Posted in Developmental disability service system

Threats of further neglect.

feeding tubes

The DD system has many ways of getting clients to do what they want.  Some are more subtle than others.

One way is to tell us that if we don’t do what they want, they will force us to do something worse.

An example from the past year:

I can’t do my own medication routine.  I can do a few medications a few times.  I can’t do the whole thing.  Trying to do the whole thing, even with someone watching and a checklist, makes my brain completely incapacitated for the day, rendering me unable to do essential medical tasks.  I get things wrong even if I try, no matter how much I practice.  And most of the time I can’t do it at all no matter how hard I try and whether someone else is there.  Trying to do the whole thing can also physically endanger me due to the effects of a neuromuscular condition.

I get my meds through a J-tube, a kind of feeding tube.  Due to the complexity of my medication routine, staff have to be authorized under the agency nurse’s license to administer the medications.  This is called being delegated or med-delegated.

These are medications I rely on for survival.  I can’t just wait and go without them.

The administration at my agency seems bound and determined to screw things up for staff and clients alike.  Then they act surprised when they’re short-staffed or have roped themselves into a position where they’re not allowed to train staff who would otherwise be willing and able to train for certain tasks.  They act like these things come out of nowhere and just happen.

So what I was told at one point was that the only option the agency had if they couldn’t find enough med-delegated substitute staff, was to dump me in the emergency room and make the hospital give me my meds.

I was outraged both on my own behalf and on behalf of the hospital.  That’s not what the emergency room is for.  Also, the emergency room workers resent situations like that.  And it’s usually the patient they take it out on, not the person who’s dumped us there.

So I said I refused to participate in such a thing, and explained why.

And that’s when they told me there was this one other option.  That they’d only use as a last resort.  Which was to have me do the meds physically myself with the staff watching.

Then it became not a last resort, but something they made me do all week long.  The more I asked for help and said I was unable to do things, the more things they made me do.

There were medical consequences.  There is a medical neglect complaint pending.

They told me I was lucky to have any staff at all that week and that I had to take what I can get.  That’s another threat:  You could have much less, easily.  They also like to inform me of how many clients have no staffing at all.  Understand:  When I ask for things I need, I’m not saying other people don’t need them just as much.  We should all be getting what we need.  Telling me other people are more neglected than I am so I should be grateful is just weird.

Understand it’s their legal responsibility to help me do things I can’t do myself.  If they drive half their staff away with bad management and inability to earn a living wage, that’s not my doing and shouldn’t come down on my head.  But things like that always do.

Other common threats are the threats of losing your freedom if you ask for too much or have too many medical issues.

Years ago, when I got my feeding tubes, the agency discussed whether to have me put in a nursing home because “staff would never be able to handle a feeding tube”.  (My tube care is actually easier than my previous care, mind you.  Staff have no problem.)

I’ve gotten regular comments to the effect that I belong in a group home, nursing home, ICF/DD, or other institution.  Sometimes they’re explicit threats:  “Well it’d be easier for me to put you in a level 3 group home….”  Sometimes they’re just reminders.

And then there’s the “We only want you to be saaaaaaaafe” threats.

Like trying to get me to agree to shared living.

Shared living means living with a roommate who is staff.  It can be someone in your own apartment, but they don’t like to do it that way.  They prefer you move in with the staff person.  Leave your home.  The staff person can control what rooms you go in, what time of day you’re allowed home, anything.  You don’t necessarily get more assistance, and you do often disappear so nobody can see what is happening to you.  It’s the same way nursing homes increase death rates but people think they make you safer.  Safety theater, like independence theater and security theater.

So threatening me with shared living is threatening me with the loss of my home, and possibly my life.

And these threats are used all the time to push us into accepting some form of neglect and independence theater.

Remember if it’s happening to me it’s happened and is happening to others.

The threat of worse is very effective on a lot of us.  Whether it’s subtle or extreme.  Offering pretend choices where both choices suck then pretending we made whatever choice, is a common thing to add on to make things more confusing.

This harms.  This hurts.  This kills.  Has killed.  Will kill again.  Is killing.  Still.  Ongoing.


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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