How to Get Insurance for Autism Treatment

Does your state bring all medically necessary autism treatment within reach of your child? It depends. Costs are high and state coverage varies dramatically.

Raising a child with autism spectrum disorder (ASD) is expensive. The extra medical cost alone has been estimated at between $4,000 and $6,000 a year. In addition, many children can benefit from skills therapy, which can cost 10 times that amount. This is a huge burden, especially for families with limited private insurance coverage for ASD.

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Why does coverage vary so much?

Let’s start with Medicaid, the state-federal partnership to provide coverage to the poor. Since 2014, federal rules require that state Medicaid programs cover medically necessary care for children with ASD, through age 21. Each state decides what is medically necessary, however. You can contest a decision that doesn’t go your way but be prepared for a wrangle.

In a further wrinkle, if you enroll in a managed care program within Medicaid, a private insurer will make those choices. Medicaid payments can also run low, which means that, even if your child is considered eligible, you may find it difficult to find a provider willing to accept the state’s payments.

Let’s say you get family health insurance through your employer. Most states require private insurers to provide ASD coverage, but the fine print counts: there may be limitations by age, spending caps, or number of visits, for example.

What might your child need?

The debate over coverage has intensified as the number of children who need help increases. About one in 44 eight-year-olds in the U.S. has been diagnosed with the developmental disorder.

ASD includes several conditions that were once diagnosed separately: 

• Autistic disorder
• Pervasive developmental disorder not otherwise specified
• Childhood disintegrative disorder
• Asperger's syndrome

All cause varying degrees of significant social, communication, and behavioral challenges.

Treatment includes medications to manage anxiety, depression, and obsessive-compulsive disorder, all of which are common in children with ASD.

The most expensive help is one-on-one sessions. Doctors and psychologists who treat ASD often recommend children undergo applied behavioral analysis (ABA), intensive training that helps them develop social and language skills but easily costs thousands a year. Your child might be prescribed 25 to 40 hours a week of therapy, for one to three years. to a survey of 33 states in 2018, by the advocacy group Autism Speaks, South Carolina’s Medicaid program at that time paid the lowest rate to ABA technicians, $17 an hour. Next door states Georgia and North Carolina paid more than $70 an hour. Alaska paid $76.

What you can do

If your ASD child has Medicaid and is denied coverage for a treatment you and your doctor believe your child needs, don’t be discouraged. Instead, learn about your rights so you can be proactive.

Under federal law, you have the right to appeal any benefit denials. Contact your Medicaid health plan or state Medicaid agency to learn how to file an appeal.

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