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Harold McCain is lucky. A re-evaluation of his handicap and cuts to his Medicaid-funded services almost resulted in his being denied daily transportation to the LARC (Levy Association for Retarded Citizens) adult day training center in Otter Creek.
"Oh, that would have been terrible," said Harold's mother, Thelma McCain of Cedar Key. "He hardly ever skips a day, even when he's sick, because he's afraid he'll miss something."
Timely action by Thelma, LARC Executive Director Betty Walker and Nature Coast Transit Director Desiree Painter enabled him to continue his services uninterrupted. Painter found a 50-50 grant that could help Harold and other people served by Nature Coast Transit, and the county and Thelma will split the rest of the cost to transport Harold.
Thousands of mentally handicapped people in Florida, also subject to evaluations and cuts, won't be as lucky as Harold, and Thelma says that's not fair.
"It seems like every time they want to save money, they cut services to the people who can't help themselves," she says.
Because of that, McCain says she's joining an appeal by more than 20 other LARC clients and their families to force a reevaluation of funding for people with cognitive disabilities.
With the passage of the current state of Florida budget, the Florida Legislature required the Agency for People with Disabilities (APD) to evaluate all 31,000 mentally handicapped people in Florida who currently receive funding from the Medicaid waiver. The results of those evaluations are set to go into effect October 15, and Walker says many mentally handicapped people in the Tri-County will be hurt by the outcome.
Up until last year, the Medicaid waiver was divided into two tiers: the Developmental Disabilities Medicaid Waiver (known as the big waiver) and the Family and Supported Living Waiver (known as the small waiver). The big waiver, which serves about 25,000 enrolees, had no cap, administering funds as needed; while the small waiver was capped at $15,000 per person per year.
Thelma believes that Harold, 43, who has Downs Syndrome, was on the big waiver, because he was receiving about $16,000 per year. With his recent assignment to tier four, Harold's waiver has been cut by just over $1,000. He would still be able to pay for his support coordinator and his adult day training services, but not his four-day-a-week transportation to LARC. It could have been far worse.
"It's not really affecting us that much," said Thelma. "It's not us that I worry about. It's all those people who don't have a big caring family like he has."
Under the new guidelines, APD created a four-tier system in which only the first service tier is uncapped. The other three tiers have caps on both funds and services available. Tier two is capped at $55,000 per year; tier three, $35,000. The fourth tier is capped at $14,792, slightly below the limit of the old small waiver.
Walker says she fears the revised waiver tiers will force caregivers and clients into bad decisions about which services to pursue and which to decline.
"There'll be people that will have to just sit home all day in front of the TV," she said. "All alone. They'll regress - they'll lose all the progress they made with the training."
Harold won't have to make hard choices about his services - Thelma's already declined most of the services offered, simply because he doesn't need them.
"I don't want to take anything we don't need," she said.
Harold doesn't need to pay for a companion, or somebody to drive him to church, or a supported living coach, because he lives at home with his mom and dad, Thelma and Mac, takes the church bus to church, and goes every day to visit a huge number of family and friends. Living on Kiss-Me-Quick, where he was born and raised, he has a freedom of movement and security that few other mentally challenged people can hope for.
"When he comes home from LARC in the afternoon, he gets himself a snack, then he goes around the corner to see Ken Daniel, goes to see Bubba (former police chief Bubba Castell), goes to Aquafarms, or James (his brother) will come get him and let him help with the fire hoses," Thelma said.
"He's just all over the place, but he never goes off the little island here, unless Bubba or somebody rides him into town."
Although Thelma is quick to remind the interviewer that Harold won't be badly affected by his waiver change, there's something about the reassignments that puzzles and upsets her. Guidelines from APD state that one of the primary criteria for reassigning waiver recipients to tier four is their place of residence.
Nearly all waiver recipients who live at home with their families will be reassigned to tier four, regardless of the extent of their disability. If they move out of the family home into their own apartment or group home, they will be eligible for placement in a higher tier, along with supported living and supported employment services, if applicable.
"That just doesn't make sense to me," Thelma said. "Why do they want to pay extra money to force him out of his home? There are other people who need the money more than he does."
McCain says that about four months ago, some person of authority - perhaps a services coordinator, perhaps a state consultant - tried to persuade both Harold and her that Harold should move to Chiefland and get a job.
"He looked like he was about to cry when he came in here, and I asked him if he'd gotten in trouble with Betty," Thelma said.
On hearing the suggestion that Harold move out, Thelma was furious.
"She told me I was being selfish, keeping Harold here with us," she recalls. "I told her, 'I've had him for 42 years - do you think I'd give him up now?' If I made Harold move out, I'd be tarred and feathered in Cedar Key."
Besides, she says, although he knows how and when to take his other medicines, "who is going to give him his insulin?"
Harold was no less adamant.
"I couldn't leave (his cousin) Jamie McCain," he said.
All these contradictions add up to the reasons Thelma is appealing Harold's waiver tier reassignment. The outcome of the appeal will not be known at least until Oct. 15, the deadline to appeal and the date for assignments to go into effect.
"I'm not looking for more money," she said. "And I wouldn't mind if they were trying to save money so that some other people could get off the waiting list to get services. But they aren't - they're just taking away from people who don't have anything."
Next week: The ripple effect - how budget cuts to individuals threaten all Levy County's mentally handicapped.