Posted in Developmental disability service system, HCBS, Problems and solutions

Developmental Disability Service Agencies: Can’t vs. Won’t

Photo on 5-12-18 at 5.23 PM
Mel holding up a prescription bottle of hydrocortisone, absolutely necessary to continued survival.

In my post on why Vasili Arkhipov should matter to everyone (and especially people in human services sometimes), I touched on what happens when my developmental disability service agency confuses what they can’t do with what they refuse to do.

I have a concrete example.

I take a particular medication four times a day.

This is a medication that is vital to my survival.  I don’t mean indirectly.  My body does not make even a little bit of a particular hormone that is necessary to survival.  Without getting a replacement, I will die.  There is no way around this.

There have been many complicated things preventing me from getting the right amount of this medication, throwing my health into jeopardy.  Some have to do with the agency and some don’t.

But my endocrinologist recently got angry about something the agency was doing.  One of the doses of the medication has to last me overnight.  It has a certain time it stays in effect.  You can’t change this time by wishing really hard or something.

So there was a staff shortage, and they started sending people earlier and earlier at night.  A medication that was intended to be taken at 9 pm started happening as early as 5:30 or 6 pm instead on days when it was more convenient to the agency.

I started waking up with trouble breathing, and having to take more of the medication to breathe through the night.

Needless to say he wrote an order saying the nighttime dose needs to be as late as possible.

But anyway, we recently discovered a lot of things that were going wrong with this medication.  Everything from the way my stomach was absorbing it, to the way my body seemed to be using it, to other conditions being affected by it, to the timing.  So we had to start over.  By start over I mean go through a long grueling period of figuring out how much I needed by chest port, resolving as many digestive issues as we could, working out dose conversions to my still-wonky guts, and coming up with a dose and timing schedule that will get me through the day without too many hiccups or surprises.

In order to do so, we had to throw out my agency’s schedule entirely.

See, before this, I was only getting the medication during the existing staff shifts when the people from the agency were at my house to administer medications.

And that didn’t turn out to fit the rhythms of the way this hormone works in anyone’s body, let alone mine.  Like not even a little.

But we had to go with what my body would actually need.

So now I have a medication I have to take four times a day, and every single one of those times is outside of the times when I have staff over to help me administer things.

Self-administering medication without, at least, prompting and checking from an actual human being, is not something I can do.  I know this.  I used to have an app designed specifically for people with brain injuries and other cognitive disabilities that wasn’t good enough to nag me into doing shit like this.

Mind you, I’ve downloaded Medisafe onto my phone.  But that’s a backup.  It’s not sufficient.  Medisafe alone, even with the thing where it texts someone if you don’t take it, isn’t enough.

And of course when my case managers come by, they’re all cheerful to tell me about how their boss told them about Medisafe.

But anyway, they were also just as eager to tell me that they as an agency were not capable of giving me the support to self-administer this one medication.

Support would, at minimum, consist of getting a phone call four times a day.

A fucking phone call.

That’s all.

Not someone to give it to me.

Not someone to physically be in the room.

Just someone to call, get me to initiate the whole process of doing it, and then verify that I’d done it.

They told me this is not possible.  That they can’t.

I told them that I understand they think they can’t, but that I need them to know I’m fully aware that they actually mean they refuse to.  Maybe not these case managers personally.  I don’t know who.  But failing to provide even minimal support for a life-saving medication is a refusal, not an impossibility.  And I refuse to let them get off the hook for saying it’s just impossible for them to support me on this.

They do more at other times than it would take to do this.

They just — someone, somewhere, in the agency — don’t want to provide this kind of support.

I will come up with other options, of course.  I already am.  I told them that if they refuse to support me on this then they need to help me find those other options at the very minimum.  But that it’s absolutely, absolutely refusal.  It’s not can’t, it’s won’t.

Agencies love to come up with random reasons they can’t do something when they really mean they refuse to, or don’t want to, or just plain won’t for whatever reason.

My agency seems to love to do it by reflex.  Often the very first thing I hear when I ask for help with something is that it’s impossible.  Even if it’s something like “Can someone plug my cell phone in at the end of the shift?”

At any rate, it’s really wonderful to hear how person-centered this agency’s services are these days.  You’d think there wouldn’t be anything more person-centered than figuring out a way for someone to get life-saving medication at the times their body needs it.  But person-centered appears to just mean I get the option of having a glorified social media profile stuck into my file, not that anything I get in the way of services actually revolves around what I need or want in life.  Because that’d make sense.

Make no mistake about it, though:  This is not something they can’t do, this is something that at some level they are refusing to do.  Because the agency is set up for the convenience of the agency, not for the convenience of those of us it claims to be there to help.  Which has results for us that range from annoying to life-threatening.

I agree with a friend’s assessment of the situation:  While I’m not in a congregate care setting (a place where lots of disabled people live together usually not by choice), in practice this is “sort of scattered-site congregate care”.  This is what agencies behave like in more traditional institutional settings, they just get to pretend it’s not happening like that if we all live in individual apartments of our own.

I don’t think Vasili Arkhipov would’ve said he couldn’t try and veto the captain’s order to nuke the Americans…


By the way, I do have every strategy currently possible in place for dealing with this situation.  I have stopgap measures.  I have people on my side.  I’m gonna need something more than this eventually.  But I don’t need suggestions or anything, so please don’t.  

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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