Last year, the Texas legislature approved a $350 million cut in Medicaid reimbursement rates to early childhood intervention therapists and providers. The cuts, made to help balance a billion dollars in property tax relief, affect the most vulnerable Texas children — those born extremely prematurely or with Down syndrome or other genetic conditions that put them at risk for developmental delay.
For months, providers of in-home physical, speech and occupational therapies have continued to serve children who have disabilities, despite mounting financial losses. Now some have had to shut their doors, curtail services or halt their home-visit programs, leaving many children without treatments their parents feel are crucial to the kids' well-being.
That's what's happened to 2-year-old Haylee Crouse, who lives with her three brothers and sisters in the small town of Whitehouse, in East Texas. When she was just 8 days old, Haylee contracted newborn meningitis. It left her with some mental and physical deficits, and she started having periodic seizures.
But at the age of 9 months, Haylee started getting home visits and treatments from physical, occupational and speech therapists, several days a week. The therapists worked for the non-profit Andrews Center, in Tyler, Texas. Amanda Crouse, Haylee's mother, said the therapists have made all the difference in the world for her baby girl.
"They were a lifesaver to her and to our family," Crouse said. "They worked her hard. For example, she was not rolling over. They taught her how to roll over. They then taught her how to crawl, pull up on the couch and then, finally, she learned how to walk."
Today, Haylee walks and laughs and is learning to talk. But all this progress is now at risk, her mother says. The state's cuts to its Texas Medicaid Acute Care Therapy Programs have meant that the one provider of early childhood intervention treatment in Tyler — which has provided in-home therapy to hundreds of families in five East Texas counties — can no longer do so. And so, that's it.
On the 2-year-old's last day of therapy, Crouse said, "her therapist actually cried. Gave her a hug, said goodbye. We took a picture, just to kind of document that moment. And it was an emotional day."
As news of the cuts became public, parents and grandparents of children who have disabilities flocked to Austin in March to implore the state Senate not to do this. Mothers wept in frustration as they testified before the Texas Senate Finance Committee about the vital these early interventions play in their children's quality of life.
"This is Elijah," Mary Castro told the committee members that day, holding up a photo of her 2-year-old son. "When my son was born, my husband and I found out eight days later that he has Down syndrome. He's medically fragile and developmentally delayed."
Without the support of early childhood intervention therapists that Medicaid provided, Castro told the lawmakers, "Elijah would not be walking, signing, doing word approximations, dancing to music, or interacting with his peers. With that said he is delayed. Quite delayed. But we love him, and he loves people."
Republican Sen. Jane Nelson, who heads the Texas Senate's finance committee, tried to reassure Castro and other anguished parents that the state would make sure there would be no interruption of services, whatsoever.
"Every eligible child for these services will continue to receive them," she told the parents. "And we're going to monitor it and we're going to make sure that happens."
But that's been a promise the state has not been able to keep, and it's in the rural parts of Texas where collapse of service has already begun.
"Sometimes you need to come out to these rural areas and see how things are done — and how they have to be done — and even talk to some of the parents before you just decide to cut a program," said Waymon Stewart, the executive director of the Andrews Center in Tyler.
Stewart predicts that children with profound disabilities will suffer most from the closure of his program and others like it, especially in rural regions. It's not uncommon for early childhood intervention therapists to have to drive an hour each way to get to far-flung patients. For children who are prone to seizures, or who have to be connected to machines for daily living, long trips in the car several days a week for treatment in other clinics are simply not going to happen, he says.
The cuts made in the state capital took a $312,000 bite out of his center's budget, forcing him to terminate 20 employees.
"It really hit us hard," Stewart said. So we were really digging into reserves to try to make this program last, and we did for a year."
But after that, he said, "we just decided to give our notice. We couldn't continue to do it unless the rates were changed."
In Wichita Falls, 235 miles away, the same thing has transpired at the North Texas Rehabilitation Center, which serves 10 North Texas counties. Mike Castles, the center's president, said they hung on for a year, but it cost them more than $200,000 in losses. So, after 30 years of service to thousands of North Texas families, that's it for them too.
"It's all about money," he said, "and it created some internal problems financially with our other programs as well. There's just so much money to make this all work. We tried to for a year; it got worse instead of better with even more bad news coming for this fiscal year."
The state is actively hunting for new therapy providers. But the trick is finding new providers who can make work the same difficult financial circumstances that drove previous health providers out of the program.
Update: 12:33 p.m. ET Nov. 4, 2016
Texas Health and Human Services has notified NPR that it recently contracted with new therapy providers in Tyler and Wichita Falls.
AUDIE CORNISH, HOST:
Last year, Texas lawmakers looking to balance out a billion dollars in property tax relief made a decision that's now affecting families of children with special needs. The legislature instead trimmed $350 million in Medicaid reimbursement rates for early childhood intervention providers. These are the people who provide in-home physical, speech and occupational therapy. And for months, they've continued working despite financial losses. But now, as NPR's Wade Goodwyn reports, some are giving up.
HAYLEE CROUSE: (Laughter).
WADE GOODWYN, BYLINE: Two-year-old bright-eyed and blond-haired Haylee Crouse toddles around her grandmother's home outside the town of Whitehouse in east Texas.
GOODWYN: At the age of eight days old, tiny Haylee Crouse contracted newborn meningitis which left her mentally and physically disabled. At the age of nine months, she began receiving in-home physical, occupational and speech therapy several days a week. Amanda Crouse is Haylee's mother.
AMANDA CROUSE: They were a lifesaver to her and to our family. They taught her how to roll over. They then taught her how to crawl, pull up on the couch, and then finally she learned how to walk.
GOODWYN: But the state's cuts to its Texas Medicaid Acute Care Therapy Programs meant that the one early childhood intervention provider in Tyler, Texas, closed its program. The Andrews Center provided in-home therapy to hundreds of families in five east Texas counties. And so that's it for them and for Haley.
CROUSE: Her therapist actually cried, gave her a hug, said goodbye. We took a picture just to kind of document that moment, and it was an emotional day.
MARY CASTRO: Hi, my name is Mary Castro. And I want to thank you, Madam Chair, and the community members for letting me speak on behalf of my son.
GOODWYN: As news of the cuts became public, parents and grandparents of disabled children flocked to Austin to implore the state senate not to do this. Mary Castro's two-year-old son has Down Syndrome.
CASTRO: Without these therapies, Elijah would not be walking, signing, doing word approximations, dancing to music, interacting with his peers. With that said, he is delayed - now, quite delayed - but we love him, and he loves people.
GOODWYN: Pleading with the powerful on behalf of your defenseless child can be an emotional undertaking.
CASTRO: I'm so sorry.
JANE NELSON: Don't be sorry. Take a drink. There's water right in front of you.
CASTRO: OK. (Unintelligible).
GOODWYN: Republican Sen. Jane Nelson, who chairs the Senate Finance Committee, tried to reassure Castro and the other parents that there would be no effect on their children whatsoever.
NELSON: Every eligible child for these services will continue to receive them. And we're going to monitor it, and we're going to make sure that happens.
GOODWYN: But that's been a promise the state has not been able to keep, and it's the rural parts of Texas where the first collapse of service has begun.
WAYMON STEWART: Sometime you need to come out to these rural areas and look and see how things are done and how they have to be done before you just decide to cut a program.
GOODWYN: Waymon Stewart is the executive director of the nonprofit Andrews Center in Tyler, Texas. Stewart predicts profoundly disabled children will suffer the most. For children connected to machines or prone to seizures, long trips each way in the car several days a week are probably not going to happen. The cuts made in the state capital took a $312,000 bite out of Andrews' budget, forcing Stewart to terminate 20 employees.
STEWART: It really hit us hard. So we were really having to dig into reserves to try to make this program last, and we did for a year. After that, we just decided to give our notice. We couldn't continue to do it unless the rates were changed.
GOODWYN: Two hundred and thirty-five miles away in Wichita Falls, the same thing is about to transpire at the North Texas Rehabilitation Center. Mike Castles is the center's president.
MIKE CASTLES: It's all about money. And it created some internal problems financially, you know, with our other programs, as well, because, there's just so much money to make all these work. And we tried it for a year. It got worse instead of better with even more bad news coming in this fiscal year.
GOODWYN: The state is actively hunting for new therapy providers. The trick is finding new prospects who can make the same financial circumstances that drove the previous providers out of the program nevertheless work for them. Wade Goodwyn, NPR News, Tyler, Texas. Transcript provided by NPR, Copyright NPR.