A Mother and Her Autistic Son Brace for Medicaid Cuts
Occupational therapist Amanda Lucio tries to get Vail, who is autistic with a food aversion, to try pears for the first time as his mother, Kerry, looks on.
The waiting room door swings open, and nine-year-old Vail starts on a sprint to Dr. Michael G. Pearson. The doctor flips Vail upside down and carries him by the ankles down the hall to their 2 o'clock speech therapy appointment, and Vail is laughing hysterically.
"Do you want your ankles back?" Pearson asks Vail. Twice a week, the doctor will try to teach Vail, who is autistic, to communicate with more than laughter or oohs and aahs, Vail’s primary means aside from pointing or hand gestures. Until a few months ago, Vail hadn’t spoken in six years.
To kick off the appointment, Pearson — Mister Michael to his patients at Kids Developmental Clinic — tumbles with Vail onto the padded floor where speech therapy mostly takes place, a room resembling a mini gymnast training camp for kids, complete with a ball pit and a padded bench-like ceiling swing.
“He gets four hours a week,” says his mother, Kerry Sellers, leaving the room to drop off her many bags in Pearson's quasi-office, full of occupational teaching devices disguised as toys. “For a kid like him, he needs more like 40. But we just can’t afford that. And that’s the problem with the Medicaid cuts.”
Two weeks from now, Sellers will find out whether her son gets to keep his four hours or if that will get slashed in half to two — or, in the worst-case scenario, if his speech therapy is cut entirely.
Earlier this spring, the Texas Health and Human Services Commission decided to cut pay for Medicaid acute care therapists by $350 million over the next two years, after the Legislature ordered it to contain costs. Should the cuts go through, occupational, speech and physical therapy clinics across the state aiding children with disabilities ranging from autism to cerebral palsy to spina bifida may have to let therapists go in order to balance their significantly smaller budgets, leaving many patients without services. Speech therapy is expected to be hit the hardest, slashed by 30 percent, and occupational and physical therapies could see cuts between 18 and 20 percent. Also affected are therapists providing care at patients’ homes, who could face cuts of between 18 and 20 percent.
Five families and three providers filed a lawsuit last week asking a Travis County judge to halt the cuts from going through. The cuts are expected to take effect on September 1 — but therapy providers and stakeholders weren’t able to voice opinions and provide feedback until a July 20 public hearing, leaving lawmakers with little more than a month to change how the cut is implemented. In a letter to HHSC Executive Commissioner Chris Traylor — which was signed by 28 state representatives urging him to reconsider the cuts — providers estimated that these cuts may cost 7,500 therapists their jobs and affect 60,000 pediatric patients, primarily kids like Vail.
Soon, Vail and Pearson join Sellers in the playroom-office. Vail, still laughing, lies on the floor mat on his stomach while Pearson squishes him with a puffy beanbag. It’s Vail’s favorite game. “He’s a sensory seeker,” says Pearson, who is also the clinic director. Vail’s love of sensory pressure and sensations is Pearson's sneaky way of trying to teach him to simply say the words “off” and “on,” if he wants Pearson to stop with the beanbag. He uses the same trick when teaching Vail to say body parts: Later, in the gymnast room, he grabs Vail’s feet while Vail prances around in the ball pit. “Do you want this foot back?” he asks.
Sellers, 40, credits the therapy with getting Vail to start talking again — little words here and there. She's ecstatic to tell Pearson that just last night, Vail said “go” several times as she walked past him at home.
Since he started coming to therapy at KDC almost four years ago, Pearson and Vail’s occupational therapist, Amanda Lucio, have made significant progress with Vail: He has learned to put on and take off his own socks and shoes, to brush his teeth with minimal assistance and his hair with moderate assistance, and to try new foods like fruit. He uses a communication board here and at home that he points to if he’s thirsty, or wants to play, or wants to take a bath.
But Sellers says that whenever Vail has to miss appointments, they end up having to start over again. Last year was the longest stretch: Sellers, a single mom who can’t work in order to take care of Vail, had to go home to Iowa for two months for a family emergency. After a week without therapy, Vail’s behavior became increasingly aggressive and non-compliant — still the eternally laughing boy, but now uncontrollable. “He lost almost everything that he had learned,” Sellers says. “There was a major regression. If we saw Miss Amanda and Mister Michael even one less day a week, we would see that — we would see major behavior. These kids thrive on a schedule. If they cut it altogether, I don’t know what I’m gonna do.”
If KDC is unable to keep Vail as a patient because of cuts in staff or resources, Sellers would have to seek therapy for her son elsewhere and would be placed on a waiting list. Bethany Dibble, administrator and occupational therapist with KDC, said that among the clinic's three Houston-area locations, there are about 100 kids on each waiting list. “When we call and offer people a spot, they’re like, ‘Oh, yes, we’ve been waiting for years,’” Dibble says. “There’s already problems, and it’s not going to get better if there’s not enough providers.”
Dibble said KDC currently serves about 350 patients at its facilities and another 350 patients who require therapists to visit them at home. Of those, she estimates about 90 percent are on Medicaid.
Dibble was one of hundreds who attended the 12-hour public hearing on July 20, in which concerned parents and therapy providers offered testimony to the HHSC about how the cuts would affect them. Dibble read from the hundreds of letters from parents like Sellers who couldn’t make it, who had written to lawmakers telling their child’s story. For the families who could attend, many brought their children with them, Dibble says, to "show the HHSC that 'My child's not just a number." Before that night, the impact the cuts would have on kids like Vail was not part of the research.
Occupational therapist Amanda Lucio plays with Vail while he wraps up in his "body sock," which compresses tightly on his skin. Therapists say Vail is a "sensory seeker."
That’s been one of the biggest criticisms of HHSC’s budget cut decisions — the absence of patient and provider input that could have influenced the decisions. Instead, the cuts were based on a single study by Texas A&M, commissioned by the Legislature, that compared Texas’s Medicaid reimbursement rates to those of other states. It found that, in some cases, Texas was paying more than three times higher Medicaid reimbursement rates for these therapy services compared to other states, citing a dramatic increase in the cost of therapeutic services between 2009 and 2014 — rising from $412 million to $699 million. The number of clients had grown from 94,039 to 148,293. The cuts were intended to quell the growth, and the costs.
But the problem, says spokesman Bill Noble of the Texas Association for Home Care & Hospice, one of the biggest lobbyist groups fighting against the cuts, is that because of the different ways states and commercial markets run their therapy programs, the study’s methodology was like comparing apples and oranges. Which left the state with both misleading numbers and no objective analysis of the impact that cuts would have on the actual people receiving care. “From the beginning, the state’s approach has been misdirected,” Noble said. “The numbers just don’t seem to add up.”
Analysis by Alfredo Sepulveda, a Houston-area health-care business risk analyst and information scientist at Quantum Decision Research, concludes that neither the A&M study nor HHSC's interpretation of it can be taken seriously due to additional holes. For one, Sepulveda says the sample size was too small (11 unnamed states). And for the state comparisons to be accurate, he writes, we would need raw data from all 50 states that also considered each state's different policies and budgeting strategies. Sepulveda also says the study should have further explored the population groups in Texas that greatly need services — for example, if Texas has larger numbers of children who are chronically disabled than other states, caring for those children would in fact require more services and higher reimbursement rates. The A&M study also never considered the hundreds of people not receiving services while sitting on a waiting list, Sepulveda notes.
HHSC spokesman Bryan Black explained that the Legislature specifically requested the research focus on the median commercial rates among states, and so HHSC was only following orders.
Sellers believes the state also did not consider the long-run cost of these across-the-board cuts. If her son regresses and has to make up lost ground continually, she’s concerned his intensive treatment may have to continue into adulthood. “For kids like Vail, kids with autism, if you take care of them while they’re young and teach them these life skills, teach them to be an active member of society, when they get older,, you may not need to help them as much,” she said. “By cutting it, you’re going to have to help them much longer now, so it’s going to cost everybody more money in the long run.”
After Pearson's appointment with Vail ends, Lucio takes him to the kitchen for occupational therapy, where she’ll attempt to get him to try pears for the first time. He won’t eat them but he’ll play with them — and this is one place where doctors and parents alike consider that a success. “A few weeks ago, he wouldn’t have even touched it,” Sellers says.
So he’ll come back in a few days and try again. Sellers buckles Vail in for the hour-long car ride home, where she can’t take her eyes off him. She'll get a break for an hour or two when Vail’s dad stops by and plays with him so she can shower and clean up the house.
But for now Vail must get his shoes on, the most immediate struggle for Sellers and Vail’s therapist. He’s squirming and throwing his hands and legs around — laughing nonstop — and it takes both Sellers and Miss Amanda to hold him still just for a second.
“Vail fights her tooth and nail about putting on his socks and shoes every time,” Sellers says. “He doesn’t want to leave therapy.”