Improving Conditions
The 1960s ended with a number of organizations reinforcing the dual focus on improving institutions and developing community options. In 1968, the PCMR issued a series of policy statements on residential services aimed at eliminating dehumanizing conditions in state institutions.
The policy essentially focused on improving conditions in institutions. The policies also stated that "community placement can also be dehumanizing." The policies supported the following concepts:
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Habilitation: Every residential facility, including those that care for people with the most severe disabilities, should be basically habilitative. None should be merely custodial.
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Individual Program: Every resident should have an individually designed and recorded program, written down and planned by a multidisciplinary staff, and regularly reevaluated and redirected.
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Public Education: Regular public education agencies should be responsible for the education of people in residential services.
- Continuum of Care: Residential placement should be restricted only to those whose special needs can best be met by this type of service. Placement should be continually reevaluated. Communities should offer a variety of alternatives.
Photo courtesy William Bronston, M.D
In 1969, the International League of Societies for the Mentally Handicapped issued its document "Residential Care for the Mentally Handicapped – Conclusions."
The document embraced a number of key concepts:
- The Principle of Normalization is a sound basis for programming.
- Residential services should be based on a developmental model.
- The hospital model is inappropriate for residential services for most residents. The concept of lifelong institutionalization is inappropriate for the great majority of people with developmental disabilities
- The importance of volunteers in minimizing the isolation of institutions and providing opportunities for meaningful interpersonal interactions.
- The important role of parents in residential services, and the importance of residential services encouraging parents to maintain contact with their sons and daughter.
- Both the decentralized institution, consisting of small living units (maximum 20) scattered within the community, and the simplified community-like institution are viable models.
- Whenever feasible, where people live should be separate from where they work, attend classes, engage in recreation and participate in social activities.
Also in 1969, The President's Committee released Changing Patterns in Residential Services for the Mentally Retarded. edited by Wolf Wolfensberger and Robert Krugel.
The papers focused on the dehumanizing nature of institutions, the need for institutional reform and how The Normalization Principle could inform that reform, and an examination of regional service systems.
Don't Forget to Review:
Moments in Disability History
The Right To Be Abroad in the Land
Photo courtesy William Bronston, M.D.
Fred Krause, Rosemary Dybwad, Gunnar Dybwad
Throughout the 1960s, there was an increasing, though still very limited focus on support to families. By and large, this took the form of diagnostic services, guidance and information. Out of home respite also emerged. In Connecticut, for instance, a new system of admissions to residential services was developed. This allowed parents to maintain guardianship while their sons and daughters (children and adults) were admitted to state facilities for a short period of time. Short term admissions were available from 24 hours to 6 months. Families could take vacations. Individuals could be evaluated on a short term basis for semi-independent living. Families could weather a time of high stress.
By the end of the 1960s, respite care was understood to include the following:
- Homemaker services – a qualified, trained person comes into the home to provide temporary care. Demonstration projects for homemaker services and Home Training Specialist services were funded by Health, Education and Welfare (Children's Bureau and Division of Mental Retardation).
- Nursing services – typically through Visiting Nurse Associations or public health departments, nurses provide limited medical or nursing care to individuals and train family members in methods of self-help, nutrition and habilitation techniques.
- Qualified baby-sitting services – local parent groups sponsor intensive training programs offered by professionals.
- Out of home services – foster homes, temporary-care homes, family-group homes (4-6 people living with a family), group homes (seven to twelve people) with paid staff support, halfway houses, specialized nursing facilities, and state residential facilities.
It is important to recognize that much of the thinking about families at this time was in the context of the child with disabilities as the source of burden.
Photo courtesy William Bronston, M.D.
The report of a 1968 National Institute of Child Health and Human Development conference began with this perspective:
"In our society, with its stress on the American Dream of success for all, the [child with developmental disabilities] is a symbol of failure… In the family, he is almost inevitably a burden, even when he is regarded as a valued and beloved member."
Photo from PCMR Report.