When the insurance decided to cut off two-year-old Lillian Hinojosa’s speech therapy, her parents, Carlos and Maggie, were puzzled.
Their daughter, who has a developmental disorder called Prader Willi syndrome, was only just learning how to talk, and how to swallow soft, puree-like food without throwing it up. Prader Willi causes acute weakness in babies’ muscles, meaning Lillian, who will be three in September, has still not learned to walk or to stand on her own. She prefers rolling. It causes extreme oral aversions, meaning Lillian, until the past year, would not accept any food or water by mouth. She is mostly nonverbal. So for Carlos and Maggie, the milestones — learning to say Mama, taking three meals a day by mouth rather than through a tube — had been tremendous.
Yet her test scores simply weren’t reflecting what Maggie and Carlos had seen: To the Medicaid managed-care organization Amerigroup that reviewed Lillian’s case on paper, it appeared the two-year-old’s milestones simply weren’t enough progress. And so Amerigroup’s medical director, a board certified OB/GYN, wrote Maggie and Carlos an August 1 letter, saying Lillian no longer qualified for the therapy services at this time. The family is mounting an appeal.
“It sucks to be told in as many words that she’s a waste of resources,” Maggie said. “They have to think about where their money’s being spent — I get that. But she’s not hopeless. She will walk. She will eat. She will talk. She will drink from a cup. Her syndrome will not prevent her from doing these things — she’ll get there. It’s just that she needs the therapy to get there.”
Maggie and Carlos say they view their daughter’s denial of speech-therapy services to be a direct result of the Texas Legislature’s failure to adequately fund disabled children’s therapy, instead repeatedly slashing hundreds of millions in funding over the past several years. After the Texas House, realizing the cuts were a mistake, voted 141-0 to restore nearly $160 million in Medicaid funding, Maggie and Carlos thought perhaps that they and other parents’ unending stream of complaints and concerns had finally been heard. But Wednesday is the last day of the special session, and the bill — HB25 — sits idle in the Texas Senate. It was never on Governor Greg Abbott’s list of 20 special-session priorities, and even after the House defied his agenda, throwing its full support behind kids like Lillian, the governor remained mum.
David Reimer, vice president of government relations and contracting with Epic Health Services — Lillian’s therapy provider — said that, since the state handed disabled children’s therapy claims over to managed-care organizations (MCOs) several years ago, MCOs have used increasingly strict criteria to decide who qualifies for therapy and who doesn’t. It’s no coincidence, Reimer said, that the criteria used to measure disabled kids’ progress has gotten stricter as the budget has shrunk.
“MCOs are under the same constraints for revenue — they are paid by the state of Texas to deliver the care,” Reimer said. “As their rate of payment is reduced, they have to have a way of controlling the medical expense they pay out. One way to do that is to have stricter criteria so there are not as many patients eligible for the care, and the care that they’re eligible for doesn’t have the same level of intensity. Instead of 40 or 50 visits, they may only get 25. It’s a matter of the MCO having to manage and be stewards of the funds that they receive. Without those funds from the Legislature, their hands are tied too.”
According to the letter Amerigroup sent the Hinojosa family, Amerigroup did “not clearly see that therapy would help your child more than a home exercise program alone would. We see standardized test scores” — measuring receptive language, expressive language and language ability — “have decreased. We also do not see good progress on therapy goals since the last time we covered therapy.”
The last time Amerigroup tested Lillian was on June 27, Carlos said.
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“Most of the standardized tests that are used to evaluate progression with therapy services are only intended to be used on an annual basis, so you can truly measure how much progress has been made over a year’s time,” Reimer said. “And what we find in many cases is that decisions are being made from standardized tests that have been performed 30 to 60 to 90 days from the initial test. So there’s not been enough time for that testing instrument to show any measure of improvement. That’s a problem.”
Amerigroup responded to requests for comment but we did not hear back with answers by press time; we will update this story if and when we do.
“My daughter can say two things: Momma or Bubba — her brother,” Carlos said. “My daughter doesn’t call me anything.”
Update, August 17: Amerigroup sent the following statement on Wednesday afternoon:
"Amerigroup Texas has been a partner with the State of Texas since 1999, and is committed to ensuring that all of our Medicaid members have access to high-quality care and services. We remain focused on ensuring that our members have timely access to care and services they or their guardians rely on to address and improve their individual health outcomes. We welcome the opportunity to review each member’s unique circumstances and work with our members/member’s guardian so that the provision of high-quality care and services."