Florida Program For Disabled Losing Funding

Mary Swinerton clutched a notebook filled with her daughter's home-care records. Its title, "One Step Closer to Independence," reflected the hopes of thousands of families eight years ago, when the state created a new program for disabled people.

The goal was to help people with physical and mental disabilities live at home, rather than in group homes, nursing homes or other institutions. And it succeeded. But severe state budget cuts threaten to reverse that progress.

Mary's 31-year-old daughter, Erin, has Down syndrome and is going blind. She also suffers from severe anxiety as a result of a sexual assault when she was 14.

"Erin can never be alone," Mary said as she paged through the home-care records, reading a report describing Erin's torn cornea, thinning retinal walls and glaucoma.

But starting this month, the roughly $57,000 per year the family has received for Erin's care will be cut to about $31,000, after deductions for state administrative fees.

The cuts could force Erin into a group home, with the state paying more than $60,000 a year, her mother said. She'll do everything in her power to keep her daughter out of an institution, she said. But Mary has other troubles. At 62, she's also battling breast cancer and mounting medical bills.

"I'm not going down without a fight," she said.

Erin Swinerton of Clearwater is one of at least 7,500 people in the state's home and community-based care program whose benefits are being cut.

"People are just shocked. They don't know what to do," said Deborah Linton, executive director of the Florida Association for Retarded Citizens.

The cuts go back to 2007, when the state Legislature voted to slice millions from the Agency for Persons With Disabilities' budget. The lawmakers devised a plan to divide the 31,000 people in the agency's home and community care program into four groups and cap their payments.

Payments previously were based on what each disabled person needed, as determined by medical assessments. Under the new system, only those deemed to have the most serious disabilities will continue to receive unlimited benefits. The others will be limited to about $15,000 to $55,000 per year, depending on their group assignment. For many families such as the Swinertons, payments will drop by half.

"It's extremely sad for these families," Linton said. "We have lots of people who live with Mom and Dad, who have taken care of them for years and now are being told to cut their spending. ... Some of them are saying, 'I just can't do it anymore,'" she said.

They "could turn around and ask for institutional placement for their children, and at that point the state will have to place them in an intermediate care facility and end up paying a lot, lot more."

Yvonne Mason, 69, was able to care for her autistic son at her Seffner home for the first time in years because of the state's home and community-care program. But the cuts could force him back into a group home, "which would kill both of us," she said.

"It's not just me," she said. "Thousands of families are losing services. The confusion and stress level is off the charts. ... We finally get the services we need, and now they want to cut them."

Erin Swinerton depends on the people around her to keep her safe and help her with the most basic of tasks, such as taking her medication, washing her hair, even drying off after a bath.

The money her mother receives comes from Medicaid, the government program for the poor and disabled. She uses it to pay for Erin's care at home, an exercise class to combat a liver disorder and a day treatment program.

Weakened by her cancer treatments, Mary has turned to another daughter, Denise, a nurse, to provide most of the at-home care. The sisters share a two-bedroom, one-bath condominium in Clearwater with three cats, Princess, Precious and Cuddles, and a dog, Fuzzy.

With Denise's help, Erin has learned to dress herself, brush her teeth and eat on her own. Denise, 37, also has taught her sister to turn on her television and put a movie of her choosing into her DVD player. Erin's favorite is "Rocky."

But she requires constant prompting, Denise said. Without that, she would sit in her chair all day watching television, rarely moving.

With the cuts, Mary will have just enough Medicaid money to continue to pay Denise about $110 per day. At an average wage of $12 per hour, that's about half of what she would pay a home-health worker for the same tasks.

Erin probably will have to give up her day program at the Pinellas Association for Retarded Citizens, which costs $120 for a four-day week. She spends most of her time, from 7:30 a.m. to 1:30 p.m., quietly assembling small boxes for a medical supply company. If she gets tired or flustered by her task, she can move to another section of the complex to make beaded jewelry or work in PARC's greenhouse. A PARC associate is always with her.

"She loves going to PARC," her mother said. "It gives her a feeling of accomplishment. She gets to interact with other people. She needs that."

Erin also will lose her once-a-week exercise class.

Without the day program, she'll be idle for an extra six hours a day, four days a week, increasing the caregiving demands on other family members.

The effect of the changes will be compounded for Mary and her husband, John. They run a van service for disabled people, and worry that many of their customers are having their budgets cut and will stop using their service or cut back.

"We could lose everything," Mary said.

This change isn't the only cut to the disabled services budget. In addition to setting up the spending caps last year, the Legislature cut several services. Erin lost her speech therapy.

This year's Legislature cut more than 5 percent from the service provider rates.

"It's been an extremely demoralizing couple of years," said Richard Lilliston, of the Hillsborough Association for Retarded Citizens.

"We're talking about people who can't defend themselves," he said. Services are getting so thin, "it's really just dangerous at this point."

"We're very concerned," said Melanie Etters, spokeswoman for the state Agency for Persons With Disabilities. "But this is a legislatively mandated requirement."

In the past, when clients asked for more services and those services were deemed medically necessary, the agency paid the cost. But that pushed the agency way over its $1 billion budget, Etters said, so the Legislature "took action to put parameters on the program."

"Everyone with our agency involved with this has been very thorough and very cautious. We're trying to be compassionate and fair at the same time," Etters said.

"This is a very difficult thing," said state Rep. Bill Galvano, R-Bradenton, chairman of the House Committee on Healthy Families. "We created the tiers to reel in the expenditures. Expenditures were growing exponentially."

But lawmakers didn't expect anyone to lose half their budgets, he said. "That was certainly not the goal, and that needs to be looked at."

The families have until this week to appeal the changes, Etters said. So far, the agency has received about 5,000 hearing requests, though some are duplicates, she said.

Like the Swinertons, Yvonne Mason is losing about half of the $60,000 she has received for her son, Sean. The loss threatens to undo years of progress, she said.

In addition to autism, Sean, 38, suffers from paranoid schizophrenia. His IQ is low, tested lately at 67. But it's high enough for him to know he's different from most people, Yvonne said. Easily hurt, and easily angered, he can fly into a destructive rage over the smallest slight, real or imagined.

Over the years, doctors recommended group homes and other institutions. But every group home experience was "horrendous," Yvonne said. He was ignored, overmedicated and abused, and his behavior just got worse.

Yvonne recalled one night about seven years ago, while she was driving home from a family gathering in Punta Gorda. Sean was asleep, after having had an especially bad day, and Yvonne was crying.

"I said, 'God, I just can't do this anymore. I've used every skill, every talent, every bit of intelligence I have to help this child. It's up to you now.'"

And like a miracle, she said, the next day she got a call that Sean was eligible for a new state program.

She was able to care for Sean at home and make her own decisions about what he needed. She hired a graduate student who began learning from a behavioral trainer how to help Sean control his fears and suspicions.

That caregiver, Chris Ponard, spends nearly every day with Sean, working with him as he takes him from barber appointments to the gym. "He's his mentor, teacher, trainer, mental health therapist, friend," Yvonne said.

"Finally, Sean is getting what he needs," she said. He still wanders the house at night. He's still easily infuriated. But he's learning how to not be controlled by his suspicions.

"He's aware, and he's trying to do better. He's a terrific person, just really terrific."

What frightens Yvonne is that if her payment cuts go through, she'll probably lose Ponard because she won't be able to give him the full-time work he needs. She pays him $20 an hour. She'll also have to give up another helper who comes in the evenings, so Yvonne can see her own clients for counseling.

"I understand the state has to make cuts. But don't destroy lives."

Lilliston predicted that the effects of the cuts will reverberate beyond the families. Some of the smaller home-care agencies will likely go out of business, he said.

PARC stands to lose dozens of clients like Erin.

"Financially, it could be crippling," said PARC's director of government relations, Tre
Littlefield. The Legislature already has cut funding for adult day training programs. "We've tapped into as many community resources as we can, but things are drying up."

Lilliston said that for years he watched the number of homeless people increase as services were cut for people with mental illnesses.

"I see the same thing happening on the developmental disability side," he said. And he predicted that one day soon, more people with Down syndrome will be sharing the streets with schizophrenics.