State officials and a watchdog agency have reached an agreement that advocates say will systematically change the way community mental health services are delivered in Kentucky, improving the lives of hundreds of people with mental illnesses and disabilities.
Kentucky Protection and Advocacy, a state agency that advocates for the disabled and mentally ill, and the Cabinet for Health and Family Services announced the agreement Friday to provide more services for at least 600 people who have been isolated from the community in personal care homes. Such homes are for people who need assistance other than skilled nursing care.
A series of stories by the Lexington Herald-Leader and two investigations by Protection and Advocacy found that personal care homes often are an ill-equipped last resort for people with complex problems such as substance abuse, mental illness or a mental disability.
Past problems at personal care homes have included criminal arrests of operators for stealing money from residents, lack of food, poor medical care and deaths.
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Larry Joe Lee, who suffered from a brain injury and had schizophrenia, died in August 2011 after he walked away from the Falmouth Nursing Home in Pendleton County. In 2007, Larry Bruce Huff, 64, who had schizophrenia and a history of alcoholism, walked away from Golden Years Rest Home in Letcher County and froze to death.
Changes called for under the agreement will cost the cabinet approximately $19 million over the next three years — $7 million in the first year and $6 million in each of the following two years, said Jill Midkiff, a spokeswoman for the cabinet. The money will be taken from funds set aside to house people in the state's mental hospitals, she said.
Personal care homes receive $1,218 a month — $520 from the state and $698 from a resident's Social Security disability check — to care for each resident. It is estimated that as many as 2,300 people live in personal care homes in Kentucky. There are 84 free-standing personal care homes in Kentucky.
Under the agreement, people can use their state supplement of $520 a month for services that will keep them out of a personal care home. Under the current system, a person can receive the supplement only if they live in a personal care home.
That change will affect anyone who is eligible for personal care home services, not just the 600 people who will get additional services under the agreement.
"This is a major, systematic change in the way that we deliver community-based care for people with serious mental illness," said Marsha Hockensmith, the executive director of Protection and Advocacy.
Under the agreement, the cabinet also will provide community-based housing and additional services, such as case management and job placement help, to 600 people over the next three years.
As part of the agreement, the cabinet said it will consider expanding community-based options in coming years beyond the initial 600 participants.
Hockensmith said the cabinet will have until October 2014 to move the first 100 people out personal care homes. Because there are only pockets of sheltered or supported living for the mentally ill in Kentucky, it will take time for community-based services for the mentally ill to be developed, she said.
In its investigations, Protection and Advocacy found that many personal care homes were run like institutions. Many residents were isolated and offered few or no services.
Izola Fisher, who has lived at a personal care home in Lexington for seven months, has been in and out of such homes for the past seven years. Fisher, 37, said Friday that she hopes the agreement will allow her to move out and start a life.
"I just want a brand new start in life," Fisher said. "I want to get a job."
Advocacy groups in other states have successfully sued to shut down or move people out of personal care-type homes. Those lawsuits allege that such care violated a landmark U.S. Supreme Court decision that said services for the disabled should be provided in the most integrated or least-restrictive environment.
Hockensmith said Friday's agreement has been a top priority for the agency for four years.
"P&A staff have met with and listened to requests for assistance from personal care home residents and witnessed their isolation," Hockensmith said. "Persons with mental illness represent some of the last to receive comprehensive community services and supports in Kentucky."
Many people with intellectual disabilities and serious brain injuries have been served in the community for years, but people with serious mental illness do not have intensive services available that include supported-living environments. As a result, people with serious mental illness often end up in state institutions, jail or homeless, advocates say.
Protection and Advocacy will monitor the agreement to ensure that the first 600 people receive the services the cabinet has agreed to provide. In addition, an independent monitor will be named to ensure that Kentucky implements quality community-based treatment for people with serious mental illness.
Cabinet for Health and Family Services Secretary Audrey Tayse Haynes called Friday's agreement "an important first step."
"The cabinet recognizes the importance of the issues P&A has identified related to the shortcomings of personal care homes in the commonwealth to address the needs of individuals living with serious mental illness," Haynes said. "This agreement is an important first step that formalizes our commitment to increasing the amount of community services and supports available to help these individuals transition or stay in community settings whenever possible."
Donald Dryer, a longtime resident of Waynesburg Manor, a personal care home in Lincoln County, said Friday that the agreement was a long time coming.
"Many people don't know we are out here sick and alone," Dryer said. "Waynesburg Manor was not my home. I am happy and joyful I am leaving the personal care home and getting my own place."