The case of abuse of a thirty-two old woman by her aging parents in Louisville may be the first of many as the baby boomers enter their fifties and their parents enter their later life years and face the problem of continued care giving without support. In this case, the parents had locked the daughter in her bedroom for the past eighteen months with little food or water or the opportunity to leave the room for any reason. She died and the social service agencies were unable to determine who should have been responsible to assist this woman with disabilities after she left the education system at 18.
There may be more than 50,000 aging and older people with mental retardation and other developmental disabilities (MR/DD) living today in Kentucky. Since 1945, their life expectancy has increased from 35 years to near that of their age peers.
One exception is the population with Down syndrome where the life expectancy has increased from 18 to 55 years; however, these citizens may experience premature aging problems starting in their late forties and have a 50% chance of having Alzheimer's.
Aging people with MR/DD are not at the top of a priority list for age appropriate services and supports of the Kentucky Division of Mental Retardation or the Kentucky Developmental Disabilities Council. Our aging citizens are not living in institutions or nursing homes. A survey in 1994 found only 112 living in the Intermediate Care Facilities for Mental Retardation (ICF/MR) and 365 in nursing homes. The same survey found less than 500 of these older citizens were "clients" of Kentucky's mental retardation service system. The majority are living in local communities with aging parents, family members, or care givers who will be unable to continue the responsibilities of day to day care giving at some point.
The current service system does not assist aging and older Kentuckians with developmental disabilities and their care givers. These needs and supports are not served by being placed on waiting lists for housing options, placed as clients in work training programs, or to expect senior centers and the senior adult day care sites are eagerly awaiting to help.
A major problem is the lack of training of agency staff on the impact of aging on people with MR/DD and that supports may be needed by the individual and their aging care givers. Aging services are not trained to work with people with developmental disabilities and mental retardation and developmental disabilities service system staff are not trained to understand and be aware of the impacts of phyiscal and psychological aging have on people with developmental disabilities.
Another problem is the lack of information and awareness of available supports and services that may be established in the community. Historically, aging families have not requested services and have been unaware there may be ways to get help. The majority of family care givers have not made plans for the time they will no longer be able to provide the day to day supervision and care giving. Many have expressed the hope to live one more day or breath than their sons or daughters with disabilities. Individuals who have successfully aged into the later life years also have many barriers to requesting or receiving supports and services, few if any of these aging people with MR/DD ever attended school and do not read or write and are not knowledgeable of how to access social services they may need.
James A. Stone Executive Director Return to the Main Menu