate setting. Cash benefits, often in conjunction with food stamps and housing subsidies, can provide for basic needs such as food, clothing, and shelter. Medical benefits can enable someone to obtain treatment that may be critical to his or her ability to function in a community setting.

Work can also contribute significantly to an individual’s ability to thrive in a community setting. As advances in medicine and assistive technology make it possible for people with disabilities to do more and to be more independent, technology is creating new kinds of work and new pathways to it, such as through homebased businesses and telecommuting. Self-sufficiency through work is an increasingly realistic goal for many people with disabilities despite even severe impairments.

The Social Security Administration (SSA) operates two programs that pay cash benefits to a total of more than ten million people with disabilities. The Social Security Disability Insurance (SSDI) program is a social insurance program with benefits based on prior earnings. The Supplemental Security Income (SSI) program is a means-tested income-assistance program. SSDI beneficiaries are eligible for Medicare after a two-year waiting period. Most SSI beneficiaries are immediately eligible for Medicaid.

The SSI program contains many provisions that facilitate the transition from an institution to a community setting and otherwise promote community living. The SSDI and SSI programs provide a comprehensive package of supports that are designed to assist beneficiaries in their efforts to take advantage of work opportunities.

• Some of the actions that SSA will take to ensure that these provisions are being used to maximum effect include:

• Providing special training to staff who serve the public directly, including those in field offices, program service centers, and telephone service centers, emphasizing the importance of key policies and procedures in promoting the goals of Olmstead.

• Training state disability examiners, administrative law judges, and quality reviewers on Olmstead-related issues, stressing disability evaluation policies that are of particular relevance to individuals who do not reside in institutions.

• Upgrading operating instructions on waiving parental deeming for children requiring an institutional level of care, a key provision that (in states that elect this option) protects SSI benefits and Medicaid coverage for these children, enabling them to remain at home if they can be adequately cared for there.

• Continuing to improve the selection and accountability of the representative payees who receive and manage benefits on behalf of SSDI and SSI beneficiaries.

• The Office of Special Education and Rehabilitative Services (OSERS) will assess the feasibility of revising the reporting requirements of Centers for Independent Living (CIL) programs so that the programs would collect data on housing and related needs.

• HHS’ Centers for Medicare and Medicaid Services (CMS) will work with states, universities, foundations and others to ensure that there is an adequate base of applied research and knowledge to inform public policy-making with regard to: (a) the impact of the Medicaid and Medicare actions under the President's Executive Order; (b) state initiatives to improve community living services; (c) methods for designing long-term care systems so that they promote the ADA and are capable to address the population growth expected due to demographic changes; and (d) methods for designing quality assurance and improvement systems uniquely suited for services in one’s own home.

• The Office of Disability Employment Policy (ODEP), in collaboration with the Employment and Training Administration, and the Office of the Assistant Secretary for Administration and Management’s Civil Rights Center (CRC), will explore collecting data about people with disabilities who are accessing both services and employment through the workforce investment system. The Bureau of Labor Statistics (BLS) is testing a set of questions to see if it can identify the disability population in the context of a labor force survey. Policymakers may be able to use this data to help determine where to target future Federal money on behalf of people with disabilities seeking employment.

• ODEP will secure information from its national Workforce Investment Act (WIA) Disability Technical Assistance Consortium, designed to assist One-Stop Centers and other WIA-assisted programs to better serve youth with disabilities, including youth with significant disabilities who are making the transition from residential and other segregated environments to the community. This Consortium will provide ongoing data on outcomes, strategies, and other information needed to inform ODEP of needed policy-related actions.

• The Bureau of Transportation Statistics will conduct a survey of individuals with disabilities to determine their views of the accessibility of transportation in their lives.

In order effectively to meet the needs of individuals with disabilities and to efficiently utilize federal resources, the various federal agencies that devise disability policy and provide, fund and support community-based services should communicate about and collaborate on policy and programmatic objectives. Unfortunately, agencies involved in community support funding and activities have historically operated independently, with little or no coordination of their policy and program development activities. As a result, many individuals with disabilities have struggled with multiple federal programs containing inconsistent and often conflicting policies and program requirements. State and local governments and community organizations attempting to create coordinated systems of community supports for people with disabilities have also faced barriers due to lack of adequate coordination and collaboration across agencies and programs. For these reasons, the lack of a comprehensive and coordinated federal policy on community supports was identified through the agency self-evaluation and public input process as one of the most significant barriers to community living for people with disabilities.

Executive Order 13217 provided federal agencies with a much-needed impetus to work together to identify barriers to community living for individuals with disabilities policies, statutes and regulations. In order to ensure that the goals of the Executive Order are realized, and that activities to promote community integration are carried out in a coordinated, collaborative manner, agencies propose the following activities:

• HHS’ Office for Civil Rights (OCR) will work with the Department of Justice to implement a formal arrangement under which OCR would refer to DOJ’s mediation program appropriate unresolved individual administrative complaints that allege a violation of the ADA’s integration regulation.

• The Office of Special Education and Rehabilitative Services (OSERS) recommends the establishment of an ad hoc federal work group to address the housing needs of individuals with disabilities, and to assist OSERS-funded Centers for Independent Living (CILs) in assisting individuals with disabilities in moving from institutional to community life.

• OSERS will explore partnerships with other agencies in order to expand training opportunities regarding the recruitment, hiring and supervision of providers who furnish personal assistance services (e.g., assistance with bathing, dressing, toileting and other self-care tasks), and to explore how individuals with disabilities can have more control in the utilization of funds for personal care services.

• HUD will coordinate efforts with DOJ to devote substantial resources to investigations and enforcement actions against developers, architects, and site engineers who design and/or construct multi-family housing that does not comply with the accessibility provisions of the Fair Housing Act.

• HUD will work with DOJ to increase the accessibility of public housing by improving enforcement of the nondiscrimination requirements (including accessibility and reasonable accommodation requirements) of Section 504 of the Rehabilitation Act and the Fair Housing Act against Public Housing Authorities.

• DOJ will work with HHS to implement a formal arrangement under which HHS would refer to DOJ’s mediation program appropriate unresolved individual administrative complaints that allege a violation of the ADA’s integration regulation.

• DOL’s Office of Disability Employment Policy (ODEP) will facilitate the development of an employment-focused memorandum of understanding (MOU) between agencies and departments that are essential partners to the workforce investment system. The purpose of the MOU would be to (1) clarify integrated employment as a goal for adults with significant disabilities; (2) coordinate agency resources and capacity building initiatives at the federal level; and (3) serve as a model for state level coordination to ensure that employment becomes part of the planning process for people transitioning from institutional care into the community.

• ODEP will work with other relevant agencies, including the Small Business Administration, the Social Security Administration, the Treasury Department, and the ED’s Rehabilitation Services Administration, to educate lenders about the viability of small business ownership for people with disabilities. Given that access to capital is the cornerstone of any effort to start a business, any strategy addressing this area must consider the effects of current policy.

• DOT will work with HHS to reinvigorate the Joint Council on Access and Mobility.

• DOT will work with DOJ and the National Council on Disability on an outreach plan to air carriers regarding carriers’ obligation under federal law not to engage in discrimination on the basis of disability.

• OPM will strengthen its relationship with the Department of Education’s Rehabilitation Services Administration in order to promote federal government employment of individuals who receive state vocational rehabilitation services.

• OPM will work with DOL to ensure that DOL-funded One-Stop Centers promote the use of a workforce recruitment program for college students with disabilities, promote the use of a DOL referral network for employers interested in filling jobs with candidates with disabilities, and provide One-Stop Centers with information on federal employment.

II. Executive Order 13217
The Legal and Factual Backdrop

There are approximately 54 million individuals with disabilities in the United States. The General Accounting Office (GAO) recently estimated that at least 1.8 million of these individuals are being served in institutional settings, including 1.6 million individuals in nursing facilities, 106,000 individuals in institutions for people with mental retardation and developmental disabilities, and 57,000 individuals in state and local facilities for individuals with mental illness.¹ Approximately 52 million individuals with disabilities reside in the community. The GAO estimated that an additional two million individuals are at risk of entering an institution in order to receive care.

Executive Order 13217 is founded upon five guiding findings and

principles to address the needs of individuals with disabilities. The Order states:

1. The United States is committed to community-based alternatives for individuals with disabilities and recognizes that such services advance the best interests of Americans;
2. The United States seeks to ensure that America’s community-based programs effectively foster independence and participation in the community for Americans with disabilities;
3. Unjustified isolation or segregation of qualified individuals with disabilities through institutionalization is a form of disability-based discrimination prohibited by Title II of the Americans with Disabilities Act of 1990 (ADA). 42 U.S.C. §12101 et seq. States must avoid disability-based discrimination unless doing so would fundamentally alter the nature of the service, program, or activity provided by the state;
4. In Olmstead v. L.C., 527 U.S. 581 (1999), (the "Olmstead" decision), the Supreme Court construed Title II of the ADA to require states to place qualified individuals with disabilities in community settings, rather than in institutions, whenever treatment professionals determine that such placement is appropriate, the affected individuals do not oppose such placement, and the state can reasonably accommodate the placement, taking into account the resources available to the state and the needs of others with disabilities; and
5. The Federal Government must assist states and localities to implement swiftly the Olmstead decision, so as to help ensure that all Americans have the opportunity to live close to their families and friends, to live more independently, to engage in productive employment and to participate in community life.

Exec. Order No. 13217, 66 Fed. Reg. 33,155 (2001) at Section 1.

Executive Order 13217 calls upon participating agencies to undertake a range of activities to promote community-based living for qualified individuals with disabilities and to ensure swift implementation of the Olmstead decision. These activities broadly fall into three categories: (1) coordinated technical assistance to states; (2) the identification of specific barriers in federal law, regulation, policy and practice; and (3) enforcement activities, including the investigation and resolution of complaints brought under Title II of the ADA.

TECHNICAL ASSISTANCE

Executive Order 13217 directs the participating agencies to work cooperatively to ensure that the Olmstead decision is implemented in a timely manner. The Order mandates the agencies to work with states to "help them assess their compliance with the Olmstead decision and the ADA in providing services to qualified individuals with disabilities in community-based settings[.]" Specifically, the agencies are directed to provide "technical guidance," and to "work cooperatively with states to achieve the

goals of Title II of the ADA, particularly where states have chosen to develop comprehensive, effectively working plans to provide services to qualified individuals with disabilities in the most integrated settings." These agencies also must ensure that existing federal resources are used in the most effective manner to support the goals of the ADA.

Next, Executive Order 13217 directs participating agencies to "evaluate the policies, programs, statutes, and regulations of their respective agencies to determine whether any should be revised or modified to improve the availability of community-based services for qualified individuals with disabilities." The review is to focus on identifying affected populations, improving the flow of information about supports in the community and removing barriers that impede opportunities for community placement. The Order obligates the agencies to involve consumers, advocacy organizations, providers, and relevant agency representatives in the self-evaluation processes.

Finally, the Order instructs the Attorney General and the Secretary of Health and Human Services to "fully enforce Title II of the ADA, including investigating and resolving complaints filed on behalf of individuals who allege that they have been the victims of unjustified institutionalization." These two federal agencies are encouraged to "work cooperatively" with the states whenever possible and to use alternative dispute resolution to bring complaints to a quick and constructive resolution.

As stated, Executive Order 13217 on Community-Based Alternatives for Individuals with Disabilities is part of a larger, multi-pronged disability initiative developed by the Bush Administration. The New Freedom Initiative includes the following key components:

• Increasing Access to Assistive and Universally Designed Technologies: Provides for a major budget increase for research on assistive technology, and a new fund to market these technologies. Funding for low-interest loan programs to buy assistive technology will also increase.

• Expanding Educational Opportunities: Provides for increased funding to states for the Individuals with Disabilities Education Act, and grant eligibility for states that establish a comprehensive reading program for students, including those with disabilities.

• Promoting Homeownership: Provides for implementation of Public Law 106-569, which allows local Public Housing Authorities to provide recipients of Section 8 vouchers with disabilities with up to one year’s worth of vouchers in a lump-sum payment to finance a down-payment on the purchase of a home.

The ADA serves as a "comprehensive national mandate for the elimination of discrimination against individuals with disabilities." 42 U.S.C. 12101(b)(1). Based on extensive fact-finding and study by Congress -- some 14 congressional hearings and 63 field hearings by a special congressional task force were held in the three years prior to passage of the ADA -- Congress found in the ADA that:

historically, society has tended to isolate and segregate individuals with disabilities, and despite some improvements, such forms of discrimination against individuals with disabilities continue to be a serious and pervasive social problem;

discrimination against individuals with disabilities persists in such critical areas as employment, housing, public accommodations, education, transportation, communication, recreation, institutionalization, health services, voting and access to public services;

individuals with disabilities continually encounter various forms of discrimination, including outright intentional exclusion, the discriminatory effects of architectural, transportation, and communication barriers, overprotective rules and policies, failure to make modifications to existing facilities and practices, exclusionary qualification standards and criteria, segregation, and relegation to lesser services, programs, activities, benefits, jobs or other opportunities;

census data, national polls, and other studies have documented that people with disabilities, as a group, occupy an inferior status in our society, and are severely disadvantaged socially, vocationally, economically, and educationally; [and]

individuals with disabilities are a discrete and insular minority who have been faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society, based on characteristics that are beyond the control of such individuals and resulting from stereotypic assumptions not truly indicative of the individual ability of such individuals to participate in, and contribute to, society;

42 U.S.C. 12101(a). Based on these findings, Congress "invoke[d] the sweep of congressional authority" to address the major areas of discrimination faced day-to-day by people with disabilities. Accordingly, the ADA targets three major areas of discrimination against persons with disabilities. Title I addresses discrimination by employers; Title II addresses discrimination by governmental entities; and Title III addresses discrimination in public accommodations (e.g., stores, restaurants, etc.) operated by private entities.

Since its enactment, the ADA has opened doors and created opportunities for millions of children and adults with disabilities to participate fully in the rich fabric of their own communities. This year, with the unveiling of the New Freedom Initiative, President George W. Bush reminded us that despite significant progress, enormous challenges remain. The New Freedom Initiative calls upon all Americans to rededicate themselves to promoting the full inclusion of people with disabilities in American society and to fulfilling the promises of the ADA.

In the ADA, Congress required the Attorney General to promulgate regulations to implement the statute. One of those regulations, the integration regulation, provides that: "[a] public entity shall administer services, and activities in the most integrated setting appropriate to the needs of qualified individuals with disabilities." 28 C.F.R. 35.130(b) (1996). In the preamble to the regulations, the Attorney General explained that "the most integrated setting" is "a setting that enables individuals with disabilities to interact with non-disabled persons to the fullest extent possible." 28 C.F.R. Pt. 35 App. A. 35.130, at 469. It is the integration regulation which was at issue in Olmstead v. L.C., the landmark decision affirming the rights of individuals with disabilities to live and receive treatment in community settings whenever appropriate.

Olmstead v. L.C., 527 U.S. 581 (1999), was brought by two Georgia women whose disabilities include mental retardation and mental illness. At the time the suit was filed, both plaintiffs lived in state-run institutions, although their treatment professionals had determined that they could be appropriately served in a community setting. The plaintiffs asserted that continued institutionalization was a violation of their right under the ADA to live in the most integrated setting appropriate. The Supreme Court agreed, holding that "[u]njustified isolation . . . is properly regarded as discrimination based on disability."

The Court’s findings regarding the harms of institutionalization are unequivocal:

[I]nstitutional 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.

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.

Olmstead, 527 U.S. at 600-01.

Under the Court's decision, states are required to provide community-based services for persons with disabilities who would otherwise be entitled to institutional services when: (a) treatment professionals reasonably determine that such placement is appropriate; (b) the affected persons do not oppose such treatment; and (c) the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of others who are receiving state-supported disability services. The Court cautioned however, that nothing in the ADA condones termination of institutional settings for persons unable to handle or benefit from community settings. Moreover, the state's responsibility, once it provides community-based treatment to qualified persons with disabilities, is not unlimited. Under ADA regulations, states are obliged to "make reasonable modifications in policies, practices, or procedures when the modifications are necessary to avoid discrimination on the basis of disability, unless the public entity can demonstrate that making the modifications would fundamentally alter the nature of the service, program or activity." 28 C.F.R. 35.130(b)(7).

a comprehensive, effectively working plan for placing qualified persons with disabilities in less restrictive settings, and

a waiting list that moves at a reasonable pace not controlled by the state's endeavors to keep its institutions fully populated.

Olmstead, 527 U.S. at 605-06.

Historically, state and local governments have taken the lead to develop innovative programs to serve people with disabilities in their own homes and communities. Funding for these programs comes from a variety of sources including federal block grants, competitive grants, state and local revenues and the Medicaid and Medicare programs. However, as is reflected in the many comments received from state and local government authorities, efforts by states to develop and operate community-based programs for individuals with disabilities have been hampered by a variety of factors that range from inadequate funding to lack of flexibility in federal rules that govern the Medicaid program – a key source of funding for home and community-based care. As a result, community-based care remains a patchwork and is often inadequate to ensure against inappropriate institutionalization. Today, while there are a number of states operating model programs, and even some that have closed all state institutions, individuals with disabilities still face enormous variability in the availability, accessibility and quality of community-based care.

For states, the Olmstead decision has spurred renewed activity to address these systemic barriers and to increase and improve access. At a recent hearing before the Senate Aging Committee, one state official characterized Olmstead as a catalyst for change:

The 1999 U.S. Supreme Court decision, Olmstead v. L.C., had a dual effect on t