Misplaced Mistrust

Hi everyone. It’s been weeks since I last wrote a post. I’ve been struggling intensely again, but as of today it looks like the situation won’t spiral entirely out of control. You see, for months now I’ve been suspecting that my institution’s higher-ups, such as the behavior specialist, were making use of the fact that I didn’t know my rights. I more or less know my rights now and quite aggressively fought for them over the past few weeks. At the same time, I knew that, being quite a challenging client who also doesn’t fit in with the institution’s target population, I’d be at risk of being forcibly kicked out if I became too much of a bother. And I feared the fact that I write on my blog about the institution, even though I don’t name it or any individual workers, would cause the higher-ups to panic. In fact, the substitute behavior specialist already did about half a year ago, but was appeased by my transparency (as in, I literally gave her the link to my blog).

The straw that broke the camel’s back was a decision made by my support coordinator two weeks ago further limiting my access to my records. The institution has a digital client portal, but I’ve continually been refused access to it because it’s thought that accessing it would cause me distress. Well, so does not having access to it and that’s a fact, not a suspicion. Besides, even if there’s absolutely no point in me accessing my records, it’s still my right period.

Unfortunately, my support coordinator refused to revisit her decision even after my telling her, with several examples, that transparency would likely lead to increased trust, not more mistrust.

Unfortunately, there are several reasons that my current state of mistrust seems to be fully founded. For example, two weeks ago, I also found out I now have a revised Care and Force Act plan, which more or less is a shorthand version of the plan that already existed and that I rejected based on it basically being an excuse for staff to continue doing as they please with respect to restraint. It wouldn’t have been as bad if not for the fact that the plan not only is entirely unlawful but it had already been sent to the entire team days or even weeks before I was informed of it.

After this and other incidents reinforcing my idea that the higher-ups were willfully making use of the fact that I didn’t know my rights, I spiraled out of control on Tuesday. My behavior wasn’t pretty, even though I only became physically aggressive once restrained for throwing an object onto the living room floor. Because I did become somewhat aggressive, I feard this’d be the final straw for the staff and they’d demand I be sent to a crisis unit. This didn’t happen.

What did happen was a meeting with the behavior specialist on Thursday. On Tuesday, I’d E-mailed her and my support coordinator and assigned staff a pointy list of requests for a final chance at cooperation, followed on Wednesday by a plea for a last chance in case I’d indeed be sent to a crisis unit. My E-mail on Tuesday could have been interpreted as threatening if those involved had had malicious intentions, hence my E-mail more or less taking responsibility for the incident on Tuesday and pleading not to be dragged into a legal fight.

On Thursday, I finally found out that the behavior specialist hardly has a clue what she’s talking about when she tells me something is a rule, because for one thing I’m her first medically emancipated client. She isn’t intentionally breaking the law and hoping not to be caught; she doesn’t know the law This is problematic in that it signifies I should never have trusted her as being the expert, but it does leave more room for that last chance at cooperation.

After the meeting, I E-mailed her thanking her for her transparency about me being her first medically emancipated client and proposed we from now on work as much as possible within a legal framework. I proposed to actively involve the client confidante on involuntary care and the client supporter on this. I also admitted I’d been entirely misguided in my thinking she was abusing her power.

Nuts! #SoCS

I first heard about the details of the Care and Force Act in the Netherlands a few days ago through a fellow mental health advocate. I’d heard of the bill being passed before, but never quite understood or cared what it entailed. Now I know, from both her opposing side and thesupporting side, namely my own long-term care organization.

As it turns out, the Care and Force Act impacts everyone who receives mental health or developmental disabilities services, whether voluntarily or not. Before this law, only those committed involuntarily to a psychiatric hospital, psychogeriatric nursing home or intellectual disability facility, could be subjected to involuntary care. Now, basically everyone who receives (or, I assume, is supposed to receive) care for a mental illness or developmental disability, can be subjected to involuntary care. Yes, even if you live at home. Support staff are allowed by this law to enter someone’s home without their permission and hold them down there, force medications on them, install cameras for monitoring the client, etc.

This all sounds pretty nuts to me. Of course, that’s what said mental health advocate said too. My care facility says that forced care is not allowed unless… and then they go on to list the law’s reasons involuntary care is allowed. This is a long list, including obvious reasons such as self-harm or aggression, but also “endangerment of the person’s development”. Well, WTF?

I understand the well-meaning intentions behind the law. For example, a client with Prader-Willi Syndrome, which makes them eat and drink without inhibition, can be prevented from accessing sources of food or drink. The long-term care facility said in this case (in a flyer by my care organization) they’d decided to disable the client’s bathroom tap so that they cannot drink like 5 liters of water at night. However, quite possibly, this could be affecting people like me who suffer with compulsive overeating. I am sensible in that I try to ask for help in preventing binges, but I mean, I’ve heard clients being told not to enter the kitchen because they eat lots of cookies and are prediabetic. Well, this is physical health, which I understand on at least some level. But isn’t this whole bill meant to make us all conform to the non-disabled standards of “normalcy” whether we want to or not?

And besides, there are huge budget cuts to mental health and disability services, so will this bill not just be used to facilitate lower levels of actually helpful care?

For example, I could in a worst-case scenario be confined to my bed at night so that I have fewer reasons to bother the night staff when I go to bed later than most other clients. Or I could be banned from using Facebook or the Internet altogether during certain times of the day for reasons such as my needing to socialize more, study, or whatever. Like I said, danger to one’s development is a grounds for forced care.

In theory, the law doesn’t sound too bad, but I can imagine treatment providers such as the ones in the mental hospital, whom I couldn’t trust, can misuse this law for very harmful purposes. Does this mean anyone deemed nuts or dumb, to use some slurs, is at the mercy of the so-called helping profession? It’s crazy!

This post is written for #SoCS, for which the prompt this week is “Nuts”.