The System Wasn’t Built for Marcus
How four disconnected systems collide at the moment families need them most
By Drew Walker, Executive Director
Originally published on Medium: https://medium.com/@dwalk36/the-system-wasnt-built-for-marcus-b70564c7ed4e
Meet Marcus.
Marcus is seventeen years old, lives in East Baton Rouge Parish, and has been navigating the autism services system since he was four. He is bright, specific, and funny in the way that kids with detailed inner worlds are funny — he knows more about weather systems than most meteorologists and will tell you so.
He is also two years from aging out of the only support system he has ever known. And his parents are terrified.
His family spent fourteen months waiting for his diagnosis. That was thirteen years ago. They have been navigating ever since — finding therapists, fighting for IEP services, managing the sensory needs that make community engagement difficult, and doing the coordination work that no system will do for them. Marcus's teacher has never spoken to his behavioral therapist. His therapist doesn't know what happens at school. His pediatrician knows neither.
At twenty-one, Marcus ages out of special education. The Individualized Education Plan that has structured his life for thirteen years disappears. The school-based supports end. And the adult service system that is supposed to pick up where school leaves off — Medicaid waiver programs, supported employment, independent living resources — has a waiting list that currently stretches years.
His parents lie awake asking the question that follows every family in their situation like a shadow: What happens to him when we can't do this anymore?
Marcus is not an exceptional case. Marcus is the norm. I hear stories and worries like this everyday.
I call it the Silo Tax — the invisible burden families pay when the systems that should support them refuse to connect. Marcus's family has been paying it for thirteen years, across four different systems, in four compounding ways. And at seventeen, with the edge of the cliff in sight, every one of those systems is failing him simultaneously.
Healthcare. Marcus's story starts here, thirteen years ago, with a fourteen-month diagnostic wait. That delay is still reverberating. The research is clear: earlier identification produces better outcomes. But in the Capital Area, the pathway from "a parent notices something" to "a child receives a diagnosis" still runs through a small number of specialists, a managed care system that requires prior authorization for every therapy visit, and a primary care community that often lacks the training to catch autism early. The system produced a diagnosis for Marcus's family — and then largely stepped back, leaving them to figure out what came next.
Now, at seventeen, the healthcare failure looks different but cuts just as deep. Marcus's transition to adult medical care is happening at the same time as every other transition in his life. There is likely no coordinated handoff. There is no adult autism clinic in Baton Rouge. There is a family, on their own, starting over again.
Healthcare operating in isolation means the system sees Marcus's appointments. It has never seen his life.
Education. Marcus has an IEP. It has goals. Some of them, on paper at least, address employment and independent living — the transition planning that IDEA requires schools to conduct. But transition planning and actual transition are not the same thing. The connection between what his IEP says and what exists for him on the other side of his twenty-first birthday is largely theoretical.
In East Baton Rouge Parish, 30 percent of students with disabilities who exit special education drop out before they finish. Nearly triple the state average. In Ascension Parish, just next door, that number is under five percent. Same state, same laws, but dramatically different outcomes. Marcus is in the age group where that statistic is being made right now.
What transition planning exists for Marcus connects to nothing. There is no formal handoff between his IEP team and the adult waiver system he will need. No one from OCDD has met with his family as part of the transition process. The school's legal obligation ends on his twenty-first birthday. What comes next is, legally, someone else's problem. In practice, it becomes the family's.
Education operating in isolation means thirteen years of support with no bridge to what follows.
Housing. This is the pillar no one talks about in autism policy, and it is the one that shapes everything else. Marcus's family has spent years managing sensory challenges that make standard apartment living actively difficult — the noise, the lighting, the unpredictability of shared walls and neighbors. They have stayed in a home that does not fully work for Marcus because the alternatives are worse. There are no housing options in Baton Rouge specifically designed for neurodivergent individuals and their families.
But at seventeen, the housing question has become more urgent and more painful. Marcus's parents are asking where he will live as an adult. The supported living options available through the Medicaid waiver system — Host Home arrangements, Shared Living, Supported Independent Living — are exactly what Marcus needs. They are also chronically underfunded, in desperately short supply, and accessed through the same waiting lists his family is already trying to navigate.
Baton Rouge is in the middle of a significant housing development and redevelopment period. The decisions being made right now about design, location, and affordability will shape this community for the next fifty years. The question of whether neurodivergent adults will have places to live is rarely part of that conversation. It should be.
Housing operating in isolation means Marcus's family is planning his adult life without any of the infrastructure they need to plan it.
Employment. At seventeen, employment is no longer a future concern. It is an immediate one. Eighty percent of autistic adults are unemployed or underemployed nationally — not because they lack skills, but because the infrastructure to connect capable people to willing employers does not exist. The Capital Area is home to LSU, state government, major healthcare systems, and one of the largest petrochemical industries in the country. These are employers who say they want diverse, skilled workforces. Neurodivergent adults are that workforce. The connection is not being made.
Marcus has skills. He has interests. He has the capacity to contribute meaningfully to an employer who knows how to work with him. What he does not have is a pathway from here to there. His transition plan has an employment goal. There are few employers ready to receive him. There is no job coach funded to place him. There is no system connecting what school taught him to what work requires.
Employment operating in isolation means potential that will most likely go unrealized — not because of Marcus, but because of the infrastructure that does not yet exist around him.
Here is what I want you to notice about Marcus's story.
None of these four failures is unrelated to the others. The diagnostic delay shaped everything that followed in the school system. The school's isolation from his medical team shaped the support he received. The housing constraints shaped his daily experience, which shaped his behavioral needs, which shaped what the school could manage. The absence of employment pathways waiting for him shapes what his entire education has been preparing him for.
The Silo Tax compounds. At seventeen, Marcus is not experiencing these failures one at a time. He is experiencing all of them at once, at the exact moment when the decisions being made will determine the shape of his adult life.
This is why Capital Area Autism Network is not building four separate programs for four separate problems. Ten years ago, a study commissioned right here in Baton Rouge said this community needed an organization to connect these systems. We are that organization. We are building the connective infrastructure that makes healthcare, education, housing, and employment work together — because they never will on their own. They were built in separate offices, by separate agencies, with separate funding streams and separate performance metrics. Nobody is accountable for Marcus's life as a whole. Everybody is accountable for their slice of it.
We are building the organization that sees the whole.
The data tells us exactly where this community stands. There are approximately 1,882 autistic students in Capital Area public schools right now. Many of them are Marcus. The Medicaid waiver system that is supposed to support them as adults is underfunded by an estimated $165 million annually across Louisiana — a gap so large it drives one in three direct care workers out of the field every year. The wait for adult disability services stretches years. And the diagnostic wait that started Marcus's story — more than a year in the Capital Area — means families are still beginning this journey the same way his began, thirteen years later.
These are not abstract policy failures. They are the dimensions of Marcus's life, right now, in East Baton Rouge Parish.
In the coming months, CAAN will publish the first State of Neurodiversity report for the Capital Area — a comprehensive look at where each of these four systems stands, what's working, and what isn't. We will convene our inaugural provider summit on September 30th, bringing healthcare providers, educators, employers, and housing advocates into the same room to begin building the relationships that coordination requires.
If you're a family navigating this system right now — or if you know one — we want to hear from you. Your experience is the evidence that changes policy.
Marcus deserves a community that sees his whole story. So does every family paying the Silo Tax in silence.