The Concept of "Normalization"
One of the "normalization" phrases was that facilities should "harmonize with housing in the neighboring community. The number of residents should not exceed the number that can be assimilated by the general community services."
From this, one might expect very small residences in typical housing. This was not the case, however. Denmark recommended a maximum of 300 children and 300 adults, either in separate or combined facilities. Sweden advocated for "central institutions" of at least 100 and no more than 300. The President's Committee recommended that institutions be no larger than 500.
The idea of smaller institutions became the vehicle for bringing services closer to the community. This model was applied in Connecticut, for instance. Instead of building a third large institution, Connecticut went to a regional center approach.
Smaller facilities were built. Instead of building large residential buildings, smaller cottages were designed for 18 people. The Connecticut Center also operated group homes and other residential programs.
Initially, however, the Center was not seen as a direct service provider:
"In theory, a regional center could function in rented space in an office building, with its director and coordinators never giving direct assistance… In practice this has not worked out that way. Realistic considerations, including financial necessities, dictated the creation of additional bed space."
Photos courtesy William Bronston, M.D.
The "Normalization Principle" Came to Mean Smaller Residential Facilities
In many cases, the "normalization principle" came to mean smaller residential facilities amidst a complex of similar facilities.
According to the ILSMH in 1969, "The Principle of Normalization suggests a 'home-like' environment whenever possible, including cottages or 'small houses', home-like furnishings, easy access to the out-of-doors, opportunity for privacy and personal property, and maximum freedom for each resident."
In 1962, the Director of the New York ARC pointed out that these were quite similar to some of the concepts of institutions back in the 19th Century. For some, it was possible to conceive of much smaller centers being developed in the community and thus do away with institutions "as we now know them", at least for people labeled "trainable and educable."
It is against this backdrop that the implications of major changes in federal funding can become clearer.
Jerry Walsh, from The Arc of Minnesota quotes Bengt Nirje, Secretary General of the Swedish National Association for Mentally Retarded, as saying:
"The key is trying to achieve the same good standard of life for people with developmental disabilities as we want for people who live in the general society. Our aim is to create the conditions of life as similar or the same as for the rest of the population. You have to do it for human dignity and human decency."
Photo courtesy of the Connecticut
Department of Mental Retardation
Photo courtesy William Bronston, M.D.
"To Bridge the Gap"
Gerald F. Walsh traveled to several northern European countries to observe services for the people with developmentally disabilities.
Wolf Wolfensberger authored a chapter entitled "Normalizing Activation for the Profoundly Retarded and/or Multiply Handicapped" in An Alternative Textbook in Special Education (Edited by Burton Blatt, Douglas Biklen, and Robert Bogdan, 1977). Wolf Wolfensberger recounts a trip to Scandinavia.
In preparation of the Program Analysis of Service Systems (PASS) training by Wolf Wolfensberger and Linda Glenn, slides were taken of the leading edge living arrangements. These images are taken in Sweden at group homes that demonstrated typical home environments.
Communty Facilities
In 1963 the Mental Retardation Facilities and Community Mental Health Centers Construction Act (P.L. 88-164) authorized $329 million over a five year period to provide "grants for construction of mental retardation facilities; grants for training professional personnel in the education of the handicapped and grants for conducting research relating to the education of the handicapped."
The Mental Retardation Amendments of 1967 (P.L. 90-170) provided a new grant program to pay a portion of the costs for "compensation of professional and technical personnel in community facilities." By the end of 1968, $65 million of the P.L. 88-164 funds went to the construction of 18 University Affiliated Facilities and 12 Mental Retardation Research Centers.
On the other hand, $48 million went to the federal share of 242 projects under the Community Facilities Construction Program. The projects were to serve 63,000 people, 24,000 of whom had not previously received services.
The so-called Community Facilities included 7 diagnostic and evaluation projects, 122 day centers, 66 combined day and residential facilities, and 66 residential facilities.
The grants went to public and non-profit organizations, including State and Special Schools, Regional Centers, Arcs, Day Care Centers, and so on.
By and large, these "community facilities" were large, congregate care operations. For instance, the grant to the Mansfield State Training School for a combined day and residential facility allowed the school to expand from serving 1,650 individuals to serving 1,954.
The grant to the Happiday Work Center allowed it to expand from 20 to 90 individuals. Nevada received two grants to construct two 24-bed children's cottages.
Of the organizations receiving grants, 48% were public agencies, and 52% were non-profit organizations. A non-profit residential facility expanded from 40 to 72 beds.
Under P.L. 88-164, state institutions received funds to construct "community facilities." At the same time, another federal program also stimulated the "improvement of State Institutions."
Photo from a report -
courtesy MHMR Construction
The Mental Retardation Hospital Improvement Program (HIP) was "a direct grant program specifically designed to stimulate improved services to the mentally retarded in state institutions by demonstrating innovative techniques which can be replicated in that institution or in others."
Between 1964 and 1969 $27 million in HIP funds were used by 110 of the eligible 175 institutions for initiating "innovative program services."
In 1967, The President's Committee reported that three quarters of the nation's 201,000 people living in institutions lived in buildings 50 years old or more – many of them "hand-me-down" mental or tuberculosis hospitals or abandoned military installations.
In 1968, Robert Krugel from the President's Committee expressed concern over the low per diems in public institutions. "The per diem costs over the country range from $3.00 to $12.00. Five of the largest zoos spend an average of $7.15 for their large animals on a per diem basis."
In 1969, almost $7 million was awarded for intensive training units, developmental programs, habilitation programs, feeding care, community and work placement preparation, cottage programming, and so on. Even with these investments, the under funding of institutions continued to be a major issue into the late 1960s.
Photo courtesy William Bronston, M.D.
The Impact of Federal Initiatives
The federal initiatives of the 1960s certainly had an impact on both the numbers of people living in them and the staff working in them. Between 1963 and 1969, the population of public institutions increased by 7% (in terms of "resident patients at the end of the year", 176,516 in 1963, and 189,394 in 1969).
At the same time, the number of full time staff increased by 55% (69,494 to 107,737). The "maintenance expenditures" increased by over 100% ($353 million to $764 million).
In 1965, changes to the Social Security Act created Medicare and Medicaid and with it another major source of funding for services to people with developmental disabilities, particularly those with severe disabilities.
Wrist counters used by ENCOR staff to document "behaviors" that needed shaping.
Again, the initial effect was to increase institutionalization of various forms and create obstacles to community living options for people with severe disabilities.
It was not until the 1980s that Medicaid became a major source of support for the kind of community living arrangements we would recognize today.
Initially, the Medicaid program provided federal matching funds ranging from 50% to 82%, including the admission of people into nursing homes.
Key developments in the Medicaid program and its role in American's health care system:
Photo courtesy of PCMR report, "MR-67"
Because people with developmental disabilities met the income guidelines to qualify for skilled nursing facilities, there was a rapid rise in the number of people admitted to them.
Intermediate Care Facilities (ICFs) were "intermediate" to hospitals and skilled nursing facilities.
In 1971, under P.L. 92-223, states were allowed to cover services in ICFs for elderly people and in ICFs/MR for people with developmental disabilities. The ICFs/MR program was established through Medicaid.
It allowed states to receive federal matching funds for institutional services that had been funded by state or local government. To qualify for cost sharing, ICFs/MR had to comply with federal standards.
Today, those standards include eight areas: management, client protection, facility staffing, active treatment services, client behavior and facility practices, health care services, physical environment and dietetic services. Institutions were also called developmental centers.
Some states chose to expand their efforts to return people to the community. For instance, the State of Washington's Group Home Bill authorized the Director of Institutions to place residents of institutions into group homes [maximum size of 20 people] and pay for their continued support.
Between 1966 and 1973, 1,000 residents of Washington's institutions returned to family, independent living, nursing homes, boarding homes, group homes and other sheltered living arrangements. In 1962, a State Hospital in California closed, though the overall population of state institutions continued to rise until 1968.
In 1967, one of New England's first community residences for adults opened under the auspices of a multi-service regional center.
Photo courtesy William Bronston, M.D.