The Tide Turns on Living in the Community
Indications that the tide was turning were clear when the President's Committee said in 1975 that "there is now demonstrable evidence that people [with developmental disabilities] can live successfully in the community in several types of residential alternatives to institutions: their own homes, foster care or adoptive homes, small group homes, hostels and independent community residential settings."
In 1976, the NARC's Research & Demonstration Institute released Community Residences for Mentally Retarded Persons. This compendium of information on community residences included a look at community residences for people with severe disabilities. The seven community residences examined range in size from 6 to 73. Most were in the 6-10 bed range.
In 1979 the Center on Human Policy at Syracuse University, under the leadership of the late Burton Blatt, released The Community Imperative:
Photo courtesy William Bronston, M.D.
The Community Imperative (1979)
A Refutation of All Arguments in Support of Institutionalizing Anybody Because of Mental Retardation
In the Domain of Human Rights:
- All people have fundamental moral and constitutional rights;
- These rights must not be abrogated merely because a person has a mental or physical disability.
- Among these fundamental rights is the right to community living.
In the Domain of Educational Programming and Human Services:
- All people, as human beings, are inherently valuable;
- All people can grow and develop;
- All people are entitled to conditions which foster their development;
- Such conditions are optimally provided in community settings.
Therefore:
In fulfillment of fundamental human rights and in securing optimum developmental opportunities, all people, regardless of the severity of their disabilities, are entitled to community living.
A refutation of all arguments in support of institutionalizing anybody because of a developmental disability. In addition to Center on Human Policy staff and associates (Ellen Barnes, Douglas Biklen, Robert Bogdan, Hillery Schneiderman, Jo Scro, Steven Taylor, and Wolf Wolfensberger), the Community Imperative was endorsed by over 300 parents, people with disabilities, researchers, and professionals.
The initial list of signers included such leaders as: William Bronston, Gunnar Dybwad, Rosemary Dybwad, Robert Perske, Alan Abeson, Allan Bergman, Ed Roberts, David Braddock, Lou Brown, Allen Crocker, Seymour Sarason, Eleanor Elkin, James Ellis, Philip Roos, Frank Laski, Judy Heumann, Linda Glenn, Bruce Ennis, Marc Gold, Fred Krause, Horace Mann, Lotte Moise, Bengt Nirje, Tom Nerney, John O'Brien, Patty Smith, Edward Skarnulis, Ann Turnbull, Rud Turnbull, and Jean Vanier, among others.
The mid-1970s saw the beginning of a movement to close state institutions.
In 1971, there were 365 institutions in the United States. By 2004, there were 186.
Rosewood Center in Owings Mills, Maryland was among the closures. Established in 1888 and over the next 80 years, the name changed but it remained a state institution until January 15, 2008, when the State of Maryland announced its closure.
Photos courtesy of Professor Thomas Neuville, Millersville University, Millersville, Pennsylvania
Rosewood
Also by the mid 1970s there were a wide variety of community residential approaches and ways of funding them.
In 1975, the President's Committee developed a profile of community residence for children and adults (People Live in Houses). It included an array of arrangements, operators and funding sources.
Children's Programs
- Foster Care and Respite Services through private, non-profit agencies with a variety of funding sources. Respite funded by County Mental Health/Mental Retardation Service Boards, ARC and private agencies, plus fees. The State subsidizes specialized adoption in 36 states.
- Group Foster Care and Supportive Services: Coordination of the services of a consortium of agencies and programs – YWCA, Crippled Children's Center, Division of Retardation, Department of Health, ARC, Children's Home Society, Public School.
- Community Residential Training Unit, operated by a Mental Health and Mental Retardation Center (a private non-profit corporation) and funded by a state grant for the establishment of group homes.
- A children's group residence operated by a University Department of Education, funded through Title 1 and an HEW Staffing Grant. Maintenance costs of residents via State's Office of Developmental Disabilities.
- A children's group home operated by a family corporation (profit making) licensed as a "family care home." Funding from the State Division of Family Services.
- A children's residence administered by a non-profit corporation. Licensed as a group home by the State Division of Retardation. Purchase of service contract with Division of Mental Retardation and Developmental Disabilities, plus monies from the county mental health/mental retardation board and funds raised by the parent organization.
- A residential care hostel operated by a non-profit agency (Inter-Agency Residential Services Board for Retarded Citizens), licensed by the State as a residential care home. Funded 80% by State, 20% community welfare funds.
- A children's group residence operated by a Comprehensive Mental Health Center (a public agency under State Department of Human Resources). Licensed as a group home. Funded by MH Center's operating budget.
Adult Programs
- Adult foster care through a state institution.
- Transitional group residence operated by State Regional Mental Retardation Office.
- Transitional hostel administered by United Cerebral Palsy Association, a private, non-profit, multi-service agency. Half of costs covered by State Department of Mental Hygiene, and half from residents' resources such as SSI.
- Group residence administered by a State Association for the Blind, a private non-profit agency. State Department of mental Health contracts for residential services. Funding from State, residents' fees, and State Association for the Blind.
- Group home purchased by a local service club with a HUD grant. Administered by a private non-profit corporation. Funding from parents, guardians, SSI, service club and other means.
- Apartment complex administered by the Salvation Army. Costs covered by room and board charges, State Department of Health, Social and Rehabilitative Service, the State's Regional Center, the United Way and the Salvation Army.
- Transitional Apartment Complex operated by a State Training School.
- Scattered Apartments operated by local ARC, a private non-profit group. Grant from State Division of Retardation and resources of local ARC, plus room and board charges (SSI)
- Apartments within a senior citizens apartment complex. Privately owned. Certified as a group home. Room and board from SSI and Social Security.
- Group residence operated by County Board of Mental Retardation (with advisory committee). 70% from State Developmental Disabilities grant, 20% from the County and 10% from room and board fees.
- Semi-permanent group home. Operated by local Adult Activity Center, a private non-profit corporation founded by the County Mental Health Board. Licensed as a group home. Funded by grant from State, matched by County Mental Health and Mental Retardation Service Board, with SSI and donations.
- Permanent residence. Operated by a private, non-profit, multi-service agency for retarded people (a regional center). Licensed by State Department of Health as an ICF/MR.
- Family Care Residence. Operated as a "private vendor." State Division of Retardation pays for room and board and supervision. (For many years, this type of program has been a popular way for institutionalized people to rejoin society.)
- Senior Citizen's Group Home. Operated by State Training School.
- Interdependent Apartment Living. Operated by State Training School
Family Support Recognized as a Strategy
Also by the mid-1970s there are clear signs that family support is being recognized as a strategy with potential.
The first systematic family support program was developed by the Pennsylvania Department of Public Welfare based on experiences at the Greater Omaha Arc. The Family Resources Services Program was developed to eliminate the need for institutionalization by giving family support and relief.
The Department hoped that families might consider bringing individuals, such as family members, out of a residential school and into their homes.
The services include Respite Care (a temporary residence), Family Aid (a person to care for the family member for a few hours at a time), Homemaker Services, Recreation programs, Transportation, In-Home Therapy, and Parent Training.
Photo courtesy William Bronston, M.D.
The President's Committee went so far as to suggest that large State institutions were inappropriate for children.
"Infants and children who were once placed in large State institutions are now able to remain in the community.
"Even people with developmental disabilities, because of community-based medical and para-medical services, are able to remain at home or reside in substitute homes.
"The residence of choice for all infants and young children should be their natural home with available supports and respite."
Betty Ford and Santa greet a child. Photo courtesy Fred Krause or PCMR
The President's Committee placed a heavy qualification on that statement when it also said "in many situations it is not in the best interest of the child or family to keep him at home."
That being said, the vast majority of public funds went to support the 9% of the total population with developmental disabilities who were living in institutions and community residential settings.
It would take many years to develop a public policy commitment to ensuring that it was in the best interest of the child and family to stay together.