Boston Michael Giangregorio's son Nicholas was diagnosed as severely autistic when he was 18 months old. Now 12, Nicholas requires nearly round-the-clock care - special schooling as well as speech, occupational and physical therapy - that can cost tens of thousands of dollars a year.
It's a formidable expense, but starting in January, Giangregorio's employer, JPMorgan Chase & Co, will chip in.
The company announced in late November that it would add comprehensive autism coverage for expensive intensive therapies such as Applied Behavioral Analysis (ABA) to its health plan for 2014. The bank joins about 15 of its Fortune 100 peers, according to the advocacy group Autism Speaks, which expects that number to grow.
As many as one in 50 U.S. school-age children — or about 1 million — have a diagnosis of autism, according to a national survey released by the U.S. Centers for Disease Control and Prevention last March.
The lifetime costs of treating one person with autism could top $2.3 million, according to 2012 research from the University of Pennsylvania and the London School of Economics.
Given the expense, it is no surprise that insurers have had to be prodded to cover many autism treatments. Thirty-four states and the District of Columbia now require insurance carriers to extend coverage for ABA and other autism treatments in some or all of their individual and small-group policies.
But states don't regulate the self-funded policies offered by JPMorgan and other large employers, under which about one-quarter of Americans are covered.
That is changing rapidly. An accelerating number of major companies have been extending their health plans to include autism coverage. Companies announcing this year they will add at least partial benefits include General Motors Co, United Technologies Corp, Chrysler Group and American Express Co.
"Adding this type of benefit has been the biggest request we've heard from employees in recent years, and the outpouring of gratitude has been overwhelming," says Bernadette Ulissi Branosky, JPMorgan's head of benefits.
Even with the required co-insurance, Branosky estimates, most employees who qualify will pay less than $4,000 annually, compared with amounts that run as high as 20 times that.
INSURERS WARN OF HIGHER PREMIUMS
ABA, a form of highly structured one-on-one coaching by trained teachers, has become the most widely used autism treatment in the United States. It is endorsed by the American Academy of Pediatrics, the U.S. Surgeon General and the American Medical Association.
Many insurers, however, still categorize ABA as an experimental treatment, because of a lack of long-term research on its effectiveness, and have largely refused to cover it. School districts must offer some services for school-age children, but parents often bear much of the expense.
ABA's very high cost, as much as $60,000 per year per child, no doubt underlies this reluctance. The Council for Affordable Health Insurance, a Virginia-based association of health insurance companies, says that mandating autism coverage could raise premiums across the board by 1 percent to 3 percent, according to research it conducted in 2009.
That added expense, the industry group has warned, could make basic coverage unaffordable for many Americans.
However, data collected from states that require autism coverage suggests such concerns may be overblown. Two years after requiring coverage, seven states saw monthly premiums rise by 31 cents on average per member, according to figures collated by Autism Speaks. In Arizona's second year of mandated coverage, autism-related claims totaled about $389,000 — less than 10 percent of the $4,900,000 that the legislature forecast.
Lorri Unumb, vice president for state government affairs at Autism Speaks, reports similar results in the private sector. "Companies tell us the additional cost is miniscule, a rounding error that most don't even pass along to employees," she says. JPMorgan, which reported $21.3 billion in profits in 2012, estimates the added benefit for its roughly 200,000 employees in the United States will cost it around $10 million.
OBAMACARE ADDS LAYER OF COMPLEXITY
Federal law governs self-funded health plans, and advocates had hoped that Affordable Care Act's 2010 passage would bring expanded coverage for autism treatment all around. The U.S. Department of Health and Human Services has suggested a national standard could come in 2016, but so far the Obama administration has left it to states to define what the "essential benefits" are that insurers must provide when it comes to autism.
According to Autism Speaks, only 26 states included ABA coverage in their benchmark health insurance plans, which outline the minimum benefits that must be offered on state exchanges.
To see the current state mandates where you live, go to link.reuters.com/fas45v. For an Autism Speaks analysis of the Affordable Care Act and autism, click on r.reuters.com/gas45v.
Many employers with self-funded plans are moving forward even without mandates. Several of the country's major technology companies, including Microsoft Corp and Intel Corp, led the way more than a decade ago, possibly because autism - according to California Department of Developmental Services records - is especially prevalent in Silicon Valley.
The past two years have seen other employers catching up.
Financial services company Capital One Bank is one of the few employers to pay 100 percent of the cost. Tricare, the Pentagon's health insurance plan, asks families to contribute as little as $25 for care regardless of the overall cost.
American Express, in addition to now covering ABA under its health plan, provides guidance for employees with autistic children on topics including educational rights, estate planning and childcare. The company is also in the process of establishing a special-needs support network, pairing parents of recently diagnosed children with those have older offspring with autism.
Employer-sponsored benefits apply to children up to the age 26 under the Affordable Care Act. The CDC defines children as individuals 17 years old and younger.
Giangregorio, for his part, says he is proud JPMorgan has decided to add coverage for ABA and other autism treatments. In the past, he says, Nicholas was not able to get the necessary services he needed, including ABA, due to a lack of insurance. "Fortunately none of my colleagues with autistic children will face that now."
(Editing by Linda Stern and Steve Orlofsky)