February 11th, 2014
11:55 AM ET
The surge in autism diagnoses since the year 2000 has come with a massive cost that’s shouldered largely by the public school system, say researchers at the Harvard School of Public Health.
In what’s billed as a conservative estimate, they say the “economic burden” of an autism diagnosis is more than $17,000 a year through age 17, with medical costs making up less than 20% of the total. The biggest chunk of the tab, $8,610, is picked up by schools, according to their paper, published Monday in the journal Pediatrics.
“The education system is already under a lot of financial strain,” says Tara LaVelle, the lead author, who is now an associate policy researcher at the RAND Corporation. “We need policies at the federal, state and local level to make sure funds are available to provide appropriate intervention.”
The number of children diagnosed with autism spectrum disorder (ASD) jumped 78% between the year 2000 and 2012, according to the Centers for Disease Control and Prevention, although there is an ongoing debate over whether ASD is truly more common or if parents and physicians are simply more aware. The 2012 report, based on medical records, said approximately 1 in 88 children have the disorder. Last year, based on a survey of parents, the CDC said the figure may be even higher – as high as 1 in 50. Most experts believe the actual number is somewhere between the two.
The federal Individuals with Disabilities Education Act (IDEA) requires schools to provide a “free and appropriate” education to children diagnosed with ASD, as well as those with other disabilities. The cost can be high, since many of the students require a one-on-one or small group setting.
In the study, 78% of children with ASD attended public school, compared with 62% of other children. Researchers found 76% of children with ASD use special education services, compared with 8% of the overall school population.
As autism diagnoses surged in the early 2000s, so did federal grants for special education – from $5 billion in 2000 to $12 billion just five years later. More recently, the pace of federal spending has slowed, leaving states and cities struggling to make up the difference.
Aside from the burden on schools, the paper found an ASD diagnosis costs the average family the equivalent of $5,089 a year in time devoted to additional caregiving, $3,020 in higher medical costs and $350 for the cost of therapy and other services.
Interestingly, LaVelle and her team found that most parents spent very little out-of-pocket, except for those whose children were diagnosed as most severely affected. One possible reason: 34 states have passed laws requiring insurance companies to pay for at least some autism treatment.
“This might mean insurance reform is working, if families are not feeling such large out-of-pocket costs,” says Michael Rosanoff, associate director for public health research at the advocacy group Autism Speaks, which helps to push for the laws.
Rosanoff says other studies have found a higher out-of-pocket cost, and notes that the study sample was relatively small – it looked at 137 families coping with an ASD diagnosis and 121 other families – and may have missed the most extreme cases. Some parents report spending as much as $100,000 in a year for assessments, medical care and intense therapy. And a 2006 study estimated it can cost $3.2 million to care for a person with autism throughout their life, taking into account medical bills, therapy and lost economic opportunities.
In making the case for insurers to foot the bill for early treatment, advocates say it saves money in the long run, by reducing the burden on schools and by enabling more people to live independent lives.
One often-cited study found that of children who began treatment before turning 3, nearly half improved to the point where they were indistinguishable from same-age peers.
Melissa Solares, whose son Arturo was diagnosed with ASD in 2012 at the age of 4, says the massive intervention has paid off. “Arturo is doing amazing,” she says. While he initially could speak less than 50 words, he’s now at grade level or advanced academically. “We are looking for him to lose his diagnosis in the next year or two.”
But it’s also true that costs might rise, at least in the short term, if all parents were able to access high-quality treatment. According to the new report, only 31% of families reporting an ASD diagnosis used any kind of formal therapy in the previous year.
Indeed, other studies have found a significantly higher cost burden; one study in the United Kingdom found an annual price tag of $44,063 while another in Sweden pegged the annual cost at more than $68,000 per child.
“The reality is that almost every family or individual seeking needed support and services is unable to afford the cost,” says Scott Badesch, president and CEO of the Autism Society of America. “The bigger challenge we constantly face is how to support the needs of the vast majority of those impacted by autism who have limited resources and struggle each day to get by.”
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