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Table of Contents

 

  1. Federal Agency Actions to Eliminate Barriers and Promote Community Integration ……………………………………………….

 

1

Introduction ………………………………………………………………………..

1

Preliminary Report Overview ……………………………………………….…..

2

Highlights of Federal Agency Actions to Promote

Community Integration …………….……………………….…………………….

2

Health Care Structure and Financing ………………………………………….

3

Housing ……………………………………………….…………………………...

6

Personal Assistance, Direct Care Services and Community Workers …….

8

Caregiver and Family Support ………………………………………………….

10

Transportation ……………………………………………………………………

11

Employment ………………………………………………………………………

14

Education …………………………………………………………………………

18

Access to Technology …………………………………………………………..

20

Accountability and Legal Compliance …………………………………………

21

Public Awareness, Outreach and Partnerships ………………………………

26

Income Supports ………………………………………………………………….

30

Gathering, Assessment and Use of Data ……………………………………..

31

Cross-Agency Collaboration and Coordination …………………….………...

33

  • Executive Order 13217- The Legal and Factual Backdrop …....
  • 37

    Executive Order 13217 on Community-Based

    Alternatives for People with Disabilities …………..………………………..….

    37

    The New Freedom Initiative …………………………………………………….

    39

    Roots of the New Freedom Initiative: The ADA

    and the Olmstead Decision ……………………………………………………..

    40

    The Public Input Process ………………………………………………………..

    45

    Conclusion ………………………………………………………………………..

    48

    Appendices

     

     

    A

    Summary of Disability – Related Legislative Initiatives ………………………

    A

    B.

    Entities that Provided Input Into Federal Agencies’

    Self-Evaluation Process ………………………………………………………...

    B

    C.

    July 27, 2001 Federal Register Notice Seeking

    Public Input Into Federal Agencies’ Self-Evaluation Process ………………

    C

     

    "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."

    -- President George W. Bush, Executive Order 13217

    INTRODUCTION

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

    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.

    PRELIMINARY REPORT OVERVIEW

    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.

    HIGHLIGHTS OF FEDERAL AGENCY ACTIONS TO PROMOTE COMMUNITY INTEGRATION

    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


    "Institutional bias" stems largely from the way in which the Medicaid program was structured nearly 40 years ago, when few community-based alternatives were available. Today, despite the possibility of community alternatives, approximately 73 percent of Medicaid long-term care funding goes to pay for institutional care, while only 27 percent is directed toward home and community-based services. Federal agencies, and particularly HHS, identified a number of actions to address the barriers to community integration that result from the structure and financing of health care through Medicaid and Medicare.

    Department of Health and Human Services

    Department of Veterans Affairs


    Housing


    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.

    Department of Housing and Urban Development

    Department of Labor

    Department of Education

    Department of Justice

    Department of Health and Human Services


    Personal Assistance, Direct Care Services and Community Workers


    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

    Department of Education

    Department of Health and Human Services

     


    Caregiver and Family Support


    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.

    Department of Health and Human Services


    Transportation


    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:

    Department of Transportation

    Department of Labor

    Department of Education

    Department of Justice

    Department of Health and Human Services


    Employment


    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.

    Department of Labor

    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:

    Department of Education

    Department of Health and Human Services

    Social Security Administration

    Office of Personnel Management


    Education


    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.

    The U.S. Department of Education reports that national high school graduation rates for students with disabilities are far below that of youth without disabilities. It is also estimated that only one-third of young people with disabilities receives needed job training and assistance. These persistent barriers to the achievement of positive outcomes relating to education must be addressed if young people with disabilities are to have the knowledge and skills they need to function independently in their communities and in the workplace of the 21st century. Key federal agency actions in the area of education are set out below.

    Department of Education

    • 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.

    Department of Labor

     


    Access To Technology


    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 21st 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:

    Department of Labor

    • 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.

    Department of Education

    • 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.

    Department of Health and Human Services

    • 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.

     


    Accountability and Legal Compliance


    In Executive Order 13217, President Bush said that the federal government "must assist States and localities to implement swiftly the Olmstead decision, so as to 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.@ The President also directed the Attorney General and Secretary of the Department of Health and Human Services to Afully enforce Title II of the ADA,@ including by investigating and resolving individual complaints of alleged discrimination, and to work cooperatively with states to resolve these complaints whenever possible.

    The federal agencies= self-evaluation process required by the Executive Order and the public input obtained during this process revealed the need for an array of activities to promote compliance with the Olmstead decision, including: greater federal oversight of programs that serve people with disabilities; stronger enforcement of laws that protect the rights of people with disabilities; greater and more effective technical assistance to assist states in appropriately serving individuals in the most integrated setting appropriate to their needs; guidance to states on effective planning to provide services in the most integrated setting; and greater and more effective outreach to assist individuals with disabilities and their family members in understanding the ADA and Olmstead=s requirements.

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

    Department of Justice

    • 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.

    Department of Health and Human Services

    • 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.

     

    Department of Education

    • 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.

    Department of Labor

    • The DOL Office of Disability Employment Policy (ODEP), in collaboration with the DOL Employment and Training Administration and the Office of the Assistant Secretary for Administration and Management's Civil Rights Center (CRC), will conduct disability-focused reviews and evaluations of implementation of the nondiscrimination and equal opportunity obligations of Section 188 of the Workforce Investment Act (WIA). Under the leadership of the CRC, these evaluations will enable DOL to identify further areas in which federal training and technical assistance activities are needed to eliminate barriers and to prevent disability discrimination in the WIA programs.
    • 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.

     


    Public Awareness, Outreach and Partnerships


    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.

    Department of Labor

    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:

    Department of Education

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

    Department of Justice

    • 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.

    Department of Housing and Urban Development

    Department of Health and Human Services

    • 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.


    Income Supports


    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.


    Gathering, Assessment and Use of Data


    The successful integration of people with disabilities into community settings requires consistent data collection to measure the progress of existing programs and initiatives and to determine the specific needs of people with disabilities. With statistical data about various aspects of disability, federal agencies, the disability community, and other stakeholders can formulate public policy and programs that support, encourage, and maintain the transition of individuals with disabilities from institutional settings to the community. The following actions are planned in orderto acquire, assess and use data aboutpeople with disabilities.

    Department of Education

    Department of Health and Human Services

    • 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.

    Department of Housing and Urban Development

    Department of Labor

    • 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.

    Department of Transportation

    • 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.

     


    Cross-Agency Collaboration and Coordination


    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:

    Department of Health and Human Services

    • HHS proposes that the President formalize permanently the Interagency Council on Community Living (ICCL), convened by HHS Secretary Thompson in July 2001 to accomplish the tasks set out in Executive Order 13217. The ICCL would be comprised of all agencies involved in implementation of the Executive Order, with the addition of other agencies as appropriate, including the Equal Employment Opportunity Commission (EEOC). Designated members would be Secretaries, agency heads, or their functional equivalents. In addition, staff would be assigned to meet regularly to conduct the ongoing interagency work. HHS proposes that the Council articulate a strategic interagency plan to expand and promote home and community-based services, and to address, at a minimum, issues related to: housing; workers with disabilities; the long-term care workforce; assistive technology; transportation; and education.
    • 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.

    Department of Education

    • 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.

    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 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.

    Department of Justice

    • 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.

    Department of Labor

    • 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.

    Department of Transportation

    • 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.

    Office of Personnel Management

    • 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.

    This part of the Preliminary Report describes the specific provisions of Executive Order 13217, concerning community-based alternatives for individuals with disabilities, and President Bush’s New Freedom Initiative, a larger, multi-pronged strategy to address the rights and needs of individuals with disabilities. This part of the Report also discusses the legal and policy developments that led to Executive Order 13217, including the Americans with Disabilities Act and the Supreme Court decision in Olmstead v. L.C.. Programmatic and factual information about the need for community-based care for individuals with disabilities is included here as well. Finally, this part of the Report describes federal agency activities undertaken in accordance with the requirements of the Executive Order to conduct a self-evaluation of agency programs, policies, statutes and regulations, and to ensure public input in the self-evaluation process.

     

    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.

    Review of Federal Policies, Programs, and Laws

    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.

    ADA Title II Enforcement

    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 is the foundation for the New Freedom Initiative. It was signed into law 11 years ago by President George W. Bush and has been hailed since then as the most significant civil rights legislation since enactment of the Civil Rights Act of 1964.

    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.

    THE INTEGRATION REGULATION AND OLMSTEAD v. L.C.

    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.

    Based on these factual findings, the Court held that unnecessary segregation of people with disabilities in institutions is a form of discrimination under the ADA, and that individuals with disabilities have a civil right to receive services in the community in certain circumstances.

    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).

    The Supreme Court opinions in Olmstead suggest that evaluation of whether a modification entails "fundamental alteration" of a program takes into account three factors: the cost of providing services to the individual in the most integrated setting appropriate; the resources available to the state; and how the provision of services affects the ability of the state to meet the needs of others with disabilities. Significantly, a plurality of the Court suggests that a state could establish compliance with the ADA’s reasonable modification requirement if it shows that it has:

    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.

    THE STATES’ RESPONSE TO OLMSTEAD

    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 the state of Louisiana. First, it became the legal basis for Louisiana’s version of Olmstead, the Barthelemy v. Department of Health and Hospitals lawsuit. Second, it was [the] central force that led to a partnership between the aging and disability communities in the state of Louisiana.

    Testimony of Laura Brackin, M.A., Executive Director, Governor’s Office of Disability Affairs, state of Louisiana, Before the Special Committee on Aging, U.S. Senate. September 24, 2001.

    The Barthelemy case referenced by Ms. Brackin demonstrates how Olmstead caused a sea-change in a state’s long-term care system. Among other things, the recent settlement reached by the parties in the Barthelemy lawsuit calls for significant and unprecedented expansions in three home and community-based waiver programs serving the elderly and people with disabilities in Louisiana. Louisiana has also committed to expanding personal care services in its Medicaid program. In the wake of the Olmstead decision, a state-wide, cross disability coalition has formed. This coalition has worked collaboratively with the legislature and the Governor to enact legislation that calls for further planning to reform long-term care in the state.

    According to the National Conference of State Legislatures (NCSL), which is tracking state responses to Olmstead, the majority of states, like Louisiana, are responding affirmatively to Olmstead. Most are engaged in service planning and are moving toward implementation of system reforms and service expansions. The GAO reported "[a]s of September 2001, an estimated 40 states and the District of Columbia had task forces or commissions that were addressing Olmstead issues." Approximately 14 states have completed draft or initial plans. According to NCSL, the goal for most states is to complete initial plans by the end of this year or early 2002. Significantly, many of these states are working closely with consumers, family members and other stakeholders to formulate and draft their plans for system reform.

    A key directive of the President’s Executive Order was to include public input in the evaluations conducted by each agency. HHS Secretary Thompson sent an open letter to all interested parties inviting such input, and emphasized in a press release and throughout the public input process the desire to "listen to the people who know the barriers better than anyone could" -- those who have first-hand experience with disability. To ensure the involvement of consumers, advocacy organizations, providers and relevant agency representatives, HHS, in conjunction with the other participating agencies in the Interagency Council on Community Living, developed a multi-pronged strategy for soliciting public comments. Four complementary methods to obtain public input for the federal agency self-evaluations were adopted, as pictured below.


    graphic display of methods for public input

    More than 800 individuals and organizations provided comments through the mechanisms established by HHS in response to the Executive Order. Many comments were quite detailed and contained multiple ideas and observations, resulting in the collection of several thousand ideas or observations through the public input process. Most of the comments (678) were received during the period of formal written comment. Eighty individuals and organizations provided testimony at the National Listening Session, while another 47 participated in the National Teleconference call. Respondents represented a broad cross-section of interest groups, including consumers, family members, advocacy organizations, providers and provider associations, state and local governments, national government agency associations, and researchers. Respondents also represented a broad spectrum of disabilities, including mental retardation and developmental disabilities, mental health and substance abuse, physical disabilities, including spinal cord injury, traumatic brain injury, HIV/AIDS, visual and hearing impairments, autism, Alzheimer’s and various learning disabilities. See Appendix B (listing all entities participating in the public input process). Components within HHS and the other participating federal departments conducted short-term outreach efforts to alert their network and the general public about the opportunity to provide input. These efforts included mass mailings and emails, announcements at already scheduled events, and alerts posted on agency websites. For example, HHS provided and disseminated one-page flyers in both English and Spanish that described the three public input opportunities and solicited comments.

    1. Written Comments: Through a Federal Register notice published on July 27, 2001, HHS announced a 30-day, formal public comment period, inviting members of the public to submit written comments to the New Freedom Initiative Group. (See Notice, attached as Appendix C.)

    Consumers, family members, advocacy organizations, service providers, and others were asked to identify barriers to community integration that exist in federal policies, programs and statutes, and to identify solutions to address these barriers. Individuals were given the option of providing input through the New Freedom Initiative email address or by submitting written comments by mail. The full text of each communication was entered into the public input database and categorized for analysis. The categorization involved identification of the source of input (i.e., consumer, family member