New Freedom Initiative: HHS Self Evaluation -- Chapter II

In the two years following the Olmstead decision, HHS, in collaboration with states and other partners, has worked to promote and support the community integration of individuals with disabilities. In particular, since the President announced the New Freedom Initiative and under Secretary Thompson's leadership, HHS has worked vigorously to build and enhance programs that provide people with disabilities with the tools they need to live the lives of their choosing. With an eye on community integration, HHS has awarded or announced the availability of more than $100 million in grants in the past year for programs in support of state long-term support systems, personal assistance services, family caregiver support, and community-based care for people with mental illness and prevention of secondary conditions, among others. The Department has also sponsored national conferences on independent living, and has supported state coalitions formed to promote community integration, including coalitions on community-based care for people with mental illness. Further, the Department has in the last year launched a Surgeon General's initiative on health disparities and mental retardation, and sponsored a national teleconference on how HUD's Section 8 vouchers can be used to address the critical shortage of accessible, affordable housing for people with disabilities, to name just a few efforts. (A detailed timeline of HHS activities implementing the New Freedom Initiative is set forth below on this page and following pages.)

This Chapter describes HHS' activities affecting individuals with disabilities, and discusses HHS' leadership in community integration efforts. The chapter also provides the context for HHS' self-evaluation by explaining the funding of services for individuals with disabilities and the structure within HHS that supports these and other services.

HHS: ONE DEPARTMENT WORKING
TO PROMOTE COMMUNITY INTEGRATION

Overview of HHS Programs

HHS components are engaged in a variety of activities to facilitate the provision of health and human services programs utilized by individuals with disabilities. (A detailed description of HHS components, including key programs that serve individuals with disabilities, is included in Appendix C.) HHS agencies administer some programs directly, as in the case of Medicare, a health insurance program primarily providing acute care benefits to individuals over 65 and individuals with disabilities. HHS agencies also administer programs jointly with states and localities, such as Medicaid, a means-tested program that provides both acute and long-term benefits to certain categorical groups of individuals. Both Medicare & Medicaid are administered by the Centers for Medicare & Medicaid Services (CMS) (formerly the Health Care Financing Administration, or "HCFA").

HHS is a direct provider of health services for many American Indian and Alaska Native individuals through the Indian Health Service (IHS). In addition, HHS components fund health and human services programs provided by states, localities, tribal governments and other providers, such as the Administration on Aging's (AoA) funding of supportive services for older individuals and their families, administered through State Units on Aging, Area Agencies on Aging, tribal organizations and local service providers. The Substance Abuse and Mental Health Services Administration (SAMHSA) provides funding for a variety of activities and services regarding the needs of individuals with mental disabilities and substance abuse disorders including strategic analysis, research, data collection and review and consumer empowerment. The Centers for Disease Control and Prevention (CDC) Disability and Health Branch also funds state projects focusing specifically on promoting the health, well-being and participation of people with disabilities.

Other HHS-funded programs include primary health care programs funded by the Health Resources and Services Administration (HRSA); IHS funding of health facilities operated by Indian tribes; Temporary Assistance for Needy Families (TANF), Head Start and other child and family services funded by the Administration for Children and Families (ACF). In addition, ACF's Administration on Developmental Disabilities (ADD) supports Developmental Disabilities Councils in each state to assist in establishing a comprehensive system for meeting the needs of persons with developmental disabilities, and a Protection and Advocacy program in each state to protect the rights of such individuals.

Many HHS components provide technical assistance to states, service providers, and consumers of health and human services, such as the assistance and resource information provided to state offices of minority health and minority community groups by the Office of Minority Health (OMH). Other components involved in technical assistance activities include the Office of the Assistant Secretary for Planning and Evaluation (ASPE), AoA, ACF, CMS, SAMHSA and the Office for Civil Rights (OCR).

HHS components engaged in research activities or clinical studies include the Agency for Healthcare Research and Quality (AHRQ), the Food and Drug Administration (FDA), the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC) and the IHS. ASPE is responsible for the development, coordination, research and evaluation of HHS policies and programs that facilitate the long-term care for and community integration of individuals with disabilities. In addition, many HHS components participate in policy development and evaluation affecting individuals with disabilities, particularly with respect to specific populations or programs that are within the purview of the components' work.

Other components are involved in ensuring compliance with legal mandates inside and outside of HHS. The Office for Civil Rights (OCR) is charged with ensuring compliance with civil rights laws that prohibit discrimination on the basis of disability in HHS federally conducted and federally assisted programs, and is responsible for ensuring that state and local government health and social service programs comply with the ADA. The Office of Inspector General (OIG) evaluates, audits and investigates HHS programs and grantees to increase program efficiency and effectiveness and to eliminate fraud, waste and abuse. Still other HHS components provide support for internal departmental functions, such as the advice on HHS information technology and financial management matters provided by the Office of the Assistant Secretary for Budget, Technology and Finance (ASBTF) and the human resources services provided by the Program Support Center (PSC). Finally, HHS maintains an ongoing relationship with states, localities and tribal governments through the Office of Intergovernmental Affairs (IGA) and provides information to the public through the Office of the Assistant Secretary for Public Affairs (ASPA).

Most HHS programs, including those designed specifically around the needs of individuals with disabilities, are not focused exclusively or primarily on community integration. For example, HHS' major health and long-term care service programs, Medicaid and Medicare, do not focus exclusively on community integration for people with disabilities. However, other programs and the federal statutes that authorize them do reflect as part of their mandate the principle of community integration and access to community-based alternatives. One of ADD's missions is to enhance opportunities for community living for people with developmental disabilities, and this mission is reflected in the leadership shown by many state Developmental Disability Councils and Protection and Advocacy organizations in ensuring that community-based services are provided to people with disabilities. AoA's statutory mandate under the Older Americans Act is focused on helping older people remain independent in their homes and communities through the provision of supportive services such as meals-on-wheels, in-home support services, transportation services and ombudsmen services. More than 13 percent of enrollment slots in ACF's Head Start program are utilized by children with disabilities, in accordance with the Head Start Act requirement that at least 10 percent of the Head Start enrollment slots be available for this population. In addition, ACF provides funding for training, technical assistance and information dissemination activities regarding the needs of individuals with disabilities in a variety of ACF programs, including Head Start, child care and TANF.

THE NEED FOR COMMUNITY-BASED ALTERNATIVES

Services and Supports Needed by Individuals with Disabilities

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.² Approximately 52 million individuals with disabilities reside in the community. The GAO estimated that an additional 2 million individuals are at risk of entering an institution in order to receive care.³

Many people with disabilities require help with the activities of daily living, such as dressing, eating, transferring, bathing, and toileting. Other individuals, particularly those with developmental or psychiatric disorders, may be physically capable of carrying out these tasks, but may need supervision, instruction or support to function independently. When physical or supervisory assistance is provided, tasks may include "personal assistance services," such as assistance with getting out of bed, dressed and fed, home health, homemaker and chore services, medication management, assistive devices, meals on wheels and respite services and other relief provided to families and other natural caregivers.

Currently, approximately one quarter of individuals with disabilities (approximately 12.6 million of the 54 million people with disabilities) require help with the activities of daily living. About 42 percent of these individuals are under 65, and approximately 500,000 are children. Approximately 58 percent of individuals who need help with the activities of daily living are age 65 or older. The number of individuals who require long-term care is expected to increase within the next several years, as "baby boomers" age.⁴

The vast majority of people with disabilities who need direct assistance (10.3 million or 82 percent) live in the community. Fifty-five percent of this population is elderly with the remainder under age 65. The remaining individuals (approximately 18 percent) live in institutions, including nursing homes, intermediate-care facilities for the mentally retarded, other facilities for the mentally retarded, and facilities for the mentally ill. For most individuals with disabilities, institutional placement is rarely considered acceptable unless there are no other alternatives. For people living in all locations, professionals (such as nurses, doctors, physical therapists, and speech therapists) provide essential services. Those professionals, however, provide less service overall than such direct service workers as personal attendants, homemakers, transportation workers. Outside of institutions, the majority of care is provided by family and informal caregivers. Women occupy the majority of paid direct service caregiver positions, and minority women are disproportionately represented among these low-wage occupations.

Poverty is much higher among people who have a disability, especially those under age 65, compared with the general population. Among persons living in the community, approximately 38 percent of nonelderly adults and 24 percent of the elderly with long-term care needs lived below poverty in 1990.

Who Pays: The Financing of Services and Supports for People with Disabilities

A preponderance of assistance for people with disabilities is provided directly by families, friends, and neighbors. Medicaid is the largest contributor of public funds, providing $43 billion. Medicare provided $28 billion for such assistance. Private insurance is estimated to contribute $6 billion. In addition, $34 billion is paid as out-of-pocket expenses by people with disabilities or long-term illnesses and their families.

HHS Expenditures Regarding Individuals with Disabilities

In Fiscal Year 2000, total HHS expenditures for people with disabilities were $73.5 billion. The largest of these expenditures were for Medicaid ($43 billion), Medicare ($28 billion), the Social Services Block Grant ($1.8 billion), the Substance Abuse Block Grant ($1.6 billion), and the Older Americans Act Grants ($1 billion). A total of 24 HHS programs provide significant services to people with disabilities who reside in or are returning to community-based settings.

Despite the fact that public programs pay less than 25 percent of the cost of long-term support and services, the dollar value of such expenses is considerable. For example, expenses for elderly and people with disabilities represent approximately 71 percent of the national Medicaid budget. Moreover, Medicaid represents one of the largest items in state budgets.

Medicaid Funding of Home and Community-Based Services

Medicaid historically has financed care delivered in nursing homes, facilities for individuals with mental retardation and developmental disabilities and other institutional settings. Indeed, in fiscal year 2000, Medicaid spent approximately $49.5 billion dollars in these facilities.⁵ Over the past several years, however, the proportion of Medicaid spending directed to home and community-based care has increased. In fiscal year 1990, federal and state Medicaid spending for home and community-based care comprised approximately 13.7 percent ($3.9 billion out of a total $29.5 billion spent in both institutions and community settings) of long-term care spending. By fiscal year 2000, federal and state Medicaid spending comprised approximately 27 percent ($18 billion out of a total $68 billion spent in both institutions and community settings) of monies expended on long-term care.⁶

Moreover, it is expected that demand for home and community-based services will increase, since these services are generally preferred by individuals over institutional care, and since they are, on a per capita basis, generally less expensive than institutional care.

Institutions historically have played a significant role in state and national long-term support systems. Unfortunately, the historical Medicaid bias towards institutional care created an imbalance in the options available to individuals to the point where institutional placement often became the primary rather than last resort. States and the federal government have recently made progress in "re-balancing" the system. Home and community-based services as a percentage of all Medicaid long-term care spending have increased from 13.7 percent of the total in 1990 to 27 percent in 2000.

The primary means through which publicly funded home and community-based services are provided is through the Medicaid Home and Community-Based Services (HCBS) "waiver" program. HCBS waiver programs are operated at state option. States apply to the HHS Centers for Medicare & Medicaid Services (CMS); for these waivers. If the waivers are granted, CMS allows states to limit the geographical area in which services are being offered, to target services to specific populations of individuals to be served, to control the number of individuals being served, and to cap overall expenditures in the waiver program. To receive approval for a waiver, states must demonstrate that the cost of the services to be provided under a waiver (plus the cost of other state Medicaid services) is no more than what would have been spent on institutional care (plus the cost of other Medicaid services provided to individuals who are institutionalized).⁷ This principle is referred to as the "cost effectiveness" requirement.

With the exception of Arizona, every state and the District of Columbia offer at least one HCBS waiver program. States often operate several different waivers serving different population groups. Currently, states operate approximately 260 HCBS waiver programs, including 91 programs serving individuals with mental retardation and/or developmental disabilities; 18 programs for individuals characterized as "aged" (i.e., individuals aged 65 and older); 60 programs serving individuals who are both "aged" and disabled; 40 programs for individuals with physical disabilities; 23 programs serving people with traumatic brain injuries; 17 programs for individuals with AIDS; 4 waiver programs serving people with mental illness; and 11 programs for individuals who are medically fragile and technology dependent.

In 1999, the average cost of HCBS services was approximately $15,000 per recipient, representing a range of needs and expenditures. For example, the average cost of services for individuals with developmental disabilities was approximately $30,000, and the average cost of services for aged and disabled individuals was approximately $6,000. Average per capita costs for HCBS services are much lower than the average per capita costs of institutional care, although HCBS figures do not include other expenses incurred in a home or community-based setting, such as housing, meals, transportation and the costs borne by family members and other informal caregivers.⁸

In numerous states, many more individuals seek HCBS waiver services than there are waiver "slots" available. This imbalance of supply and demand may result in waiting lists for HCBS services. In a 1998-99 telephone survey of all 50 states and the District of Columbia, only eight states reported that they believed their waiver capacity and funding to be adequate and that they did not have waiting lists for HCBS waiver services.⁹

The HCBS waivers have been used most extensively for persons with developmental disabilities. As an alternative to intermediate care facilities for persons with mental retardation (ICF/MRs), the waivers have permitted states to stabilize and then reduce reliance on such institutions. From 1993 to 1999, the number of Medicaid-eligible people served in ICF/MRs declined from 149,000 to about 118,000. The following graph shows that ICF/MRs served 62 percent of the combined number of all such beneficiaries in 1993, and only 26 percent in 1999. The percentage served in HCBS waivers went from 38 percent to 74 percent.

ICF/MR vs. HCBW Beneficiaries bar graph. See text below

Text Version

In addition to the HCBS waiver program, Medicaid also funds other types of home and community-based services. States must fund home health care services for medically necessary care, including such services as nursing, home health aides, medical supplies, medical equipment and appliances suitable for use in the home. States have the option to fund personal care services, which typically include a range of services that enable people with disabilities to accomplish certain tasks that they would normally do for themselves if they did not have a disability. Personal care services include assistance with activities of daily living and may include meal preparation, housecleaning, transportation, financial and medication management.

HHS LEADERSHIP IN PROMOTING
COMMUNITY INTREGRATION

As stated above, HHS components have spearheaded numerous efforts to promote community integration and to foster voluntary compliance with the ADA and the Olmstead decision.

For example, CMS has supported states in expanding the array of choices in community-based services and supports and in increasing the proportion of total Medicaid expenditures devoted to community options. While bias towards institutional placements remains, HHS and states have significantly expanded the services and supports available to individuals with disabilities in the community.

Three services are particularly important to community living: 1. personal care services, 2. home health services, and 3. home and community-based waivers. Progress in each of these areas is outlined below.

Personal Care and Home Health Services

Currently 31 states have opted to provide personal care services under their Medicaid program and all states provide home health services. Under grants to states made under the Ticket to Work and Work Incentives Improvement Act of 1999, 18 states intend to modify their personal assistance services program to more fully support the employment and community participation of individuals with disabilities.

HHS and states have also been exploring nurse delegation authority and choice within both the home health and personal care benefits to control cost and expand the pool of direct service workers.

Home and Community-Based Waivers

Currently, 260 Medicaid home and community-based waivers have been approved serving more than 615,000 individuals with significant disabilities. In fiscal year 2000, states and the federal government spent $12.3 billion on Medicaid home and community-based waivers. Since February 2001, 19 new waivers have been approved and 24 waiver amendments have been approved that will increase the availability of these services to individuals with disabilities.

Real Choice System Change

In September 2001, CMS awarded Real Choice System Change grants, a $64 million package of competitive grants to states and other organizations to help design and implement improved methods of providing supports and services to enable the full community integration of individuals who have a disability or long-term illness. CMS has also revised its Medicare payment system for home health services in order to encourage home visits and services that are more responsive to the needs of Medicare-eligible individuals.

CMS has also worked with states to approve innovative Medicaid waivers that promote community integration. These include "self-directed services" waivers that enable individuals or families to provide more direction over the services upon which they depend. They include comprehensive system reforms in a number of states that promote persons-centered planning together with flexible, integrated long-term support services that are free to follow each individual to the most appropriate and preferred setting. CMS also worked with Programs for All-Inclusive Care of the Elderly (PACE) to accommodate greater flexibility in how current models can provide the most effective community services. In November, CMS also approved the nation's first PACE application for permanent provider status (rather than a waiver) with joint Medicaid-Medicare funding.

OCR has played a leading role in working with states to foster voluntary compliance with the ADA's integration regulation and the Olmstead decision. OCR staff in 10 regions nationwide are aiding many of the approximately 40 states undertaking efforts to develop and implement the "comprehensive, effectively working plans" discussed in the Olmstead decision. OCR is working to voluntarily resolve administrative complaints filed with OCR that allege a violation of the ADA integration regulation. OCR is also working with expert consultants to provide on-site technical assistance to states engaged in collaborative planning efforts. With the help of these experts, OCR is developing technical assistance products to help guide states in their efforts and has conducted a specific technical assistance conference call on housing. OCR has collaborated with CMS and with other key components, including AoA, SAMHSA, ASPE and ADD to develop policy initiatives and program changes to enhance states' ability to improve access to home and community-based services and comply with the ADA. For example, OCR and other components aided CMS in developing criteria for the Real Choice System Change grants and worked closely with CMS on a series of letters to state Medicaid Directors to address Olmstead Implementation and Compliance issues.

Other HHS components are also involved in activities to facilitate the full integration into the community of individuals with disabilities. For example:

OIG, CMS, ASPE and AoA are involved in research, evaluation and demonstration activities concerning services that promote community integration and that give individuals with disabilities more control and direction over the services they require.
Grants from SAMHSA are supporting the development of community-based systems of care for people with mental illness and co-occuring substance abuse disorders, including grants in 43 states to develop and enhance state coalitions on community-based care.
Grants from AoA are providing support for family caregivers, with a focus on systems development, service components, linkages to special populations and communities, field-initiated demonstrations and national projects to enhance the development of caregiver programs. The AoA also provided grants to tribal organizations to implement a Native American Caregiver Support Program.
CDC has led the development and inclusion of a chapter in the "Healthy People 2010" publication dedicated specifically to the health and well-being of individuals with disabilities and has undertaken work to gather data concerning individuals with disabilities. "Healthy People 2010" presents the nation's health agenda for the next decade. For the first time, this agenda includes a specific chapter, Disability and Secondary Conditions, that contains objectives to improve the health and participation of people with disabilities. These objectives focus on areas paralleling those in this Presidential report -- mental health, environmental barriers, societal participation, assistive technology, long-term care, work, and school. A soon-to-be-released report, "Disability and Secondary Conditions: A Vision for the Decade," provides guidelines for implementing activities to achieve the goal of full participation.
HRSA is funding programs for children with special health care needs in accord with the Social Security Act's Maternal and Child Health Services Block Grant; funding community-based care for individuals living with or affected by HIV/AIDS; administering grant programs that support the development and delivery of health care in rural areas; training health professionals to provide care in underserved areas; and working to implement HHS' "Healthy People 2010" objective of community-based systems of services for all children in the United States with special health care needs.
IHS is supporting a variety of grant projects, funded in conjunction with agencies both inside and outside HHS, that support the development, delivery and evaluation of services to American Indian and Alaska Native individuals with disabilities.
AHRQ has begun to bring experts together to build a research agenda in the area of disability and conducted a national workshop to provide tools for consumers, providers, advocates, and state and local policymakers to assess consumer needs and planning for successful transitions from institutions, as well as increase the types and levels of support for persons currently living in the community.

BARRIERS IDENTIFIED THROUGH THE HHS COMPONENT
SELF EVALUATION AND PUBLIC INPUT

As described above, HHS has been engaged in a wide variety of efforts to promote and support the community integration of individuals with disabilities. As the self-evaluation and public input processes made clear, however, people with disabilities continue to confront barriers to full community inclusion. (A detailed discussion of the identified barriers is provided in Appendix A). These barriers cut across programs and populations. The public input regarding barriers may be broadly described and classified into the following five categories:

Imbalance in System Structure and Financing

Medicaid:

Medicare: Certain Medicare rules for home health care and durable medical equipment may limit eligibility for benefits and serve as a barrier to full integration of people with disabilities into the economic and social mainstream of their communities.

Service Gaps: HHS components and public respondents identified a number of service gaps resulting in unmet needs of various populations, including persons with serious mental illnesses, racial and ethnic minority populations, rural populations, and children and adolescents. Additional service gaps identified by HHS components and public respondents are inadequate discharge planning and difficulties in securing timely assistance to support transitions when a person moves from one service system to another. Finally, the self-evaluation and public input process identified as a barrier the shortage of adequately trained staff to provide needed personal care services in the community.

Lack of Responsiveness of Services to Meet Individual Needs

Need for Greater Assistance to Families and Informal Caregivers

Fragmentation and Lack of Coordination

Need for Increased Accountability and Legal Compliance

The self-assessment and public input processes identified barriers to community integration and offered solutions to those barriers. The information gleaned from these processes was central to the development of this report and to the ideas discussed in the next chapter for providing services and supports that promote community-based living for individuals with disabilities.

A YEAR OF NEW FREEDOM

Since President Bush announced the New Freedom Initiative in February 2001, the Department of Health and Human Services has supported a number of efforts to enhance and improve community integration for people with disabilities. Highlights of a few of these efforts follow:

HHS Community Integration Activities in 2001

February

February 15, 2001 - $113 Million to States for Caregiver Support Programs: HHS announced the release of $113 million in grants to states under the new National Family Caregiver Support Program, which helps family members provide care for the elderly at home. The grants will be used by states to run programs that provide critical support, including home and community-based services, to help families maintain their caregiver roles.

February 25, 2001 - $50,000 per state for Community Integration "Starter Grants": HHS announced the availability of $50,000 "Starter Grants" to each state and territory on request. The grants were designed to pay for the development of public-private partnerships, including consumer task forces, to advise on the use of federal grants to develop systems to improve community-based services for people with disabilities. Fifty-four of 56 states and territories applied for and received a grant.

March

March 2001 - $20,000 per State to Develop Coalitions on Community-Based Care for Persons with Mental Illness: SAMHSA announced the availability of grants to support an initiative to develop state coalitions to promote community-based care for persons with mental illness. As of June 2001, 43 states received awards to assist them in developing and enhancing state coalitions addressing the Olmstead decision. The role of the National Coalition is to provide technical assistance to state coalitions on establishing guidelines and recommendations, identifying models, best practices and technical assistance resources, and disseminating information on Olmstead implementation and effective community integration plans.

March 26 and 27, 2001 - National Blueprint for Addressing Mental Health Discrimination and Stigma: SAMHSA sponsored "Spring to Action: A National Mental Health Symposium to Address Discrimination and Stigma." With more than 400 mental health experts and consumers attending, a blueprint for action was developed that states and local communities can use to address discrimination and the effects of stigma on lives of people with mental illness by fostering community acceptance and living.

April

April 2001 - New, More Flexible Eligibility Rule in Medicaid: A new rule went into effect allowing states greater flexibility in determining Medicaid eligibility and permitting states to disregard portions of an applicant's income, such as income necessary to pay for essentials such as food and housing. Under previous rules, people in institutions could qualify for Medicaid coverage at much higher income levels than if they lived in the community, creating an "institutional bias."

May

May 24-25, 2001 - Four New Grant Initiatives Announced at National Conference on Community Integration: CMS hosted a national conference to promote more integrated, community living for persons of all ages with disabilities. At the conference, four new grant initiatives, collectively entitled "Systems Change Grants for Community Living," were formally announced. More than 500 participants, including state and federal representatives, advocates and consumers, shared information and ideas in the common goal of reform of community long-term support systems.

June

June 2001 - National Conference Highlighting Pilot Programs for Consumer-Directed Care: ASPE sponsored a national conference, entitled "Independent Choices," in conjunction with the Robert Wood Johnson Foundation and AARP to highlight pilot programs for consumer-directed care.

June 2001 - Health Disparities and Mental Retardation Initiative: HHS launched a Surgeon General's Initiative on Health Disparities and Mental Retardation to identify critical challenges and develop a national action plan to promote the health of individuals with mental retardation so that such individuals can live, go to school and work in their communities. Elements of the initiative include: a dedicated Web site; a Surgeon General's Listening Session on Health Disparities and Mental Retardation on October 10, 2001; a national conference on December 5-6, 2001, in Washington, D.C.; and products that will include a national action plan, a report on the proceedings of the conference, and a monograph describing models of existing programs providing health care services to individuals with mental retardation.

June 28, 2001 - $8 Million in Alzheimer's Disease Demonstration Grants: HHS announced the award of more than $8 million in grants to 25 states to develop effective models of care for people with Alzheimer's disease and their families. The Alzheimer's Disease Demonstration Grants to States Program, administered by AoA, seeks to expand the availability of diagnostic and support services for people with Alzheimer's disease, their families and caregivers, as well as to improve the responsiveness of the home- and community-based care system to people with dementia.

July

July 11-13, 2001 - National Olmstead Policy Workshop: AHRQ held a national workshop for state and local policymakers entitled "Beyond Olmstead: Making Community Based Services Work for All Persons with Disabilities." The workshop provided participants with tools to improve their ability to work collaboratively with consumers, providers, advocates and others on accurately assessing consumer needs and planning for successful transitions from institutions or increasing the types and level of support for persons already living in the community.

July 16, 2001 - Section 8 Vouchers National Teleconference: OCR and HUD sponsored a toll-free, nationwide conference call on "Understanding HUD's Section 8 Vouchers." The conference call, which attracted 681 participants, was designed to assist states, consumers and others involved in Olmstead implementation with information that can help address the critical shortage of accessible, affordable rental housing for people with disabilities, best practices for maximizing choice and consumer control, and strategies for expanding access to Section 8 vouchers for people with disabilities.

July 25, 2001 - Creation of Interagency Council on Community Living: Secretary Thompson convened representatives from seven federal agencies to celebrate the 11th anniversary of the ADA. At an event in the HHS Great Hall, at which Department of Labor Secretary Elaine Chao, Department of Education Secretary Rod Paige, and other high-ranking officials participated, Secretary Thompson announced the creation of the Interagency Council on Community Living. Following the event, HHS' Deputy Secretary Claude Allen convened the council's first meeting.

July 25, 2001 - $9 Million in Grants to Support Employment of People with Disabilities: HHS announced $9 million in grants to 18 states to help people with disabilities to become and stay competitively employed. The grants enable states to increase services and supports to workers and help others return to work without fear of losing health coverage. States can use the funds to build systems that provide personal assistance and supports, to reach out to people with disabilities, to train staff in new employment possibilities and to improve transportation or other support programs.

August

August 5-7, 2001 - Conference on Community-Based Care for Persons with Mental Illness: SAMHSA convened the 2001 National Technical Assistance Annual Mental Health Block Grant Conference for state mental health planners. The conference, "Partnerships for Integration: Strategies for Serving Individuals and Families," included topics on the Olmstead decision and National and State Coalitions to Promote Community-Based Care for Persons with Mental Illness.

August 13, 2001 - Promising Practices for Children with Serious Emotional Disturbances: SAMHSA released three new volumes of promising practices for families, communities and caregivers to help build exemplary systems of care for children with serious emotional disturbances and their families.

August 23-24, 2001 - Product Standards and People with Disabilities: FDA undertook an initiative to develop and revise guidelines to address the needs of older persons and persons with disabilities when developing standards.

September

September 6-7, 2001 - National Conference on Family Caregiver Support Program: The Assistant Secretary for Aging of HHS hosted "The National Family Caregiver Support Program: From Enactment to Action" conference to highlight the exciting new federal program that provides grants to states to serve the family caregivers of the growing population of older persons. More than 700 representatives of the nationwide network of state and area agencies on aging, tribal organizations and service providers attended the conference.

September 10-12, 2001 - Promoting Community Integration via PACE: CMS unveiled a new format to help states adopt Program for All-Inclusive Care for the Elderly (PACE). CMS hosted a conference to enable the sharing of information as to how states may adopt PACE to promote community living. In November 2001 CMS approved the nation's first application for permanent provider status under Medicaid and Medicare.

September 24-26, 2001 - Training for State Olmstead Coordinators: SAMHSA held the first annual Training Institute for State Mental Health Olmstead Coordinators. Technical assistance on coalition-building strategies to promote consumer and family involvement in Olmstead-related planning and incorporation of evidence-based practices was provided to participants.

September 25, 2001 - $5 million in Native American Caregiver Support Program Grants: HHS announced nearly $5 million in grants to 119 tribal organizations to implement the new Native American Caregiver Support Program. Grants were awarded to 110 tribal organizations to provide families of Native American and Native Hawaiian elders with access to information, respite care, counseling, training and supplemental services to help them meet their real-life caregiving challenges. In addition, nine tribal organizations each received $100,000 demonstration grants to develop and evaluate model caregiver support programs.

September 28, 2001 - $64 Million for States to Undertake Systems Change for Community Living: HHS announced approximately $64 million in new grants to 37 states and one territory to develop systems to change community-based reform programs for people with disabilities or long-term illnesses. The funds are part of four grant programs:

$40.8 million in "Real Choice Systems Change" grants to help states design and implement effective and enduring improvements in community long-term support systems to enable children and adults with disabilities or long-term illnesses to live and participate in their communities;
$7.6 million in "Community-Integrated Personal Assistance Services and Supports" grants to support states' efforts to improve personal assistance services that are consumer-directed or offer maximum individual control;
$11.1 million in "Nursing Facility Transitions" grants to help states transition eligible individuals from nursing facilities to the community; and
$4.9 million in "National Technical Assistance Exchange for Community Living" grants to provide technical assistance, training and information to states, consumers, families and other agencies and organizations.

October

October 1, 2001 - Children with Special Health Care Needs: National Child Health Day focused on the theme: All Aboard the 2010 Express: A 10-Year Action Plan to Achieve Community-Based Service Systems for Children and Youth with Special Health Care Needs and their Families. HHS mailed more than 5,000 kits to states and communities to help them plan events around this theme. On November 19, 2001, a national event in Broward County, Fla., for Child Health Day showcased the efforts of one Community of Excellence to put in place a family-centered, comprehensive, coordinated system of care for children and youth with special health care needs.

October 1, 2001 - $6 Million for Innovative Approaches to Family Caregiver Support Program Grants: HHS announced, as part of the National Family Caregiver Support Program, approximately $6 million in grants for 34 projects to develop innovative approaches to assist families and informal caregivers of older persons as well as grandparents and older relatives who are caregivers of children. Grants were awarded to state and area agencies on aging, nonprofit community service providers, institutions of higher learning and national organizations with demonstrated expertise in aging and caregiving issues. The five priority areas that grants focus on are: systems development; service components; linkages to special populations and communities; field-initiated demonstrations to develop and test new approaches to support caregivers; and national projects that enhance the development of caregiver programs.

October 22, 2001 - $5 Million to Enhance Community Living through Prevention of Secondary Conditions: HHS announced the availability of $5 million in competitive funds to develop and enhance the capacity of states to address the health and wellness of people with disabilities to prevent secondary conditions. These awards will enable states to enhance access for people with disabilities to preventative health and social programs, increase participation in community services and enhance independent living through elimination of environmental barriers.

November

Nov. 29-Dec. 1, 2001 - Emotional Health for Persons with Mental Retardation/Developmental Disabilities: HHS held a workshop on Emotional and Behavioral Health in Persons with Mental Retardation/Developmental Disabilities: Research Challenges and Opportunities. The workshop was designed to address key questions that arise in the inclusion of persons with mental retardation in federally funded research in the United States.

December

December 12 and 13, 2001 - Summit on Children with Special Health Care Needs: A National Summit in Washington, DC, showcased community and state successes, models and best practices related to building community systems for children and youth with special health care needs. The Summit was co-sponsored by HRSA/Maternal and Child Health Bureau, Family Voices, the American Academy of Pediatrics, the March of Dimes and other organizations.

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Long-Term Care: Implications of Supreme Court's Olmstead Decision Are Still Unfolding, United States General Accounting Office, Testimony of Kathryn G. Allen before U.S. Senate Special Committee on Aging at 6-7 (Sept. 24, 2001) (GAO Testimony)

GAO Testimony at 7.

GAO Testimony at 7-8.

GAO Testimony at 12, figure 3.

GAO Testimony at 12 - 13.

GAO Testimony at 14.

GAO Testimony at 16.

Last revised: April 21, 2002

Delivering on the Promise Table of Contents

U.S. Department of Health and Human Services [Complete Report: HTML = 315K / PDF = 426K] Table of Contents ~ Chapter I ~ Chapter II ~ Chapter IIIAppendix A ~ Appendix B ~ Appendix C ~ Timeline

Self-Evaluation to Promote Community Living for People with Disabilities

Chapter II: Structure and Funding of HHS Services for Individuals with Disabilities and Barriers to Community Integration

INTRODUCTION

HHS: ONE DEPARTMENT WORKING TO PROMOTE COMMUNITY INTEGRATION