Advocates want Texas lawmakers to address long wait times that people with disabilities face for home and community-based health services.
With almost 200,000 Texans on an “interests list” for certain Medicaid programs, Texas Medicaid officials said the cost of delivering services is growing every year – which limits how many people the state can serve. During a House Human Services Committee public hearing Tuesday, advocates and some state lawmakers said they worry the long waits are causing access issues for people with disabilities.
In 2024, the Texas Health and Human Services Commission, or HHSC, projected enrollment in state-supported living centers, an institutional care setting, would begin to increase after declining for more than a decade.
“In many cases, this reflects not true choice,” Sabrina Gonzalez Saucedo, director of public policy and advocacy for the Arc of Texas, “but a lack of community-based supports prior to when a person reaches a point of crisis.”
'Interest' lists for Medicaid services
The HHSC offers several programs through home and community-based service Medicaid waivers – which provide alternatives to institutionalization for people with intellectual and developmental disabilities, or IDD. The number of “slots” available for these waivers or programs are limited based on how much the state decides to dedicate to services.
Because the demand for those services is so much higher than the available slots, Gonzalez Saucedo said people can wait 17 to 18 years for programs like the Community Living Assistance and Support Services Waiver, or CLASS, and Home and Community-based Services Waiver, or HCS.
“To put that into perspective, my own sister has been on the HCS interest list for eight years,” she said. “Today, she is number 83,884 out of 132,988 Texans waiting for access to HCS."
As of March 2026, there are more than 198,000 people across six HHSC interest lists, according to state officials. However, HHSC officials said there’s no evaluation of eligibility before people join interest lists, so some people end up being ineligible for services.
At the end of August 2025, about 2,500 people were released from interest lists and enrolled in services within the state’s two-year budget cycle – but that doesn’t represent the total number of people removed from the lists.
“Of the people who were denied, declined or withdrawn in that same period, it was almost 15,000,” said Emily Zalkowsky, Texas state Medicaid director. “The majority of people are not getting enrolled because they’re not eligible, they decline, we can’t find them, one of those reasons. Not to say there’s not a lot of need, but that take-up rate is important to understand.”
State lawmakers tackle IDD issues
Texas House Speaker Dustin Burrows tasked House Committee on Human Services with evaluating the availability of services for Texans with IDD. State representatives are expected to provide policy recommendations on the topic ahead of the 2027 legislative session.
Several committee members asked HHSC leadership to explain how many people were actually in need of services, but HHSC executive commissioner Stephanie Muth said that’s not information the agency can obtain.
While some states do regular eligibility assessments, Texas does not. Instead, Texas families join an interest list for waivers through their local intellectual and developmental disability authority, or LIDDA. The LIDDA reaches out every two years to ask families if they’re still interested in services, but until people are invited off the list, Texas doesn’t assess eligibility.
“That’s really just completely changing the way that we handle the waiver services, which is certainly something that can be done,” Muth said. “There’s going to be some additional administrative needs to change the way we manage those lists. But it gives you as policymakers…a better picture around who that eligible population is, because I know that’s a frustration point.”
Committee Vice Chair Rep. Christian Manuel, who represents House District 22 in Beaumont, said he’s worried about what the long wait for services means for the state as the population continues to grow.
“It frightens me because it’s like then we’re going to have more students who are not getting these services, and I do think it’s time that we really start understanding that we just need to fully fund this program,” Manuel said. “I would never want us to go back to a place where we’re just saying ‘oh, we can’t handle them’ and we just start institutionalizing people. We know that makes things so much worse for anybody, whether you have IDD or not.”
Rep. Toni Rose, who represents House District 110, which includes parts of Dallas, said the state has made progress when it comes to mental health, but that left a significant part of the community without support.
“The IDD community has been left behind,” Rose said. “It is about time the state stepped up and really assist this community. I think it's a travesty for someone to have to wait on the list for services for over 17 years.”
Fellow committee members Rep. Candy Noble, who represents House District 89 in North Texas, and Rep. Aicha Davis, who represents House District 109, which includes parts of Dallas, asked questions about whether the list could be restructured to account for level of need.
“I had the honor and pleasure of talking to a mother about this, and she said that she feared her son would die before he became eligible,” Davis said. “Has there ever been an attempt at like a tiered system based on medical necessity?”
Texas Medicaid Director Emily Zalkowsky said the state is looking at the whole IDD services continuum, including waivers, to see if they could be restructured to serve more people in different ways.
“As far as the medical necessity, everybody who is eligible for one of these waivers…their needs are very high,” Zalkowsky said.
Wait times for other services
State officials did assure lawmakers that as families wait for services, they are connected to other programs and resources paid for by the state general revenue fund and offered through LIDDAs.
However, people may have to wait for those services as well.
Jenny Goode, CEO of the Betty Hardwick Center – a LIDDA in Abilene, represented the Texas Council of Community Centers at the public hearing. She said there have been significant cuts to IDD services in Texas.
“There are over 16,000 Texans on general revenue service waiting lists,” Goode said. “Which means they cannot receive services from their local IDD authority because there aren’t resources available to serve them.”
Goode said there are about 500,000 people with an IDD in Texas — and she said community-based resources have simply not kept pace with the demand for services.
“Over time, local IDD authorities have been forced to scale back or eliminate services such as nursing supports and rehabilitation,” she said. “The mounting pressure across the system raises serious concerns for providers at every point in the continuum about sustainability.”
Abigail Ruhman is KERA’s health reporter. Got a tip? Email Abigail at aruhman@kera.org.
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