Long-Term Care for People With Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter L post in the #AtoZChallenge. Today, I want to talk about long-term care as it pertains to individuals with intellectual or developmental disabilities. My post is going to be a bit centric to the Dutch situation, as that is what I know best.

In the Netherlands, people who need lifelong care fall either under the Long-Term Care Act or the Social Support Act. Criteria for the Long-Term Care Act are very strict, as it covers lifelong 24-hour care in a care facility (or in some cases at home, but I don’t know that much about that). In other words, to qualify for this type of care, you need to prove that you will never be able to live without 24-hour care. The Social Support Act covers community-based supports, but also temporary supported housing, such as independence training for young adults. (Care for under-18s is covered by the Youth Act, which is in some ways similar to the Social Support Act but covers more domains.)

The Social Support Act is implemented by the local government. This means that, if you decide to move while receiving social care, you’ll need to reapply. Since care under the Social Support Act isn’t lifelong either, you will also often need to reapply. Some cities will grant significantly disabled people funding for five years, but some won’t and this means you’ll need to have a “dinner table talk” as assessments are called, each year. On the other hand, under the Long-Term Care Act, your right to your care profile is lifelong and countrywide.

Care profiles make up the funding classification system in long-term care. These care profiles are based on one’s primary care ground and then on one’s level of care needed. There are criteria for each care ground and then criteria for each level. For instance, for intellectual disability care profiles, an IQ below 85 that was apparent before the age of 18 is required. I do for this reason obviously not qualify for an intellectual disability care profile. My care profile is based on visual impairment.

Until 2021, psychiatric disorders, and that included autism if you happened to have an IQ above 85, were exempt from qualifying an individual for the Long-Term Care Act. The reasoning was that mental illness is treatable, so individuals with psychiatric disorders cannot prove they’ll need 24-hour care for the rest of their lives.

Back to care profiles. For intellectual disability, there are I think six different profiles. Most people with profile 3 and 4 (profiles 1 and 2 no longer exist) will live in community-based supported housing. I am more familiar with people with care profile 5 and 8, which are severely intellectually disabled people who need a lot of (profile 5) or total care (profile 8). I am also familiar with profile 7, which is for individuals with an intellectual disability and significant challenging behavior. My visual impairment care profile is comparable to profile 7 in intellectual disability.

These three profiles I mentioned, are the only ones that can qualify a person for “extra care”, ie. what I usually refer to as one-on-one support. Extra care, unlike the care profile itself, is temporary and specific to the regional Care Office. For this reason, if I am to move out of the area of my Care Office, I will lose my one-on-one and my new care agency will need to reapply.

Legal jargon aside, what is it like living in long-term care? Well, most agencies for the intellectually disabled have one or more main institutions but they do aim for community-based living when possible. In fact, when integration was hyped up in the 1990s, some agencies simply demolished their institutions and started moving even the most severely disabled or behaviorally challenged individuals into the community. Back in 2006 or 2007, I criticized a documentary criticizing this move, saying it was poor care that caused deinstitutionalization to fail. However, let me just say I’ve made up my mind.

Hello Monday (March 6, 2023)

Posted on by Astrid

Hi everyone. A few weeks ago, I discovered another great weekly linky called Hello Monday, in which bloggers share about their weekend. Since I didn’t join #WeekendCoffeeShare this past Saturday, I still have a lot to share about the weekend. Besides, Sunday afternoon was fun, so even if I had posted on Saturday, I could post again today. Let’s get started.

Saturday morning was kind of hard. A new staff was being introduced to me, so for the morning shift there were two staff people doing my one-on-one. I do appreciate the fact that they actually had him properly introduced to me rather than having me do all the explaining, like they did with the student staff, but it did lead to me overhearing them converse about stuff that they said wasn’t my business. Well, if it’s none of my business then why discuss it in my room with me sitting right there in the middle?

Saturday evening was slightly better, but Sunday morning was hard again. The staff assigned to be my one-on-one that day always complains of a sore arm when holding my arm to guide me when walking, but I can’t safely walk without a sighted guide and I struggle to hold onto someone’s arm too (which is the proper way of walking sighted guide). In this sense, I empathize with this staff. Being that he isn’t the crafty type either, we were quite limited in the activities we could do, so I eventually decided we’d go for a walk anyway.

After he left at just past eleven for my “time to rest” (his cringe-worthy term for time without one-on-one support), which normally doesn’t start until 11:30, I indeed had a little lie down, but had had it by 11:30 and decided to go into the living room to see the other clients and staff. I sat there while they had lunch (and I had a little bit too). I was going to have a visit from my husband at 1PM and we usually go out for lunch then. One of the staff directed us to clear up the table, while she herself remained seated. Granted, she was another client’s one-on-one and either that client can’t or won’t clear up. I can’t without someone assisting me either and my one-on-one was nowhere to be found, but thankfully another staff helped me.

When my husband came to pick me up, he drove randomly. At one point, he asked me where we were going. “Where are we?” I asked. He replied we were at highway A50, headed northward, in the middle of nowhere. Zwolle was the closest bigger city, so we decided to head there. We went to Ikea, where we looked around a little, tthen had fries with chicken (for me) and meatballs (for him). Then we saw these really cute soft toys. My husband pointed out an orangutan, which I immediately decided to buy. My husband wants me to name him after the monkey king in The Jungle Book and he wanted me to look up the song on our way back to the institution. Not that I remember that movie. I mean, I’ve probably seen parts of it, but we only had public television at home when I was a child. I think the monkey is called Louis.

Finding My Way #31Days2022

Posted on by Astrid

Hi everyone. The first optional prompt for #31Days2022 is “way”. I thought of several titles for this blog post, but ultimately decided on this one. The rest just randomly flowed out of my fingers.

Only four days before I move to the new care home. I told my mother about it on Tuesday. Somewhat surprisingly, she didn’t react weird to the fact that I’m going to live on institution grounds. Not surprisingly, she did start talking to me about how I might be able to walk around grounds independently then.

I did, indeed, mention to the support coordinator and behavior specialist for the new home, when they came to assess my suitability for the home, that I may want to learn to take a little walk myself on institution grounds someday. Afterwards, my current assigned staff cautioned them against too high expectations. After all, I want to be “normal” pretty badly, but I still remain multiply-disabled in some significant ways.

I know that people who are “just” blind can learn to find their way around institution grounds quite easily. But I’m not “just” blind. For one thing, I am not even sure I could use my white cane in a manner that would allow me to detect obstacles safely, given my mild mobility impairment due to cerebral palsy. For another, due to autism-related executive dysfunction and other factors, my energy level varies greatly from one day to the next. So does my capacity to handle sensory stimuli. Consequently, I may be able to find my way for a short walk around grounds pretty easily one day and get hopelessly lost and frustrated the next.

I remember back when I was in the psych hospital, I voiced a similar wish to learn to take a quick walk around the building. An orientation and mobility instructor from the blindness agency came by, taught me a few times with very limited success. Before she was even finished teaching me, the staff decided it was my responsibility, so no matter my mental state, if I left the ward (even in a meltdown), no staff would come after me. I was then supposed to take my little walk, despite the fact that, in a meltdown, I wouldn’t remember where to go at all.

I know at least here in the Netherlands staff can’t legally restrain you once you’ve left an open ward, but that wasn’t the point, since I didn’t need restraining. Their point was that I was now somehow capable enough to find my way by myself and, if I wasn’t, it wasn’t their problem. This at one point led to my husband needing to drive over from the next town to take me back to the ward.

In a sense, I should know the new care home isn’t like the psych hospital, but I keep getting flashbacks. All I can hope for is that my current staff will do a proper handover.

Mutism or Manipulation?

Posted on by Astrid

When I was a teen, I’d often go mute whenever certain personal topics of discussion came up. My mental health was such a topic. Much as I wanted to speak, my mouth wouldn’t form the words I wanted to tell my teachers or other people who intended to help me.

Even though I felt intensely anxious, my silence was commonly viewed as an act of rebellion. A way of manipulating those around me into, well, I honestly don’t know what.

When my parents and high school tutor had finally agreed that I needed professional counseling – or rather, my tutor had convinced my parents of the need, I assume -, my tutor informed me that the counselor had to meet certain very specific requirements. He or she needed to know blindness, because, well, I’m blind. The second requirement, I can’t remember, but the third was that he or she had to be exceptionally intelligent. The reason for that one was the fact that I, too, was supposedly extremely intelligent. If the counselor wasn’t smart enough, my tutor explained up front, I’d outsmart them with my manipulation. By this, he meant my so-called refusal to speak.

To this day, I am still unsure as to what made him think my silence was an act of willful defiance. Of course, everyone manipulates others at times, but I am pretty sure my mutism wasn’t – still isn’t – part of it.

This post was written for today’s Word of the Day Challenge, for which the prompt is “silence”, as well as E.M.’s RWP, which is “rebellion”.

My Ideal Ways of Spending My Day

Posted on by Astrid

Hi everyone. I have been thinking about ways in which I would like to spend my days if I get to move to the main institution. Like I said yesterday, each client has their own day program, so they aren’t required to go to the day center by default. I also will keep my one-on-one support at least until December of 2023. In today’s post, I want to share my ideal ways of spending my days. These are things I might be able to implement should I remain here, but I’m dreaming big here and thinking of ways the institution could accommodate me too.

First, I would like to start my day in my room like I currently do. I don’t think I can handle eating breakfast in a group as of yet. That might change in the future. I would like to eat all my main meals in my room, but go to the living room for coffee breaks when I want to.

Ways I would like to spend my day, include crafting of course. I would really like to keep on doing my polymer clay work and maybe even sell it in the day center’s shop.

The day activities I am thinking the institution could help me meet my dreams with, are those related to sports and physical activity. I know the institution has a small swimming pool on grounds and I’d really like to use it. I’m not sure whether they might have exercise equipment too, like the type of equipment you’d find in a gym. If they do, I’d love to utilize that too.

The institution is in a rural estate area, so I’d love to go for walks on grounds. I’ll take my iPhone (by then, I might have a new one, who knows?) to take pictures of the beautiful nature.

I’ll hopefully at some point be able to take short walks on grounds on my own too. For that, I’ll need orientation and mobility training from the blindness agency, but I’m sure I can get that.

I may occasionally want to relax in a snoezelen® room. Then again, if I’m correct, I can keep my weighted blanket if I move within this care agency, so I might not even need a snoezelen® room.

I’ll probably also want to go to a day center every once in a while to socialize with other clients. The institution has three day centers I believe, but I’m pretty sure clients from the home I might go to won’t go to all three. That’s okay though, I’ll find out what suits me.

Early Memories of Physical Activity

Posted on by Astrid

A few months ago, I read on another blog about Carrie Underwood’s book Find Your Path: Honor Your Body, Fuel Your Soul, and Get Strong with the Fit52 Life. One of the aspects that immediately appealed to me in the book, are the journal prompts. Yes, duh, you know, I’m a sucker for journal prompts. However, Carrie Underwood’s journaling prompts are not just random one-liners, they’re deep questions. One of them is about early memories of physical activity. Today, I want to share my thoughts on this.

As a young child, I loved playing outside. I used to build sandcastles in the wooden sandpit my father had built, not even caring that the wood hadn’t been treated so it got moldy every once in a while. I remember telling you all the story of how my father used to call my Kindergarten friend, whose last name translates to Peat in English, “Kim Mud”.

When I got older, I loved learning to rollerskate. I remember joining an informal neighborhood rollerskating “club” led by the oldest of two girls who lived next door. She was my age and could rollerskate real good or so we all thought. I wasn’t nearly as good or even as good as my own younger sister, but who cared? I didn’t.

I got a large tricycle when I was about seven or eight because I couldn’t ride a bike due to my cerebral palsy. Not that I could safely ride a bike, given my visual impairment, but apparently the rehabilitation physician had no idea. I occasionally rode my tricycle, but preferred to walk around the neighborhood.

However, by age seven or eight, when I started to lose my vision, my physical activity level also started to decrease. I am pretty sure it’s more than just my vision though, but there’s no way to prove this as my parents stopped taking me to specialists around that age. I am considering asking my GP or the intellectual disability physician at the care facility for a referral back to rehabilitation medicine, because I want to learn to make the most use of the mobility I do have.

I did till my mid-teens love to sit on the swings. I’m not sure that counts, as it is a sedentary activity, but you do move your legs pushing yourself. I would go on the swings for hours on end. Now though, I get dizzy even going on the swings for five minutes at a time.

A thing I also did from toddlerhood until I moved out of my parental home at age nineteen, was this crawling-in-place movement while in bed. By the time I hit adolescence, my parents complained that I ruined the bed and made too much noise, but I continued to move in this way exactly until I moved to the independence training home. I could do this for hours on end too and I now realize it’s probably a form of autistic stimming.

Overall, I wasn’t physically active in most of the traditional ways. I wasn’t in sports as a child and P.E. was one of my least favorite classes. However, I can’t say I sat on my butt all the time. I didn’t even as an adolescent, though I probably was more sedentary then than I should have been.

How about you? Were you physically active as a child?

#WeekendCoffeeShare (August 20, 2022)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. Even though I was late having my last cup of coffee this evening, I’m even later writing this post, so sorry, no coffee left for you. We do have soft drinks though or you can have water or maybe I can make you a cup of tea. That being said, I’d advise against black tea, since it’s at least almost my bedtime by the time I finish this post. Oh wait, this is a worldwide gathering over virtual coffee or tea or whatever we like. Let’s have a drink and let’s catch up.

If we were having coffee, I’d start out by asking how your weather is. Ours has been good all week, with temperatures rising to 30°C on Tuesday and in the mid to upper twenties (Celsius) during the rest of the week. Some days, it was too hot and especially humid for walking, but other days, it was just the right temperature.

If we were having coffee, I would tell you I’ve been busy thinking of what to create for the fellow resident who has his birthday next Thursday. After all, originally I intended on creating a canvas with polymer clay cookie cutter shapes of a car and the letters of his name on it, but the cutters for the letters won’t work with polymer clay, because the inside parts of some letters are much shallower than the outline. I thought about buying different cutters, but my husband came up with the idea of glitter stickers. They had them at Hema, a department store here, or so he thought. Not at the one we were at today, so I ended up buying regular letter stickers. Thing is, these are much smaller than I’d intended. Besides, I’m not sure stickers will stick onto painted canvas. I’m probably just making a card with those stickers and then doing the polymer clay car in some other way.

If we were having coffee, I’d share that I’m quite discouraged where it comes to my possibly moving to another care home. I had a meeting with some people from the main institution for my care agency three weeks ago, but haven’t heard from them. Other than that, I found out yesterday that the only place the care consultant applied for me at is a senior citizens’ assisted living facility that happens to cater to the blind. In a way, I can see his point, in that my funding is based on blindness and, in this sense, an intellectual disability facility like my current one has to tweak stuff in order to accept me. That assisted living facility is probably the only place within an hour’s driving distance from Lobith that accepts blindness-based funding. Then again, other than them catering to the blind, I can see absolutely no reason why the place would be suitable. And honestly, them catering to the blind may in fact be a drawback, as it means I can’t use my blindness as an “excuse” to explain complicated difficulties of mine by, hence my needing to explain myself in detail. That really has caused me extreme problems of being overloaded in the past. I mean, it would be okay if the staff knew blindness and cerebral palsy and autism and emotional developmental dysfunction and all the issues that cause me to struggle greatly in real life, but as far as I’m concerned most of these don’t affect the elderly in particular.

If we were having coffee, I’d try to end on a positive note though by telling you I had a good time with my husband today. He was originally supposed to be here by 1PM, but got stuck in traffic and couldn’t be here till 2PM. He almost turned around, because we had a misunderstanding about it, but he eventually got here and then we drove to Enkhuizen. Enkhuizen is a town about 100km from Raalte, so halfway across the country. My husband wanted to have fish, but not here in the east, which was his excuse for driving there. Then we walked around the town center, going to Hema for those stickers I mentioned above. Then we drove back to Raalte, grabbing a McDonald’s on the way in Kampen. I had a Mexican style crispy chicken, which was huge and delicious but not overly spicy. We really want to be taking more day trips together.

How have you been?

My Favorite Color

Posted on by Astrid

A few days ago, or maybe it was even a few weeks, the daily prompt in my journaling app, Day One, was to write about your favorite color. I couldn’t think of what exactly to write at the time. Now, as I sit here and today’s Ragtag Daily Prompt stares at me, I just have to write.

Is my favorite color actually purple, you’d ask? Well, yes, it is one of my favorite colors and if I had to pick just one, it’d probably be this. I usually say I have multiple favorite colors, namely purple, blue and green. They all are represented in the six bottles of alcohol ink I ordered online earlier this week: three shades of blue, two shades of purple and a shade of greenish blue too.

Then again, with respect to clothes, I used to only wear black for many years. It was a statement, in my mind, but the statement never came across. I guess everyone thought it was just easier for me to match my clothing that way, being that I’m blind. And it was.

Now that I do wear colors, I have to say I don’t actually have anything purple in my wardrobe. I should really change that.

And I should get to crafting a purple unicorn ashtray for the male staff doing my one-on-one shifts once a week, who I overheard is leaving in October. Oh wait, he asked for a pink one. And polymer clay isn’t suitable for ashtrays anyway. But he’ll appreciate the humor.

Technophobia

Posted on by Astrid

Today’s topic for Sadje’s Sunday Poser is tech-phobia. Sadje describes having been encouraged to learn Linux for a while and having had a Macbook sitting around for several months now too, but both intimidate her. She asks us, and specifies that her question may be more relevant to those of us who didn’t grow up with modern tech, whether we’re tech-phobic.

I grew up with computers and got an Internet connection when I was fifteen. That’s relatively late for someone my age, but I attribute that to the fact that I’m blind. After all, my parents did have access to the Internet already, but my first private computer, or rather the Braille display that came with it, didn’t support Internet Explorer.

When I was fifteen, I acquainted myself with the Internet quite quickly, but still stuck to old-fashioned methods and platforms far too long. I mean, I had a DiaryLand diary until 2007, when I finally moved to WordPress. Currently, the fact that for this post, I’m still using the classic editor, is probably proof of the same. I think I’m quite old-fashioned when it comes to technology. I am rarely the type to try out new functions when they first come out, or even when they’ve been out for a while.

With respect to Sadje’s question of being overwhelmed by new technologies, such as smartphones, I can only answer in the affirmative. Of course, again, this is complicated by the fact that I’m blind. I mean, a regular touch screen can’t be worked by a blind person, so it was no wonder I felt hugely incompetent when my husband tried to guide me hands-on to send a text message on his phone when I was about 29.

I was nearly 31 when I decided I wanted to learn to use a smartphone after all. Thankfully, a blind person who was also a qualified computer trainer for the visually impaired lived in my town. He came by the psych hospital to introduce me to the iPhone. He allowed me to use his iPhone to practise on during our introductory lessons, because of course if I couldn’t learn to use an iPhone there was no point in me buying one myself. Eventually, I not only was found to have the skills necessary to learn, but I mastered the use of the iPhone in half of the amount of course time he’d originally thought I’d need.

Since starting to use an iPhone, I have overcome some of my technophobia, but not all of it. Like I said, I still dread the WordPress block editor.

I’m also somewhat anxious about possibly making the transition from touchID to faceID on a phone. I know, I don’t have to, as Apple released the third generation iPhone SE last March, but with the fact that I now have a second generation SE, it just doesn’t quite cut it, honestly. For this reason, I’m really looking forward to the models going to be released this fall. Then again, if I can’t get faceID to work for me, this might be a lot of money gone to waste (unless I find out soon enough and can return the thing).

I’ve also been thinking of buying an Apple watch. That’s less of a risky investment than the faceID iPhone, as firstly they’re less expensive and secondly it’s not as essential (yeah, I consider my phone to be essential now). Both of these pieces of technology though induce my technophobia. But they’re both also really cool.

Poem: What Color Is the Sun?

Posted on by Astrid

I wonder
What color is the sun?

Is it red like fire,
Shooting flames across the sky?

Is it orange like the fruit,
Splashing its rays all around?

Is it yellow like a sunflower,
Fully blooming in midsummer?

Then again, how do I know
What these colors even mean?
Fire isn’t red or so I’ve heard
A sunflower’s heart and seeds are brown

As I look up to the sunset
My eyes wide open
I see nothing
Light nor darkness

And I wonder
What color is the sun?

This poem was written for this week’s Friday Writings, for which the optional prompt is “sunset”. I’m also joining dVerse’s OLN.