Amid legislative action on 'Larry's Law,' report says mentally ill and intellectually disabled don't belong in personal-care homes

By Tara Kaprowy
Kentucky Health News

As state legislators move to change the procedure for admitting mentally ill patients to personal-care homes, a new report argues those patients shouldn't be in the institutions at all — and neither should people who have intellectual disabilities.

Kentucky Protection & Advocacy, an independent state agency, argues personal-care homes promote "congregate" and "segregated" living arrangements and, as such, run counter to the Americans with Disabilities Act and a court decision saying disabled patients  should live in the "most integrated setting," meaning one "that enables individuals with disabilities to interact with non-disabled persons to the fullest extent possible."

The report is based on data collected from 218 people in 20 of Kentucky's more than 80 free-standing personal-care homes. Of the facilities visited, 85 percent of the residents living there either had a mental-health diagnosis or an intellectual disability. The visits were unannounced, and individuals were asked at random if they wanted to participate in the survey.

The report found residents in personal-care homes are often restricted from their community either because of lack of transportation — nearly 43 percent said they had to walk in order to go anywhere — or because the home is geographically isolated from most of the community. Staff also rarely plan outings, with one in three respondents saying it never occurs. Another 14 percent said it happens "a couple times a year" and 14 percent said it happens weekly.

Though community mental health centers have programs for counseling and rehabilitation, only 13 percent of personal-care home residents said they go. "Many residents expressed interest in attending the therapeutic rehabilitative programs and the community mental health center for counseling or case management services; however, the staff at PCH would not arrange it," the report reads.

Adding to the argument that residents live in a congregate arrangement, the report points out residents are "subjected to regimented meal times, often with assigned seating, medication, smoke breaks, curfews and bedtimes;" have roommates but are not able to choose them; are not always allowed to refuse to take their medication; and have limited visiting hours.

Still, when asked if they have any complaints about living in a personal-care home, 51.2 percent said they didn't. Nearly 46 percent said they did, and 3.2 said they were unsure. Being lonely or having nothing to do was the single biggest complaint. To download the report in PDF form, click here.

Two bills have been filed to change the way people with mental illness or intellectual disability would be admitted to personal-care homes. Senate Bill 115, which the Senate Health and Welfare Committee approved today, would require that a potential resident receive a medical exam that includes a medical history, physical exam and diagnosis before being admitted. The same would be required by House Bill 307, which would also require more assessment for a person with an acquired brain injury. It hasn't seen action since it was posted in committee Feb. 6. 

The bills are dubbed "Larry's Law," after Larry Lee, who disappeared in August from Falmouth Nursing Home. Lee, who had a brain injury from childhood, had been diagnosed with schizophrenia, bipolar disorder and diabetes. He was found dead four weeks after his disappearance on the banks of the Licking River, which flows through Falmouth. (Read more)

"Larry Lee is not the first person to walk away from a personal care home and die," Beth Musgrave and Valarie Honeycutt Spears write for the Lexington Herald-Leader, citing cases from Grant and Letcher counties. (Read more)