“Every day families reach out to the National Down Syndrome Society and ask, ‘What state should I live in? Where are the long-term services and supports the best?’”
This matter is personal for Margot Rhondeau, Vice President of Programs at the National Down Syndrome Society (NDSS). Her eight-year-old daughter, Hannah, has Down syndrome, and receives social and medical care via Medicaid home-and community-based services (HCBS) Waivers. The Medicaid waiver application required her family to “list everything that Hannah can’t do,” a traumatic step for families that doesn’t guarantee access to or coverage for needed services. These waivers, also known as 1915(c) waivers, let states provide community-based long-term services and supports (LTSS), including respite care, attendant care, habilitation, assistive tech, and therapies. This helps people with intellectual and developmental disabilities (IDD) remain living in community settings rather than in institutions. The 1915(c) waivers also expand HCBS while helping states manage Medicaid costs.
Health Data for Action Research Findings: Where states cover a service, people use it.
During a 2026 AcademyHealth Annual Research Meeting panel titled, “Make it Make Sense: HCBS Waivers for Adults with IDD”, panelists shared findings from their Health Data for Action study, supported by the Robert Wood Johnson Foundation and the WITH Foundation.* Researchers Elyse Neal, Dr. Priya Chandan, and Dr. Liza Creel, first wanted to examine how states varied in terms of HCBS waiver design, and with that data, subsequently consider 1) the relationship between HCBS service coverage and use of those services and 2) test for the association between use of caregiver supports and utilization of other medical services.
Elyse Neal collected HCBS waiver approval data from 14 states from the years 2019 through 2022. This information, although publicly available, was not easy to access. Some data came via state Medicaid websites and CMS, but Neal also had to inquire via records requests and direct outreach to state Medicaid offices. She found huge state variation in these waivers, from age thresholds (some are considered adults at 18, others at 21), diagnostic criteria, cost limits, wait list size, and enrollment capacity.
Dr. Creel, Dr. Chandan and Neal built on these findings by investigating the association between service coverage and health care utilization, linking the service coverage data with aggregated claims data from T-MSIS TAF provided via their Health Data for Action grant. The team found that where states cover a service, people use it, thus demonstrating the critical nature of HCBS waivers in supporting community living. Similarly, they found that where states covered caregiver supports, people utilized them. Additionally, they found lower emergency department use among those who use caregiver support services, and higher rates of outpatient services among that same group, indicating that when caregivers are better supported care is directed to more appropriate settings (toward outpatient and away from the ED). “While these waivers cost money, they’re leading to outcomes that we want, and may lead to downstream cost savings,” Creel noted.
Lived Experience Informs Implementation Gaps
Along with the claims data, lived experiences are also needed to fully understand the implications of the existence of HCBS waivers. Margot Rhondeau and her 8-year-old daughter Hannah, for example, live in Virginia, and Hannah receives HCBS via Virginia’s CCC Plus Waiver. She’s been a waiver recipient for most of her life, and receives both social services (respite care, attendant care, assistive technology) and medical services (five therapy visits per week, medical coverage, durable medical equipment). But Hannah receiving access to services as quickly as she did is largely attributed to the fact that she had an acute health crisis as an infant, which caused her to bypass often years-long HCBS waiting lists. “My daughter was in the hospital for two months and returned home with a G-tube. Because of her additional medical needs, she qualified for the waiver while many of her peers, infants with Down syndrome, did not.”
Compare this with Dr. Chandan’s 43-year-old brother Ankur, who lives with Down syndrome and was born in Georgia. When he was born, doctors suggested via a voicemail that Chandan’s parents take him to an institution as was typically done in these cases. This suggestion led to her family’s lasting fear, mistrust, and trauma regarding health care decisions. Though HCBS was established in 1981, the Chandans were never guided on how to access services through this system.
Currently, Ankur utilizes SSDI and Medicare coverage. Accessing Medicaid services for a childhood-onset condition as an adult is challenging, given how his age and previous work experience affect his position on waiver wait lists. IDD populations account for 73% of the total HCBS wait list population, and the waits can be months or years depending on the state’s priority categories, urgency of need, and assessment processes. For the Chandans, this means that Ankur will likely not receive Medicaid services and supports until he experiences another health crisis.
Why Medicaid Waiver Design Matters Right Now
The One Big Beautiful Bill Act (OBBBA), signed into law by President Trump in 2025, included massive changes and funding cuts to Medicaid, and thus has major implications for the future of HCBS waivers.
The impact of funding cuts and changes to HCBS waivers will vary wildly depending on the state, but there are three factors that relate to individuals with IDD receiving HCBS: 1) frequent waiver recertification, 2) longer waitlists for services, and 3) inclusion of work requirements.
More broadly, OBBBA-related changes limit state financing tools, including provider taxes and state-directed payments, which could pressure states to cut HCBS, or limit enrollment.
What You Can Do to Advocate for HCBS
- Learn more about Medicaid HCBS
- Use the NDSS Medicaid Advocacy Toolkit to learn more about the Medicaid program, HCBS, and the changes to the program now underway.
- At the state level, ask decision-makers to commit to preserving waiver services, simplifying renewal, reducing waitlists, and ensuring fair pay for attendants.
- Participate when states solicit input
- Watch for waiver renewals or amendments and submit public comments. Cite research regarding how coverage leads to use and caregiver support affects emergency department/outpatient utilization.
- Ask to sit on advisory groups or request formal inclusion of people with IDD and their families in waiver planning.
- Build coalitions and amplify
- Partner with organizations like NDSS, local disability organizations, and cross-disability coalitions to submit joint comments and shared data requests.
As the professional home for health services research, AcademyHealth works to improve health outcomes for everyone by supporting the generation, dissemination, and implementation of cutting-edge evidence by educating and connecting policymakers with the latest research and findings. This includes advocating for data access, robust funding, and the structural support for nonpartisan evidence applications that makes the research enterprise work most effectively.
*Please note that these findings are currently under peer review.
This work is made possible with a grant from the Robert Wood Johnson Foundation (RWJF). The views expressed here do not necessarily reflect the views of RWJF. Funding for this research was also provided by the WITH Foundation, managed by the National Down Syndrome Society and Data Design Lab.