"One of the people who contacted us was a woman whose brother was mentally-disabled," Staed said. "And her story of trying so hard for so long to find a small home, closer to her, where her brother could live with one or two other mentally-disabled people and learn to live independently ,but under supervision, was especially compelling."
Motivated by this and other real-life stories from local families of and advocates for mentally-disabled people, the Staeds founded Advocate Homes. In so doing, they - and the owners of the only other such private agency in the area, New Hope in Harrodsburg - became part of a national trend where more and more mentally-disabled people are being moved from large institutions or multi-facility compounds to small homes in community settings.
But it's a trend that Kentucky has been slow in following, according to data released recently by the State of the States in Developmental Disabilities research project. And that makes Advocate Homes and New Hope not just part of a national trend but also trend-setters in the state.
The SDD report, based on 2002 data, shows that Kentucky ranks 49th of the 50 states and the District of Columbia for placing people with mental retardation in supervised homes with 15 or fewer residents. Of the 3,613 Kentuckians with mental retardation living in facilities of every size that receive public funding, the report says that 45 percent of them are housed in facilities with 16 or more people. Nationally, just 23 percent of that population lives in such larger facilities.
There are more than 2,400 mentally-disabled Kentuckians on waiting lists for community-based residential programs. In the meantime, a suit has been filed against the state for allegedly failing to provide enough community-based programs for the mentally disabled.
State could do better job and save money
The state not only would do a better job helping mentally-disabled people live independently but it also would produce a more cost-efficient situation if it moved more quickly to place mentally-disabled people in community settings, said Harold Kleinert, executive director of the Interdisciplinary Human Development Institute at the University of Kentucky.
"The current thinking in our field is that we really can serve most, if not all (of Kentucky's mentally disabled population) in community settings, and do so much in a much less costly way," said Kleinert.
The state spends $53,000 per person each year to care for people in group homes and other small settings for 15 and fewer residents under the Supports for Living program, said a spokesperson for the state Cabinet for Health and Family Services.
In contrast, the state spends an average of nearly $149,000 a year per person to care for mentally-disabled people housed in institutions and other facilities of 16 or more residents, she said. The total annual bill for caring the state's institutionalized mentally-disabled population is $100 million, she said.
In addition to the more than 3,600 mentally-disabled Kentuckians who are in facilities of all sizes, there are another 10,600 people who live with caregivers who are over 60 years of age. Health and Family Services officials are trying to develop programs not only to bolster the development of smaller, community-based homes for mentally-disabled people but also provide more services to support caregivers, a cabinet spokesperson said.
Advocate Homes currently serves 13 people with mental retardation, ranging in age from 22 to 60. They live in groups of up to three people in five houses owned by the agency - three in Danville and one each in Junction City and Perryville. Each house has round-the-clock staffing.
The agency owns the houses, and the people designated as guardians or have power of attorney for the residents - usually family members - pay rent. But the funds that pay for the variety of services each resident receives from the agency's 22 staff members come from a Medicaid waiver program and the Supports for Living program.