My husband and I are 57 and have a 21 year old daughter with severe (Level 3) autism and intellectual disability who is - for better and worse - in adult residential housing.

I say for worse because the quality of adult residential treatment options has tanked severely. People aren't receiving the add-in support services they need. Our local disability rights organization is focused on those with lesser disabilities. They insist on believing everyone is capable of self-advocacy and needs no safe-guarding. Effective treatments are blocked because they might involve restraint, aversives, or removing clients from unsafe environments or removing objects from their grasp.

Basically, it seems like denial that severe intellectual disability exists.

So we're watching her get less healthy and less independent while we fight to restore reason to this system.

We still do all her medical care and take her on an outing every weekend with monthly overnights. And we also get called to step in when providers can't do what is supposed to be their job, like transportation. They can't get her to move because they're not allowed - thanks to the disability rights organization - to put hands on her. Her school refuses to write a fire safety plan to get her out of the building fir the same reason.

But the endless meetings and grievances/complaints to various state agencies thst seem to accomplish nothing are getting to me.

It's all tied up in the illegal immigration issue, too. So you have to be very careful with how you phrase even blatantly obvious problems. The state closed so many programs for less than the migrant-owned companies are getting away with now.

And, of course, many of these new providers are being shut down for fraud, so her services could disappear tomorrow.

It's stressful and terrifying, and we may need to move states to someplace that retains relative sanity. But we can't do that without forcing our state to pay for out-of-state care first.

She needs to settle before we follow, or we may face a decade or more without services. Autism and intellectual disability are pretty much the only services you can't just transfer state to state with Medicaid. It's insane.

And we have elderly parents we don't want to leave. I help Mom with bureaucratic stuff around my stepfather's long term care. My husband does a lot for his mom. We have siblings, but they have their own challenges.

And our adult son is still with us at age 25 and of very little help. He has dragged out his college degree forever in a desperate attempt to never grow up, refuses to get a part-time job, has to be told what to do to help around here (and still doesn't do it most of the time), He has one more course toward his degree. I had to take his last course with him for the last two weeks of it, or he'd have failed it. For a third time. I'm not looking forward to his next, more demanding course this winter.

There are no drugs involved. He doesn't have a new therapist yet, but he's medicated for ADD. And he has a very busy gaming schedule. 🙄 We're going to have to change the wi-fi password on a 25 year old and draw up a lease. It sucks.

Did I mention my own autoimmune-autoinflammatory stuff and my ascending aortic aneurysm? 😂😭

Caregiving isn't for the faint of heart. That's for sure.

So yes. Definitely right there with you on the endless caregiving.

Sometimes I dream of running away and becoming a bartender in some touristy destination. Maybe the Florida Keys. Hang out with the six-toed cats. 😂