Spoiler Alert: Disabled People Are People!: Reflections on Involuntary Care

Hi all. As those who read my most recent post know, I had my Care and Force Act meeting yesterday. For those not familiar with this, this is the law governing when people with intellectual disability, dementia or brain injury can be subjected to “involuntary care”, such as restraint, seclusion and forced medication but also when restrictions can be placed on how a person lives their life. For example, it regulates the circumstances under which people can be prohibited from using electronics.

My own Care and Force Act plan only relates to measures like restraint, seclusion and forced medication. These three have more strict guidelines than other measures like prohibiting someone from using electronics. With these, it’s always “involuntary care” regardless of whether the person shows resistance or not. This is actually a reason I recently found out that my antidepressant prescription is “involuntary care”, because it does not follow medical protocols on when it should and should not be prescribed. This does not mean I will go off of it, by the way.

The meeting with the client confidante and my home’s behavior specialist went pretty well. I attended it without a staff, because at the last moment the staff who could attend it with me was switched and I didn’t like the one they assigned me.

The confidante however was quite critical, which I liked but the behavior specialist didn’t. There are three plans involving restrictive measures, all within the stricter category: two for restraint and one for seclusion. The one on my antidepressant hasn’t been written yet. I had E-mailed the behavior specialist in advance with a lot of feedback on the plans. Particularly, they were far too generic. For example, it is written in them that I can be restrained when in “high distress” and that this will prevent me becoming physically aggressive towards staff. The first part of this statement is horribly nonspecific and the second is frankly wrong: I actually rarely if ever become physical when not being restrained and the order is reversed, in that I am restrained first for verbal irritability and this leads to furhter aggression from me.

The behavior specialist got quite uncomfortable with the critical comments from the confidante. After all, she pretty much told it like it is: if I were to file a complaint, there’d likely be several grounds for it being upheld. She also quite clearly said that restraining or secluding someone without a proper plan is deprivation of liberty. I liked this validation, because it shows that well, just because I’m a client doesn’t mean the staff can do as they please. Actually, when the behavior specialist claimed this side of the home being locked isn’t for me (which I frankly believe isn’t true), the confidante quite bluntly suggested I get a key. This is unrealistic in my opinion, but it does show that staff can’t randomly be locking people in just for the sake of it.

Today, I had a horrible argument with the staff who’d been initially assigned to attend the meeting with me. It wasn’t even about me: another resident had eloped and she was threatening to refuse him access to his electronics after he was taken back here. I didn’t actually want to go into this client’s situation, as it’s honestly none of my business. All I wanted to do is raise awareness of the fact that just because someone is intellectually disabled doesn’t mean they don’t get to live their life as they want. This particular staff has a rather ableist attitude towards care, literally having told me that she gets to decide most things about me because she’s the staff. The reason for this comment was my telling her that we were going to take a shorter walk than she wanted. This is another example of the not-so-strict measures, because deciding that I have to take a certain walk is restricting me from living the way I want to live. Not that this particular situation would’ve been one I’d make a fuss of if not for the fact that I was literally in pain and had already been going on two longer walks that day.

Unfortunately, the Care and Force Act is a bit vague in terms of what does and does not count as involuntary care. For example, a home’s front door being locked at night doesn’t necessarily count, because it is not disproportionate and affects every client equally. That being said, there is some push towards open doors and I can see why. After all, like I said when a staff used as a reason for the front door being locked at all times that regular front doors are locked too, regular house residents have a key.

After digesting the meeting, I E-mailed the behavior specialist that I understand that it takes quite a drastic attitude change to actually fully validate this home’s client’s rights and that I don’t expect this to happen overnight (or before I move out of here). I however do want to make sure that we’re making progress and at the very least it doesn’t get worse.

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