Two years ago, seven-year-old Jaime Soto couldn't tell his mom if he was hungry, or that he was in pain, or the answer to any of her simple who-what-where questions. Three years ago, he didn't know how to get dressed or how to put on socks and shoes, how to brush his teeth or wash his hands. He sometimes swallowed things whole, because he didn't know how to chew.
That was before he started occupational and speech therapy. Jaime was born with a developmental disorder that has made it hard for him to connect objects with words, to articulate his ideas or feelings, or, for a while, to eat properly. Sometimes he says he understands something even though his therapist, Martha Meyers, says it in Spanish, a language he doesn't know. Sometimes his sentences come out like gibberish, a language unique to Jaime that only his parents understand.
Meyers — a spunky woman with nearly as much energy as Jaime — visits Jaime twice a week. Using kid-friendly speech therapy tools disguised as a paper fortune teller or a bingo board with lots of pictures, she teaches him how to string together words and phrases, how recognize when he understands something and when he doesn't, and how to answer basic questions. L's and R's are hard for Jaime, and so during a therapy session Monday, when he says the word “lock” like “knock,” Meyers stops him. She reminds Jaime how to roll his tongue the right way, and high-fives him when he gets it right after a few tries.
“Did you see him think about it?” she says. “That's the moment we're looking for, when he stops and realizes, 'This is something I can control.'”
In less than three weeks, though, Medicaid cuts will take effect and could reduce Jaime's therapy sessions down to one a week — or, in the worst-case scenario, discontinue them altogether.
Last spring, the Texas Health and Human Services Commission decided to cut Medicaid rates for speech, occupational and physical therapists by $350 million over the next two years, after the Legislature ordered the commission to contain costs. HHSC will cut Medicaid reimbursement rates for those therapists — who provide care mostly for poor, disabled kids — by up to 25 percent in some cases. Some providers say those cuts will be unsustainable and they may have to slash services or lay off therapists. Some already have. Democratic lawmakers have estimated the cuts' trickle-down effect could put as many as 60,000 kids in jeopardy of losing the pediatric therapy they rely on to overcome their disabilities, including autism, cerebral palsy, spina bifida and severe brain damage, among others.
Last week, all 50 Democratic representatives in the Texas House signed a letter to the Centers for Medicaid and Medicaid, asking the feds to consider how damaging the commission's rate cuts will be for Texas kids, and to stop the cuts from going through. At this point, that request is basically an eleventh-hour Hail Mary.
Kids like Jaime need access to developmental therapy, their parents say.
“If it wasn't for therapy, I don't know where he would be right now,” Jaime's mother, Samantha Romero, says. "He wasn't able to answer simple questions before, and now he talks and talks and talks, even though some words I may not understand.”
“But we're working on it,” Meyers adds.
Romero was among the hundreds of parents and care providers who drove to Austin last year to testify before the HHSC about how the cuts would affect their children and patients. Romero told them Jaime's story, how she and her husband started noticing something was wrong when he was one and how Early Childhood Intervention, which also is affected by the cuts, originally thought the boy was mentally retarded.
When his developmental disorder started to exhibit clearer signs, Romero and her husband enrolled Jaime in occupational therapy. He made enough progress that his occupational therapists discharged him last year — which made him a walking testament to the effectiveness of specialized pediatric care.
Still, even though lawmakers heard endless testimony — not a single person who spoke was in favor of the cuts — they made only small amendments that made little difference in the eyes of care providers. Parents tried to block the cuts yet again by filing a lawsuit against the state, and succeeded in obtaining a temporary injunction. But in April, a judge ultimately ruled that parents did not have standing to sue, and so again, care providers and parents were left to brace for the worst.
If you like this story, consider signing up for our email newsletters.
SHOW ME HOW
You have successfully signed up for your selected newsletter(s) - please keep an eye on your mailbox, we're movin' in!
Diana Dinn, a physical therapist and the administrator of Kids Developmental Therapy's home health program, says that the cuts will have a dramatic effect on the program. Come July, KDT will likely have to stop accepting patients whose healthcare plan does not offer 100 percent reimbursement — which Dinn says is about half of of plans. KDT will likely cut its parent-education class and advanced training or continued education for therapists. KDT will have to stop giving vital stimulation to kids who don't know how to swallow, because the electrodes necessary for the equipment cost too much. And it will cut extra activities for the disabled kids, such as ballet classes for those who have developmental disorders like Jaime's, and are unable to partake in regular classes, Dinn says.
Dinn says the reductions are too much to put down on paper and wrap her head around — in fact, providers are still hoping that, by some last-minute miracle, the cuts will be halted yet again.
“It's like trying to stop a train,” she says. “The trickle-down effect of these cuts — there will definitely be a gap in services. There already is. Not all kids who need services are getting services. We already have access-to-care issues.”
Back at Romero's apartment, Meyers wraps up with Jaime after he starts to get a little restless with the bingo board. After Meyers packs up her activities, Jaime says it's time for her to leave and tells Romero that he wants pizza now — two requests Romero isn't sure would have been possible if it weren't for the therapy the state has now put at risk.