Posted in Developmental disability service system

The agency matters more to the agency than you will ever matter to the agency.

A GJ-tube, a type of feeding tube, drawn against a brown background.
A drawing of my first-ever feeding tube, a GJ-tube.

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?”

facepalm
Mel doing hir best facepalm/wtf gesture.

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.

 

Author:

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

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