We are people who want the freedom to choose where, and with whom we live, in a place we can call our home, a place that is accessible to us, and that we can afford.
(Ohio Olmstead Task Force)
Who Relies on Long Term Services and Supports?
According to the 2000 Census, one in five Americans has some level of disability and one in ten has a severe disability. This translates to 2.1 million Ohioans with some level of disability and 1.1 million with severe disability.
We all have a personal connection to the people behind these statistics. Many live with a disability or care for someone who does — we may ourselves be disabled, or we care for a loved one who is — a child with autism, a sibling with mental retardation, a spouse with muscular dystrophy, or a grandparent with Alzheimer's disease. We often encounter disability without knowing it — a co-worker recovering from mental illness or a neighbor struggling with addiction. And all of us who take our health for granted must understand that disability can enter our life at any time — through accident, illness or age.
The exact number of Ohioans with a disability is unknown. Ohio's human services departments have information about the number of people served through public programs, but it does not include the larger number of individuals who rely on services provided directly by family and friends or those receiving services paid by private insurance. The information below provides a snapshot of Ohioans with disabilities who rely on publicly funded services and supports.
- 72,000 people over age 64 with severe disability (they meet Medicaid requirements for nursing facility care) receive publicly funded services — 30 percent in home and community settings (21,000 people) and 70 percent in institutions (51,000 people).
- 189,690 adults under age 65 and 43,000 children under age 21 qualify for Medicaid based on disability. Many of these individuals (but not all) also receive non-Medicaid services from other state departments.
- 67,888 Ohioans with mental retardation or another developmental disability receive publicly funded services — 88 percent in home and community settings (57,000 people) and 12 percent ICFs/MR (7,500 people).
- 233,500 Ohioans receive publicly funded mental health services in community settings, including 64,943 severely mentally disabled adults and 41,688 emotionally disturbed children; only 412 Ohioans stay in public psychiatric facilities for more than one year.
- 93,000 people receive publicly funded alcohol and drug addiction services in community settings.
All of these individuals with a disability need some services or supports, and many receive services from more than one delivery system. Some people who might be eligible for publicly funded services do not receive them, and thus are not counted at all. Perhaps it is better that the state does not have the data to organize people into these narrow categories. It emphasizes that every person has different needs, and that these may be more complicated than any one delivery system can accommodate. The point is to acknowledge every person with a disability as a full and equal participant in community life.
What Are Long Term Services and Supports?
Long-term services and supports include a variety of activities. It could be a neighbor preparing a home-cooked meal, a church van providing transportation to the doctor's office, or a nurse working in the home to provide skilled care. Additional examples include:
- Treatment, including medical, behavioral health, and rehabilitation programs;
- Help with daily activities, such as feeding, dressing, bathing, and helping a person who cannot walk or is incontinent;
- Care planning and case management;
- Income support through Social Security;
- Vocational and educational services, including supported employment and job training;
- Day programs, including activity centers, habilitation and adult skills programs;
- Facility based services;
- Transportation; and
- Other quality of life services, including leisure activities.
Most long-term services and supports are provided in home and community settings. Less than one percent of the total U.S. population—and less than four percent of the population that includes people with some level of disability—resides in a nursing facility or other long-term care institution (estimates based on the 2000 Census). The likelihood of receiving services in a home or community setting rather than a facility-based setting varies significantly by disabling condition. For example, almost all Ohioans with severe mental illness receive publicly-funded services and supports in the community, compared to only 30 percent of all seniors with a severe disability (70 percent reside in a nursing facility).
Who Provides Long Term Services and Supports?
Family members and friends provide the vast majority of long-term services and supports for people with disabilities. These informal caregivers offer their time, energy, companionship, and financial resources to help ensure the well-being of the people they care about. Although it is difficult to put a dollar value on this care, the Scripps Gerontology Center estimates that informal care provided to Ohio seniors was worth about $5 billion in 1999.[1] The best estimates are that family caregivers provide approximately 60 percent of the care and support received by people with serious mental illness.
Many people with disabilities rely on service providers paid for by private insurance when their needs exceed the resources of family and friends. These providers include individuals who provide a specific service, like personal care or respite care; large companies that provide access to a network of various services; and facility-based service providers, including nursing facilities, intermediate care facilities for the mentally retarded (ICFs/MR) and state-run facilities such as inpatient psychiatric facilities and Mental Retardation and Developmental Disabilities (MR/DD) developmental centers.
When individual and family resources are not sufficient to ensure access to necessary services, a variety of government programs are available. Each state has a mix of programs and funding sources. The Medicaid program pays for many of these services in all states. Other funding sources include the federal Social Services Block Grant and Older Americans Act funds, state general revenue and county levies.
People with disabilities face challenges related to the original design of federal programs like Medicaid. Under Medicaid, eligible people with disabilities are "entitled" to facility-based care—but home and community services are considered "optional." States are required to apply for a "waiver" of the institutional requirement in order for federal dollars to follow people into home and community settings. Section II of this report summarizes how Ohio relies on Medicaid waiver programs to provide home and community based alternatives to facility based care, and Section IV describes the state's commitment to build on this strategy.
What Is Olmstead?
Ohio's commitment to improve and expand home and community based long-term services and supports was reinforced in a 1999 U.S. Supreme Court decision, LC. V. Olmstead. In Olmstead, the Supreme Court said that unnecessary segregation of persons with disabilities is discrimination under the Americans with Disabilities Act (ADA), and that a state must provide community services to qualified individuals when:
- The state's treating professionals believe it is the most appropriate setting;
- The person (or authorized representative) chooses it; and
- The placement in the community can be reasonably accommodated taking into account the resources available to the state, including consideration of the needs of others.
A state can show that it is complying with the ADA if it has:
- A comprehensive, effective working plan for placing qualified persons with disabilities in less restrictive settings; and
- A waiting list, if needed, that moves at a reasonable pace.
What Is the Ohio Olmstead Task Force?
The Ohio Olmstead Task Force is a grass roots organization created by people with disabilities to make the Olmstead decision a reality in Ohio. On November 24, 2003, the Task Force hosted and Ohio Legal Rights Service sponsored a public forum to hear directly from Ohioans who rely on long-term services and supports. In a strong, unified, and unequivocal voice they said that the Olmstead vision must become a reality in Ohio.
Their words—which are quoted throughout this report—reflect the best qualities of citizenship: an understanding of the law, a desire to exercise rights, acceptance of personal responsibility, and contribution to society. And their words express the greatest goals of humanity: freedom, independence, individuality, acceptance, commitment to family and community, and the pursuit of dreams. In their own words:
- We are people who want the freedom to choose where, and with whom we live, in a place we can call our home, a place that is accessible to us, and that we can afford.
- We are people who want to choose who assists us to care for ourselves.
- We are people who want and benefit from family and community in our lives.
- We are people who want to work, and who want to be contributing members of our communities.
- We are people who want affordable health care for ourselves and for our families.
- We are people who want information and assistance on how to effectively access services.
- We are people who want access to our government and who want to be able to move about freely in public places in our communities.
- We are people who want Ohio to be the nation's leader in implementing the vision of Olmstead.
What Is Ohio Access?
Ohio Access is Ohio's Olmstead plan. It is the state's response to the voices for change—a strategic plan to improve long-term services and supports for people with disabilities. Governor Taft formalized the Ohio Access planning process in June 2000. From the outset, the Ohio Access initiative has been consistent with the direction set by Olmstead. It is a call to action for all Ohio agencies that serve persons with disabilities:
- Aging (ODA)
- Alcohol and Drug Addiction Services (ODADAS)
- Budget and Management (OBM)
- Health (ODH)
- Job and Family Services, including Medicaid (ODJFS)
- Mental Health (ODMH) and
- Mental Retardation and Developmental Disabilities (ODMR/DD).
This is the second Ohio Access report. The first Ohio Access report was released in February 2001 in response to Governor Taft's instructions to his cabinet to conduct a broad review of the state's existing system of services for people with disabilities, obtain feedback from the public, and make recommendations for improving these services.
Ohio has significantly improved long-term services and supports since 2001, and is in a better position today to do more. This report starts with a vision for Ohio in which every person with a disability lives with dignity in a setting they choose. It documents significant progress toward this vision over the past three years and lays out a clear plan for 2004 and beyond.
As you examine this report, you will encounter a number of facts that describe Ohio as of January 2004. These sections of the report are outdated already. However, you also will encounter values of lasting importance — opportunity, participation, independence, financial security, choice, and consumer direction. These are the ideas that make Ohio Access a living document, and motivate the Taft Administration's steadfast commitment to change.
[1] "The Value of Long-Term Care in Ohio: Public Dollars and Private Dedications," S.A. Mehdizadeh and L.D. Murdoch, Scripps Gerontology Center, May 2003.