I’m gonna illustrate this one with another medical story.
Years ago, I needed a feeding tube. Two feeding tubes, actually. The details aren’t really important. Other than I was gonna die without the feeding tube.
The hospital didn’t want me there.
First, they told me because I had a developmental disability I would need 24/7 care from my local DD agency while in the hospital. A call from my DPA to Patient Relations fixed that massive illegal move.
Then, they tried to kick me out after a day even though I had bad aspiration pneumonia visible on a CT scan and was really sick. My pulmonologist and GP stopped them.
Then, they started coming into my room multiple times a day to try to persuade me not to get a feeding tube. They knew I needed one, so they couldn’t just deny it.. I’d been told on admission I needed one. They admitted I wouldn’t survive without one. They were trying to talk me into going home and dying. And I was weak, and I was sick, and they were wearing me down even though I was stubbornly saying I wanted the tube.
They said all kinds of things. I wouldn’t be able to take care of it. I was just like an infant and would yank it out trying to play with it. I would have no quality of life. My caregivers wouldn’t be able to cope and I’d need a nursing home. My life would essentially be over anyway. I needed to ‘consider the alternatives’ (we checked, they meant death). And this was happening multiple times a day.
So my DPA basically called in a social media campaign to get people to contact the hospital and tell them to stop discriminating on the basis of disability, and to stop pressuring me not to get a tube that was clearly medically indicated, etc.
It worked. I got my tube the next day. Grudgingly. Unnecessarily painfully. But I got it. I’ve been happily living with tubes ever since. And my care is actually easier, not harder. And I’m still alive.
But the first thing a caseworker from my DD service agency told me when I got home?
“You shouldn’t have done that. Do you understand you are jeopardizing our agency’s good relations with the hospital?”
I almost died and did what I had to do to survive. They were more worried about their agency’s social relations with a hospital that has a bad track record treating people with developmental disabilities.
Some agencies are better than others.
But when you’re a client of a developmental disability agency. You have to understand something very clearly. No matter how much people care about you as a human being on a human level. No matter how much they’ll side with you when your interests and their interest are in line…
…It’s still a rare agency office worker who will put you above the agency when push comes to shove. If there’s a conflict of interest, almost always they will side with the agency. There are exceptions. You can’t count on them. Be cautious.