When Caytlin Handley was identified with an intellectual disability as a toddler, her Katy family says no one pulled them aside to explain the Medicaid waiver programs that can fund long-term home care and supports. That silence meant the Handleys waited roughly 17 years for an HCS waiver slot. Instead of just stewing about it, they turned that lost time into a full-on advocacy campaign that helped produce a new state law, commonly dubbed the Caytlin Handley Act, aimed at making sure parents learn about Local Intellectual and Developmental Disability Authorities and public benefits much earlier in a child's school journey.
House Bill 1188, authored by Rep. Christian Manuel and known as the Caytlin Handley Act, was passed by the 89th Legislature and tells schools and state agencies to change how and when they share information. The enrolled bill text shows the law requires districts to provide information about services and 1915(c) waiver programs at a student's first IEP meeting and tasks the Texas Education Agency and the Health and Human Services Commission with creating standardized materials for districts to use. The act takes effect beginning with the 2025–26 school year.
What the law requires
The law amends the Education Code so that at the first individualized education program (IEP) committee meeting where a student is found eligible for special education because of an intellectual disability or a developmental delay, the district must give parents information about the local LIDDA and benefits, including Medicaid 1915(c) waivers. Up to now, that kind of information has often waited until transition planning that begins no later than age 14, a delay advocates say can cost families years of time on interest lists. The bill analysis by the House Research Organization says the change is meant to give families "additional time to choose the best course of action" and to get children on waiver interest lists earlier, and it notes that the bill applies beginning with the 2025–26 school year.
The Handleys' fight
The shift in law started with the Handleys' long slog through Texas' disability system and their eventual partnership with advocacy groups. Carey and Boyd Handley worked with The Arc of Texas to shape the proposal and made repeated trips to Austin to meet with lawmakers. Their daughter Caytlin, now 31, took a seat at the witness table and testified before the House Public Education Committee. "I'm here to represent myself and the Caytlin Handley Act," she told members. The family learned they had finally been approved for the HCS waiver while they were at the Capitol, according to the Houston Chronicle. The Arc of Texas also submitted written and verbal testimony backing the bill.
Long waits remain
Advocates and lawmakers say HB 1188 tackles a serious information gap but does not touch the funding shortages that leave Texans stuck on interest lists for years. As of March 2026, more than 198,000 Texans were on interest lists for Medicaid home and community-based services, and state reports and advocates have said that waits for some IDD waivers can stretch into the teens. Program-level counts and HHSC materials show tens of thousands of people waiting for specific waivers, which is why earlier referrals matter even if the new law does not create a single additional slot. Reporting from KERA and HHSC documents lay out those numbers.
How schools and agencies will act
Under HB 1188, the Texas Education Agency and HHSC must team up to develop and distribute standard informational materials that districts can hand to families at initial IEP or ARD meetings. The act applies beginning with the 2025–26 school year, so districts were expected to fold the requirement into their initial IEP processes for students identified this year. TEA committee notes show the agency has discussed implementation details with stakeholders as the law came online. For the full statutory language, see the bill text on Texas Legislature Online.
What the law doesn't change
Supporters are quick to point out that HB 1188 does not add waiver slots or directly shorten waitlists. The goal is narrower and more basic: close an information gap so families know earlier that waiver programs and local IDD authorities exist and can get on interest lists as soon as possible. Disability advocacy organizations have praised the change but are still pushing for more money and broader policy fixes that would move people from interest lists into actual services. The Texas Council for Developmental Disabilities and The Arc of Texas supported the bill and continue to advocate for slot releases and wider system reforms, and both groups provided testimony and materials as the bill moved through the Legislature.
For the Handleys, the law is a hard-won correction that does not erase nearly two decades of waiting but might spare other families from the same long limbo. "It was about helping the next family," Carey Handley said. Families and advocates say that if HB 1188 does its job, earlier referrals and clearer information will change how many Texans navigate what can feel like a marathon path to services. The Houston Chronicle has a deeper look at the family's yearslong effort.
