FRANKFORT — The continued placement of mentally ill residents in Kentucky's personal care homes is a violation of federal disability laws, a watchdog state agency said Monday.
Kentucky's personal care homes unfairly segregate people with disabilities from the community, denying residents their right to interact with non-disabled people to the fullest extent possible, according to a report by Kentucky Protection and Advocacy. The group is an independent state agency that protects and promotes the rights of people with disabilities.
"Personal care homes fail to integrate persons with disabilities into the social mainstream, fail to promote equality of opportunity, and fail to maximize individual choice," the report said. "They restrict community and integration and interactions with individuals who do not have a disability."
The report titled "Personal Care Homes in Kentucky: Home or Institution?" includes information obtained during interviews with 218 people living at 20 of Kentucky's more than 80 personal care homes.
There are about 3,000 people living in personal care homes across Kentucky. The homes provide long-term care for people who do not need full-time nursing care but need some assistance.
Of those interviewed for the report, 86 percent reported having a mental illness. An additional 10 percent said they had an intellectual or developmental disability.
"Continued placement of persons with mental illness in them is a violation of the Americans with Disabilities Act and the Olmstead decision," the agency said.
In the case of Olmstead vs. L.C., the U.S. Supreme Court ruled that "unjustified isolation ... is properly regarded as discrimination based on disability."
Ruby Jo Cummins Lubarsky, president of the Kentucky Association of Health Care Facilities, responded to the report by saying personal care homes provide a valuable and much-needed service.
"These homes are licensed health care facilities regulated by the Office of the Inspector General within the Cabinet for Health and Family Services. Personal care homes must maintain compliance with state laws and regulations in order to maintain their license to operate in Kentucky," Lubarsky said. "In addition to the regulatory environment that personal care homes operate, these homes receive limited income to meet the needs of the individuals they serve."
Lubarsky said her group remains committed to working with public policy makers to "seek ways to evolve Kentucky's personal care home program."
Under Kentucky laws and regulations, personal care homes are required to afford residents many rights and services, including planned activities, clean conditions and, in most cases, the right to leave the home.
But the report found that some homes don't meet those standards.
One unidentified resident told protection and advocacy officials, "I spend my time sitting on a milk crate in the shade," the report said.
The report cited several problems in Kentucky personal care homes, including the following:
■ Residents are segregated from the community, limiting family relations, social contacts, economic independence and cultural enrichment.
■ Residents are subjected to regimented times for meals, often with assigned seating, medication, smoke breaks, curfews and bedtimes.
■ Residents are not able to have private phone conversations, are not always able to refuse medication and are not able to choose their own roommates.
■ Residents have virtually no privacy, and some are not able to lock their bedrooms.
■ Residents are subjected to activities that are demeaning and not always age appropriate, such as coloring, puzzles, board games, bingo and bowling with plastic pins.
■ Residents are not able to shop for clothes, are not getting enough food and are not provided alternative living options other than homeless shelters or the streets.
■ Residents in some homes share bathrooms. The furniture in the majority of the homes is old, filthy and in disrepair. The mattresses are old and stained, and many beds do not have adequate linens. The physical structures are in disrepair. There are leaking roofs, peeling paint, holes in ceilings, exposed cables, uneven flooring, moldy bathrooms with tiles missing, and in some cases, bathrooms that are not accessible.
"More often than not, an unpleasant odor was present throughout the personal care home," the report said.
At one personal care home, officials found a fence around the home that was padlocked, and only staff could unlock it, restricting residents' ability to leave.
Continuing to place people who have a mental illness in personal care homes perpetuates unwarranted assumptions that those people "are incapable or unworthy of participating in community life," the report said.
That said, in most communities, there is little available affordable housing, public transportation or crisis services, according to the report.
When the state deinstitutionalized the mentally ill in the 1970s, there was not a robust community-based network in place, said Kelly Gunning of the National Alliance on Mental Illness of Lexington. As a result, personal care homes are the only place that will take the seriously mentally ill, she said.
Gunning said not all personal care homes are bad. They should not be shut down without another community-based treatment option in place, she said.
"There needs to be more rigorous enforcement of the system already in place," Gunning said. "Then we need to begin to work on a new system with more wrap-around services, including supported housing."
There are only two residential supported housing programs in Kentucky — one in Louisville and one in Lexington.
Gov. Steve Beshear included a limited amount of funding — roughly $6 million — for community-based treatment for the mentally ill, which would include supportive housing, in his two-year budget proposal. However, that will serve only about 400 people.
The question of whether personal care homes are the appropriate places for people with mental illness is under debate in the Kentucky General Assembly.
The House budget plan included Beshear's proposal, but it's not clear whether it will remain in the Senate's version of the budget.
The Senate has passed Senate Bill 115, which calls for potential residents to be screened by medical professionals to determine whether a personal care home is an appropriate placement. The bill sponsored by state Sen. Jimmy Higdon, R-Lebanon, has not yet been called for a vote in the House Health and Welfare Committee.
In August, a personal care home resident from Lebanon with a history of mental illness disappeared. Four weeks after Larry Lee disappeared, his body was found on the banks of the Licking River not far from Falmouth Nursing Home in Pendleton County.