Autistic therapy program threatened by budget cuts

About six months ago Deane Amyx of Greenbrier heard words from her daughter she wasn't sure she would ever hear: "Momma, I love you."

The mother was sitting, rubbing her daughter's arm, "because she still wouldn't let us hug her much" when the toddler, then about 3 1/2 years old, looked up at her mother and said those sweet words.

Amyx was happily surprised because "they had told me she may never distinguish me from anyone else."

Looking at Erica Amyx today, a month away from her fourth birthday, she looks and acts like a normal, spunky, loving child. When stirred from a nap recently at the Faulkner County Day School, where she goes each weekday, she woke fairly easily and rested her head on her mother's shoulder as her long, brown hair was brushed and put up in a pink bow.

Within a few minutes, she was walking around the Day School, holding hands with her mother, chatting with visitors, smiling at therapists who walked by and hamming it up for a photographer.

About two years ago, when Erica first started coming to the Day School, she was withdrawn, would not make eye contact with anyone, had stopped speaking and would not allow anyone to touch her.

Erica is autistic.

"It's like she was in this little box she could not stand to be hugged or touched and as a mother, that kills you," Amyx said. "But now she's back in our world. She can tell you her name and before she didn't even know she had a name."

While the numerous therapies she receives at the Day School have helped Erica to come out of her box, the girl is still probably about a year behind. Her next evaluation is in February, but at 24 months of age, she was at about a 15 months' mental and social level. At her last evaluation, at 36 months, she tested at about a 26-month level.

"Her greatest improvements have been in her speech," Amyx said. "For a long time, she didn't say anything."

The beginning

Erica was born a healthy baby, weighing 10 pounds, 8 ounces. There were no complications in the pregnancy and the only medical difference between her birth and others is that is was a Caesarian section. But Erica's older sister, Caitlin, now 11, was born the same way and had always developed typically, her mother said.

Erica, too, seemed to develop typically, only having a few common ear infections until about 15 months of age. That's when Deane and her husband, Dale, started to notice something wasn't right.

"She wasn't responding to us, she was quiet and very distant, like she had gone into her own world," Amyx said.

When Erica was 16 months old, she was sent to Arkansas Children's Hospital for a battery of tests. They showed she was autistic.

Improving

At the Day School, Erica has occupational, physical and speech therapy several times a week. But more than these therapies, Amyx said the day habilitation therapy Erica gets at the Day School is most important.

"For children with autism, routine is the most important thing in life," Amyx explained. "People say you could get (therapies) other places but without her being comfortable in this building, without her seeing the same people every day, you couldn't do this with an autistic child. Erica couldn't do this with someone she didn't know."

Amyx said when Erica, or other autistic children, are thrown from their routine, they do not know how to react and tend to have fits, but not temper tantrums, fear tantrums.

"All kids throw fits," Amyx said. "But there is a difference between a child being mad and a child that's terrified. People don't always understand that."

Although Erica has made great strides in moving out of the imaginary box that autism put her in, she's still not completely there. Her mother feels if Erica is not able to stay in the Day School now, she will not be ready for that next big step -- public school at age 5.

"If she gets to stay here, by the time she gets to public school she may not even need any special services, but if she loses that year and a half, I'm afraid we'll lose her again," Amyx said.

The end?

Why all the doom and gloom? Erica's happy at the Day School and doing well, what could change that. Hopefully nothing, says Day School Executive Director Ruth Castleberry, but things are a little uncertain.

Erica is on a Medicaid program called TEFRA, or Tax Equity Fiscal Responsibility Act, that pays the Day School for the $2,600 a month her therapy costs. State budget cuts are threatening that program.

"My husband and I want to provide a good life for our kids. We both have full-time jobs but we could not afford $2,600 a month, no one could unless they are very, very wealthy," Amyx said.

Castleberry agrees, and apparently the government did too, that's why TEFRA was added to the Medicaid program during the Reagan era.

"There was a little girl in one of the northern states who was very health fragile and it got to the point her parents needed some help," Castleberry said. "Her mother discovered the state would pay $120,000 a year to institutionalize her but wouldn't pay $40,000 a year to help them keep her home. That didn't make sense."

Children in the TEFRA program "tend to be children with a high level of need," Castleberry said, and eligibility depends on the child's needs without regard to the family's income.

Castleberry said "there is a state law that says the state is responsible for paying for (Day School) services." But through proposed changes, the legal obligation could shift, in essence putting the Day School and other centers like it in the same situation county detention centers are in -- sending the bill but not knowing when or if it will get paid, Castleberry said.

"We can't operate like that," she added. "How long could we still provide the services?"

She doesn't think very long, probably less than a year, in which time the center would lose about $500,000 of its total $3 million yearly budget.

Castleberry said she and her employees are hoping for the best but preparing for the worst.

"We have a fund-raiser planned for February, one for March, April, every month but June and if someone has an idea for that month we'd look at it," Castleberry said. "We're really looking how to raise additional money from the community and I've always tried not to do that because so many other United Way agencies need that money, too."

The Faulkner County Day School is a United Way of Faulkner County agency, receiving about $50,000 last year. Officials say one of the best ways to help the Day School through this TEFRA uncertainty is to make a donation through the United Way. If this is done very soon, it would go into the 2002 campaign.

For more information on giving to the United Way, call 327-5087.

(Staff writer Samantha Huseas can be reached by phone at 505-1253 or e-mail at sam@thecabin.net)