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Autism Diagnoses Bring Slew of Costs for Families

BY Lea Winerman  April 13, 2011 at 6:11 PM EDT

When Carol Santiago’s son Ralphie won admission to New York City’s first charter school for children with autism in 2007, it was, she says, “like winning the lottery.” The school, with a nearly 1-to-1 teacher-student ratio, could provide the kind of intensive personal instruction that Ralphie, now 9, needs to learn and thrive.

Santiago’s lottery analogy is apt. She and her husband, who are profiled in the NewsHour’s Autism series, found that Ralphie’s place in the charter school eased not only their worries about his education but also a significant financial burden.

According to a 2006 study by health economist Michael Ganz, the direct costs to raise a child with autism to age 22 are more than $500,000 — and that’s in 2003 dollars.

The gold-standard treatment for autism, especially for young children, is a kind of behavioral therapy called applied-behavior analysis (ABA) that involves up to 40 hours per week of one-on-one work with a trained therapist. Then there’s speech therapy, occupational therapy, doctor bills for gastrointestinal and other medical issues that can go along with the disorder, bills for respite care — hiring babysitters qualified to watch children with autism — and other expenses.

“The cost associated with Ralphie’s autism is something that we never anticipated, even at the initial diagnosis point,” Santiago said. “It doesn’t hit you until you’re deep into it. For us, it wasn’t until we began to look back a year into it that we realized that it was going to eat up a lot of our resources.”

Caught between ‘Medical’ and ‘Educational’

Ganz’s study measured autism’s cost to society overall. And of course, not all of the costs are paid directly by families. Health insurance coverage pays for some treatment, as it does for many families with a child who has a chronic health condition and who also have medical coverage. And much of the cost is borne by school systems, because the 1990 Individuals With Disabilities Education Act requires all school districts to provide a “free and appropriate” education for children with disabilities, including autism.

But school districts’ resources are often limited — what parents believe is an appropriate education often doesn’t match up with what schools provide. And many of the treatments for autism straddle a line between medical and educational, giving room for insurance companies and school systems to each claim that it’s not their responsibility — and leave parents footing the bill, or going without treatment.

The resources available to parents vary tremendously by where they live — and sometimes even within the same area.

The costs of caring for a child with special health needs often differ from state-to-state. A 2008 study in the journal Pediatrics found that such out-of-pocket costs fluctuate widely depending on where the family lives and that states with higher median family incomes often had lower financial burdens.

Jesse Mojica, another New York parent profiled in the series and an education policy adviser to the Bronx borough president, said that he and his wife paid out-of-pocket for speech therapy for their son Adam for several years. Although the school district did offer some services from a list of participating providers, Mojica said he would often find those providers were booked or were based in Manhattan and unwilling to take patients in the Bronx, where he lived.

“There are so many kids and not enough therapists to serve the need,” Mojica says. “We spent thousands of dollars over the years for things we felt that the school system or school should have been providing.”

But for Laura Henderson, another parent profiled in the series and a California resident, the situation has been different. Henderson, who lives near Sacramento, has three boys — ages 8, 10 and 12 — all of whom have some form of autism spectrum disorder. In California, services for children with autism are coordinated through private nonprofits called regional centers that contract with the state. Henderson says that her area’s regional center is particularly good — one reason the family moved there from Silicon Valley.

“Once we moved here, the cost factor was pretty much nothing,” she says. The center offered behavioral therapy, speech therapy, socialization classes and more. With three children with autism, she says, “when my kids were young, I had more offers of therapy than hours to do them in.” Henderson’s situation is considered rare for a family with an autistic child.

Autism and Insurance: a Push for Coverage

For those parents, unlike Henderson, whose children need more therapy and treatment than the school or state provides, insurance is the next step — but it too is often little help. Many insurance plans exclude autism treatment or refuse to cover behavioral therapy because they say it is an educational, rather than a medical, treatment.

Recently, however, the insurance situation has been changing. In the past three years, the advocacy group Autism Speaks has coordinated a push to get states to pass laws mandating that insurance companies cover autism treatment.

“Our community had gone for far too long at the mercy of insurance companies who used autism as the basis of denial for meaningful, necessary, evidence-based interventions,” says Peter Bell, executive vice president for programs and services at Autism Speaks.

The organization’s push is working: In 2006, only Indiana had such a law in place. Today, 25 states do.

“Children are receiving treatments, making tremendous progress and are often able to transition into a school environment with less support,” Bell says. “This is an investment in the future.”

In Massachusetts, Debe Needham Chamberlain has seen that change firsthand. She and her husband, both special education teachers, paid out-of-pocket for their son T.J.’s $150-per-session occupational therapy for three years and worked extra jobs to make the money. The bill mandating autism coverage was signed into law in last summer, and just recently, for the first time, T.J. was able to see the occupational therapist with only a co-pay.

“This is such a godsend,” Needham Chamberlain says. T.J. was lucky to be able to attend school in the district where his mother teaches, which offers ABA therapy in school, but the district they live in does not. “People mortgage their houses so that their children could get services,” she says. Now, with the new law, they are moving T.J. back to his home school district, and insurance will cover out-of-school ABA therapy.

Others, particularly insurers, believe that the laws are a mistake. Susan Pisano, vice president of communications for the insurers group America’s Health Insurance Plans, says that AHIP generally believes that legislative mandates are a bad way to structure benefit plans — not just for autism but for all conditions.

“The cumulative impact of thousands of mandates across the country has been to raise the cost of coverage — in some cases beyond what small employers can afford,” she says.

And, she says, many of the therapies mandated in some of the new state laws are educational rather than medical — and so should be provided by school districts.

But Bell, of Autism Speaks, disagrees.

“Autism is a diagnosis you receive from a medical professional,” he says. “School and teachers do not give an autism diagnosis.”

A ‘Holistic’ Perspective

All of the costs discussed above are only the direct costs of treating autism. Ganz estimates that families also, indirectly, lose almost $160,000 in income across their child’s first 22 years, on average, as parents must scale back on work to care for their child.

Over the course of a person with autism’s lifetime, the total cost to society — of treatments, care and the lost work potential of both the person with autism and their caregivers — is more than $3 million, Ganz found.

Figuring out where society — insurers, school districts and families — should spend that money is key, he says.

“[Early intervention] has a high upfront cost,” he says. “But if it works, it could save a lot of these downstream costs. If you match up children with the appropriate therapies early on, these kids might wind up growing up and being able to compete in the normal job market — downstream costs could be avoided. So we have to be holistic about it.”