The 1980s: Real Support for Community Living and Institutional Closures
Two major changes to federal funding opened the door for the expansion of smaller and smaller residential settings and the operation of such settings by non-state agencies.
At the same time, the rate of institutional closures increased. In the 1980s, 46 State residential facilities closed.
As institutions closed, smaller community residential settings increased.
Photo courtesy William Bronston, M.D.
View Project Interdependence slide shows and the video "Discover interdependence"
Funding Shifts
The balance of funding tipped. In 1977, 85% of the expenditures in residential services for people with developmental disabilities went to institutions.
By 1984, that figure dropped to 60%, and by 1988, most of the funds were going to community settings. The rise of smaller community settings and significant increase in the amount of support available to families resulted from two pieces of legislation.
In 1981, The Omnibus Reconciliation Act (P.L. 97-35) created the Home and Community Based (HCB) Waiver. Senator John Chafee, a Rhode Island Republican, spearheaded an effort that would allow Medicaid funds to be used for alternative community based responses on a large and broader scale.
Federal funds were available to support people to stay in their own homes, some with their families. Support was available for foster homes (adult and child) and group homes which were not certified as ICFs/MR. Medicaid guidelines were issued for ICFs/MR facilities serving between 4 and 15 people.
Tom Nerney describes a number of efforts to reform legislation and put an end to shameful conditions in institutions during the 1980s.
Senators David Durenberger and John Chafee.
Photo courtesy Arc MN
Services Funded
The services eligible for funding, if a state chose to participate, included:
- Case Management
- Respite
- Adult Day Care
- Supported Living Arrangements
- Habilitation
- Chores
- Supported Employment
- Transportation
- Homemaker
- Personal Assistance
The groundwork for the HCB Waiver and its impact was laid in the late 1970s and early 1980s. There was interest in the comparative expense of community-based services to Medicaid beneficiaries compared to institutional care. A series of demonstrations helped generate interest among policymakers in using home-and community-based services instead of nursing care. A second change to the funding rules made support for the children in their home far more available.
TEFRA or the "Katie Beckett Waiver"
Photo courtesy Ann Marsden
In 1982, Social Security Act Amendments [Section 143 of the Tax Equity and Fiscal Responsibility Act (TEFRA), (P.L. 97-248)] permitted States to use Medicaid funds for certain children with disabilities who were 18 years of age or younger, living at home, and who would be eligible for SSI if they were institutionalized.
This type of waiver is frequently referred to as "Katie Beckett Waiver" or TEFRA. Katie's mother fought for support so Katie could stay at home.
The Waiver allowed states to make Medicaid benefits available to certain children with developmental disabilities who would not ordinarily be eligible for Supplemental Security Income (SSI) benefits because of their parent's income or resources. Services could be provided at the same level a child would receive had she been institutionalized.
In 1977, there were approximately 9,300 residential settings for 15 or fewer people with developmental disabilities. Three quarters of them were for six or fewer people. Almost all of the facilities (98.5%) were operated by non-state agencies.
Over the next ten years, the number of residential settings for 15 or fewer people almost tripled to 31,820 settings. Again, 98% of them were operated by non-state agencies.
Maureen Mitchell, Family Voices coordinator,
and Katie Beckett
Zoning: Group Home Complaints
The development of group homes was hampered by three primary factors and they were all interrelated. Local zoning ordinances, and land use policies and practices that were designed to protect the character of neighborhoods and property values contributed to significant delays in establishing group homes.
The process of meeting these requirements, obtaining licenses and permits, securing zoning variances, and the public hearings that followed led to a series of objections by neighborhoods where the homes would be located – declining property values, increased traffic, home maintenance issues, behaviors of the people living in the group homes, and neighborhood "saturation."
Neighborhood impact studies did not support these fears or perceptions. Lawsuits that grew out of these unresolved issues raised questions concerning the relationship between zoning and the integration of people with disabilities into society.
The Development of Smaller Residential Settings
By 1987, just under half (46%) of the people living in residential settings were in settings for 15 or fewer people. The other half were in settings for 16 or more, mainly state institutions. And even more were for six or fewer people (84%). During the same period the number of settings for 16 or more people actually declined slightly.
The HCB waivers stimulated the development of smaller and smaller residential settings that had ever expanding impacts over the next two decades.
By 2003, 63% of the people living in residential settings were living in settings of 6 or fewer people. Three quarters of all people in residential settings were living in settings of 15 or fewer people. This dramatic change is reflected in the numbers of people living in larger (16 or more) facilities.
This dramatic change is reflected in the numbers of people living in larger (16 or more) facilities.
Over the 20 year period, the number of people in larger facilities and nursing homes was less than half of what it had been – a drop from approximately 220,000 to approximately 107,000.
Basically, with the advent of the Home and Community Based Waiver, the incentive structure shifted. The full impact did not come until the 1990s, but began to have its effect in the 1980s.
Photo courtesy Charles Turnbull
A home in a suburban neighborhood is not exactly what this family envisioned when they made their purchase.