Thanks to the Affordable Care Act, also known as Obamacare, families can get health insurance for their kids without paying extra. However, as was the case before health care reform, autism treatment might not be covered.
Autism spectrum disorder – often referred to as autism – is a group of brain development disorders. Symptoms can include repetitive behaviors and problems with social interaction and communication. About one in 68 children is diagnosed with autism, according to the U.S. Centers for Disease Control and Prevention.
The way the law was enacted means that kids in 24 states might have trouble getting insurance that covers applied behavior analysis (ABA), one of the main treatments for kids with autism. However, experts say some rules enacted by the ACA – such as the ban on refusing coverage due to preexisting conditions – help all children with autism.
How the ACA helps all kids with autism
The Affordable Care Act helps all children with autism in three main ways.
1. Insurance must pay for early autism screening.
Early screening for autism for children at 18 and 24 months of age is one of the preventive care benefits all patients get with no cost sharing. The goal of screening: early diagnosis and prompt treatment. Early diagnosis is important because intensive behavioral therapy before a child with autism reaches school age can dramatically improve learning and language skills, according to the National Institutes of Health.
2. Kids with autism can get insurance.
Due to ACA rules, insurers can no longer refuse to cover, or charge higher premiums, to individuals with preexisting conditions - including autism. Before the provision went into effect, families often couldn’t get coverage for a child with autism – or, if they did, the plan might exclude any condition related to autism, says Katie Keith, an Affordable Care Act expert and director of research at Trimpa Group, a company that offers consulting and public policy research and analysis. Even when insurance doesn’t cover ABA (which doesn’t include a drug regimen), it still will cover prescription medications, another one of the 10 essential health benefits, though coverage of specific drugs varies by plan, Keith says. Two antipsychotic medications, risperidone and aripiprazole, are approved by the U.S. Food and Drug Administration to treat irritability and aggression in children with autism from ages 5 to 16, according to the National Institute of Mental Health.
Insurance also will cover treatment for medical problems, such as gastrointestinal issues, that tend to be prevalent in kids with autism, says Julie Kornack, senior public policy analyst for the Center for Autism and Related Disorders.
3. The ACA limits out-of-pocket costs.
Healthcare and education costs for a child with autism cost $17,000 per year more than for a child without autism, according to a February 2014 study published in the journal Pediatrics. Experts say the ACA helps by limiting out-of-pocket health care costs to $6,350 per individual or $12,700 per family per year. However, this amount doesn’t include any amount you pay in balance billing – when an out-of-network provider bills you for the difference between what your insurer pays and what the provider normally charges.
Many insurers don’t have enough in-network ABA providers, according to a report by Autism Speaks, Autism New Jersey and a law firm. Parents should ask out-of-network providers to waive balance billing, Kornack recommends. Getting a provider to do so “is not as unlikely as it sounds,” she says.
Is autism treatment covered? That depends on the state.
In ABA, a child works with a trained provider as many as 40 hours per week for several years in some cases, Keith says. ABA aims to encourage positive behaviors, such as social interaction, and develop skills, such as verbal skills. It can be expensive: according to the Autism Support Network, ABA can cost tens of thousands of dollars per year without insurance.
Even if a family has insurance, they might have to pay daily copays or coinsurance of 10 to 50 percent for ABA sessions, according to the nonprofit Autism Health Insurance Project.
Co-pays for ABA average about $150 to $200 per week, according to Kornack, and families may also have to pay coinsurance. It’s not uncommon for a family’s health spending to reach the yearly out-of-pocket maximum. However some families can get assistance with out-of-pocket costs: NeedyMeds.org offers a list of autism assistance programs.
However, ABA must be included in individual and small group health insurance plans in only 26 states, including California, New York and Texas, according to the non-profit advocacy group Autism Speaks. Autism Speaks offers a state-by-state map that offers details about autism treatment coverage in each state.
Why isn’t ABA covered in all states? Though the ACA requires insurers to include coverage for 10 essential health benefits – broad categories of coverage that include prescription drugs and mental health coverage – the federal government allowed each state to decide exactly what would be included in those categories, Keith says. So, some states required insurers to cover autism treatment, and some didn’t.
If you live in one of the 24 states where plans aren’t required to include coverage for ABA, you might still be able to find a plan that covers the treatment. For example, Oregon has passed a law that requires insurers to cover autism treatment, but it doesn’t go into effect for most plans until Jan. 2, 2016. However, some plans on that state’s health insurance exchange cover autism treatment now, Kornack says.
Insurance tips for parents of kids with autism
So, what can parents do if they live in a state where autism treatment isn’t included in the essential health benefits? Experts offer the following tips:
- Get help from a navigator. If you’re having trouble finding a plan that covers autism treatment, consult a navigator, an expert trained to help consumers shop for health insurance, Keith says.
- Check the limits of coverage. Before you buy a plan, check to see what limits, if any, are imposed on the treatment your child needs, Keith advises. The ACA prohibits yearly or lifetime dollar caps on essential health benefits, but many insurers place a yearly limit on the number of sessions of behavioral health treatment they will cover, she says.
- Fight if you need to. If an insurer doesn’t cover autism treatment or doesn’t cover enough for your child, you can take advantage of another change made by the ACA: a better appeals process, Keith says. The ACA allows you to appeal your insurer’s denial of coverage first to the insurer, then to an independent third party.
- Seek help from autism organizations. Contact your local Autism Society affiliate group or other nonprofit organization to get state-specific information about getting the treatment your child needs, Kornack says.