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Daniel Wiederhold was one of the lucky ones, born with a rare and usually fatal form of osteoporosis.
Wiederhold had been receiving care from a state skilled care program after spending nine years on a waiting list. He had benefited from special education in public schools, but broke his femur in the seventh grade after his school insisted on sending a nurse for him and the nurse mishandled his motorized wheelchair.
He and his family consider themselves fortunate to have been able to live at home and participate in the community despite the many obstacles. Now 31, he was also the face of the Texas Medicaid Works campaign.
“Our case is one of those cases where this has worked,” said Daniel’s mother, Debbie Wiederhold.
They also know that others aren’t so lucky: Texas has underfunded disability programs for decades, making access to those services a danger zone, and advocates, lawmakers and experts worry that after Roe v. Wade was overturned, it will get even harder as demand for those state services grows but policies remain unchanged.
A University of Houston analysis of 2022 birth rate data found that Texas’ near-total ban on abortions after six weeks of pregnancy resulted in 16,000 more new babies being born in 2022 compared to 2021. Opponents of the abortion policy are beginning to worry that the state will be unable to handle the rise in babies born with disabilities as birth rates rise and some Texans who chose to have an abortion after being diagnosed with certain disabilities before birth no longer have the option.
Left: Daniel Wiederhold attends a session for United Partners, a nonprofit that coordinates activities for people with disabilities, in Pflugerville on Feb. 29, 2024. Right: Debbie Wiederhold looks on at her son, Daniel, as nurse Brooke Miles Jackson prepares to help him stretch. Photo by Maria Crain/Texas Tribune
More vulnerable communities may be especially dramatically affected: Hispanic women have the fastest growing rates, and teen birth rates are rising after declining for the past 15 years, making some more likely to turn to state assistance. People with disabilities also face many barriers to accessing abortion services outside of their state.
And even though children with disabilities have been repeatedly used by both sides in heated political debates over the past year over issues like abortion and education vouchers, opposition advocates agree that the current system is dysfunctional.
For decades, the state has underfunded both special education and Medicaid waivers, a special program that provides care, therapy and other services to Texans with disabilities. The state’s foster care system has been litigated in federal court for more than a decade, with the judge presiding over the case saying it has left intellectually disabled children in “terrible conditions.”
“This situation will create a need for services that the state is already underfunded for,” said Jolene Sanders, advocacy director for the Texas Coalition on Disability.
“These barriers were already there for those of us wanting to give birth, whether we have a disability or not,” she said, “and now they’ve been exacerbated.”
Sanders’ son, Lawson Stallard, has been on a waiting list for 12 years – more than half his life – to receive waiver program services for autism, secondary health disorders and intellectual disabilities.
Sanders said the services will give Stallard, 19, access to better therapy, job search assistance, personal assistance programs, respite care, transportation and family services.
“As kids grow and develop and change, the gap just gets wider and wider,” Sanders said of her son, who was denied special education status by the public school system for at least two years. “We lost the opportunity to get him the appropriate support within the school system and the waiver services he desperately needed.”
“He’s doing really well,” she added, “but I can’t help but wonder how much more independent he could be right now, because so many systems have let him down.”
John Seago, president of the anti-abortion group Texas Right to Life, said there is still a lot of work to be done in the state.
“This is our vision of a truly pro-life Texas,” Seago said. “We care about these kids, we want to uphold these standards, but our system is broken in these regards when it comes to health insurance and waiting lists. It’s very taxing on families, and our system is failing them in so many ways.”
Debbie Wiederhold holds her son Daniel’s hand at their home in Hutto on Feb. 29, 2024. Photo by Maria Crain/The Texas Tribune
States lagging behind
Linda Litzinger said that in the 20 years she has been advocating for the rights of children with disabilities, lawmakers have failed to make any significant improvements to the services the state provides.
Litzinger, a public policy specialist at Texas Parent to Parent, a disability advocacy nonprofit, said the state has had small victories in recent years. One year, the state included everyone waiting for hearing, blind or multiple disabilities in the program. Lawmakers have also adopted targeted solutions to specific problems in special education, such as a recent update to the dyslexia handbook.
They also worked to restore funding for Early Childhood Intervention Services, which provides therapy to children under the age of 3 with autism, Down syndrome and other disabilities, which was hit hard by budget cuts in 2015.
However, Congress has refrained from providing adequate funding for these services for a variety of reasons.
Conservative lawmakers who have run the state for more than three decades tend to oppose more spending on government health programs with no strings attached or conditions attached, which they say amount to entitlement programs that slow the economy and discourage people from taking more action for their own health and well-being.
But disability advocates say the issues aren’t salient enough to be squeezed into the session’s limited time frame, and that most lawmakers misunderstand how these programs work and who they serve.
Either way, the underfunding of these programs is systemic.
“I don’t think you have to have a child with a disability to understand and care,” said Rep. Donna Howard, D-Austin. “At the same time, lived experience influences decisions in Congress, and I think it’s a lack of lived experience that’s the problem. It’s not a campaign priority.”
For example, lawmakers have been concerned about fraud in waiver programs, but the bar for eligibility is very high, with medical professionals visiting applicants for in-person evaluations, as well as income limits and other requirements. There are some duplicate names on waiting lists, which have since been officially renamed “interest lists,” but demand still far exceeds the capacity of these programs.
Future outlook
This caution makes Texas the state with the hardest access to disability services, according to a report released March 5 by the American Community Options & Resources Network and the American Cerebral Palsy Association.
About 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 people in Texas were waiting for services from the Medicaid waiver program, which provides everything from nursing and care to physical, speech and occupational therapy.
But for the 2021 session, lawmakers allocated a total of 1,549 new open slots across these programs, about 0.009% of the waiting list.
The federal government has stepped in to make reforms in the past, in 2018 directing states to remove caps on the number of students who can receive special education. As of 2023, 200,000 students have been in special education programs in the past five years, according to data from Disability Rights Texas.
In 2015, the federal government forced states to add personal care programs for people who qualify for waiver programs but are on waiting lists, but advocates argue this is just a Band-Aid to a larger problem because these caregivers can’t necessarily provide things like nursing services.
Abortion bans could also increase the number of parents with disabilities, who are at higher risk of having their children taken away from them. Studies have shown that parents with disabilities “are more likely to end up in the child welfare system and more likely to have their parental rights taken away,” said Robin Powell, an associate professor at the University of Oklahoma School of Law.
This is another way in which the state’s foster care system could be overwhelmed and unable to adequately serve Texas people with disabilities.
In Texas, parental rights can be terminated “because a parent’s mental or emotional illness or intellectual disability renders him or her unable to support the child,” but evidence is required and the state’s Department of Family and Protective Services says it has allowed intellectually disabled parents to continue supporting their children in the past.
“There are a lot of people out there with disabilities who want to be parents and could be parents, and I certainly don’t want to send the message that I think abortion is necessary,” said Robin Powell, an associate professor at the University of Oklahoma School of Law, “but their parental rights could be compromised by the child welfare system.”
But many advocates, experts and even some lawmakers hope the abortion ban will encourage lawmakers to focus on improving child welfare and better integrating children with disabilities into the system in the next Congress.
Last session, lawmakers failed to pass a $2.3 billion proposal to provide several types of child care assistance.
Jolene Sanders, advocacy director for the Texas Coalition on Disabilities, has been waiting more than a decade for her son to receive disability waiver services. “As kids grow and develop and change, that gap just keeps getting wider,” Sanders said. Photo by Maria Crain/Texas Tribune
“Let’s put our money where our mouths are,” said Councilman Howard of Austin. “We want babies to be born, so let’s make sure we have the services to support them and give them the best quality of life possible.”
Victoria Stavish contributed to this story.
Neelam Vohra 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, based at Arizona State University’s Walter Cronkite School of Journalism and Mass Communication.
Disclosure: The Texas Coalition for People with Disabilities and the University of Houston are financial supporters of The Texas Tribune, a nonprofit, nonpartisan news organization that is supported in part by donations from members, foundations and corporate sponsors. Financial supporters have no role in Tribune journalism. A complete list of financial supporters can be found here.
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