Raising a child with autism is difficult.
Diane Lara is raising two.
Heavy lifting, trips to the doctor and sleeplessness — insomnia is frequent in children like hers — are a few of the challenges Lara deals with daily.
She relies on the help of caretaking assistants the state provides. But with government leaders in Nashville looking at further cuts, Lara might be dealing with more of those challenges alone.
“I’m scared,” the Shelbyville mother said last week. “I hate to say it because I’m luckier than some people, but I can’t imagine how much more tired I would be having to deal with the two of them all by myself.”
As the recession continues to drag on, Tennessee’s mental disability services and many other departments are bracing for another hit.
Two months after declaring that the federal stimulus plan had saved the state from taking drastic measures to balance the budget, state officials now say hiring freezes, layoffs and deep cuts may be needed after all to deal with a sharp decline in tax receipts.
The shortfall will force the state to draw deep from the financial reserves that it built up earlier in this decade, officials say. But it also will mean speeding up cuts — possibly even to programs such as mental health, mental disability and children’s services — that officials had hoped to phase in gradually over the next few years.
“We had to propose reductions, a lot of reductions, in order to make this budget work,” said David Goetz, the state’s finance commissioner. “Under any circumstance, it’s a very, very difficult budget.”
The cuts could mean sharp reductions to services like the state-paid personal assistants who help Lara take care of her 17-year-old daughter, Megan, and her 10-year-old son, Nickolas.
Both Megan and Nickolas have autism that results in severe learning disabilities.
Megan also has a seizure disorder, and Nickolas has cerebral palsy. Lara works part-time as a bus aide, and her husband, from whom she is separated, provides financial support.
But it is nowhere near enough to pay for the personal assistants, who are paid about $200 a day each. With each child requiring nearly round-the-clock supervision, Lara says she could not take care of them both without the assistants.
“My idea of fun is getting to go out to the grocery store,” she said.
Programs like the personal assistant service face the budget knife because tax receipts have fallen far short of projections.
In March, the Bredesen administration estimated the state would receive $11.3 billion over the next budget year, which begins July 1. Now, the administration says Tennessee will receive $173 million to $350.7 million less than that.
That is in addition to a $116 million to $172 million shortfall in the current budget year, which ends June 30.
Many state departments will be asked to bite down harder to bridge that budget gap.
Few departments, however, have already been cut as deeply as the Division of Mental Retardation Services. A preliminary budget released by the state in March called for cutting the state’s allocation to the division by 12 percent to $63.7 million in the budget year that begins July 1.
Even deeper cuts could follow. A document released along with the preliminary budget shows that the state would have slashed the division’s budget in half, were it not for the infusion of cash from the federal stimulus plan.
Now with the deficit deepening, many expect state budgeters to go back to that plan and call for another round of reductions.
Gov. Phil Bredesen did not rule out such an action late last week.
“I’ve tried to be really open,” he said Thursday. “I’m very concerned about the cuts, particularly in children’s services and mental health. I think, mental retardation, we probably have some room there because our rates are so high here in Tennessee.”
That assessment is disputed by advocates. They say cuts are already likely to harm the state’s mentally disabled population.
“We’re seeing reductions to programs that help people to function very well,” said Donna DeStefano, assistant director of the Tennessee Disability Coalition, an advocacy organization. “You start taking them away, and people end up getting hurt.
“Then you have a higher need. In the short-term, it can be very cost effective, but in the long-term it’s not.”
Several lawmakers said they hope to find some ways to keep mental disabilities and other social services from taking a harder hit.
“There comes a point in time where you cut a service so much, you have to ask yourself why you’re providing that service,” said Sen. Jim Kyle, the Senate Democratic leader.
But the alternatives are few. Tax increases have been ruled out, several legislators and other government officials said. Staffing reductions also are possible, though Bredesen pledged in March to avoid layoffs until at least next year.
“We run a pretty lean government anyway in Tennessee,” said Rep. Mike Turner, a Democrat representing Old Hickory. “There’s not a whole lot of room to cut. You’re getting into hurting people pretty quick when you start to cut.”
Diane Lara says she is already feeling the pain. Until recently, Megan’s and Nickolas’ personal assistants both came seven days a week. Now, Megan’s come six days, and Nickolas’ come five.
Meanwhile, Lara’s challenges mount. Next month, Nickolas will undergo surgery in an attempt to strengthen his legs enough to allow him to walk. The operation is meant to make him more independent, but more immediately, it will mean three months in casts.
It’s a trial that will require Lara to rely even more on the personal assistant program, she said.
“I can’t be two places at once,” Lara said. “What happens if I’m doing something with him, and she has a seizure and stops breathing?
“He will be totally dependent on me. … I’m hoping they give me the help that I need.”
Wednesday, May 27, 2009
Tennesseans brace for fewer disability services
From The Tennessean: