When Jessica Andrews's son still wasn't talking at age one and a half, she started to get worried. For a short time, he had learned to say a few words, like “mama,” and “amen” after prayers. But then it all stopped, and Jonathan wasn't saying anything. When Andrews tried to show him something exciting — a toy, perhaps — Jonathan would only stare off, away from her, and she couldn't seem to get his attention.
“This was my first child," she said. "I didn't know what to do."
Eventually, Andrews took Jonathan to see early childhood specialists, who informed her that her son was mildly autistic with a speech delay. Simple things that most toddlers know how to do and that people take for granted, like talking or using a spoon, are things Jonathan doesn't do. It's not that he can't — but it has taken extensive therapy for him to learn how to point to body parts, to communicate with his hands and to move his mouth the right way to say letters and little words like “go.”
Next week, though, the types of therapy Jonathan receives — Early Childhood Intervention until he was three and now twice-per-week speech and occupational therapy — will fall victim to $350 million in Medicaid rate cuts, despite more than a year of outcry and complaints from hundreds of therapy providers and from parents like Andrews. First proposed last spring after the Legislature ordered the Texas Health and Human Services Commission to contain costs, the cuts will reduce Medicaid reimbursement rates for therapists by up to 25 percent in some cases. Last year, Democratic lawmakers feared the cuts would put 60,000 poor, disabled children at risk of receiving less therapy or losing access to care altogether.
The idea is unthinkable for Andrews, who says she doesn't know what she would do if the trickle-down effects of these cuts end up jeopardizing her son.
“It's so crucial because — I'm sorry if I'm being emotional — as a parent, you want the best for your child. When you're pregnant, you just have this whole vision for your child. And you just don't expect this to happen,” Andrews said, watching her son practice saying “go” while jumping on blue padded mats. “I try my best as a parent to do what I think is best, but [his therapists] help me, and they teach me what to do — whatever works best for him to help him learn. I couldn't do it without them. I wouldn't know where to start.”
Last week, however, there was a glimmer of hope: House Speaker Joe Straus said that even though the cuts were “well-intentioned,” “maybe they were a mistake.” Straus vowed to restore funding for the disabled children's therapy when the legislative session convenes in January.
Easter Seals Development Director Kelly Klein said it was the first time she had heard a lawmaker admit some regret about the cuts. As a result of his promise, Klein said Easter Seals will likely not be making any cuts to its budget in hopes that Straus follows through on it and the organization's funding is restored next year. In the meantime, she said, Easter Seals will be taking losses as it operates over budget
"The cuts make it so that we will nowhere near break even," Klein said, adding that she and her team will be charged with increasing fundraising efforts. "We're not making any cuts to our services, because the community depends on us. We'll have to wait for the [legislative] session and see what happens, and pray every single night that they decide to reverse it. We'll take the hit for those months in the meantime."
Klein said that about half of the patients Easter Seals sees are on Medicaid. The last time the Legislature made cuts to disabled children's therapy, Klein said, it set back Easter Seals' budget by about $1 million, resulting in therapist layoffs. When therapy providers are operating with fewer resources, she said, qualifications change as to what kids will be accepted to programs: Severely disabled children will always be prioritized, she said, but children who, for example, were born three months premature and could really benefit from several months of therapy may not be accepted because of resource constraints.
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This creates what Klein called a "huge domino effect," whereas that baby who was born three months premature and did not get Early Childhood Intervention services may not be ready for school at age four or five, and therefore may need additional help from special-needs teachers or more specialized types of therapy in the future. Which only ends up being more expensive for everyone, Klein said, adding that if the Legislature aims to "contain costs," this is not the way to do it.
"Historically, it really seems to me that every time the state of Texas does a budget cut, the first thing they go to is early education and early intervention. Anything to do with kids," Klein said. "I literally cannot wrap my brain around it. It's our future, you know? And we keep cutting it."
Andrews says she will keep her son in therapy as long as it's necessary, but hopes one day he will become independent. Though talking will take some more time, she said she's been proud of the progress Jonathan has made in learning to communicate in other ways. Whenever he learns a new word, or even says one, Andrews and Jonathan's therapists shower him with rewards: high-fives, tickling, clapping.
At the Easter Seals therapy clinic Thursday, Jonathan seemed to be waving good-bye to his speech therapist, Maiya Allen, as she walked toward the door, opening and closing his fist — a new movement. But this time he didn't respond to any of the therapists' cheers and claps: Fearing she was leaving, Jonathan only pouted.