STL Advocate

10/19/2025

I can't recommend this highly enough. Life changing course and it more than pays for the time investment with invaluable skills and knowledge. DM me with any questions.

We are now accepting applications for Missouri's 2026 Partners in Policymaking program.

Program topics include:
⭐History of Disability Movements: Parent, People First, Independent Living
⭐Quality Education
⭐Employment
⭐Housing and Person Centered Planning
⭐Positive Behavior Supports
⭐Parliamentary Procedure: How to Take Control of Meetings
State/Federal Policy and Legislative Issues and the Process by Which You Can Channel Your Concerns
⭐Assistive Technologies for People with Disabilities
⭐Community Organizing

This free program is open to adults with developmental disabilities and parents of children with developmental disabilities.

Go to https://moddcouncil.org/partners-in-policymaking/ to learn more about the program and apply.

10/06/2025

A great weekend at the FestAbility event. I came across this Optimistic October calendar from my friends at UMSL SUCCEED (OIPE) and had to share it. Happy Fall everyone!

09/04/2025

Great event. Highly recommended.

FestAbility is hosting our 6th Disability Pride festival at the Missouri History Museum in St Louis on Saturday, October 4th.
If you would like to sponsor the event, join the walk or request a resource table, click on this link, https://forms.gle/gzryaiQ1FFCw2SCa7

08/15/2025

Happy back to school time.
If your kids are reading below grade level or struggling to learn to read, here is a webinar you need to attend. Continue the content learning even if the reading is a struggle.

Especially for middle school and high school! Simple accomodation for any IEP or 504 plan. Let them learn the curriculum (social studies, science, electives) even if they can't independently read it themselves.

Listening with text-to-speech: Tools to support reading access. The Pacer Center is a leading resource for all thing IEP.

This workshop will introduce a variety of text-to-speech tools that enable users to listen to written content. Participants will see demonstrations of reading pens, mobile apps, and computer-based tools compatible with Chrome and Microsoft platforms. These technologies can benefit individuals of all...

07/05/2025

Continue, commit, and endure. For there is no other choice. Let all your elected officials know who you are and that Medicaid cuts affect your family. And ALL families.

We will continue to fight for Medicaid & for medically complex children and their families!

The Republican majority's reconciliation vehicle that will cut nearly one trillion dollars from Medicaid, undermine Affordable Care Act subsidies affecting 24 million Americans, rip coverage away from more than 13.7 million adults and children, and threaten the fundamental right for people to live in their communities with their families.

The following statement is attributable to co-founder and Executive Director Elena Hung:

07/02/2025

Tell your friends, tell your family, tell your neighbors. The only thing more powerful to a politician than special interest money is voters speaking up.

06/26/2025

It's not!!

Let’s be clear about something.

A van ride is not a day out.

Not for you.
Not for me.
Not for anyone.

If someone packed you into a van, drove around for a bit, maybe looped the same streets, then brought you back and called it a "day out," you'd call that insulting. You’d ask: “Where did we go? What did we do?”

And you’d be right to ask.

But too often, people with intellectual and developmental disabilities don’t get asked. They get loaded in and loaded out, and that’s supposed to be enough. It’s supposed to be stimulating, enriching, maybe even a treat. But really? It’s just movement without meaning.

A van ride isn't a choice. It isn’t a memory made. It’s transportation, and when there’s no destination, it’s just time being filled. That’s not inclusion. That’s killing time.

And people know. People know when they’re being patronized. They know when something’s being done to them instead of with them. They know when they’re being managed instead of respected.

We have to stop pretending that busy is the same as belonging.
We have to stop calling it a day out when it’s really just a loop around the block in a world that keeps them outside of it.

If we truly believe in rights, in dignity, in inclusion then we need to start asking different questions.

Not “Did they get out today?” but:
“Did they choose where to go?”
“Did they feel welcomed there?”
“Did they laugh, learn, live something?”

Because people with intellectual and developmental disabilities deserve more than motion.

They deserve meaning.
..

ID: Fionn holds a cardboard sign above his read which reads "A van ride is not a day out."

06/25/2025

This affects my family, your family, and all Americans. Red and Blue. Wake up people. Make the call to your elected leaders today. If not for me, for US.

34 Medicaid protesters were arrested, many of them people with disabilities, some in wheelchairs, after staging a sit-in to demand Congress stop gutting Medicaid. Link in comments.

Here’s why this matters to Missouri: Lawmakers are pushing plans that do not directly cut your benefits on paper, but they do cut the funding that pays for the administrative staff who help people stay enrolled. At the same time, they are adding more red tape, more paperwork, and stricter reporting rules.

The result? People lose coverage. Not because they do not qualify, but because they cannot jump through the hoops fast enough.

This is not just bad policy. It is intentional. It is how you quietly rip healthcare away from people without ever passing a bill that says so.

Missouri has already dropped 400,000 people from Medicaid since 2022. If Congress moves forward with capping Medicaid funding and slashing support systems, that number will grow.

Silence is not neutral. It is permission.

Call your representatives. Show up. Speak out. Because they are counting on you to look away.

04/20/2025

There's a camaraderie between families who share similar experiences. We might not live near each other, we might not be able to have play dates with our kids, but when the chips are down we're out here pushing for our childrens' right to exist fully and safely in this world.

Right now this is more important than ever. I live in Canada and understand that our cultural landscape is intertwined with our southern neighbours. This post is for everyone, but particularly addressed to the rhetoric that is currently taking place regarding timelines and autism causality.

When I worked in the disability support sector, many of the people I cared for were disabled adults in their late 40's to early 60's. I cared for a man who had hepatitis since childhood because the institution he was left at by his family reused needles on disabled people. I cared for a nonspeaking autistic man who hadn't seen his family since he was left at an institution as a 5 year old. He understood everything, but even in the mid 2010's, this was not recognised. Almost everyone I cared for bore scars of institutional mistreatment, whether physical or mental.

If you are an abled person who was born between the 50's and 70's, you're absolutely right that you didn't see disabled people growing up. Doctors, social workers, and schools encouraged the institutionalisation of disabled children. Many disabled children were left at institutions and never saw regular family life, or even their families, again. This is what was considered normal during the institutional period of disability history. This was a period in the recent history of science and medicine in which someone's humanity was assumed to be present (or not) based on their proximity to a norm that our work still questions. Depending on where you live, the deinstitutionalisation of disabled people didn't happen until the 70's, and for some, even later.

A parent I know, whose child is much like mine, shared the following image to cast light on this history. This picture was taken in 1982. I can't imagine the fear and pain children felt to be kept in these conditions. I can't imagine the attitudes of the adults around them that led to their confinement. This is not ancient history.

When someone says there 'wasn't all this autism back in their day', think of this picture. Think of the many thousands of people whose lives were lived in squalid conditions and under state-sanctioned institutional neglect and mistreatment, and shut them down. Disabled people are often still overlooked and neglected in human rights movements. We neglect disability rights at our own collective peril, anyone can experience disability within their lifetimes, but beyond this truth, it is our collective duty.

This can never be a reality for children like mine, ever again.