With Texas births rising post-Roe, disability advocates say child services need bolstering

Debbie Wiederhold talks with her 31-year-old son Daniel at their home in Hutto on Feb. 29, 2024. Though Daniel was born with a rare brittle bone disorder, he lives an active life with support from state services. (Credit: Maria Crane/The Texas Tribune)

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Daniel Wiederhold, born with a rare and usually fatal type of brittle bone disorder, was one of the lucky ones.

Wiederhold received caregiving services from a specialized state health care program — after being on the waitlist for nine years. He benefited from special education in public school — until he broke his femur in seventh grade, after the school insisted on providing their own attendant nurse for him and she made a mistake with his power chair.

He and his family consider themselves blessed because, despite the many obstacles, he’s been able to live at home and engage in the community. Now 31, he was even a face of the Texas Medicaid Works campaign.

“We are one of the stories where this has worked,” Debbie Wiederhold, Daniel’s mother, said.

They also know others won’t be so lucky. As Texas has underfunded programs for people with disabilities over decades, accessing these services is a minefield. And advocates, lawmakers and experts worry it may become even more difficult in the wake of Roe v. Wade being overturned, as demand for these state services rises but policy goes on unchanged.

More than 16,000 additional babies were born in Texas in 2022 compared to 2021 after the state banned almost all abortions after six weeks of pregnancy, according to a University of Houston analysis of 2022 fertility data. People across the abortion policy divide have started worrying that the state won’t accommodate an increased population of children with disabilities, both as the fertility rate rises, and as some Texans who may have chosen to have an abortion after a prenatal diagnosis of certain disabilities no longer could.

Daniel listens while partners and volunteers of United Partners in Pflugerville talk on Feb. 29, 2024. Daniel attens UP a few days of each week. (Credit: Maria Crane/The Texas Tribune)

Debbie watches as RN Brooke Miles Jackson get ready to help Daniel stretch out following UP on Feb. 29, 2024 (Credit: Maria Crane/The Texas Tribune)

More vulnerable communities may see particularly dramatic impact: Hispanic women saw the highest rate of growth and teen birth rates have increased after declines over the past 15 years, increasing the likelihood that some will need to lean on the state for support. People with disabilities also faced more barriers to access abortion services out of state.

And despite children with disabilities repeatedly being used on both sides in the heated political debates around topics like abortion or school vouchers in the past year, advocates across the aisle have agreed that the current system is malfunctioning.

Over decades, the state has underfunded both special education and the capacity of Medicaid waivers, specialized programs that offer services like caregiving and therapies for disabled Texans. The state foster care system has been litigated for more than a decade in federal court and has left children with intellectual disabilities in “appalling conditions,” according to the judge overseeing the case.

The situation “is going to trigger a need for services the state is already underfunding,” said Jolene Sanders, advocacy director for the Coalition of Texans with Disabilities.

“For those of us who want to carry a child to term, regardless of whether or not there's a disability, these barriers already existed,” she said. “This has just been exacerbated.”

Sanders’ own son, Lourson Stallard, has been on a waitlist for 12 years — more than half of his life — to receive waiver program services for autism, some secondary health conditions and an intellectual disability.

With these services, Stallard, 19, would be eligible for better therapy, help finding a job, personal assistance programs, respite care, transportation, family services and more, Sanders said.

“The gap just gets wider and wider as these kids grow and they develop and they change,” Sanders said of her son, whose public school denied him special education eligibility for at least two years. “We lost an opportunity to get the appropriate support within the school system and to get those waiver services that he so desperately needed.”

“He's doing really, really well,” she added, “but you can't help but wonder how much more independently he would be living right now. Because along the way, various systems failed him.”

A lot of work is left to be done within the state, said John Seago, president of anti-abortion group Texas Right to Life.

“That's in our vision of a truly pro-life Texas,” Seago said. “We care for these children. We want to support these standards, and our system is very broken when it comes to them, as far as medical coverage and the waiting lists. It's very demanding on the family and our system has really failed them in many ways.”

Debbie Wiederhold holds her son Daniel's hand in their home in Hutto on Feb. 29, 2024. (Credit: Maria Crane/The Texas Tribune)

A state falling behind

In the 20 years Linda Litzinger has advocated for children with disabilities, lawmakers have made no significant improvements to services the state provides, she said.

Smaller victories have been won over the years, said Litzinger, public policy specialist at Texas Parent to Parent, a disability advocacy nonprofit. One year, the state scooped all people waiting for Deaf Blind Multiple Disabilities services into the program. Lawmakers have adopted solutions to target specific problems in special education, like recently updating the Dyslexia Handbook.

They also worked to restore funding to Early Childhood Intervention services, which provide therapies for children with autism, Down Syndrome and other disabilities under the age of three, after budget cuts hit them hard in 2015.

But the Legislature has held back from fully funding these services for multiple reasons.

Conservative lawmakers, who have run the state for more than three decades, tend to push back on spending more money for government health care programs without strings attached — or at all. They say they amount to entitlement programs that drag down the economy and disincentivize people to take more initiative on their health and well-being.

Disability advocates, though, have said the issues aren’t flashy enough to wedge into the session’s limited timeframe and most lawmakers misunderstand the way these programs function and the populations they serve.

Either way, the underfunding of these programs is systemic.

“I don't think you have to actually have a child with a disability to have compassion for understanding, for a willingness to invest,” state Rep. Donna Howard, D-Austin, said. “At the same time, lived experiences do impact the decisions that are made at the Legislature. I think that it's the lack of lived experience. It's the lack of it being a campaign priority.”

For example, legislators worry about fraud in waiver programs, but the bar to qualify is extremely high: medical professionals visit applicants for in-person evaluations. There are also income limits and other requirements. The waitlists have some duplicate names on them and have been officially renamed to “interest lists” as a result, but the demand still vastly outweighs these program’s capacities.

Looking Ahead

This wariness has made Texas the hardest state to access disability services in, according to a report released March 5 from the American Network of Community Options and Resources and United Cerebral Palsy.

Around 63% of people nationwide who were on waiting lists for home and community-based services in 2023 lived in Texas, according to the report.

As of March 5, more than 156,000 Texans are waiting for a Medicaid waiver program’s services, which provide everything from nursing and caregiving to physical, speech and occupational therapies.

But in the 2021 session, lawmakers allocated 1,549 total new spots to open up across these programs — about 0.009% of the waitlists.

In the past, the federal government has intervened to make changes. In 2018, it instructed the state to remove a former cap on the number of students who could receive special education. As of 2023, 200,000 students had joined special education programs in the past five years, according to data from Disability Rights Texas.

In 2015, the feds also forced the state to add a personal attendant program for people who qualify for waiver programs but are stuck on waitlists. But advocates say it was a band-aid on a bigger problem because these attendants can’t always provide things like nursing services.

The abortion ban may also increase the number of disabled parents, who have an increased risk of having their child taken away from them. Multiple studies show they are “more likely to be referred to the child welfare system and more likely to have their parental rights terminated,” Robyn Powell, an associate law professor at the University of Oklahoma College of Law, said.

It’s another way an overwhelmed state service — the foster care system — might be unable to adequately serve Texans with disabilities.

In the state of Texas, termination of parental rights can be “based on the parent's inability to care for the child, because of the parent's mental or emotional illness or mental deficiency,” although it requires evidence and has allowed parents with intellectual disabilities to continue caring for their children in the past, according to the state Department of Family and Protective Services.

“There's a lot of people with disabilities out there that want to be parents, and should be able to be parents. I never want the message to be that I think abortion is needed,” Robyn Powell, an associate law professor at the University of Oklahoma College of Law, said. “But they could have their parental rights threatened by the child welfare system.”

But many advocates, experts and even some lawmakers hope the banning of abortion can incentivize lawmakers to focus on improving child care and better integrating children with disabilities into the system the next time they convene.

Last session, lawmakers failed to pass a $2.3 billion proposal to scaffold several kinds of child care.

Jolene Sanders, advocacy director for the Coalition of Texans with Disabilities, has been waiting over a decade for her son to receive waiver program services for his disability. “The gap just gets wider and wider as these kids grow and they develop and they change,” Sanders said. (Credit: Maria Crane/The Texas Tribune)

“Let's put our money where our mouths are,” said Howard, the Austin state representative. “We want these babies to be born? Let's make sure we're providing the services that will support them and give them the best quality of life we can.”

Victoria Stavish contributed to this story.

Neelam Bohra is a 2023-24 New York Times disability reporting fellow, based at The Texas Tribune through a partnership with The New York Times and the National Center on Disability and Journalism, which is based at the Walter Cronkite School of Journalism and Mass Communication at Arizona State University.

Disclosure: Coalition of Texans with Disabilities and the University of Houston have been financial supporters of The Texas Tribune, a nonprofit, nonpartisan news organization that is funded in part by donations from members, foundations and corporate sponsors. Financial supporters play no role in the Tribune's journalism. Find a complete list of them here.

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