Four locks on every door. A lockbox on every sink. Flooring being replaced. Insurance may pay for therapy, but it will not pay for the lock on the door, or the fence around the pool or the yard. That is not an oversight. That is the law in 48 states.
Who this is about
Most people hear autism and picture one stereotype. This episode is about a smaller, higher need group of kids and adults whose behaviors put them, someone else, or the house they live in, in physical danger. I count it the way I would in an intake:
- Aggression
- Self-injury
- Elopement: wandering, bolting, whatever word your family uses
- Property destruction serious enough to damage the home: flooding, holes in drywall, doors off their hinges
A 2017 study out of Columbia's Mailman School of Public Health found autistic kids faced roughly 160 times the drowning risk of the general pediatric population. Roughly half of autistic kids attempt to wander or bolt from a safe setting at some point, and the National Autism Association found 91% of the wandering deaths it tracked in 2024 were drowning.
Meet Noel Shannon
Noel Shannon is a parent and public advocate who posts under her own name on purpose. She is in year two of a Medicaid appeal for her six year old son, who is nonverbal. By her own public account, she needs six strong adults to hold him still for basic medication in a hospital setting. She has a lockbox on every water source because he flooded the house. Her son's name and image are not shared.
A right without a wallet
Closing institutions like Willowbrook was the right call, morally, not just legally. My argument is narrower: closing them was the right move that got half executed. In 1999, Olmstead v. L.C. held that unjustified institutionalization violates the Americans with Disabilities Act.
The Supreme Court gave families the right to bring their kids home. It never told anyone who pays to make that home safe.
Home and community based waiver services are not an entitlement the way institutional Medicaid is, and a cap on enrollment produces a waiting list. KFF reported 41 states keep HCBS waiting or interest lists, and people on autism designated waivers wait an average of 63 months. A five year old who elopes into traffic does not get to wait five years for a fence.
What gets funded, and what does not
48 states plus DC have autism insurance mandates. They were built around a medical necessity model: a diagnosis, a physician's order, a licensed provider. That model works fine for a therapy session. It was never designed to ask whether a family's house itself needs to change to keep a kid alive.
A 2024 policy analysis in the American Journal of Occupational Therapy read 107 Medicaid HCBS waivers for people with intellectual and developmental disabilities, line by line. Fencing appeared in only 8.66% of state service definitions. Flooring showed up in 9.45%. Emergency devices that alert a parent the second a kid is out the door appeared in 15.75%.
Tracking devices: who pays?
The device that tracks Noel's son is an ankle monitor from her local sheriff's department. No insurance plan or Medicaid waiver paid for it. Programs like Project Lifesaver are law enforcement and charitable programs, not insurance benefits, so even the rare family that has a tracking option usually has it by local accident and not by right.
Saylor Hayes: an open case
In the episode I walk through a case that was unfolding in the news as I recorded. Saylor Hayes was a five year old from the Bristol area of Washington County, Virginia. Arrest affidavits describe her as severely nonverbal autistic with a history of elopement and a known pull toward water. Since June 2024 she had been enrolled in Project Lifesaver through the Washington County Sheriff's Office. On August 31, South Carolina DNR recovered her body in the water near Hagley Landing on the Waccamaw River. The cause and manner of death were listed as undetermined pending the final report. I am not going to say she drowned, because that has not been established.
During the search, her frequency could not be picked up in South Carolina. Washington County found the transmitter inside a vehicle at the family home in Virginia. Her parents were charged with unlawfully placing a child at risk or willfully abandoning a child. What the arrest warrant alleges, and I mean alleges, is that the parents knew she did not have the transmitter with her. Those are claims, not proof. Her parents are presumed innocent unless and until a court says otherwise.
Status since recording, from the video description: as of mid October 2026, the parents are in Georgetown County custody, bond denied, next appearance November 19. Cause and manner of death are still undetermined pending the final autopsy.
Why I told you this: this family had a real device, worn and working for over a year, and something still went catastrophically wrong. A tracking device existing is not the same thing as being on your kid in the moment it matters.
When the failure becomes the parent's fault
The same system that never funded the fence can turn around and ask why there was not one. We already ran this experiment. It was called the refrigerator mother, and it took a parent, Bernard Rimland, to say the child's brain is not a verdict on the parent. There is a word for the modern version: responsibilization, where the system hands a family a duty it will not resource, then treats the outcome as a character flaw.
What would close the gap
This is not an argument for more ABA hours. It is a call for the same seriousness we already give therapy, applied to the fence, the flooring, the alarms, and the person who needs a night off.
- Call your waiver office and ask: does my 1915(c) waiver include environmental modifications, does that include more than ramps and grab bars, and what is the cap?
- Ask by name about environmental modifications and respite services.
- Get on the waiver waitlist and fill out the paperwork, even if you are not sure you will need it.
Next step
Want one table instead of six separate plans?
If your family is carrying the safety plan, the paperwork and the night shifts alone, that is exactly the gap we built the table for. A care mapping call is where we look at the whole picture together.
Book a family care mapping call Agency leaders: book an agency callAshleigh Dominguez, MS, BCBA, is licensed in North Carolina, Georgia, and Iowa. This article is general education based on the episode. It is not clinical, legal, or treatment advice for your child or your state. Corrections and sources are listed in the YouTube description.