Ben Johnson, 2, has developmental delays due to autism. He has been wait-listed for Nevada's free early-intervention services because of state budget cuts, and his parents are now paying for private therapy.
Ben Johnson, 2, has developmental delays due to autism. He has been wait-listed for Nevada's free early-intervention services because of state budget cuts, and his parents are now paying for private therapy. Joseph Shapiro/NPR
Natalie Carey and her two sons, Gabe and Max, play at a local park in Nevada. Max, 2, was also placed on Nevada's waiting list, so the Careys decided to move to Pennsylvania to get Max the therapy he needs.
Natalie Carey and her two sons, Gabe and Max, play at a local park in Nevada. Max, 2, was also placed on Nevada's waiting list, so the Careys decided to move to Pennsylvania to get Max the therapy he needs. Jane Greenhalgh/NPR
Amy Johnson says she started noticing changes in her son Ben when he was 14 months old.
"He just stopped making eye contact," she says. "He stopped talking. ... He could say, 'See you soon,' and he'd wave. And things just started to deteriorate."
The family doctor sent Johnson and her son to Nevada Early Intervention Services. Therapists at the state program confirmed that Ben had significant speech and development delays and came up with a plan: They'd send language and behavioral therapists to the house to work with Ben, nine hours a week.
That was last September.
The therapists didn't come. Instead, Johnson got a letter from the state. It acknowledged that Nevada has an obligation to provide care within 30 days of seeing a child. But because of the state's budget crisis — the result of Nevada's deep debt from the recession — Ben would have to wait.
Early-intervention programs like Nevada's were established under federal special education law. States take money from Washington and, in return, promise to provide therapy — and do it right away — for kids up to 3 years old. But there's a lot of pressure on state programs. More children are being diagnosed with autism, and at earlier ages.
Nevada, a fast-growing state, has had to keep up with more and more kids needing the therapy. Then the recession hit. By the end of December, there were 566 children on the state's waiting list.
So Johnson and her husband, a lawyer, decided they'd have to pay for Ben's therapy themselves. Ben, now 2 1/2, is small, playful and full of energy. The family cut back on expenses and arranged for private therapists to come to their home in North Las Vegas to work with Ben one on one, eight hours a day.
The therapists help him learn to use language, how to play and build social skills. This popular form of therapy is called applied behavior analysis. The American Academy of Pediatrics says that when kids get this treatment early and intensively, many will make substantial gains in IQ scores, language and their ability to learn.
Johnson says she's seen improvements in Ben in just the first three months of therapy. But the treatment is expensive: about $3,000 a month. She found another state program that, as of January, covers a third of the cost. But that's ending in June because of budget cuts.
Johnson knows Ben will need therapy for years to come — and she's worried.
"How long can we keep going?" she says. "Probably with what we have left in our savings, which isn't much now, I mean we could probably go, five months? Six months? Maybe December?"
There may be some help coming. More money could arrive from Washington. The proposed economic stimulus plan now being debated in Congress includes more money for the federal part of the early-intervention program.
But there's a more direct reason for Johnson to be encouraged. Nevada's governor last month promised to add more state funds, and Nevada's early-intervention program has moved in recent days to try to reduce the state waiting list.
Last week, state therapists came to visit Johnson to talk about getting Ben off the waiting list. Johnson hopes the state will give Ben speech therapy and other care he currently doesn't get. But she says the state won't pay for his intensive, daily therapy. Johnson says she and her husband will continue to pay for Ben's private therapy themselves, for as long as they can.
Another mother, Natalie Carey, decided not to wait to find out if her son would get off Nevada's waiting list.
She and her husband are packing up their house and moving to another state where benefits are more generous.
Their son Max, a quiet 2-year-old with a sweet round face and watchful eyes, has been diagnosed with autism.
Last year, a neurologist told the Careys that Max needed intensive therapy immediately. But Carey was working at a grocery store and her husband, David, was finishing grad school in engineering. There was no way they could come up with $3,000 a month.
"It almost felt like everything just started crumbling in," Natalie Carey says. "Like, I was just going, 'Well, how does anyone do this?' I mean, how do you look at your kid and go, 'I don't have the money to help you. I'm sorry you're going to grow up and I can't, I can't get you what you need.' "
So her husband turned down a good job in Nevada and instead took one in Pennsylvania, a state with an early-intervention program that offers more.
A new law in Pennsylvania requires a family's health insurance to pay for autism treatments. Such laws are on the books in 10 states, according to the National Conference of State Legislatures.
But private insurers say it's not always predictable which kids will benefit from various therapies.
Carey dreams about the difference such therapy could make for her son.
"I want him to have a girlfriend and I want him to go to the prom," she says. "And down the road ... I just want him to be part of a community, to be able to go into a job and get a job because he can communicate."
The Careys moved into their new house in Pennsylvania just two weeks ago. Last week, state therapists came to see Max, and he was accepted into Pennsylvania's state therapy program. Max starts the state therapy program next week.
Produced By Jane Greenhalgh.