Texas Denies Medicaid Coverage for an Autism Therapy

Photo by Braulio De La Cruz

Like many parents of children with autism, Braulio De La Cruz sought an expensive therapy called applied behavioral analysis — or ABA – when his son Noah Leonardo was diagnosed last year.

Noah, now 3 years old, qualifies for Medicaid coverage because he had been approved for Social Security’s Supplemental Security Income (SSI) program, and his neurologist sent paperwork to get the state to cover the therapy. But Medicaid officials rejected the request. Braulio De La Cruz appealed the decision, but that effort hit a major roadblock last fall when the state suddenly said the Medicaid program would not cover behavioral therapy.

Now De La Cruz and other parents — who say their children with autism are legally entitled to such treatment — are butting heads with Texas officials. And without Medicaid coverage, they must either forgo the therapy or find a way to pay for individual insurance plans that help pick up the costs.

De La Cruz has turned to an individual Humana plan to cover his son’s therapy. But it costs him $198 a month, a small fortune when he is watching expenses closely while preparing to go back to school to study nursing. And the cost goes beyond just the premium.

"The most difficult part is the deductible," he said. "It’s $6,500 – it’s pretty outrageous that you have to pay that before anything is covered.”

In addition, the effects of the Texas rejection of ABA coverage were compounded for many families by a controversial state decision to cut back on Medicaid payments for other home-based therapy services for children, including many that youngsters with autism might use.

Representatives for the Texas Health and Human Services Commission declined to comment for this story, except to say that Texas, like other states, is reviewing guidance from the federal Centers for Medicare & Medicaid Services (CMS) on this issue. Texas Sens. Charles Schwertner, R-Georgetown, chair of the Senate's Health and Human Services Committee; Lois Kolkhorst, R-Brenham, vice chair of that committee; and Jane Nelson, R-Flower Mound, chair of the Senate Finance Committee, also declined to comment.

Dan Unumb, executive director of the Legal Resource Center at Autism Speaks, a national advocacy group for families, said if federal officials don't weigh in, Texas families may have to turn to litigation to convince the state not to resist covering behavioral analysis. De La Cruz says he is considering a suit if the state doesn’t change it course.

“I don’t know if they’ll continue to draw a line in the sand, and I don’t know what steps CMS may be taking,” Unumb says. “My sense is that there’s many layers to things in Texas.”

A Federal Directive

In 2014, CMS advised states that they must cover medically necessary care for Medicaid-eligible children with autism up to age 21. Advocates say that includes therapies a doctor deems necessary for a child, including behavioral analysis, which uses positive reinforcement to encourage behavioral modification and can run from $60 to $150 an hour.

Some states – California, Virginia and Maine, for example – needed very little prodding to put policies in place. Others, including Ohio and Florida, did so only after being hit with court suits.

But Texas responded slowly. One of the advocates at the center of the debate is Shylo Bundy. When her daughter, who also qualified for Medicaid through the SSI program, was diagnosed with autism at 15 months of age, the toddler’s doctor prescribed 30 to 40 hours a week of behavioral therapy.

Medicaid officials denied the coverage. Bundy, an attorney, immediately put her law skills to work, spending months appealing, making phone calls and contacting legislators until she eventually got the state to reverse the decision. Bundy and her husband have traded off not working so that someone can be home to take care of their daughter. (Continue Reading)

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Texas Denies Medicaid Coverage for an Autism Therapy