Why the Waiting List Grows
The person who makes community living possible is doing the math. The math isn't working.
By Drew Walker, Executive Director
Originally published on Medium: https://medium.com/@dwalk36/why-the-waiting-list-grows-cc91d4675a88
Meet Camille.
Camille has been a Direct Support Professional for four years. She works with three adults with intellectual and developmental disabilities in the Greater Baton Rouge area — helping them navigate daily life, manage routines, get to medical appointments, stay connected to their communities. She knows how Marcus takes his coffee. She knows which grocery store aisle triggers a sensory response and which one doesn't. She knows that Tuesday afternoons are hard and Wednesday mornings are better, and she has learned, over four years, exactly how to help someone move through a hard Tuesday into a better Wednesday.
Her clients trust her. Their families trust her. The agency she works for trusts her. She is, by every measure that matters, exceptional at her job.
She is also doing the math. And the math has stopped working.
Camille earns $12.50 an hour. She worked her way up from $10.75 over four years — a raise that required two conversations with her supervisor and a formal review process. She works close to full time, picks up shifts when she can, and still ends most months closer to empty than she would like.
Her car payment is $280. Her car is not optional — her clients live across three different zip codes, and public transit doesn't reach two of them. Gas is a line item she watches every week. Her daughter's after-school program costs $180 a month. She has looked, more than once, at what Amazon is paying at the Baton Rouge fulfillment center. The answer is $15.50 an hour to start, with benefits, for work that does not require her to be emotionally present for someone else's hardest moments.
She has not applied yet. But she has looked.
Camille is not a statistic. But she is inside one.
The Louisiana Department of Health recently commissioned an independent actuarial study of what it actually costs to run the state's Medicaid home and community-based services system adequately. The study — the most detailed accounting of this workforce ever produced in Louisiana — documents that the median wage for frontline workers like Camille is $11.48 an hour. It documents that one in three Direct Support Professionals leaves their organization every year. And it identifies a gap of $165 million annually between what Louisiana currently pays and what adequate services actually cost to deliver.
That gap is not an abstraction. It is the difference between Camille staying and Camille leaving. It is the difference between three people with disabilities receiving the support that makes community living possible and those same three people going on a waiting list that, in Louisiana, can stretch for years.
This is what I call the Silo Tax. I have written in previous issues about the tax that families pay — the 120 hours a year of unpaid coordination labor that falls on parents and grandparents because systems will not connect. I have written about Marcus, seventeen years old and watching the transition cliff approach, and about Jordan, twenty-six and still waiting for the NOW waiver services his IEP said were coming.
Camille is why Jordan is still waiting. Not because of any failure on her part — because of a system that has never treated her work as the public health investment it actually is.
Here is what Camille's job requires. She provides what the Medicaid system calls home and community-based services — the supports that allow adults with intellectual and developmental disabilities to live in their own communities rather than institutions. She helps with personal care. She supports community engagement. She monitors health and safety. She builds the kind of relationship-based trust that no algorithm can replicate and no new hire can inherit quickly.
When Camille leaves — if she leaves — her three clients do not get a seamless replacement. They get a new person who does not know them. Who does not know about Tuesday afternoons. Who will need months to build what Camille built over four years, if they build it at all. In the meantime, her clients absorb the disruption. Their families absorb it. The agency absorbs the cost of recruiting and training someone new, which the rate study estimates consumes a significant share of every DSP position that turns over.
Thirty-five percent of DSPs leave every year. That means the system is not merely understaffed — it is running on a treadmill, pouring resources into replacement and training just to maintain current service levels. The people who stay, like Camille, carry an increasingly heavy load. The people who leave take irreplaceable knowledge with them.
This is the Provider Sustainability Tax — the second layer of the Silo Tax, largely invisible to the families paying the first. Families see the waiting list. They do not always see the workforce crisis that produces it.
I want to be precise about something, because it matters for how we solve this.
Camille is not considering leaving because she does not love this work. She does. She chose it deliberately, has stayed in it for four years, and describes what she does with the kind of specificity that only comes from genuine investment. She is considering leaving because the system that employs her has never been funded at a level that treats her work as the essential service it is.
Direct support is not unskilled labor. It requires behavioral knowledge, medical awareness, communication expertise, and the kind of emotional intelligence that cannot be easily taught or quickly replaced. It is labor that literally makes the difference between a person living in their community and a person living in an institution. And it is compensated at wages that compete, poorly, with warehouse work.
This is a design failure. Camille did not create it. The providers who employ her did not create it. The families who depend on her did not create it. It was built, over decades, by a funding system that has never fully accounted for what this work actually costs.
On September 30, the Capital Area Autism Network will convene the first Provider Summit in Baton Rouge — bringing together the healthcare providers, educators, employers, housing advocates, and direct support professionals who are navigating this system every day, largely without knowing what the person in the next sector is dealing with.
Camille belongs at that table. So does every agency director who cannot fill open positions. So does every support coordinator trying to manage a caseload of thirty-eight people on a monthly rate designed for a fraction of that complexity. The workforce crisis is not separate from the coordination problem. It is one of the coordination problem's most important causes.
Keeping Camille in this work is not a labor issue. It is a public health issue. It is a housing issue. It is the reason Jordan's waiting list is as long as it is.
The State of Neurodiversity Report, publishing October 1, will document what it actually costs to close this gap in Louisiana — and what it costs when we don't.
Camille is still doing the math. So are we.