Prior to the 1930s, long-term care was largely provided by family members, public almshouses, and hospitals. In 1935, the Social Security Act created assistance programs for older adults, leading to the proliferation of private “rest homes,”antecedents to modern day nursing homes. The 1950 amendments to the Social Security Act and the 1960 Kerr-Mills Act then spurred the development of long-term care facilities funded by states and the federal government; by 1965, approximately 60 percent of nursing home residents were paid for by states or the federal government.
In 1965, Medicaid was created through Title XIX of the Social Security Act. Per the Act, Medicaid programs were required to cover certain eligibility groups (including low-income older adults, people with disabilities, families with children, and blind people) and benefits (including nursing home care). Throughout the 1970s, Congress authorized states to cover additional long-term care services through Medicaid, including services for individuals with intellectual and developmental disabilities (I/DD) and personal care services. And in 1981, Congress authorized Section 1915(b) and(c) waivers that gave Medicaid agencies the ability to cover Home and Community Based Services (HCBS) for individuals who are at risk of institutionalization.
Many of these coverage expansions were driven by advocacy from people with disabilities and their caregivers. One example is the Katie Beckett Waiver,which allows states to cover children under age 19 who have significant disabilities and are living at home.
To this day, Medicaid regulations require states and territories to cover institutional care but not most HCBS. As a result of this “institutional bias,” some states will not cover in home care, so if someone wants to receive it they have to move to a state that provides it, often away from family and loved ones.
Over the past several decades, disability rights advocates, family members, and state and federal policymakers have pushed for greater access to community-based care, which is cheaper than institutional care, resulting in major shifts in the delivery system. You, too, can become a disability rights advocate. Contact your local CIL to find out how to get involved. Together we have a stronger voice.
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