Posted in Developmental disability service system

Practicing Medicine Without a License

Medical bracelets that say things like "Steroid Dependent" and "Adrenal Insufficiency".
Medical bracelets actual doctors have told me to get for emergency purposes. Very different from the emergencies my DD system file tells people to prepare for…

Just as the developmental disability service system can act like the criminal justice system without needing judges or juries, they seem willing to make medical determinations and decisions without a license.  Or to grossly overstep the bounds of any licenses some of them might have.

A couple years ago, I was in the ICU.  I had gone into status epilepticus and later stopped breathing.  I was admitted for respiratory failure and diagnosed with metabolic alkalosis. They figured out why, too — loss of stomach acid due to someone putting in a kidney drain instead of a J-tube.  (Other things can cause it but those were ruled out.)

Anyway, while this was happening, my DD service agency was holding one of its meetings.  They always hold a meeting if I’m in the hospital.  Neither me nor my DPA are invited to participate.  Nor are my doctors.  But they make medical decisions during these meetings, without necessarily even telling me.  It’s all for my own good, they say.

I have a number of well-documented medical conditions that are known to my agency.  They have been around for all my hospitalizations and emergency room trips and medical tests, and are aware of what emergencies have taken place in the past and what have not.

So after the hospital stay, I get home from the ICU.  And a little while later, they tell me their nurse wants to talk to me.  They say she wants to discuss with me how I’ve been feeling since my hospital stay and catch up with me.  So far, so normal.  I usually get along with this nurse and don’t anticipate any weirdness.  But it gets weird super-fast.

She comes into my home with an agenda.  It’s to get me to seek medical treatment for a condition I don’t have.  (Sorry for vagueblogging, it’s a privacy issue.  Suffice to say if you haven’t heard this story, you’re unlikely to know what it is.)  Like a condition I’ve never had, never had a doctor say I have, never had any evidence of having, and can’t possibly be connected, even if I had it, to metabolic alkalosis.

The agenda is obvious because of a few things.  One, she never asks me a single question about how I’m doing or how my hospital stay was or anything about the hospital stay at all, even though this visit is supposed to be the usual followup questions about the hospital stay.  Instead, she tries to hard-sell me on treatment for something I don’t have.  Any time I basically go “WTF, um, this makes no sense, because…” she just comes at me from a different angle.  She is surprised, sometimes, at what I have to say on the matter, because my experiences do contradict the condition in question, and she clearly hasn’t thought of many of these things before.  But it’s very clear that in her head, she’s diagnosed me with this.  She’s even spoken to doctors who have never met me, about me in this regard, and is trying to persuade me to see these specific doctors.  It’s creepy and weird.

So at that point I kind of know something is up, and I tell my case managers, “Hey, don’t send people to my house if their only agenda is to persuade me to do something rather than to communicate with me.  I don’t know what the hell just happened there but it wasn’t cool.”  I also took case managers with me to doctors’ appointments where doctors assured them I did not have the condition in question.

So nearly a year after those events, I find a weird document in my agency file.  I’d been looking for a different document for my records, and someone just accidentally put this document in the pile of documents I had requested.  This document was weird in several respects — it’s also the one that went on at great length about what I look like when angry — but it pretty much said I had a medical condition I don’t actually have.  The same one that can’t possibly cause metabolic alkalosis.

It also went into a good deal of description of my behavior that supposedly came from what direct support staff had said about me.  At that point I’d had the same direct support staff for years, so I asked them, “Have you really seen this behavior?”  They not only said they hadn’t, but said they were willing to sign legal documents saying they had never seen me do any of the stuff in the document.

So I asked my case managers why the document existed, and on went a series of exhausting meetings between them, me, and my power of attorney for healthcare.

They said the document existed in order to prepare people for possible medical emergencies.  They said it came into being because of a meeting they had while I was in the ICU.  They said they earnestly wanted to help me with any medical problems they could, so they simply decided that I had this medical problem.  Without consulting any doctor connected with my care, without consulting me, and without consulting my DPA.  Because it was a medical problem where they knew what the treatment was, so it would be something easy for them to help me with.   So they basically invented a medical problem I’ve never had, because they knew better what to do about it than they knew what to do with metabolic alkalosis.

The document went on to amass evidence for this medical problem that didn’t exist.  Some of the evidence included outright lying about previous medical events.  I say lying, and not mistaken, because the person who wrote the document was present for the medical events being documented, and one of them was the exact opposite of what he claimed it was in the document.  So it is in my official records that a medical event happened — this is a matter of easily-found medical records — that is the opposite of the event that actually happened.  There is then a whole lot of evidence that is either cherry-picked or entirely made up.

And then the document goes on to pretty much ignore every single medical emergency I’ve really had. The purpose of the document, supposedly, is to prepare staff for medical emergencies that might happen.  The document does not do this.  It goes to great lengths to describe a potential medical emergency that has never happened and likely will never happen because I don’t have the conditions that would cause it.  Then it ignores several conditions that I have that are life-threatening and have already resulted in emergency room trips, hospitalizations, and other near-misses.

Worse, the actual emergencies I have, have involved certain symptoms.  In some cases, those symptoms overlap with the symptoms of the medical condition I don’t have.  If staff were to believe this document, they could either delay treatment for a rapidly life-threatening health emergency, or they could try to get me treatment for something that is not actually happening.  In either case, I could die in the meantime.  It’s that serious.

And mind you, absolutely nobody present at the meeting is qualified to diagnose any of my health conditions.  Not even the nurse.  And if there was concern about an undiagnosed health condition, the first step would be to connect with people who are actually treating me, not to mention connect with me and my DPA.  Me, my doctors, and my DPA were left out of this process.  But I’m supposed to be okay with them writing a document that could put my life in danger because they supposedly mean well.

Mind you, I don’t think they all meant well.  The person who wrote the document is someone who flat-out doesn’t like me.  That’s one reason that a large portion of the document, despite being supposedly a medical document, exists to describe behavior in me (including what I look like when angry — as if anger is a medical emergency) that he doesn’t like.  Some of which is behavior that has never even existed.  It was written by him and signed off on by a woman who never met me.

At one point my agency offered to set up a meeting with the stranger who had signed my document.  The purpose of the meeting would, as far as I could tell, be for her to explain to me at length why she was justified in signing off on a medical condition that’s never been diagnosed, in a total stranger she’s never met, in a situation that would put me in danger if the document was to be believed.  Basically she would explain to me why all of this was okay.  I declined the meeting eventually.

And the thing is, I badly need a document that tells them what to look for in an emergency.  I have a lot of very predictable medical emergencies. None of those things are in this document.  I have been told the document has been replaced, but I haven’t seen the new document so I don’t know what’s in it.

But the alarming thing about all this, and I know my experience here is not unique, is that they can just write basically anything they want in a medical file, and affect my medical treatment.  Even though none of them are qualified to diagnose medical conditions.  I’m supposed to be okay with it because they meant well.  I’m supposed to accept that they chose to focus on something I don’t have because it’s more easily treatable than what I do have.  I don’t think that’s actually what went down, but since I’m not at these meetings, I have no way of knowing what really did happen.

This basically works the same way that it works when they can write you up as committing crimes you didn’t commit, and then sentence you to all kinds of things, without any pretense of due process.  They can also write you up as having medical conditions you don’t actually have, without ever involving you or your doctors or anyone with a license to diagnose and treat said conditions.  They can pretty much do this without ever getting in trouble for it.  They’re a law unto themselves, it seems.

And the consequences can be pretty dire.  If they want to ignore actual medical conditions and make up diagnoses that don’t fit you, that can range from inconvenient to life-threatening depending on what they’ve decided.  There’s a reason they shouldn’t be practicing medicine.  And I’ve heard horror stories about things like this all the time.

Usually it runs that something physical is turned into something “behavioral” or “psychiatric” (which is not what they did with me in this instance).

A good example of what is typical, is a man I used to know.  He was written up for disruptive behavior and made to see a psychiatrist.   The psychiatrist gave him the same diagnoses he gave every other patient of his with a developmental disability.  Then he gave him the exact same cocktail of psychiatric medication — designed to control behavior — that he gave to every other patient of his with a developmental disability.  This is a psychiatrist who made a living treating people with developmental disabilities by formula:  Same diagnoses, same treatments, exactly, no matter who the patient was.  This psychiatrist was associated with the agency that provided me and this man services back in the day.

Anyway, turns out that when the man finally sought medical care from an actual doctor who wasn’t associated with the system, they found things.  Lots of things.  Including that he’d been walking on two dislocated hips for over a decade.  He was in massive amounts of untreated pain.  But the developmental disability service system was more than happy to label his pain disruptive behavior and send him to a psychiatrist rather than doing the relatively easy medical exam that would’ve shown them the dislocations.  This is very common.

So the guy was on a cocktail of strong neuroleptic drugs for dislocated hips.  When neuroleptics are used to control behavior, they work by disrupting the connections between thinking and action.  (They also can disrupt thinking internally, and the connections between one thought and the next.)  They are very invasive, carry some deadly risks as well as the risk of permanent brain damage, and really shouldn’t be used on unconsenting people.  So they wanted to put him on so much medication that he stopped acting like he was in pain, but they didn’t care about the pain itself.  Even after the source of the pain was discovered.

And they never got in trouble for what happened to him.  The agency that misdiagnosed me without a license has never got in trouble for their actions either.  As far as I know these people are considered above the law.  There may be regulations, but there are no real protections for clients against this kind of mispractice of medicine.  Nothing happens to them even when they’re wrong.  And even if they were right, they’d have no business diagnosing and treating things they’re not qualified to diagnose or treat.

I’ve noticed that whether it’s acting like they have their own internal criminal justice system, or practicing medicine without a license, outside agencies (including law enforcement and medicine) consider it all to be kind of an internal affair.  Like the DD system is allowed to be its own self-contained medical system, its own self-contained criminal justice system, its own self-contained system.  And nobody’s really gonna get in the way, because people with developmental disabilities are Somebody Else’s Problem.  And as long as we aren’t landing on their doorstep, they’re more than happy to pass off our legal, psychiatric, and medical management to a system not qualified to deal with any of the above.






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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