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Congregate Living

Recently, there has been much in the local and nationwide press regarding long term institutional living, especially for adults with mental retardation. In many states, as the result of lawsuits, institutions have been closed, almost always against the wishes of the residents and their families. Generally speaking, the residents of the congregate facilities are the most handicapped group of clients in the mental retardation system; and most of them have more than one disability. Understandably, their families want them to be able to remain in the protected environment they have lived in for many years.

Persons with multiple severe disabilities are expensive to care for, just as people in the Intensive Care Unit of any hospital are expensive to care for. These persons will be expensive to take care of wherever they live. Cost calculations are arrived at differently in the institutions than in the community, which makes it difficult to compare them. Our national affiliate, Voice of the Retarded (VOR) is in the process of conducting a detailed study of this subject. If you would like to support this research study please contact VOR directly.

Regional Centers and Southbury Training School in Connecticut

Most adults with mental retardation prefer to live in a community setting, at home with their parents, in a group home, in Supported Living or independently. Persons with severe or profound retardation, especially those with additional problems with speech, ambulation, seizures, or difficult behaviors prefer to live in congregate settings, where specially trained staff provide all the services they need in the place where they live. More than 75% of the Southbury Training School (STS) residents function at the developmental level of under 5 years old. More than half of them function at a level under 2 years. They are very different from persons who can work in the supermarket.

STS and most of the Regional Centers are classified in the Medicaid Program as ICF/MRs (Intermediate Care Facilities for the Mentally Retarded). Every resident must meet eligibility requirements which are re-evaluated every year. The State of Connecticut receives reimbursement for 50% of the total cost of care of each resident.

Residents of STS and the Regional centers are, in general, very happy to be living there. However, they can, if they wish, ask to move to a community residence under the HCBS Waiver Program (Home and Community-Based Services). It is a legal requirement of the Medicaid Program that the recipient of these services be offered a choice between institutional and community services; in fact, the Choice Form which must be signed in order for the state to receive reimbursement for HCB Servcies stipulates tha tthe recipient of the services or his agent can change his mind at any time.

Plenary Guardians make decisions about all important aspects of their ward's life (where to live, where to work, medical care, etc.). This right is conferred on them by a Probate Court Judge who has ruled that the ward "has been determined to be totally unable to make informed decisions about matters related to his care." 95% of the STS residents have Plenary Guardians.

FORConn supports the right of guardians and families to make decisions fo rthe retarded relatives if the relatives are unable to do so and understands why Southbury families have chosen to have their relatives remain at Southbury. FORConn also supports the right of STS families to choose community living for their relatives when they feel that is the rights place for their relative to live.