If you love someone with profound autism, you already know the wait. New data from KFF shows that in 2026, people on waiting lists for Medicaid home and community-based services (HCBS) waited an average of nearly three years. For many families, it is far longer. In states like Texas, some families report waiting 15 years or more.
Behind every one of those months is a person with profound autism, and a family working around the clock to keep them safe. Family members who have built their whole lives around care. Siblings who have quietly become the backup plan. For someone with non-transient high support needs, a wait like this is not a delay. It is years without the basic care a person needs to stay safe, healthy, connected, and alive.
KFF surveyed state Medicaid officials and released its findings on October 5. HCBS pays for support at home and in the community, such as personal care, day programs, and residential support. Much of it comes through waivers, which let states cap how many people they serve. Key numbers include:
Behind those national numbers are states where the lists run long. According to KFF's 2025 state data, 181,697 people are waiting across all of Texas's lists. In Florida, 22,621 people are waiting on the list for people with I/DD. In Illinois, it is 16,500. Together, these three states are home to about one in five Americans.
Some states report no waiting list at all. That does not mean families there get help right away. Some states limit who qualifies or cap the hours people receive. In others, families hold a waiver slot but cannot find staff who can safely provide care. A slot on paper is not care in the home.
Profound autism is also invisible in this data. States report waiting lists by broad disability category, so no one knows how many people with profound autism are waiting.
KFF suggests waiting lists may overstate need because some families sign up young children years in advance. For families of people with profound autism, early enrollment reflects reality. Non-transient high support needs are often clear in early childhood. When the wait runs years, signing up early is exactly what the system asks of families.
Of people on waiting lists whose living situation is known, 95% live in the community. For most people with profound autism, that means home, with family caregivers who provide care around the clock, often for decades. They are nurse, behavior specialist, advocate, and scheduler, usually all at once and usually unpaid. Many go years without a full night's sleep. Families caring for a loved one with Alzheimer's or at the end of life know this kind of round-the-clock care. The difference is time. For families of people with profound autism, it often begins in early childhood and continues across the entire lifespan. Many families fill the gap with extraordinary love. But love is not a plan.
For people with profound autism, gaps in care are not an inconvenience. They can be dangerous.
Wandering can end in drowning or a traffic injury within minutes. Life-threatening pica, eating non-food items, can lead to choking, poisoning, or bowel obstructions that require emergency surgery. Seizures are common in profound autism and can be fatal without someone nearby who knows how to respond.
Intense behaviors, including self-injury and aggression, put the person and those around them at risk. They also narrow who is willing to provide care and who has the training to do it well. Too often, they mean exclusion from community activities, and from the places and people that make a life full.
Meanwhile, many family caregivers providing 24/7 care are aging. A caregiver's health rarely fails all at once. It declines over years, as every task gets harder and every day carries more worry. That is stressful for everyone, especially the person who depends on that care. Worlds become smaller and smaller. The question so many caregivers carry is always the same. What happens when I can't do this anymore?
The One Big Beautiful Bill Act, the 2025 federal reconciliation law, is estimated to cut federal Medicaid funding by $911 billion over the next decade. Most HCBS is optional for states, which puts waiver programs at risk as states look for savings.
Cutting HCBS is a false economy. When families can't get help, the costs don't disappear. They shift to emergency rooms, where people with profound autism can be stuck for days or weeks because there is nowhere else for them to go. They shift to family caregivers who leave the workforce to provide care. And they fall hardest on the person with profound autism, whose health and safety are at stake.
When resources shrink, people with non-transient, non-intermittent high support needs are too often left behind. Their care is complex, staffing is hard, and their families are already stretched. With consistent, skilled support, people with profound autism can stay safe and healthy, stay connected to the people who love them, and be treated with dignity and respect. Without it, the consequences can be fatal.
PAA is calling for a funded Medicaid HCBS waiver dedicated to people with profound autism, so they are prioritized instead of left waiting. It should use the Delphi consensus definition published in Molecular Autism in 2026, which includes IQ below 50 as a qualifying pathway alongside minimal verbal communication. Many states already require a documented intellectual disability for waiver services, so this definition works with the rules states use today.
There is precedent. In 1981, the Reagan administration acted quickly so Katie Beckett could receive care at home, and Congress later made that option law. That same urgency is needed now.
PAA is calling on federal and state policymakers to:
Many families have signed up early, waited for years, and kept caring. Health, connection, and dignity for people with profound autism should not depend on a waiting list, and no family should wait years for help their loved one needed from the start.
Decisions about HCBS are being made in state capitols, and lawmakers need to hear from families. Join the Profound Autism Advocacy Network, and we'll send you alerts when HCBS is at risk in your state, with simple steps to make your voice heard.
Sign up for the Profound Autism Advocacy Network today.
A Look at Waiting Lists for Medicaid Home- and Community-Based Services from 2016 to 2026, KFF, October 5, 2026
Number of People Waiting for Medicaid Home Care (HCBS), by Target Population, KFF State Health Facts, 2025
U.S. Census Bureau, Vintage 2024 Population Estimates
Advocates, lawmakers want to fix long waits Texans with disabilities face for Medicaid services, KERA News, May 6, 2026
One Big Beautiful Bill Act (H.R. 1, 2025)
Siegel M, Lord C, Tager-Flusberg H, et al. "Delphi consensus definition of profound autism." Molecular Autism, 2026
Profound Autism Alliance, Public Comment on the IACC Working Draft Strategic Plan 2026–2028, August 20, 2026