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Overview: In the United States today, approximately 54 million people -- almost one in five Americans -- have developmental, physical or mental disabilities. Their needs and abilities vary widely. But for all of these individuals, disability can affect every aspect of their lives -- with health, emotional, social and financial consequences.

President Bush has made it a top priority to tear down the barriers to equality facing people with disabilities. In February 2001, the President announced the New Freedom Initiative, a government-wide framework for helping provide people with disabilities with the tools they need to fully access and participate in their communities. The initiative's proposals that involve the Department of Health and Human Services (HHS) include: promoting full access to community life through swift implementation of the Olmstead Supreme Court decision; integrating Americans with disabilities into the workforce through swift implementation of the Ticket to Work and Work Incentives Improvement Act of 1999 (TWWIIA); and the creation of the National Commission on Mental Health. www.whitehouse.gov/news/freedominitiative/freedominitiative.html and at www.hhs.gov/newfreedom. -->

On May 9, 2002, the administration released a report highlighting accomplishments under the first year of the Initiative and announcing next steps. www.whitehouse.gov/newfreedom. --> Also on that day, HHS Secretary Tommy G. Thompson joined with other Cabinet officials in an event reaffirming the administration's commitment to the Initiative.

THE NEW FREEDOM INITIATIVE

Community Integration and Implementation of the Olmstead Decision

In June 1999, the U.S. Supreme Court ruled in the case Olmstead v. L.C. that, under certain circumstances, the Americans with Disabilities Act (ADA) requires states to provide community-based treatment for persons with disabilities and that unjustified institutionalization of a person with a disability is discrimination under the ADA. The decision recognizes that state activities must be viewed in the context of an array of fiscal and administrative considerations. It also recognizes that a state may demonstrate compliance with the ADA by adopting a plan to provide services in the "most integrated setting" that is comprehensive and effective and by ensuring that any waiting list for community-based services moves at a reasonable pace.

Executive Order 13217. As a part of the New Freedom Initiative, the President issued Executive Order 13217, "Community-Based Alternatives for Individuals with Disabilities," on June 18, 2001. The order called upon the federal government to assist states and localities to swiftly implement the Olmstead decision and directed HHS Secretary Tommy G. Thompson to oversee a federal review of barriers to community integration for people with disabilities.

The Executive Order directed six federal agencies, including the departments of Justice, Health and Human Services, Education, Labor and Housing and Urban Development and the Social Security Administration, to evaluate their policies and programs to determine whether any should be modified to improve the availability of community-based services for qualified people with disabilities and to report back to the President with their findings. The departments of Transportation and Veterans Affairs and the Office of Personnel Management, though not named in the Executive Order, also joined in the implementation effort. Together, these agencies formed the Interagency Council on Community Living under the leadership of Secretary Thompson. The agencies also solicited comments from the public through a national listening session, a teleconference and a Federal Register notice.

HHS presented President Bush with "Delivering on the Promise: Preliminary Report of Federal Agencies' Actions to Eliminate Barriers and Promote Community Integration" on December 21, 2001. Secretary Thompson presented the President with the full reports from all nine agencies participating in the self-evaluation on March 25, 2002. More information on the reports is available atwww.hhs.gov/newfreedom.

The reports outline the actions that federal agencies propose to take to begin to address barriers in these key areas: health care structure and financing; housing; personal assistance; direct care services and community workers; caregiver and family support; transportation; employment; education; access to technology; accountability and legal compliance; public awareness, outreach and partnerships; income supports; gathering, assessment and use of data; and cross-agency collaboration and coordination.

More information on HHS' ongoing efforts related to Olmstead can be found at cms.hhs.gov/olmstead/default.asp and www.hhs.gov/ocr/.

Ticket-To-Work Implementation

In November 1999, Congress passed the Ticket to Work and Work Incentives Improvement Act (TWWIIA) to give Americans with disabilities both the incentive and the means to seek employment. Through the New Freedom Initiative, President Bush has committed to the swift implementation of this important legislation.

Nearly 70 percent of people with disabilities are unemployed. In the past, the threat of losing health care coverage has been a barrier to competitive employment for these individuals. People with disabilities who rely on Medicaid or Medicare for their health coverage have been at risk of losing their coverage if their income or savings exceed certain limited levels. The law addresses this problem by allowing states to extend health coverage under Medicaid to certain workers with disabilities, either by permitting them to purchase Medicaid coverage or by extending Medicaid eligibility. In addition, the law extends Medicare hospital insurance coverage for an additional 4½ years to beneficiaries with disabilities who lose their Social Security disability assistance when they return to work.

HHS actions to implement TWWIIA include:

• To date, 38 states have received grants created under TWWIIA called Medicaid Infrastructure grants. The grants enable states to increase services and supports to workers and help others return to work without fear of losing health coverage. Congress appropriated $150 million to be available for the first five years of this program. Grants have ranged from $1.5 million to $5.8 million over four years.

• TWWIIA also created a demonstration program that allows states to receive funding to develop a program that provides Medicaid-equivalent coverage to workers with health conditions which, without medical treatment, will cause them to become disabled. The demonstration will give states the opportunity to evaluate whether providing these workers early access to Medicaid services delays the progression of actual disability. Congress appropriated $250 million over six years for this program. Rhode Island, Mississippi, Texas and the District of Columbia were awarded $77 million in funds in fiscal year 2001.

More information about HHS' ongoing efforts to implement TWWIIA is available at cms.hhs.gov/twwiia/default.asp.

Coordinating Mental Health Programs and Services

As part of the New Freedom Initiative, President Bush has committed to create a New Freedom Commission on Mental Health to improve the coordination of federal efforts related to mental health policy, funding, laws and programs. Currently, these activities involve HHS agencies including the Substance Abuse and Mental Health Services Administration, the National Institutes of Health, CMS, and the Health Resources and Services Administration, as well as the departments of Justice, Labor, Education, and Housing and Urban Development, the Social Security Administration and the Office of Personnel Management. The President's fiscal year 2003 budget for HHS includes $900,000 for the New Freedom Commission on Mental Health.

HHS PROGRAMS PROMOTING COMMUNITY INTEGRATION

The President's New Freedom Initiative is focused on promoting the integration of people with disabilities into community life. Following are additional HHS programs that promote community integration:

"Cash and Counseling" demonstrations. Since 1996, HHS and the Robert Wood Johnson Foundation have provided grants to states to support demonstrations of a "Cash and Counseling" alternative for providing long-term care support to Medicaid recipients with disabilities. Under voluntary projects in Arkansas, New Jersey and Florida, some people with disabilities receive cash allowances to purchase the care services they feel will best meet their needs and supportive services to help them manage their cash allowances. Information is available at aspe.hhs.gov/daltcp/projects.htm#UMd1.

Home- and Community-Based Services Resource Network. In cooperation with state agencies and consumers, HHS participates in a special Resource Network to bring the federal government, states and persons with disabilities of all ages together to expand access to high-quality, consumer-directed services in a cost-effective manner. More information on the Resource Network is available atwww.hcbs.org.

Older Americans Act programs and services. Disability rates increase with age. In 1996, more than one-third of older persons not living in institutions were limited by chronic conditions. Programs administered by the Administration on Aging (AoA) help meet this population's needs. More than half of the state agencies on aging administer Medicaid home- and community-based waiver programs for older people with disabilities and almost all administer state-funded programs aimed at this population. The Older Americans Act Amendments of 2000 authorized the establishment of the National Family Caregiver Support Program, which helps caregivers of older persons by providing services such as support groups, respite and adult day care. More information is available atwww.aoa.gov.

Head Start programs. Head Start, a comprehensive child development program to increase the school readiness of children from low-income families, has made at least 10 percent of enrollment opportunities available to children with disabilities for at least 20 years. The Administration for Children and Families (ACF) supports a network of resource centers that provide assistance to enable Head Start programs to effectively include children with disabilities. More information on Head Start is available at www2.acf.dhhs.gov/programs/hsb/.

Developmental disabilities programs. ACF's Administration on Developmental Disabilities serves many of the nearly 4 million Americans with developmental disabilities. Working in partnership with state governments, local communities and the private sector, the agency helps people with developmental disabilities reach their maximum potential through increased independence and community integration. More information is available at www.acf.dhhs.gov/programs/add.

Mental health and substance abuse. The Substance Abuse and Mental Health Services Administration (SAMHSA) supports programs to meet the challenges facing individuals disabled with substance abuse or mental health disorders. SAMHSA identifies practices to help communities and providers serve individuals with mental health or substance abuse disorders in areas such as housing, employment, discrimination and stigma, and family supports. The agency also supports the National and State Coalitions to Promote Community-Based Care for Persons with Mental Illness initiative to assist states in developing and enhancing state coalitions addressing the Olmstead decision. SAMHSA also has launched a national mental health coalition of more than 60 public and private organizations to promote community-based services for people with mental illnesses. More information is available atwww.samhsa.gov.

ENSURING HEALTH PROGRAMS MEET INDIVIDUAL NEEDS AND ABILITIES

Health care is a key component of helping people with disabilities lead independent lives, and HHS is working to ensure that people with disabilities have continued access to quality health care. HHS programs that help achieve these goals include:

Medicare and Medicaid. In addition to providing health coverage to most older Americans, Medicare provides health insurance to millions of people with disabilities under age 65. In fiscal year 2001, Medicare paid about $32 billion in benefits to some 5.6 million beneficiaries eligible as a result of a federally defined disability. Medicaid, the state-federal partnership that pays for health-care services for certain low-income families and individuals, also serves millions of people with disabilities each year. Medicaid includes long-term care services that benefit disabled people who receive care in nursing facilities, in their homes or in community settings. Medicaid supports about 240 state home- and community-based service waivers that provide beneficiaries with alternatives to institutional care and enable seniors and people with disabilities to receive services at home. HHS has developed the Primer for the Medicaid Program, which describes the many options states have to use the program to fund long-term care services and supports in a way that maximizes community integration in a cost-effective manner. In fiscal year 2001, the federal government paid $49 billion for Medicaid services on behalf of 7.2 million people eligible through federal disability. More information on Medicare and Medicaid is available at www.cms.hhs.gov/.

Healthy People 2010 goals. Healthy People 2010, HHS' initiative to improve the health of all Americans, includes specific objectives related to the health and well being of people with disabilities. These goals include reducing the number of people with disabilities who report feelings of sadness, unhappiness or depression that prevent them from being active, and increasing the proportion of adults with disabilities who participate in social activities. More information on Healthy People 2010 is available at www.health.gov/healthypeople/.

Children with special needs. The Health Resources and Services Administration (HRSA) provides national leadership in health care for children with special needs. Through the Maternal and Child Health Services Block Grant, HRSA supports community-based, family-centered care for children and youth with special health needs. Thirty percent of the block grant funds must be devoted to programs for these children and youth.

People disabled by HIV/AIDS. More than 500,000 HIV-positive individuals receive Ryan White CARE Act-funded services each year to treat the disabling effects of HIV and AIDS. The program supports systems of care for people with HIV/AIDS who do not have adequate health insurance or other resources. More information is available at www.hab.hrsa.gov/.

SUPPORTING RESEARCH RELATED TO DISABILITIES

HHS supports and conducts numerous research programs to promote the health, productivity, independence and quality of life of people with physical disabilities.

National Institutes of Health (NIH). The NIH sponsors and conducts extensive research investigating disabilities. Many of the institutions provide relevant research, including:

• The National Institute of Child Health and Human Development supports research and training to improve functioning in day-to-day activities for people with physical disabilities, including research directed at developing more effective medical rehabilitation interventions and assistive technologies.

• The National Eye Institute conducts research aimed at improving the prevention, diagnosis and treatment of diseases that affect the eye and vision.

• The National Institute on Deafness and Other Communication Disorders supports research into hearing and speech disabilities and the development of assistive devices. In addition, the institute is collaborating with the Department of Veterans Affairs to support the development of better hearing aids and with NASA to search federal laboratories for new technology applicable to improving hearing aids.

• The National Institute of Neurological Disorders and Stroke conducts and coordinates research on the causes, prevention, diagnosis and treatment of neurological disorders and stroke, including rehabilitation research to restore functions, prevent secondary injuries, and improve overall quality of life.

More information on NIH is available at www.nih.gov.

Disability-related health policy research. The Agency for Healthcare Research and Quality (AHRQ) helps policymakers plan for meeting the health needs of people with disabilities by examining their access to and use of health services, as well as soliciting their views of how the health care system works. AHRQ also contributes to the development of research-based tools and information that help patients and consumers, including people with disabilities, make more informed health care decisions. In addition, policy researchers contribute to developing, analyzing, evaluating and coordinating HHS policies and programs related to serving the needs of people with disabilities. More information is available at www.ahrq.gov.

Disabilities and health research. The Centers for Disease Control and Prevention (CDC) conducts research to promote the health, well-being, independence, productivity and full societal participation of people with disabilities and to reduce the incidence and severity of secondary conditions. The CDC works in collaboration with state health departments, universities and national organizations to improve tools for conducting research and disseminating health information to people with disabilities. More information on these efforts can be found atwww.cdc.gov/ncbddd/dh/.

Medical devices and assistive technology. The Food and Drug Administration (FDA) approves and regulates medical devices, including devices that assist people with disabilities in their day-to-day lives. In recent years, FDA has approved a number of devices that make a real difference in lives of thousands of people with disabilities. More information is available at www.fda.gov/cdrh/index.html.

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