Capital Area Autism Network

Reminder: Moving Forward is TOMORROW!

If you or someone you love faces barriers to transportation, this workshop is for you. Join us Tuesday, May 5 from 5:30–7:30 PM as transportation vendors from CATS and Uber share real options for getting to medical appointments, work, school, and community events — designed with neurodivergent individuals and families in mind. We also want to hear about your experiences and how transportation in the Capital Area can be improved

In Person: 2041 Silverside Drive, Baton Rouge, LA 70808
Virtually on Microsoft Teams

Can't make it in person? Tune in from home — both options are available!

Register now: https://shorturl.at/W5MCX

Congrats to the next class of students at Community LSU, BRCC's Program for Successful Employment, and across the state!

In the Capital Area, the waiting list for a comprehensive developmental evaluation is measured in months, not weeks. For many families, it stretches past a year.

The window for early intervention closes around age five.

Parents are doing that math. And they are doing it alone, without a system that was designed to help them.

In this week's NeuroPulse, Drew introduces Rachel, a composite parent who knew something was different about her son Eli at eighteen months, spent fourteen months on a waiting list to confirm it, and then discovered that a formal diagnosis opens almost no doors automatically. The clinical system and the educational system do not communicate. The referral to the school district has to come from the family. The bridge has to be built by the parent.

This is where the Silo Tax begins. Before the IEP. Before the transition cliff. Before the waiting list for adult services.

Read the full article: https://shorturl.at/8J2ny

If you are navigating the diagnostic process right now in the Capital Area, CAAN wants to hear from you. Your experience is the evidence that changes how this system is built. Reach out at [email protected].

Before the Diagnosis — Capital Area Autism Network The window for early intervention is closing. The waiting list is eighteen months long.

Mobility = access to everything else.

Join CAAN on May 5th for Moving Forward — a free transportation workshop for neurodivergent individuals and families. Learn what options exist in Baton Rouge, how to access them, and how they can help you get to work, appointments, and community.

OLOL Community Impact Center , 2041 Silverside Dr., Baton Rouge, LA 70808 | 5:30–7:30 PM | In-person & virtual
Register free: https://shorturl.at/4akex

Tag someone who needs to see this. ⬇️

We're excited to partner with Baton Rouge Area Youth Network again to highlight the needs of neurodivergent students and help out of school time programs build inclusive offerings!

How do we create programs where all youth can fully participate and thrive?

Join BRAYN on April 17 for
Building Foundations for Inclusive Youth Programs

Designed for staff working directly with youth, this session will provide:

Practical strategies to support neurodiverse youth
Trauma-informed approaches
Tools to create inclusive environments

If your team works directly with youth, this session will give them tools they can use immediately. Consider attending as a team.

Register Today: https://www.eventbrite.com/e/1987082292628?aff=oddtdtcreator

There are approximately 1,882 autistic students in Capital Area public schools right now. When they age into adulthood, the system that is supposed to support them — home and community-based services, supported employment, independent living — depends almost entirely on a workforce that Louisiana pays a median of $11.48 an hour.

One in three of those workers leaves every year.

In this week's NeuroPulse, Drew introduces Camille — a composite Direct Support Professional who is exceptional at her job and doing the math every month. The math has stopped working.

This is the story behind the waiting list. It's the part of the Silo Tax that families don't always see — and it's the part our community needs to understand before we can fix it.

Read the full article: https://shorturl.at/LAstE

If you work in direct support or provider services in the Capital Area, CAAN wants to hear from you.

The Provider Summit on September 30 is being built for people like Camille. Reach out at [email protected].

April is Autism Acceptance Month.

Not Awareness Month — Acceptance Month. And there's a difference that matters.

Awareness means knowing autism exists. Acceptance means actually building a community where autistic adults can live, work, and participate fully.

Baton Rouge is good at the first one. We're still working on the second.

In our latest NeuroPulse, we introduce Jordan — a 26-year-old who aged out of the school system five years ago, has been on the NOW waiver waiting list for four years, and is figuring it out largely on his own. He's employed. He's capable. The system still failed him.

Jordan is what happens after Marcus. And he deserves a community that was built with him in mind.

Read Issue 3 at the link below. And if you're an autistic adult in the Capital Area — or if you know one — we want to hear from you. Your experience is what shapes what we build.

👉 https://shorturl.at/8stxe

Quick explainer on what CAAN actually is, because ‘backbone organization’ is not a phrase most people have heard before.

A backbone organization doesn’t provide therapy. It doesn’t run a school. It doesn’t build housing.

What it does: it gets the people who provide therapy, run schools, and build housing in the same room. It builds the shared language, the referral pathways, and the coordination infrastructure that makes every other service more effective.

We are the connective tissue. Think of us as the organization responsible for Marcus’s whole story — not just one chapter of it. (If you missed our last NeuroPulse, Marcus is a 17-year-old in East Baton Rouge Parish whose story illustrates what happens when four systems fail the same family simultaneously. Link here: https://shorturl.at/9fXQB )

Families raising a child with autism in the Capital Area do something most people never have to do. They become the project manager of their child's care.

They coordinate between the pediatrician who made the diagnosis, the school that runs the IEP, the therapists who provide services, and the state agencies that control what support is available as an adult.

None of those systems talk to each other.

The family carries the weight of connecting them.

We call this the Silo Tax.

Capital Area Autism Network exists to fix the systems side of this equation. Not another therapy provider — the organization that gets all those systems in the same room. We’re doing that work right now. And later this year, we’re publishing the data that shows exactly where things stand.

The latest blog from our Executive Director is about Marcus — a seventeen-year-old in East Baton Rouge who has been navigating the autism system since he was four. In two years, he ages out of special education. And the cliff on the other side is real.

His family has been doing everything right. Fighting for the IEP. Managing the sensory needs. Coordinating the therapists, the school, the doctors — all of whom have never spoken to each other.

This is the Silo Tax. It’s what families in our community pay every single day when the systems that should work together don’t. And it compounds — across healthcare, education, housing, and employment — until families are facing all of it at once, right at the moment they can least afford to.

If you know a family like Marcus’s — or if you ARE that family — this is for you. And if you work in one of these systems and want to be part of changing it, we want to hear from you.

Read the full piece here ➡️

The System Wasn’t Built for Marcus How four disconnected systems collide at the moment families need them most

Have you ever felt like coordinating your child's care is a full-time job?

You're not imagining it.

Our Executive Director Drew just published a powerful piece about what he calls the "Silo Tax" — the invisible burden families pay when the school, therapists, and doctors don't talk to each other.

Here's what it looks like for Baton Rouge families:
📋 Spending hours getting your child's IEP team, private therapist, and pediatrician on the same page
🚗 Taking time off work to physically drive evaluation reports between offices because systems don't share records
📞 Playing telephone between providers who should be coordinating directly

If you're spending 10+ hours a month on care coordination (and many of you spend way more), that's 120 hours a year — three full work weeks.

Drew wrote about why this happens in Baton Rouge, what it's really costing families, and what we're building to fix it.

The article also talks about House Bill 352 — a well-intentioned bill that could accidentally eliminate behavioral support for kids in EBR schools because of provider shortages.

Read the full article: https://shorturl.at/bBvkh

💬 We want to hear from you: What does the Silo Tax look like in your family? What would make the biggest difference?

Your experiences guide the work we do.

The Silo Tax: When Well-Meaning Policies Fail Neurodivergent Families Last week, a mother emailed me in a panic. House Bill 352, filed for the Louisiana legislative session, could eliminate her son’s…