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

Posted on by Astrid

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.

Friday Feels (September 13, 2024)

Posted on by Astrid

Hi everyone. Today I’m participating in Friday Feels. The idea is to answer three questions about the past week and share an F word related to it. The questions are:


  1. What made me happy?

  2. What made me sad?

  3. What made a difference?

F word

My F word for this week is “fall”. Last Saturday, it looked like summer wasn’t going to end anytime soon, since the daytime temperature reached 27°C. From this past Monday on though, the weather’s been considerably chillier and rainier. On Wednesday, the temperature didn’t even get above 14°C. Today is slightly less chilly, but the nights are truly getting colder.

What made me happy?

First, Chinese takeout for dinner on Monday to celebrate a fellow client’s birthday.

Second, a treat of one of my favorite biscuits with my afternoon coffee today.

Third, the fact that I was able to get the WiFi on my iPhone to work properly again here. It turned out that turning off a privacy setting on my phone for this particular network, solved the issue.

Last but certainly not least, swimming! On Wednesday, I heard that two of my fellow residents were going swimming at the institution pool that evening. Usually, about seven or eight residents go and it’s too overwhelming for me, but since there was another activity too, just these two guys were going. I took up the courage to ask my staff whether I could go too. It was amazing!

What made me sad?

I experienced a slight increase in bad memories over the past week. Mostly, they were manageable, which is why I’m not using the word “flashback” to describe them.

What made a difference?

There are several things that made a difference this week. First, the fact that one of my trusted staff returned from vacation this week. Most are still on holiday, so the next few weeks will be somewhat difficult still, but I managed this week.

Second, the weather, like I said, is very different and it made a difference, in that I could sleep under my weighted blanket without sweating excessively. This is important, because until now I thought something might be wrong with me. I guess not.

Third, the new agreement that staff will no longer unlock the door for me when I want to elope and will physically restrain me if necessary to keep me from for instance climbing over the fence. I saw the agreement on Tuesday and, though I still have some questions about it, I am for the most part relieved about it.

#WeekendCoffeeShare (March 18, 2023)

Posted on by Astrid

Hi everyone. Today I’m joining #WeekendCoffeeShare. It’s nearly 9:30PM as I start writing this post, so I’ve long had my last coffee for the day. I’m afraid I only have water now. However, as this is a virtual coffee share, you can all grab your own beverages of choice. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d ask about your weather, like I normally do. Ours has been mixed, but usually pretty good. Yesterday and today, the temperature even climbed to 16°C.

If we were having coffee, I would say that yet again I haven’t been as physically active as I’d have liked this past week. However, either my sister doesn’t usually wear her Apple Watch or she isn’t as active either, as we’re “friends” on the Fitness app now and I’m more active than she is according to it.

Yesterday, the support coordinator did take me and two other clients on an hour-long walk, partly through uneven terrain. It was good.

If we were having coffee, I’d tell you I’m still struggling quite a bit. Like I wrote yesterday, we finally had the meeting on my care. It was mostly validating, but the bottom line is nothing will change in the short term.

If we were having coffee, I’d tell you that, because of this distressing situation, I’ve been in crisis quite a few times lately. I self-harmed a few times and today, I actually eloped from the care home and wandered around institution grounds for over an hour before the staff found me. I know this isn’t going to help my chances of going to a less behavior-oriented home, but I really can’t keep myself from spiraling out of control like this.

If we were having coffee, I’d share that I bought another pair of headphones for like €330 and it turned out I don’t like them. I’d been wanting to buy them forever, but they don’t fit comfortably (are too large) and the noise canceling function isn’t as great as the reviewers say it is. It’s going to be returned.

If we were having coffee, I’d end on a positive note by saying today the support coordinator took me for a walk to the coffee bar (I know you English-speaking folks call it a “coffee shop” but I just can’t bring myself to use that phrase) here in town this afternoon. I had a black coffee and a piece of honey-walnut cake. It was delicious!

Runaway #SoCS

Posted on by Astrid

When I was still in the psychiatric hospital, I’d run off often. At the locked unit, this was dealt with by introducing seclusion and restraining measures. On the other hand, at the unit I resided at later, I was made to be accountable myself. This meant that staff wouldn’t go after me if I ran off. They believed that, if I got lost enough times, I would unlearn to elope. I didn’t.

I am a truly frequent runaway. Always have been. When I still lived with my parents, I would often run away too. Same when living independently. I had frequent police encounters because of this. They would invariably call the crisis service, who would refer them back to my home support team. They all had no idea how to handle my elopement.

Then, when I went into long-term care in 2019, I still ran off a lot of times. I usually didn’t get far, as my staff would come after me. I also did get some restrictive measures, such as a sensor that alerts the staff when I leave my room. The door of my care home is locked at night because of my elopement risk too. (The other clients can’t work the key and most aren’t safe outside of the home alone either.)

Since my one-on-one support got introduced last December, I hardly ever run away. It’s been a true blessing. Sometimes though, I still wonder whether I’m indeed just manipulating, like the people in the psychiatric hospital would say, and need a lesson in accountability.

This post was written for Stream of Consciousness Saturday or #SoCS, for which the prompt this week is “Run”.

I Think We Found a Relatively New Alter

Posted on by Astrid

So last Friday we for whatever reason landed in a bit of a crisis. Our husband would be visiting us on Saturday and for some reason, we convinced ourselves he was coming to say he wanted to break up with us. Like I said yesterday, it turned out he wasn’t. He’s such a great hubby!

The night staff checked on us at around 10:45PM. This had been agreed on after our crisis last week, because we were scared to press the call button at night. We told the night staff that we were anxious. She tried to tell us to try to get some sleep. Obviously that didn’t work out.

After we’d been going on the computer for a bit, we decided to E-mail our husband. Then, for some reason, we eloped and wandered around outside of the care facility for a bit. We after about half an hour tried to find our way back, but the doors to our home and to all other homes were locked. We started to scream out for help and finally, the sleepover staff heard us. She and the night staff came to our rescue. Of course, we were asked why we hadn’t pressed the call button. So far, I have no idea.

Then yesterday evening, we were watching a video on the Dutch Center for Consultation and Expertise website. It was about a young woman with severe attachment disorder. In the midst of it, our staff came into our room for something, I can’t remember what. We got really agitated and that’s when I realized this might be a relatively new alter. The girl in the video was called Deborah, so that’s the name this new one chose.

What is so unique about her, is her tendency to “test” the staff’s willingness to help us. Some of us, and this may include her, get triggered when we perceive we’re getting less help than we think we need. Some of us express this appropriately, but Deborah doesn’t. She, rather, gets really agitated and self-destructive. Unlike the Deborah in the video, she hasn’t been aggressive towards others as of yet, though inside she definitely feels like it.

We discussed Deborah’s needs with our assigned support worker just yet. She tried to reassure us that we don’t need to leave the care home. Deborah is lucky that she had me (Clarissa) nearby to explain.

Our staff will have a meeting with the behavior specialist and physician tomorrow to discuss our care. We may get a door sensor, which alerts the night staff when we leave our room. After last week’s crisis, we also gave some of the things we were thinking of using as self-harm tools to the staff. This should hopefully be enough, though Deborah’s behavior is in some ways getting worse. We hope it doesn’t get so bad that we need more support than our home can provide.

Clarissa

Key #SoCS

Posted on by Astrid

I have a key to my room on a keychain. I would originally get a key to the particular home I live in in the care facility. I ultimately didn’t end up getting one. This may be because there’s not been a need for it. I mean, I can’t go to day activities or whatever on my own anyway.

Another reason may be the fact that I ran off several times. The unit is semi-locked, in that you need to turn a particular key to be able to open the door to go out of the house. The other clients can’t work this key, so are in a minor way prevented from leaving the home.

I, however, can work the key. I didn’t know I could until one day in late October, I was in a crisis and needed to find staff. There is no-one on my floor from 10:15PM on, but there are call buttons and listen-in systems and such for people to call the night staff, who is responsible for the entire facility. Anyway, I tried to find help that particular time.

Another time, around three weeks ago, I ran off because my flight response kicked in. I worked the key again and let myself out.

After this, it’s been discussed to remove the key from the lock, so that staff need to open the door with their own keys and I won’t be able to elope on my own. So far, that action hasn’t been taken, presumably because the measure would be just for me (since no other client can work the key anyway). They probably think I’m responsible enough (or should be) to handle this freedom. I’m not sure how I feel about it.

I do also have a key to my husband’s and my house. The reason for this is more symbolic, as I never go to this house on my own. However, I like it this way.

This post is part of #SoCS, for which the prompt this week is “Key”.

Thankful Thursday (February 21, 2019): Meltdowns

Posted on by Astrid

Today is Thursday and I’m participating in the Thankful Thursday blog hop. I am thankful for all the wonderful people in my life, who stick by me even when I’m struggling.

We have been struggling a lot lately. On Tuesday, we were in an almost-constant state of panic. Our staff tried to comfort us, but it was hard. They were nice though and even though we were very distressed, they didn’t get reactive.

Then Wednesday didn’t start good either. We had to have a blood draw and the laboratory person was supposed to come to our home. She hadn’t told us at what time she’d come though, so I waited for an hour, not having eaten as instructed, and then left. I was in a meltdown already.

Later that morning, once at day activities, I was on the rocking lounger in the yard. The staff had said she’d come get me back indoors “in a while”. Well she looked through the window and saw me rocking nicely, but then when I wanted to get off, no-one saw or heard me. That’s when I melted down again.

And then, in the afternoon, my husband informed me that he wouldn’t be home from work till 8PM. My in-laws couldn’t have me eat at theirs either, so I would have to be alone at home till 8PM. I was in a huge meltdown again and ran out of the house.

Thankfully, a woman who lives further down the street came to me and calmed me and helped me find the way to my home.

In addition to being grateful for all the nice people in my life, I”m thankful for PRN tranquilizers. My husband has them in a locker, because I’ve taken two overdoses on them in the past. I hardly ever use them, so when I had used my last pill, I’d forgotten to ask my husband for a refill. Fortunately, he did yesterday. He reminds me that even though I hardly use them, I don’t have them prescribed for no reason at all.

Resisting an Impulse #Write31Days

Posted on by Astrid

Welcoe to day 16 in #Write31Days. Today, I picekd yet another prompt from The Self Exploation Journal, but I twisted it around. Thhe prompt was to write about the last time you did something impulsive. Instead, I am going to write about the last tire I resisted a destructive impulse

I have been struggling a lot over the past few weeks. My husband has been working extremely long horus this past week and has been very stressed about it. Thankfully, he contacted his manager on it today and will be working slightly more normal hours from tomorrow on. However, today he wasn’t home till 9:30PM.

I hadn’t slept very well last night, because my husband was stressed out yesterday and I took over his stress. In my mind, it became worse and worse, until I was imagining my husband dying in a crash with his truck today. Needless to say, I was quite tired when I got to day activities in the morning.

On top of that, one of the regular staff was off sick, so there was a substitute. Because this regular staff would remain on sick leave tomorrow, the staff worked out who to find as a sub. Wednesdays are the busiest days at day activities, so I was quite scared that one staff would need to handle the full group on her own.

By 2:30PM, I was very irritable. I didn’t understand the jokes people were cracking. I was constantly worrying too about how to make it through the evening. I got an impulse to elope. Instead, I decided to try to walk around the building on my own while the staff checked on me tha tI was headed in the right direction. I did fine.

My staff did notice that I wasn’t coping thoguh. She asked whom I could call if I wasn’t coping while home. I decided to call my mother-in-law right then and she informed me my husband had already asked that I could eat with my in-laws.

Had I actually given in to the impulse and run off, people would’ve been a lot more worried than they already were. Besides, since this was my second time going to day activities for a full day, I might have been suspended. I don’t think I’d have gotten in any physical danger had I actually run off, as the day activities place is in a very quiet neighborhood. However, I’m still glad I didn’t give in to the urge.