The Silo Tax: When Well-Meaning Policies Fail Neurodivergent Families

By Drew Walker, Executive Director

Originally published on Medium: https://medium.com/@dwalk36/the-silo-tax-when-well-meaning-policies-fail-neurodivergent-families-27a7f23bb23b

Last week, a mother emailed me in a panic. House Bill 352, filed for the Louisiana legislative session, could eliminate her son's behavioral support at school.

Not because the bill is bad — it actually aims to improve outcomes by requiring board-certified behavior analysts to supervise behavior technicians in schools. But there's a catch: the supervision must be in-person, not virtual.

In Baton Rouge, where families already wait months to find a BCBA, this requirement could mean no services at all.

House Bill 352 isn't a bad bill. It's a well-intentioned effort to raise quality standards. But it perfectly illustrates what can happen when systems operate in silos — when policymakers don't coordinate with providers, providers don't coordinate with schools, and nobody asks families what they actually need.

This is what I call the Silo Tax: the invisible burden families pay when systems won't talk to each other.

What the Silo Tax Looks Like

Let me show you what I mean.

A mother spends six hours over three days getting her son's IEP team, his private occupational therapist, and his pediatrician on the same page about sensory strategies. Not because any of them are difficult — they're all excellent professionals. But because none of them will call each other. She's the only thread connecting them.

A father takes a full day off work to drive to three different offices picking up evaluation reports. The school needs the developmental pediatrician's assessment. The pediatrician needs the school's educational evaluation. The private therapist needs both. But the systems don't share records electronically, so he becomes a courier service.

A grandmother becomes a full-time care coordinator, managing a color-coded spreadsheet of appointments, juggling phone calls during business hours, translating medical jargon between professionals who should be talking directly. She's 67 years old and this has become her second career.

This is the Silo Tax. And families pay it every single day.

The Real Cost

Let's put numbers to it. If coordinating care takes an average family 10 hours per month — and many spend far more — that's 120 hours per year. That's three full work weeks spent doing administrative work that shouldn't be theirs.

For working parents, that means using sick days and vacation time for phone calls during business hours. For single parents, it's choosing between coordination and income. For families already stretched thin financially and emotionally, it's one more impossible demand in a system that asks too much.

And that's just the time cost.

There's the opportunity cost of gaps in care because information didn't transfer. The financial cost of duplicated assessments because records didn't follow the child. The educational cost when the teacher doesn't know what the therapist is working on and accidentally undermines it. The emotional cost of feeling like you're failing when really, the system is failing you.

The Silo Tax isn't just inconvenient. For many families in Baton Rouge, it's the difference between their child thriving and their child falling through the cracks.

Why Baton Rouge Struggles

We're not unique. Fragmented care is a national problem. But in Baton Rouge specifically, we have a perfect storm: multiple health systems (Ochsner, Our Lady of the Lake, Baton Rouge General) with incompatible electronic record systems; school-based services operating under EBR Parish Schools with their own separate documentation universe; excellent private therapy practices, each operating independently with their own charting; and a critical shortage of autism-specialized providers, meaning families often work with a patchwork of professionals across different specialties rather than integrated teams.

Let me be clear: our providers aren't failing. The school paraprofessionals and behavior technicians are skilled. The therapists are dedicated. The doctors are knowledgeable. They're doing their best within systems that weren't designed to work together.

The problem isn't the people. It's the silos.

What Coordination Could Actually Look Like

This keeps me up at night. It's why I do this work.

I want the school counselor and social worker and the BCBA and the pediatrician in the same room, building relationships so they can coordinate without a family as the middleman.

I want shared understanding: the therapist knows what the teacher sees, the doctor understands what happens at school, everyone grasps the full picture instead of their tiny slice of it.

I want tools that make coordination easier: shared templates, common language, simple protocols for communication that don't require a parent playing telephone.

Most of all, I want families to stop being project managers for their child's care. That should be the system's job.

This won't happen overnight. Systems-level change takes time. But it has to start somewhere. And here's what I know: every provider I talk to wants this too. They're frustrated by the silos. They wish they could coordinate better. They just need a structure that makes it possible.

That's what the Capital Area Autism Network is building — not another service, but the infrastructure for coordination. Convenings where providers meet each other. Relationships that make it easier to pick up the phone. Shared frameworks that create common ground.

Because fragmented care isn't inevitable. It's a design flaw we can fix.

Join Us

If you're a provider in the Baton Rouge area: Get in touch. We're hosting our inaugural Provider Summit this fall, and I want you there. Come ready to build relationships with colleagues across disciplines. Tell us what makes coordination hard and what would make it easier. This only works if we're all at the table.

If you're a family: Tell us about your coordination challenges. What information falls through the cracks? What would make the biggest difference? Your experience guides what we build. Email me directly or leave a comment here.

If you're a policymaker or system leader: Before you file the next bill with good intentions, ask: Did I talk to the people who will implement this? Did I ask families what they actually need? What unintended barriers am I creating? Sometimes the difference between helpful policy and harmful policy is just asking the right people first.

The Silo Tax isn't inevitable. It's a design flaw we can fix.

But we have to fix it together.