Why autism treatment is out of reach for poor Texas families

Dec. 21--Thousands of autistic Texas children covered by Medicaid are denied access to what is considered the most effective treatment for autism, even as children in most other states have access to the treatment through Medicaid.

Texas saves an unknown amount of money by keeping applied applied behavior analysis therapy, an expensive but the most evidence-based treatment for autism, out of reach of children from poor families.

"We talk to hundreds of families every year and a large majority of them need access to ABA therapy," said Suzanne Potts, executive director of the Autism Society of Central Texas. "If they're a Medicaid family, it's even more disheartening to have to tell them there's nothing for them. They have to choose between paying their bills and paying for therapy for their child."

Some of these same Texas children are also blocked from some therapy services for children with disabilities, after deep cuts in health care spending by the Republican-dominated Legislature in recent years.

About 22,000 Texas children with autism are covered by Medicaid. A small number of families are paying for the therapy at full cost, which typically ranges from $50 to $100 per hour. Another 700 families or so are in a state autism program that offers the therapy at little to no cost to families but at a level far below the recommended 25 to 40 hours a week.

Carrie Williams, spokeswoman for the Texas Health and Human Services Commission, said given the high cost of applied behavior analysis therapy, the agency needs the Legislature to approve money to fund it through Medicaid.

It's not clear whether the state has studied how much it would cost to cover the therapy under Medicaid. According to advocates and providers, not all children with autism are prescribed the therapy and the federal government would pick up almost 70 percent of the cost.

State Rep. Ron Simmons, R-Carrollton, who has been an advocate of improving autism services, said he supports extending Medicaid coverage to the therapy, but doesn't know if the Legislature has the appetite.

"With the uncertainty of House leadership at this point, it is impossible to predict," he told the American-Statesman. "ABA therapy is treatment for autism just like orthopedics is a treatment for a broken arm. If one should be covered, then the other should be as well."

Gold-standard treatment

Texas Medicaid offered to cover Katie Down's 3-year-old son Mason after he was diagnosed with autism spectrum disorder, but she turned it down, knowing he wouldn't get coverage for applied behavior analysis therapy. Instead, Down and her husband sold their home, moved in with her parents in Georgetown and purchased a high-deductible insurance plan off the federal insurance exchange. At one point, they were paying $3,000 a month for applied behavior analysis therapy as well as speech therapy.

"A year and a half later he is a completely different kid," Down said of the effectiveness of the therapy. "It makes me sad that that is what we had to do -- lose everything we worked hard for over the years. But it makes me even more sad to think about the families who don't have that option. What happens to their kids? When will they get help?"

Applied behavior analysis therapy has been rigorously tested by academics and is considered the gold-standard treatment for autism. The Texas Health and Human Services Commission website says the therapy shows "the most evidence of positive impact on child developmental trajectory."

In practice for the last 50 years, applied behavior analysis therapy relies on breaking down a task, like eating dinner or brushing teeth, into small processes so that a child with autism can learn it more easily. Providers work one on one with children in a play-based setting. Rewards are often used as a motivator.

On a recent morning, Mason was making cookies with a therapist and a behavioral analyst, while practicing verbalizing requests, making eye contact, and working against food aversion.

Several families whose children have received rigorous applied behavior analysis therapy told the American-Statesman that in a matter of months, their children were throwing fewer tantrums and paying more attention, and had improved their social skills.

"I just wish I could show you a picture of what she was a year ago versus what she is now. We've potty trained in that year, which is lifechanging from us. To come from two understandable words, maybe three, to now she signs 20 or 30 signs, being able to sit in circle time and pay attention and participate in a group setting -- that's huge," said Emily Arbogust, whose 5-year-old daughter Ashlyn receives the therapy four times a week at Children's Autism Center in Round Rock.

Unable to obtain coverage for Ashlyn's therapy, Arbogust's husband sold his company in Temple to take a corporate job that offers insurance coverage of applied behavior analysis therapy. Texas requires all commercial insurance to cover the therapy, but there are gaps. For example, self-funded employer plans aren't required to cover it.

'Short sighted'

In 2014, the Centers for Medicare and Medicaid Services, the federal agency that oversees Medicaid, released an informational bulletin reminding states they had to cover medically necessary services for children with autism. Soon after the release, states started shoring up their Medicaid programs to ensure applied behavior analysis therapy was covered. In some cases, advocates filed lawsuits in an effort to force states to comply.

Disability Rights Texas and Texas RioGrande Legal Aid sued Texas on behalf of three San Antonio boys with autism last December. Under a settlement reached this month, the children in the case can receive applied behavior analysis therapy for at least two years, and the state avoided a ruling that could have required Texas Medicaid to offer the therapy to everyone who needs it, according to Peter Hofer, an attorney for Disability Rights Texas.

"It's short sighted on Texas' part," Hofer said. "It's going to be a lot less cost associated with special education for kids who receive medically necessary ABA."

The therapy could decrease the lifetime cost of supporting someone with autism by as much as $2.4 million, said Jolene Sanders, advocacy manager for Easterseals of Central Texas, a service provider for those with disabilities.

"This includes direct costs like special education, hospitalization, medication, paid caregivers, etc., and indirect costs associated with loss of productivity, wages and benefits for the individual and family members," she said.

Texas is one of few states whose Medicaid program does not cover the therapy, according to New York-based Autism Speaks.

Instead, Texas Medicaid covers of a suite of other services for autistic children, including doctor and dentist visits and surgeries as well as developmental and behavioral screenings and nutritional counseling.

Medicaid is supposed to also cover physical, occupational and speech therapy services, but many Texas children, including those with autism, have had trouble obtaining coverage for those therapies.

In 2015, the Legislature cut $350 million in Medicaid reimbursement rates to pediatric therapists, forcing many of them to stop providing services, according to therapy advocacy groups. The Legislature this past session restored some of the cuts, but the state health commission made new cuts that further affected certain therapy providers.

Reports of denial of services have also increased since the state transitioned to managed care.

Legislative fix?

Any Texas children with autism can receive some lower-cost applied behavior analysis therapy through a state autism program, but services have been slashed over the years.

In an effort to serve more children, the Legislature increased funding to the program but approved phasing out comprehensive applied behavior analysis therapy starting in 2016, cutting it down to six hours per week per child instead of 25 to 30 hours per week. Families in the program can receive up to six months of the therapy before they have to wait another six months to participate again.

The number of children in the $7-million-a-year program has grown from 288 in 2015 to 686 in 2016, the latest data available from the state health commission.

Hunter Winfrey, a board certified behavior analyst with one of the Austin locations of Center for Autism and Related Disorders -- one of 20 state contractors to provide applied behavior analysis therapy in the autism program -- said the amount of hours offered in the state program works for some and not for others.

"From my personal experience, six-and-a-half hours a week work great for some clients and that's all they actually really need. But you can also have that one client who you're telling yourself in your head, 'Gosh, if you had 40 hours-a-week, buddy, you could move mountains," Winfrey said.

Diana de la Paz, who lives in Lockhart, can't help but think about what more her 3-year-old son Onecimo Rivera, who is enrolled in the program, might achieve if he had at least 25 hours of the therapy per week.

"He takes some time to focus on doing some activities or even learning numbers or colors or letters. It's hard for him to keep engaged. I am worried. From pre-K to kindergarten and elementary -- I don't know what's going to happen," she said.

Providers and Texas advocates are hoping the Legislature will expand Medicaid coverage to include applied behavior analysis therapy.

Simmons started laying the groundwork this past session by establishing a state board to certify behavior analysts. He has introduced at least one bill each session since first taking office in 2013 to address autism services.

"There are no reasons not to cover the therapy. However, it is expensive," Simmons said. "ABA advocates have successfully argued that coverage of that treatment is a higher priority than Medicaid dollars for other services."

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