Why the best autism treatment is out of reach for poor Texas families

Austin American-Statesman (TX)

Dec. 22--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 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 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. An additional 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 that, 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 for it.

"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 under the Affordable Care Act. 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 therapy's effectiveness. "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 Statesman that, in a matter of months, their children were throwing fewer tantrums, paying more attention and using improved 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 life-changing for 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. Her 5-year-old daughter Ashlyn receives the therapy four times a week at the 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.

'Shortsighted'

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 shortsighted 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," Sanders 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.

"When your insurance doesn't cover something that your child needs and you're trying to do it yourself, it's putting a lot of the burden on the family when we should be focusing on other things like trying to help her build her self-esteem, or helping her enjoy life, not acting as her therapist 24/7," said East Austin resident Lauren Rangel, whose 5-year-old daughter Gabby has autism. Medicaid denied Gabby twice-a-week speech therapy and won't cover applied behavior analysis therapy.

Rangel and her husband have tried to learn how to offer the therapy themselves through online training and training through the University of Texas.

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.

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 a week per child instead of 25 to 30 hours a 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, according to 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 number of hours offered in the state program works for some and not for others.

"From my personal experience, 6 1/2 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 a 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, the state House representative, 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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