Like many parents of children with autism, Braulio De La Cruz sought an expensive therapy called applied behavior 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 behavior therapy.

Now De La Cruz, of Houston, 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.

Texas Health and Human Services Commission representatives 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 legislative leaders 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 behavior analysis. De La Cruz says he is considering a suit, if the state doesn’t change its 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 all 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 behavior analysis, which uses positive reinforcement to encourage behavior 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, Zuri Horsley-Bundy, who qualified for Medicaid also 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 behavior therapy. Medicaid officials denied the coverage. Bundy, an attorney who lives outside Dallas, 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.)

After her success, Bundy began a pro bono effort to help a handful of other families get Medicaid coverage, too.

In 2015, she and others were having regular meetings with legislators and Texas Health and Human Services officials. Bundy said she thought state officials were gearing up to add behavior therapy to standard Medicaid coverage for children with autism, which generally includes occupational, speech and physical therapy.

But that stopped after the legislature last year did not pass a bill to license behavior therapists. Legislators opposed licensure for several professions saying it was overregulation. Shortly afterward, the state stopped covering autism behavior therapy.

“The state had said what would make them feel better about Medicaid covering ABA was if (therapists) were licensed,” Bundy says. “It’s not required under Medicaid law, and many other states provide ABA without licensure. But we were working on getting a licensure bill passed. When it didn’t pass, the state cut all those people off (from ABA).”

Bundy says that the state had approved only 10 children for the therapy — including her daughter — and all but two were left without the therapy. State officials have not made clear why coverage continues for those two.

Not ‘A Defined Benefit’

Peter Hofer, senior litigation attorney for Disability Rights Texas, is representing De La Cruz and some families who lost coverage. One of them was left with $30,000 in bills when behavior therapy that had been approved for Medicaid coverage was discontinued for their 6-year-old son. Medicaid refused to pay for therapy he had already received, Hofer said.

After contacting state officials last September, Hofer received a reply two months later from Gary Jessee, the associate commissioner for Texas Medicaid and the Children’s Health Insurance Program, another federal-state program that provides coverage to kids from lower-income families who earn too much to qualify for Medicaid. The letter said the state does not have to cover behavior therapy because federal officials listed it as only one of several treatments and did not mandate that behavior analysis be covered.

“In response to your contention that the July 2014 CMS guidance requires that (Texas) provide ABA to your client, Texas Medicaid respectfully must disagree with your conclusion,” Jessee wrote. “Texas Medicaid currently provides medically necessary services to children with autism spectrum disorders, such as physical, occupational and speech therapy and nutrition counseling. … ABA is not currently a defined benefit in the Texas Medicaid program.”

In early 2016, Hofer sent a complaint against the state of Texas and a request for assistance and intervention to the Centers for Medicare & Medicaid Services.

Bob Moos, a public affairs specialist for CMS, said that federal officials are discussing the behavior therapy issue with Texas officials, but he declined to give any details.

Expensive But Effective

Abbi Coursolle, an attorney with the National Health Law Program, a national advocacy group, said Medicaid must cover behavior therapy if that is prescribed by a child’s doctor. Physical, occupational, speech and nutrition therapies are not a replacement for behavior therapy, she adds.

“A few other states have tried making that argument and have not succeeded,” Coursolle said of Jessee’s assertion.

“Texas is beginning to look like an outlier here,” she said. “Over half of the other states have moved to do something. As far as I’m aware, Texas is the only state digging in its heels and saying they won’t do it at all.”

Some of the issues have been litigated. Even before the 2014 CMS directive, at least two federal courts ruled in favor of children seeking behavior analysis therapy services from Ohio and Florida.

Unumb said behavior analysis is a very resource-intensive therapy but that it can make a huge difference in children’s lives.

“ABA is based on scientific research,” Unumb says. “For many kids it takes upwards of 30 hours a week of intensive therapy to achieve desired results. That sounds like a lot, but when you’re looking at a lifetime of consequence, and at the dramatic difference it can make, it makes sense to comply with the law.”

Bundy can attest to that dramatic difference. She said her daughter’s speech was at the level of an infant when she began behavior therapy at 18 months old. After six months of that therapy, her speech had reached age level, and Bundy was told that she should be able to start school in a regular classroom without needing long-term support.

“She is proof that early and intensive ABA works,” Bundy said.

Kaiser Health News is a national health policy news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.