MADELEINE BRAND, host:
Here's a typical dilemma that parents face when their child is diagnosed with autism: The doctor says there's therapy that can help; it's expensive and hard to find. So, that's where government steps in with a program to provide treatment. But in the current economic downturn, states are struggling to pay for it. NPR's Joseph Shapiro reports.
(Soundbite of child talking)
JOSEPH SHAPIRO: Amy Johnson's the mother of a two-and-a-half-year-old boy with autism. She says hope for Ben came when her doctor sent her to Nevada Early Intervention Services.
Ms. AMY JOHNSON: There he is.
SHAPIRO: The state program came up with a plan to send language and behavior therapists to work with Ben nine hours a week. That was last September.
Ms. JOHNSON: They said, OK, we're going to start, you know, sending people to come this many times, but we haven't seen that person. We actually haven't seen anyone, and he has not received any services.
SHAPIRO: Because of the state's budget crisis, Ben ended up on a waiting list instead. Federal special-education law established early-intervention programs like Nevada's for kids up to three years old. Nevada's a fast-growing state, so it has had to keep with more and more children needing the therapy. Then, the recession hit. By the end of December, there were 566 children on Nevada's waiting list. So, Amy Johnson and her husband - he's a lawyer - used their own money to get an early-intervention program for Ben.
Ms. ORAM SILVERSTEIN (Behavioral Therapist): Clap.
(Soundbite of clapping)
Ms. SILVERSTEIN: Good! Raise hands.
(Soundbite of baby crying)
Ms. SILVERSTEIN: OK...
SHAPIRO: Therapist Oram Silverstein(ph) works with Ben. He's small, playful and full of energy.
Ms. SILVERSTEIN: Touch nose.
(Soundbite of laughter)
Ms. SILVERSTEIN: Good. Stand up.
SHAPIRO: Therapists come to the house to work with Ben one on one eight hours a day. They help him learn to use language, how to play and build social skills. This is a popular therapy called applied behavior analysis. According to the American Academy of Pediatrics, when kids get this therapy early and intensively, many will make substantial gains in IQ scores, language and their ability to learn.
Ms. SILVERSTEIN: Ah, Rock star. You're a rock star. Hey, rock star. Yeah.
Mr. BEN JOHNSON: (Unintelligible).
Ms. SILVERSTEIN: Good try.
(Soundbite of laughter)
Ms. SILVERSTEIN: Go play, I love it.
Mr. JOHNSON: Rock star.
SHAPIRO: All this treatment is very expensive, about $3,000 a month. Johnson found another state program that, as of January, kicks in a third of the cost. But that's ending because of budget cuts in June. Johnson has two other children. As she sits on the sofa and burps the baby, she says she's seen Ben learning in just the first few months of therapy. She knows he will need it for years to come, and she's worried.
(Soundbite of patting)
Ms. JOHNSON: How long can we keep going? 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?
SHAPIRO: There may be some help coming. The economic stimulus package under debate in Washington includes money for early-intervention programs. Nevada's governor has promised to add state funds, too. And the other day, state therapists came to talk to Amy Johnson about getting Ben off the waiting list for the services Nevada provides.
(Soundbite of children talking)
Ms. NATALIE CAREY: All right, let me tape up this box.
(Soundbite of packing tape)
SHAPIRO: Natalie Carey's not sticking around to find out if her son will get off the state waiting list.
Ms. CAREY: Come on. Let me tape it up.
(Soundbite of packing tape)
SHAPIRO: The Careys are packing up their house and moving to another state where benefits are more generous. Big brother Gabriel is four. He's bold and in constant motion. Max, he's two. He's been diagnosed with autism. He's quiet, with a sweet, round face and watchful eyes. Last year, a neurologist told the Careys that Max needed intensive therapy and right away. But Natalie 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.
Ms. CAREY: It almost felt like everything just started crumbling in. Like, I was just going, well, how does anybody 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 that you're going to grow up, and I can't get you what you need?
SHAPIRO: So, Natalie's husband turned down a good job in Nevada and took one in Pennsylvania. Natalie knows from her research that's a state with an early-intervention program that offers more. And although Natalie didn't know this, a new law in Pennsylvania requires a family's health insurance to pay for autism treatments. Private insurers object; they note that it's not always predictable which kids will benefit from various therapies. But Natalie Carey dreams about the difference such therapy could make for her son.
Ms. CAREY: I want him to have a girlfriend, and I want him to go to the prom. And down the road, it's - I just, socially, 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.
SHAPIRO: The Careys moved into their new house in Pennsylvania just two weeks ago. The state therapy program for Max starts next week. Joseph Shapiro, NPR News.
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