Asserting My Rights

Posted on by Astrid

Hi everyone. Yesterday’s WordPress daily prompt was interesting. It asked us to explain what freedom means. I was originally inspired to write a post about human, civil and disability rights as they apply to my situation, but got distracted by family matters.

After last week being dragged to my room by both arms by two staff for the crime of being in the living room outside of my allocated one-on-one time and appearing (slightly) in distress, I decided to contact the client confidante on involuntary care. I remember writing about the Care and Force Act when it was just being introduced and being offended at the fact that it applies to anyone receiving care due to an intellectual disability (including acquired brain injury) or neurocognitive disorder (like Alzheimer’s, Huntington’s, etc.), not just institutionalized people. Like, under the old law, you had to be detained in an institution first before anything could be done against your (or your guardian’s in the case of being incapacitated) will. Now even those still living independently can receive “involuntary care”. And just for clarity’s sake: “involuntary care” is a euphemism for anything being done against your will, including being locked in or out of a room, forced medication, etc. As an example, if someone with dementia constantly leaves the stove on, they can be involuntarily locked out of the kitchen. Yes, even in their own homes!

However, after speaking to the confidante, I realized the Care and Force Act isn’t a free pass to do as you please if you happen to be a care provider. In fact, I’m now pretty sure that it’s indeed giving the client more rather than fewer rights, at least if they (or their guardian) knows how to assert those rights. And I know now!

Yesterday, the client confidante came by to discuss last week’s incident with me. I had given both staff involved one chance to talk it over with me before. The one leading the “involuntary care” wouldn’t budge and told me she’d talked it over with the behavior specialist, team leader and my assigned staff. She kept claiming forcing me to my room was in the other clients’ best interest. I learned yesterday that the Care and Force Act isn’t about best interest, but about “significant disadvantage”. This means that someone (either the client involved or someone else) has to be at risk of suffering significant harm (in any form, including psychological) if the “involuntary care” isn’t provided. It also requires that “involuntary care” be the last resort. In this case, the staff asked me verbally to go to my room twice, then threatened to ask her coworker to “help” then gestured to her and then they dragged me to my room. That’s not a matter of last resort!

The other staff involved used to be one of my most trusted staff. She initially blamed her coworker for forcing her into a quick decision, until I learned that they’d talked it over before I even went into the living room. Then she finally half-heartedly apologized.

This incident, however, was only the final straw again. After talking to the client confidante and being informed of my rights, I feel that a can of worms was opened of things that staff (used to) do against my will.

For example, this home is locked as a measure of “involuntary care” for two fellow clients at risk of eloping. This is in itself a questionable measure, but the thing affecting me is my being given a black-or-white choice between the door being opened at every hint that I want to leave or my not being allowed to leave the home without explicit permission at all. A similar thing is staff constantly telling me they aren’t allowed to force me into activities as an excuse to lay back at my every hint that I don’t want to do a certain activity.

Another example is the client portal with my records. I have requested access to it multiple times but the question has always been flat out ignored.

I called the confidante this morning requesting that I be allowed to E-mail her with my further concerns/questions. I did so this afternoon. Earlier this evening, fear hit me hard. What if the powers-that-be decide to give me a choice between consenting to whatever they please and being kicked out? This happened once in the psychiatric hospital and well shotgun consent but they got it.

Same when the social worker threatened to declare me incapable of decision-making and make my parents my guardian unless I signed application forms for a home everyone should’ve known I didn’t meet the criteria for. I sent the confidante another E-mail this evening asking whether the institution could legally do this and, if so, whether there’d be any chance that my parents or sister would be appointed as guardians rather than my wife, especially after our divorce.

The confidante will E-mail my support coordinator asking her to schedule a meeting between her, the behavior specialist and me with the confidante leading the process. She told me I’m allowed to file a formal complaint after that. I’ll give it some thought, but that causes me intense fear too. After all, even if no-one can legally threaten me with forced discharge or guardianship, that doesn’t mean they won’t try.

21 thoughts on “Asserting My Rights”

    1. I agree in theory, especially because this particular staff almost habitually ignores my signaling plan (which has different actions in it depending on my level of alertness/distress, including restraint only when I’m severely dysregulated). However, I’m pretty sure they’ll find a way to manipulate me into disregarding my rights, as there are several complicating factors. For example, I’m not intellectually disabled and not sure my diagnosis of brain injury is sufficiently documented to warrant me being subjected to “involuntary care” under this particular law (there’s a different law for mental health but I’m not familiar with it).

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  2. It’s difficult. I look at myself and think I’m younger, have more energy than most other stroke survivors/disabled people, so I have a duty to complain, otherwise they will suffer in silence. I hate being a whiner but I recently took the local bus company to task, and am currently fighting my doctor and the govt agency which administers benefits. I hate being the whiner but somebody has to or things will never get better. How easy would it be for them to kick you out?

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    1. Also you are very articulate in your blog. This is a massive strength. You’d be articulate giving testimony, too. It would at least be worth speaking to someone who is independent of all this and who knows your laws.

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    2. Thank you for your encouraging and relatable comment. I feel that duty to speak up on behalf of my fellow residents too. Most are nonspeaking and all have a severe intellectual disability. I’ve argued about the Care and Force Act with my staff before, including in some cases arguing for more force being used on a rather annoying fellow resident when what I really needed was validation and support in coping with the overwhelm caused by her behavior. I mean, this particular client is always in the living room unless she’s sleeping and staff say they can’t force her to her room, but they literally lock someone else into her room all day for what I believe are petty reasons. If I can make the staff and behavior specialist even a little more conscious of the fact that we’re human and have rights, I hope that’ll help my fellow residents too.

      Re the risk of me being kicked out, I honestly have no idea. I mean, in mental health “breaking house rules” is a reason to be forcibly discharged, as is having improved so much that the care is no longer needed whether you agree or not (the reason I was eventually kicked out of the psych hospital). In disability services, there are probably reasons to be kicked out too, though I think they’re more strict.

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        1. Yes, there are professionals who will act as guardians (obviously not for free), but for now I’m hoping to avoid needing a guardian at all. My wife is definitely helping me in this respect. Like, I am physically unable to write a signature and there were people suggesting (including other disabled people) that a guardian doesn’t mean I’m totally unable to make my own decisions so why not appoint someone to be done with the hassle? Well, the problem here is that I have nobody I can fully trust other than my wife and one of the reasons the signature thing came up is our divorce.

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          1. Not necessarily to be a guardian, that sounds too much from what you say, but maybe a lawyer? In theory, we get an initial consultation at no cost here, do you get that? But this is a very niche area of the law.

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            1. Yeah, that’s an option here too. The current route is through the confidante (if you mean asserting my rights re my care). Re the divorce, we do have a mediator and the problem here isn’t us disagreeing but purely my inability to physically write a signature.

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              1. I often just write “X”. Like people used to. If people don’t like it, tough. I was left-handed and the stroke hit my left side So I use my right, but never learn tried properly to write with it.
                In my experience I find that I don’t really need to write. The only thing is christmas or birthday cards.

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                1. Makes sense when dealing with package delivery people or the like, but my poorly scribbled signature wasn’t accepted when my wife and I bought our house even though the solicitor actually saw me scribble it. My point is, yes, an X would probably be accepted in less formal cases but for things like buying a house or divorce, it isn’t acceptable.

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  4. Astrid, I am so sorry to hear of what you have been through. I am really glad you have the confidante on your side to help you through all this. I do also apologize for being so absent recently. There has been so much going on the last few months and I have had next to nothing left by the time I sit down in front of the computer. Maybe later this month I can sit down and write a little of it all out. But still so many things to do and try and to find out about. Keep speaking up for yourself. You are your own best advocate in your healthcare! Be well!

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