Budget Cuts Hamper Disabled

Christina O'Neill's sister, Debbie, gets speech therapy from the state. And for the first time in her life, she's earning a paycheck.

But some of Florida's budget cuts have already gone into effect, and the rest will take place on Oct. 15. So Debbie is losing her personal companion, and the state has cut transportation money, which means Debbie can't go to the movies, and her work days may be cut back.

Mark used to work at Albertson's, but the Sebring supermarket closed last month. Now he wants a new job, but, said Cam Bernard, an employment counselor for Ridge Area Arc, he may not be able to find something within walking distance of his home.

Debbie and Mark are two adults with disabilities who spoke with state Rep. Denise Grimsley and Becky Simmons, a legislative assistant for Sen. J.D. Alexander on Friday morning at the Family Care Council meeting in Sebring.

Disabled people won't be identified by last name in this story. Some are easily taken advantage of, said Saundra Bass, who is on the Family Care Council and has a disadvantaged son. They're adults, but like children, they must be watched every moment. If not, they'll tell their full names and Social Security numbers, sign for a credit card, give away money, or hand over a $100 bill for a meal and get back change for a $20.

"We train them to work," said Jackie Tolliver, "and now we cut services so they can't get work. The only access my daughter Samatha has to the community is through me."

In 2007, the Florida Legislature implemented a four-tier Medicaid system. Tier 1 clients have no limit, Tier 2 can spend up to $55,000, Tier 3 $35,000, and Tier 4 $14,792.

Some are losing access to group homes, and therefore can't avoid institutionalization. But more often, said parents and caregivers at the meeting, disabled people are losing access to medical care, dentists, speech and behavioral therapists.

"I don't enjoy sitting around and doing nothing," Stephanie, 24, wrote in a letter to the legislators. "I enjoy being able to go to Ridge Arc during the week. I would greatly miss the socialization and friendships that I have."

And this was a sad truth that came from the voices in the meeting. For most disabled people, a job, or a trip to the movies with others in their Arc group isn't the highlight of their week, it is their week. Working at the Arc bookstore may be their only social endeavor of the week, and Friday some were moved to tears telling the legislators about what they're losing.

A caregiver named Dawn Lewis spoke for Billy. "Because he will not speak for himself. Without these services, he would be on the streets. He was in a gang," said Dawn, who choked back a sob. "He would be a shut-in, because he does not communicate well with others."

"I would lose everything," confirmed Billy, a beefy young man in a beard and a baseball cap who almost started to weep. "She helps me live."

"I'm going to have to stay home," said Travis, with a cheerless shrug. And, said a supported living coach who spoke for him, Travis is now at higher risk for losing his job.

Sheree Crouse has a daughter, Cody, 15, who is severely autistic. She also takes care of her disabled husband. Cody has improved, but as she gets older, she'll need more and more services, Crouse said.

Betty Altman has an 18-year-old severely autistic son who is sometimes combative. He almost broke her nose, and he has smashed windows in the house. If she didn't have a husband, a fireman who's physically able to handle the boy, she wouldn't be able to handle her own son.

"We are not able to find services in this county," Altman said.

Jonathan Haslip, another Family Care Council member, gave up a position as a district and regional manager of Denny's for an $8 an hour job to take care of his brother.

It was Diane Davies who summed it up. She puts in 60-hour weeks handling affluent clients for Bank of America in this area, but she couldn't do it without the help of personal care assistants.

Elliott can't move, even to swat a fly from his nose. He has no internal thermostat, so he can't go outside when the temperature is too high. He has violent seizures in the middle of the night, sometimes in clusters.

"Elliott had a two-year life expectancy," Davies said. She propped up a photo of a 19-year-old boy on the filing cabinet beside her. "He can't be here, so I'll put a photo of him here."

"Once or twice a year, we get a letter from the state that threatens cuts, and we are absolutely in knots over it," Davies said. The state could help itself by allowing caregivers a greater measure of control, she said. Her garage overflows with diapers and other supplies sent to her on a regular basis.

She needed a shower chair for her son, which cost $1,500. She could have gotten one on the Internet for $499. A bathroom was refurbished for her son, but the state was charged $21,000. She could have gotten a local contractor for $3,000. But if she had objected at the time, the job wouldn't have gotten done at all.

And every year, she faces a heartbreaking interview. She is asked, is Elliott getting better?

"Elliott is never going to get better. He's never going to walk across the floor. He's never going to say hi to me."