What Happens When We’re Gone?
For thousands of autistic adults in Louisiana, the answer is a waiting list. For their aging parents, it’s the question that won’t let them sleep.
By Drew Walker, Executive Director
Originally published on Medium: https://medium.com/@dwalk36/what-happens-when-were-gone-2b29ac8a5056
Linda is 68 years old. She wakes up at 5:47 most mornings, not because she needs to, but because her mind starts before her alarm does.
She’s thinking about her son, Daniel. He’s 38 years old and has lived with her since he aged out of the school system seventeen years ago, in the same bedroom he grew up in, in the same house that Linda and her late husband bought in 1989. Daniel works part-time at a job he loves. He has routines that took years to build and that work, because Linda built them with him. He has a life that functions, within the walls of a home that was never quite designed for it.
Linda doesn’t sleep well because she is doing math that has no good answer.
She is 68. Her husband died four years ago. Her daughter lives in Dallas. Daniel’s NOW waiver — the Medicaid program that would fund supported living services, a pathway to independence, a life outside of this house — has been pending for six years. The waiting list, when she last checked, had not moved in a way that felt meaningful.
She is not asking the system for sympathy. She is asking it for a plan. And the system, so far, has not had one.
The Question That Changes Everything
“What happens to him when I can’t do this anymore?”
At one point or another, some variation of this question arises for every parent. It is the organizing fear of every family in Linda’s situation, the question that sits underneath every other question, that makes the IEP battles and the waiver applications and the therapy scheduling feel both urgent and insufficient, because none of it fully answers the one thing that matters most.
In Louisiana right now, there are thousands of autistic adults living with aging parents. Not because their families failed to plan. Not because they didn’t fight for the right services. Research consistently shows that roughly 87 percent of autistic young adults live with a parent at some point since leaving high school — compared to 21 percent of young adults in the general population. The infrastructure that should have been waiting for them at twenty-one — the supported living options, the community housing, the funded pathways to independence — was not there and still isn’t. And the gap between what was promised and what exists is, for most families, being filled by a person in their sixties or seventies who cannot fill it forever.
This is the housing pillar of the Silo Tax. And it is the one that most quietly destroys families, because it doesn’t announce itself as a policy failure. It announces itself as a mother who can’t sleep.
What Exists — and What Doesn’t
Louisiana’s Medicaid waiver system offers several supported living options for adults with intellectual and developmental disabilities: Host Home arrangements, where an individual lives with a trained host family; Shared Living, where adults with disabilities live together with support; Supported Independent Living, where individuals receive in-home assistance while living in their own space.
These are exactly the options Daniel needs. They are also chronically underfunded, in desperately short supply, and accessed through a waiting list that, for many families, stretches years.
The scale of the wait is staggering. Statewide, more than 14,500 people with intellectual and developmental disabilities are on Louisiana’s Request for Services Registry, waiting for waiver services. OCDD’s own analysis has estimated that funding a waiver slot for every person who needs one would require hundreds of millions of dollars in additional annual appropriations that the state has never committed. The gap is documented. Louisiana’s own actuarial rate study identified a shortfall of $165 million annually between what the system is funded to spend and what adequate services actually cost to deliver.
That funding gap drives direct support wages to a median of $11.48 an hour, which drives 35 percent annual turnover among the direct support workforce, which means there are never enough trained people to staff the programs that should exist. I wrote about Camille — a DSP with four years of irreplaceable knowledge doing the math on whether to stay — in Issue 4. The housing crisis and the workforce crisis are the same crisis, viewed from different angles.
There are no housing developments in Baton Rouge specifically designed for neurodivergent adults. There are no communities built around the sensory, social, and support needs that shape what home needs to mean for someone like Daniel. In fact, the only autism-specific housing in Louisiana was built in Lake Charles — by families who organized it themselves, specifically because no such homes existed anywhere in the state. Baton Rouge has nothing comparable. There is a patchwork of options accessed through a system that was not designed to connect them, and a family, in a house on a street in Baton Rouge, holding it together.
The Development Moment We’re Missing
Baton Rouge is building. With initiatives like the Baton Rouge Area Foundation’s Plan Baton Rouge III focusing on downtown, the new LSU arena, and community investments from the like of Build East Baton Rouge and Mid City Redevelopment Alliance, decisions are being made right now about density, design, location, and accessibility that will shape this city for the next fifty years.
The question of whether neurodivergent adults will have places to live is almost never part of that conversation.
It should be. Consider what already exists for the general population: in Baton Rouge, households seeking a Section 8 housing voucher wait an average of 51 months — more than four years — before receiving assistance. Right now, the East Baton Rouge Parish Housing Authority’s Housing Choice Voucher waitlist is closed entirely, with no scheduled reopening. That is the baseline for general affordable housing. Disability-specific housing designed for sensory needs, with integrated supports, accessible to someone on a Medicaid waiver doesn’t exist in any organized form in this city at all.
Other communities have begun to answer this question. Intentional neighborhoods where autistic and non-autistic adults live alongside each other, with support services integrated into the design rather than bolted on after the fact. Housing that’s built with sensory design principles from the ground up. Community land trusts that hold affordability in place over decades so that supported living options don’t disappear when property values rise.
None of these solutions exist at scale in Louisiana. None are emerging in Baton Rouge in any organized way. Not because the need isn’t there but because housing policy and disability policy and urban planning exist in separate silos, designed and funded and measured independently of each other, and nobody has convened the people in each room to build something together.
This is a solvable problem. It is not being solved.
The Silo Tax, at Its Heaviest
Linda is paying a version of the Silo Tax that I have not fully described in previous issues, because it is the hardest to quantify.
The Family Coordination Tax I wrote about in Issue 1 — the 120 hours a year of unpaid administrative labor — is real and measurable. The Provider Sustainability Tax that keeps Camille doing the math on whether to stay — that one has a dollar figure attached to it. But the cost of being the only housing solution for your adult child, for years past the age when you expected to be, with no succession plan and no infrastructure waiting to catch what you can no longer hold, that cost doesn’t fit on a spreadsheet.
It is Linda at 5:47 in the morning. It is the question that has no answer. It is seventeen years of filling a gap that the system created and left for a family to manage.
She is not exceptional. She is what the data predicts. When 87 percent of autistic young adults leave high school into a family home rather than an independent life, and when the waiting list for services that could change that is measured in years, and when the only autism-specific housing in your state was built by families in another city because nothing else existed — Linda is the inevitable result. Multiply her by the 19,385 students in special education in Capital Area public schools right now. Every one of them is growing up. Most of their families are asking her question.
What CAAN Is Building Toward
The Capital Area Autism Network is not a housing developer. We are not a waiver program. We cannot build the infrastructure that Linda and Daniel need — not directly.
What we can do is convene the people who can. Housing advocates and disability policy experts and urban planners and Medicaid waiver administrators who have never been in the same room. Developers who want to build something different, if someone will show them what different looks like. Policymakers who do not yet understand that Baton Rouge’s development moment is also a disability housing moment — and that the decisions being made right now will determine whether Daniel, and the thousands of people like him, have somewhere to live.
The State of Neurodiversity Report, publishing October 1, will document what the housing gap actually costs this community — in family labor, in foregone independence, in the long-term consequences of a system that was never designed to see the whole person.
The Provider Summit on September 30 will bring the people who need to be in that conversation into the same room.
Linda has been waiting for that conversation for seventeen years.
If You Are Linda
If you are an aging parent asking the question that has no answer — or if you know one — I want to hear from you. Not to offer a solution I don’t yet have. But because your experience is the evidence that changes what gets built.
The housing gap in Baton Rouge will not close by accident. It will close when the people responsible for housing and the people responsible for disability services and the people responsible for urban planning finally stop working in separate silos — and start building something together.
That is what CAAN is working toward. It starts with knowing where you are.
The CAAN Provider Summit is September 30, 2026. The State of Neurodiversity Conference is October 1, 2026. If you work in housing, disability services, urban planning, or Medicaid policy in the Capital Area, we want you at the table. Reach out at drew.walker@caanbr.org.