Amanda Crouse watched helplessly as the words began to slip away from her daughter Haylee. It had taken Crouse and a team of therapists months to help Haylee, then 2 years old, learn basic words. And now they were simply vanishing, along with the state-funded therapy services that had helped with her physical and verbal challenges.
When she was just eight days old, Haylee was stricken with meningitis and seizures that left her with a slew of developmental delays. With the help of therapists, she learned to crawl when she was 13 months old and learned to walk when she was 18 months old. Her first words — “mama” and “dada” — came at age 2.
Crouse credits much of her daughter’s progress to Early Childhood Intervention (ECI), a state program that funds therapy for children like Haylee with severe developmental disabilities during their first three years. But in October 2016, the only provider near the Crouses’ home just outside Tyler shut down due to state budget cuts. For nearly four months, Haylee went without therapy.
“It affected her in a huge way,” Crouse said. “She was receiving a lot of therapy; it was her world for two years.” When Haylee’s therapy was cut off, her behavior changed. She started hitting and biting more and became more irritable. She was diagnosed with autism, and her family couldn’t do anything to address it.
Over the last five years, the Texas Legislature has slashed funding to ECI. In 2015, lawmakers sliced $350 million from the program, cutting Medicaid reimbursement rates for providers. Three organizations pulled out of the program last year as a result, including the Andrews Center in Tyler, which served Haylee and hundreds of other kids in East Texas. Three additional providers shut down their ECI programs in 2017, and kids were shifted to other existing contractors.
Lawmakers say the cuts won’t limit access, but providers insist they’re not able to maintain the same level of services with far less money. Even when new organizations are found, experts say there is lag time to hire and train staff, and enrollment drops off. It took months for another organization to start offering therapy services in Tyler.
The number of kids receiving ECI services in Smith County, where the Crouses live, dropped 29 percent between 2011 and 2016, according to a new report from Texans Care for Children.
During the recent legislative session that wrapped up in August, an uproar over the cuts inspired only modest progress. Lawmakers restored just one-quarter of the Medicaid funding they cut in 2015, and Governor Greg Abbott never made restoring ECI funding a priority.
Haylee’s story, at least, has a happy ending. Federal law mandates that kids with disabilities have access to early intervention services. So with nowhere else to turn, Crouse filed a formal complaint with the Texas Health and Human Services Commission. With the help of the nonprofit Disability Rights Texas, they were able to force the state to restore services for Haylee in January, a few months after she was cut off. But Crouse worries that other parents may not have the wherewithal to take legal action, or know it’s an option.
“Each day that went by with Haylee not getting services was really scary,” said Crouse. “It saddens me that [lawmakers] feel they can just take these things away. If they had a child in the same situation, maybe they’d view it differently.”