The One-Two Punch of Autism: The Case for Insuring Our Kids’ Future

Liane Kupferberg Carter

Though this essay references legislation and congressional matters specific to New York State, the entire autism community could benefit from improved insurance coverage. -Eds

“Your child has autism.”

It’s a devastating diagnosis for a parent to hear. But it’s a one-two punch when your insurance company then refuses to cover the critical, medically necessary therapies your child desperately needs.

When our then-2-year-old son was diagnosed with a developmental disability 16 years ago, a team of medical experts prescribed a rigorous program of therapies. However, state-funded early intervention services were only able to offer us an hour and a half a week of speech therapy — for a child who wasn’t talking. We found private therapists to work with our child. But when we tried to file an insurance claim, the insurance company turned us down flat.

“We don’t cover educational treatment,” they told us. We appealed. They turned us down again. “We don’t cover developmental problems,” the claims manager said.

Thousands of families like ours are who are dealing with autism are fortunate to have any health insurance at all. But in New York state, insurance coverage does not pay for essential medical services that are the only proven method for helping kids with autism reach their full potential.

The costs of intensive, one-on-one therapies, including speech, occupational and Applied Behavior Analysis (ABA), the gold standard in autism treatment, are prohibitive.

The yearly out-of-pocket expenses are equivalent to a year of private college tuition. So instead of getting a child the prescribed treatment regimen, which may entail 40 or more hours with therapists every week, families like ours cobble together whatever we can afford. We run through savings. College funds. Retirement money. It is a shared sacrifice that reverberates throughout the entire family.

According to the national Centers for Disease Control and Prevention, autism is now diagnosed in one in every 110 children, including one in 70 boys. The number of children diagnosed with autism is skyrocketing, while school budgets are simultaneously constricting. Unfortunately, many school systems are ill-equipped and insufficiently funded to handle the job of providing all these services. Child development experts agree that giving a child intensive help during his toddler and pre-school years increases the likelihood that he will be mainstreamed and require fewer special services by the time he reaches kindergarten.

Early intervention is our best hope of ensuring that those children become as independent and fully functioning as they are able. It’s cost-effective too: Providing children with intensive therapies early on will reduce the state-funded services they will need in their school years and throughout their lifetime.

Last month both the Assembly and state Senate unanimously passed groundbreaking bipartisan legislation that will put New York at the forefront of a nationwide effort to provide health insurance coverage for people with autism. New York stands poised to become the 22nd state to require coverage of medically necessary ABA therapy, the most recognized, evidence-based treatment for autism. The New York law would cover treatments for people with autism throughout their life-span. Opponents have claimed that covering behavioral therapies for children with autism would dramatically increase insurance premiums. But according to actuarial analyses conducted on the proposed New York legislation, the New York proposal would only result in modest premium increases of slightly over one-half of 1 percent upon full implementation.

The bill awaits Gov. David Paterson‘s signature. It is a common-sense and fiscally responsible way to help families access the medically necessary, evidence-based autism therapies that they are currently excluded from receiving due to an autism diagnosis.

Giving children access to treatments today gives them their best chance to become happy, healthy and productive adults tomorrow.


This essay was originally published in The Huffington Post and  The Journal News,