I met a person with IDD while working in behavioral health. They were in acute crisis stabilization — the kind of admission that’s supposed to be short, contained, focused on getting someone safe enough to leave. But this person was incredibly anxious about discharge. Not about being in crisis. About leaving.
They were going back to a group home they didn’t choose. A roommate they didn’t pick. No idea which staff would be working that evening.
Sit with that for a second: this person had more autonomy in a psychiatric hospital than they did in their own home.
That’s not supposed to happen. Acute crisis stabilization should not feel like a holiday. But when the alternative is a placement with zero say in who you live with, who cares for you, or what your evening looks like, a locked unit can start to look like the better deal. That should stop every one of us in our tracks.
Here’s the structural problem underneath it: in this country, you are either in the IDD bucket or the mental health bucket. You don’t get to be a whole person with overlapping needs — you get sorted into a system, and that system was not built to talk to the other one. So when someone like this person needs both, the two systems don’t collaborate. They negotiate. Mostly over who has to pay.
Meanwhile, the person in the middle of that negotiation is the one who loses autonomy, continuity, and often dignity, while the systems argue about jurisdiction.
I’ll be honest about where I land politically on this: I don’t think we’re going to see this fixed under this administration. But I’m more than happy to be part of the clean-up crew when it’s time. Because someone has to be ready to rebuild the bridge between these systems when the will to do it finally shows up — and I’d rather be one of the people who already understands both sides of that divide than someone starting from scratch.
This is also, not coincidentally, becoming the thesis of my grad school work. There’s a real gap in how we think about people who don’t fit neatly into one diagnostic category, and I think sibs and families living this reality already know more about that gap than most of the professionals paid to study it.
If you’ve watched someone you love get bounced between systems that won’t claim them, I don’t have to explain any of this to you. I’d love to hear what that’s looked like for your family — reply or share below. And if this kind of systems-level talk is useful to you, join the list — more of it is coming, especially as my grad school work takes shape.
