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Sunday, August 26, 2007

By Anthony Westbury
Editorial

An effort by Gov. Charlie Crist to reduce state funding could mean the difference between life and death, local advocates for adults with disabilities say.

Tallahassee agencies are making cuts to stem a shortfall of $1.5 billion. Yet those charged with caring for the severely disabled argue a plan to lop off around $93 million in the Agency for Persons with Disabilities budget could mean thousands of patients across Florida receiving fewer hours of care. This, their caregivers warn, would mean many being institutionalized rather than being able to stay in their own or group homes.

Leo Flannery, 73, has four adult children with a rare gene mutation that causes hundreds of epileptic seizures every minute. Flannery's three sons (the worst afflicted) are bedridden, require 24-hour-a-day care to be fed, changed and turned to avoid getting bedsores. Flannery describes the private patient care assistants who look after his sons 14 hours a day, as a godsend.

Yet, beginning Oct. 1, the state is intending to cut patient care in cases like this to a maximum of 180 hours per month. That works out to 5 hours and 45 minutes a day per patient. The net result is that parents like Flannery will have to choose, he said, between shouldering more of the burden themselves or institutionalizing patients.

Flannery and his wife refuse to do the latter, but worry what will happen to their three sons — the worst afflicted — when they can no longer care for them.

Katherine Withers has cerebral palsy. She's in a wheelchair, but is bright and articulate. She says her current level of care is the best she's ever had.

"I'm in my sixth group home now, and it's the best I've ever had. They have great staff who really care. Jeanne (Schwab, her support coordinator who works for a private agency, Service Planning Network North, based in Fort Pierce) cares for me. She takes me to see the doctor, the dentist. She's been with me for 12 years. A state employee wouldn't do that. Prior to Jeanne, I had terrible experiences with state caseworkers. There was a new one every six months, and I've seen people left with bedsores, in diapers full of feces."

Part of the state plan is to transfer the supervision of patient care assistants to state-employed caseworkers rather than private agencies. This, the thinking goes, will allow the Agency for People with Disabilities to control spiraling costs.

Yet, the private system seems to have worked well since the 1990s. It maintains closer relationships, keeps patients in familiar settings and probably saves money overall, advocates say.

"The State of Florida has done the disabled a great injustice," Donna Powell of Vero Beach said in a letter to Gov. Crist.

Powell's cousin is John Hennessey, 66. He has Down syndrome, is blind and needs 24-hour care.

He relies on his patient care assistants (who've been with him five and 14 years) to feed him in such a way that food does not enter his lungs, which could be fatal. Because of skin allergies, John must be moved every 30 minutes to protect his sensitive skin from sores or rashes.

Without such complete care, Donna believes, he'd get sick and die.

It's tragic that people like John or Katherine, who cannot look after themselves, are at the mercy of dollars and cents. There's got to be a better way than this new state plan.