Why autism treatment is out of reach for poor Texas families
"We talk to hundreds of families every year and a large majority of them need access to ABA therapy," said
Some of these same
About 22,000
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.
"With the uncertainty of House leadership at this point, it is impossible to predict," he told the
Gold-standard treatment
Texas Medicaid offered to cover
"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.
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
"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
Unable to obtain coverage for Ashlyn's therapy, Arbogust's husband sold his company in
'Short sighted'
In 2014, the
"It's short sighted on
The therapy could decrease the lifetime cost of supporting someone with autism by as much as
"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.
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
In 2015, the Legislature cut
Reports of denial of services have also increased since the state transitioned to managed care.
Legislative fix?
Any
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
"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.
"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
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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