Autism treatment advocates have won one legislative battle after another since 2007, most recently in California, which sent a bill to the governor this month mandating that insurers cover the disorder. Now more than half the states have such requirements, but that success could be in jeopardy as federal officials set new national standards for health coverage.
Insurers and employers argue that the laws increase health costs because treatment is often expensive and lasts years. But the advocates have prevailed by using federal data showing a growing number of children with the disorder, compelling stories about middle-class families struggling to afford treatment and testimony from celebrity parents of children with autism, including former pro football stars Dan Marino and Doug Flutie.
However, a provision in the 2010 health overhaul law gives the federal government authority to define "benefits" that will be offered on the health insurance exchanges, or marketplaces, to individuals and small businesses starting in 2014. If states mandate a benefit, but it isn’t on the federal list, the states would be responsible for the cost of the coverage.
As a result, autism benefits and dozens of other state-required benefits, covering services and conditions such as infertility, acupuncture and chiropractic care, could be at risk. By the end of September, the Institute of Medicine is scheduled to recommend criteria the Department of Health and Human Services should use in determining the essential benefits package. HHS is expected to announce its decision by the end of the year.
"We do think states will be under enormous pressure to repeal benefits" not deemed essential, said Stephen Finan, senior director of policy for the American Cancer Society's Cancer Action Network. The society is concerned that the benefits package will not include all the cancer screenings that it has recommended.
"It will be a new day," said Amanda Austin, a lobbyist for the National Federation of Independent Business, which typically fights new insurance mandates because the costs will lead to higher premiums.
HHS faces a difficult balancing act: The more comprehensive the benefits package, the more it would cost insurers and their customers. Taxpayers would pay more, too, because the law provides government subsidies to help millions of people afford coverage.
Tens Of Thousands Of Dollars In Services
Most of the state laws covering autism require insurers to pay for behavioral analysis as well as physical and occupational therapy. These services can cost tens of thousands of dollars a year, although many states put dollar limits on coverage.
Autism encompasses many disorders ranging from mild to severe that can affect a child's behavior and ability to communicate. Applied behavioral analysis typically involves one-on-one counseling to teach children how to behave or act in different situations. Although parents and many clinicians consider it the most effective therapy for children with autism, the results are mixed in peer-reviewed research.
Insurers typically oppose state benefit mandates, saying they reduce their ability to control costs. In addition, they argue that autism is a development disorder that is best addressed by the educational system, not the medical system.
Parents worry the essential-benefits provision could reopen the debate over covering treatment for autism and spark another showdown with insurers.
"Fear runs through my mind," said Ann Rounseville of Newton, Mass., whose son Luke, 4, has been able to get speech, occupational and behavioral therapy because of the insurance benefit that started this year.
"Without this coverage he would not be getting any of the extra therapy he needs," said Rounseville, estimating the Massachusetts law has saved her family more than $10,000 since May.
Stuart Spielman, a lobbyist for Autism Speaks, the New York-based group that has led the push for coverage laws, said he’s confident HHS will include autism because the federal law lists behavioral health treatment in its broad outline of what should be considered essential. The law also spells out the need for emergency services, hospitalization, maternity care, prescription drugs and prevention.
It's unclear how HHS will decide what to deem an essential benefit. The agency could declare a broad list of categories of treatments and services essential and leave the specifics to the states.
At the state level, autism treatment advocates have argued that the problem is too big – and too expensive for families – not to be covered by insurers. They also say providing treatment to young children can save money in the long run by reducing the later need for institutionalized care.
The state mandate laws typically only affect about half of people with health coverage because they do not apply to self-insured employers, typically large companies.
1 In 110 Children Affected
According to the federal Centers for Disease Control and Prevention, 1 in 110 American children have been diagnosed with Autism Spectrum Disorder, including 1 in 70 boys. A Harvard University study in 2006 found that on average the annual care for a person with autism runs about $29,000 for medical costs and $38,000 for non-medical costs such as special education, camps and child care.
"The mandates have been a way for states to be doing something on a major issue without money coming out of the state treasury," said Jack Pitney, professor of American politics at Claremont McKenna College in California. "It's a cost borne by insurance companies who are not an object of a great deal of public affection."
Insurers argue that the cost of autism coverage gets passed on to all their customers through higher premiums. The Council for Affordable Health Insurance, an insurer-backed group, estimates that autism mandates boost premiums from 1 percent to 3 percent.
Highmark, Pennsylvania’s largest private health insurer, says the autism mandate enacted in the state in 2009 increased premiums from 0.6 to 1 percent. Overall, the cost of employer-paid insurance for family coverage last year was $13,770, according to a Kaiser Family Foundation study. (Kaiser Health News is an editorially independent part of the foundation.)
Autism advocates point to lower estimates. They say data from the agency overseeing health benefits for South Carolina state employees shows that autism coverage added just 44 cents per member per month.
Richard Cauchi, program director of the health program of the National Conference of State Legislatures, said HHS has not yet said how it will determine the cost to states of keeping certain mandates. States may be required to pay the insurer or the enrollee.
Cauchi was surprised 16 states approved a variety of new mandates in 2011 given the uncertainty about future costs. Four of the states imposed autism benefits: Arkansas, Rhode Island, Virginia and West Virginia.
Until 2007, only Indiana required insurers to cover autism treatment. Today, 26 states do, not including California, where Gov. Jerry Brown (D) has not yet said if he will sign the bill, and New York, where a bill awaits the signature of Gov. Andrew Cuomo (D).
Autism advocates and other patient groups continue to press for more benefits laws. By 2014, Cauchi said, "There could certainly be a number of mismatches between what’s considered essential and what states have on their books."
Wilson Cristancho of Miami hopes the autism treatment Florida requires remains part of his insurance. Before the law took effect in 2009, he said he piled up nearly $30,000 in debt for his son's medical bills. The intensive therapy now paid for by his insurer has helped his son, Marc Anthony, 9, communicate and improve his hand-eye coordination.
"The mandate has had a huge impact on me and my family," Cristancho said. "We don't want to see it go away."