Visibility of People With Intellectual and Developmental Disabilities in Mainstream Society #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m really late writing my letter V post in the #AtoZChallenge. I am not too excited about today’s topic either, but that might change as I write. I just came up with it two minutes before opening the new post window on WordPress. Today, I want to talk about visibility of people with intellectual and developmental disabilities in mainstream society.

Until the mid-1990s, individuals with intellectual disabilities were routinely institutionalized on grounds like mine, sheltered away from the general public. While there are advantages to this, it did mean the general population hardly saw any individuals with intellectual disabilities, especially not adults or those with more severe disabilities.

In the 1990s, institutions were often demolished altogether and individuals with even the most severe disabilities were moved into the community. This, however, did little to help society be more accepting of people with intellectual disabilities.

Now, with “suited education”, which was introduced in the mid-2010s, individuals with disabilities are encouraged to attend mainstream education if at all possible. This means that more people with mild intellectual disabilities and other developmental disabilities, who would otherwise attend special ed, are now in regular classes.

I, having been forced into mainstream education with very few accommodations, am not a fan of “suited education”. My opinions on deinstitutionalization are mixed. While I do feel that we need to be allowed to be visible in mainstream society, I do not feel that this is a case of the disabled needing to assimilate or be “normalized”. Truthfully, I do not feel that we need to prove our right to exist beyond the margins. That being said, the reality is that society doesn’t want us. At least, it doesn’t want me, a high support needs autistic and multiply-disabled person. When I still ventured out into the world on my own, I had just a little too many encounters with the police that often weren’t pleasant.

Self-Injurious, Aggressive and Otherwise Challenging Behavior in People With Intellectual or Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter S post in the #AtoZChallenge. Today, I want to talk about self-harming, aggression and other challenging behavior in people with intellectual and developmental disabilities.

Some people erroneously believe that challenging behavior is an intrinsic part of being intellectually disabled. It isn’t. Neither are self-injurious or aggressive behaviors an intrinsic part of autism. These behaviors, however, do happen more often among people with intellectual and developmental disabilities than among non-disabled people.

The causes and reinforcing factors of challenging behavior are often complex. And though I mention them in one sentence, no, a reinforcing factor is not the same as a cause. Furthermore, if removing a reinforcing factor seems effective at reducing or eliminating the undesired behavior, this does not mean the problem is all solved. After all, especially people with intellectual and developmental disabilities who are at a lower emotional level of development or who struggle with communication are at risk of suffering in silence.

It may be tempting to presume motivators behind challenging behavior that are commonly believed to apply to typically-developing young children, such as attention or “getting their way”. Presuming these motivators, even correctly, is not taking into account the fact that people with intellectual and developmental disabilities are firstly not (necessarily) young children. Secondly, you need to realize that, like all people, they have a need for autonomy and attention and many, especially those living in institutions, are heavily lacking in both.

There are, of course, many other contributing factors to challenging behavior. For example, physical discomfort or pain may be a factor for some, especially those with profound intellectual or multiple disabilities. Others may have experienced trauma and struggle with attachment. I for one have relatively mild attachment issues (at least as apparent in my behavior) compared to some of my fellow clients, hence why I always get stuck with the temp workers. This of late has been causing me a lot of distress and has led to significant challenging behavior, which unfortunately for me isn’t significant enough to warrant any changes. Then again, if it did, those changes might well constitute restrictive measures.

Restraints and Other Restrictive Measures in the Dutch Care System #AtoZChallenge

Posted on by Astrid

Hi everyone. Today, it’s time for my letter R post in the #AtoZChallenge. I didn’t know what to write about for this post, so I looked at some books for inspiration. Then, the topic of restraints came up. This is quite a controversial one and sadly restraint and other restrictive measures are still commonly used here in the Netherlands. At least here at my current care home.

In the Netherlands, in 2020, the Care and Force Act replaced the law on exceptional admissions to psychiatric hospitals that previously regulated restrictive measures. Under the old law, only those involuntarily committed to care facilities or psychiatric hospitals could be subjected to restrictive measures against their will. This was not to say people weren’t pressured into consenting to restrictive measures. For instance, when I had been at the locked psych unit for a few months in early 2008, I was significantly dysregulated. My doctor told me she was implementing seclusion and, “if it doesn’t work, we’re going to file for involuntary commitment”. She should have said “if you don’t consent”, but I had no idea I even had a right to consent.

Under the Care and Force Act, anyone receiving care can be subjected to restrictive measures, which are euphemistically and rather incorrectly called “involuntary care”. Yes, even people receiving care in their own homes. And like I said “involuntary care” usually isn’t care at all, but are measures to restrict someone’s freedom, often in the absence of appropriate care. For instance, if a person with dementia lives independently, they can be involuntarily prevented from entering their own kitchen if they’re a risk of leaving appliances on.

I don’t know the exact criteria for people to be subjected to restrictive measures. It has to do something with risk of significant detriment to the client or others. I was, at my old home, subjected to some restrictive measures. For instance, several doors were locked at night because I would enter those areas (eg. the kitchen) and be a danger to myself there. Here at my current home, the door to the living room and all entrances are locked at night anyway and have been from before I came here. I do know at least one fellow resident is locked up in her room at night. This, to me, feels a bit unfair, particularly because there’s no night staff directly available and the ones in the main building usually just tell us to go back to sleep when we press the call button.

Restraint specifically – restricting someone’s physical movement – is also commonly used here. I, thankfully, have only been physically dragged by several people a few times and was never shoved to the ground or forcibly held in position.

The author of the book I read, which is a parent’s guide to autism, recommends not reacting to a disabled person’s meltdown at all unless in such a way absolutely necessary to keep them and others safe. I am not sure I agree, since honestly I don’t feel that many people with developmental disabilities do have the self-regulation skills necessary to calm themselves. In my experience, “crying it out” will not teach them those skills, but will teach them that you’re not available. In the same way, I honestly don’t feel that someone will actually have a meltdown just so they can be restrained, as the author claims. I, honestly, have never felt that having my movement restricted was comforting.

People First?: Issues Surrounding the Language of Disability #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter P post in the #AtoZChallenge. I wasn’t really sure what to write for today’s letter and was still feeling a bit unmotivated, until I decided on a topic and now I’m excited to share. Today, I am going to talk about the language surrounding disabilities, particularly of course intellectual and developmental disabilities. I kind of provocatively titled my post “People First?”, because that, without the question mark, is often used as an argument for so-called destigmatizing language.

Which language, to be honest, isn’t destigmatizing at all. I mean, of course it is good that the term “mental retardation” got removed from the DSM (in 2013!). However, when you refer to someone as an “IB’er” (shorthand for “intensive support user” in Dutch), with “intensive support user” being code for a person with significant challenging behavior, it isn’t destigmatizing at all. And no, in my opinion, changing things around to person-first language (“person with intensive support needs”), doesn’t necessarily remove the stigma unless it is accompanied by an added awareness that someone is more than their support needs. As a side note, the only time I’ve heard the term “IB’er” used in reference to me, was by my staff saying I am not one, by which they mean I don’t need the harsh approach my fellow clients apparently need. I mean, it can’t really mean I don’t have challenging behavior, right?

With respect to people with intellectual disabilities in general, person-first language is commonly preferred by professionals. Whether this is less stigmatizing, I doubt. To be honest though, the abbreviations used in job descriptions and care profiles, usually don’t employ person-first language at all. For example, a treatment facility for people with mild intellectual disability and significant challenging behavior is referred to as a “severely behaviorally disturbed, mildly intellectually disabled” (“SGLVG” in Dutch) facility.

Whether people with intellectual disabilities / intellectually disabled people themselves prefer person-first or identity-first language, I do not know. Most autistic people prefer identity-first language, reasoning autism is an integral part of who they are. I, personally, don’t really have a preference. What matters to me is not the language you use to describe me, but the way you treat me. In this respect, whether you refer to my current care home’s population as having intensive support needs or displaying challenging behavior or as behaviorally disturbed, I do not care. The euphemistic approach here (“intensive support needs”), after all, does not do anything to change the staff’s attitudes towards us.

Mental Health in People With Intellectual or Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone. I once again didn’t have time for writing my letter M post in the #AttoZChallenge yesterday, because I was at the countrywide cerebral palsy day and then at my in-laws and was too tired once I came back to the institution to write my post. Let me for this reason write it today. For my letter M post, I am going to write about mental health as it relates to people with intellectual and developmental disabilities.

People with an intellectual disability are more likely to have mental health problems, including severe mental illness, than the general population. However, in the general psychiatric system, these people are not usually adequately helped. This means that early recognition of people with an intellectual disability is very important. Here in the Netherlands, some psychiatrists actually advocate for administering a simple screening tool for mild intellectual disability to each person coming into care with significant mental health issues. That way, if a person is identified as potentially having an intellectual disability, treatment can be adapted for them.

Other issues in mental health services for people with intellectual disabilities include the need for more trauma-informed care, since intellectually disabled people are at increased risk of being victims of abuse. Of course, trauma treatment, as well as therapy in general, needs to be specifically adapted to meet the intellectually disabled person’s needs. With EMDR, this is possible even with severely intellectually disabled people. Other forms of treatment, such as dialectical behavior therapy and schema-focused therapy, are, with some modifications, useful for people with mild intellectual disability.

In most countries, people with mild intellectual disability are usually seen by general psychiatric providers. However, here in the Netherlands, at least some mental health agencies have specialized teams or even an entire separate agency serving those with mild intellectual disability and co-occurring mental health issues.

Though autism as a co-occurring developmental disability with mental illness really poses some of the same challenges as does intellectual disability, this is not widely recognized. I mean, most mental health agencies here do have autism teams, but these are often dedicated to diagnosis and short-term psychoeducational support of autistic adults. There are a few specialist treatment centers for autistics with highly complex needs due to comorbid mental illness and/or severe autism, but these are inpatient units with long waiting lists. As far as I’m aware, there hardly seems to be any outreach-based, long-term treatment specifically for autistics with complex care needs.

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.

“Know-It-All”: Challenges of More Verbally Capable People With Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter K post. I really have no idea where this is headed. I seem to struggle with the letter K each year. Today, after some thought and looking through my various books on developmental disabilities, I decided on “know-it-all”. This was in an A-Z guide on autism, not intellectual disability.

Indeed, individuals with an intellectual disability don’t usually look like “know-it-alls”. This is more like the stereotypical description of an Asperger’s style autistic. However, what I want to talk about today is the risk of overestimating people with intellectual and developmental disabilities based on their verbal abilities.

An example I once heard about was of a young woman assessed as having a moderate intellectual disability. When she met new people, she’d say: “Oh, I don’t know that person, let me go up to them and introduce myself.” This language is quite advanced. However, as it turned out, it was all script-based and she really had a severe intellectual disability. Due to her intellectual disability not being recognized enough, she was chronically overloaded, which led to challenging behavior.

Another example, I read about when researching communication issues for my letter C post. A person who could read a pharmaceutical handbook, refused a certain medication because it could cause nausea. When his doctor inquired whether the person knew what nausea felt like, it turned out he had no idea.

I, for one, am thought of as quite the know-it-all too. Indeed, though I do have an at least average verbal IQ, I get chronically overestimated due to the fact that I can talk up a storm.

Unfortunately, I for one do overestimate my own understanding too. This can be quite hard, because people often ask me to inquire rather than assume, but when I don’t know that I’m making assumptions, it’s hard to decide to inquire about them instead.

IQ As It Relates to Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter I post in the #AtoZChallenge. Today, I want to write about IQ. IQ, a measure of intelligence, is one of the determining criteria for intellectual disability. So how is it measured in the general population and in people with an intellectual or developmental disability?

The concept of IQ dates back to the 19th century, when early psychologists first started developing tests for measuring intelligence. These were based on the idea that intelligence increases as a child grows up, so they were based on skill sets a child of a certain age should be able to master. IQ was then decided to be intellectual age divided by chronological age multiplied by 100 (to get the idea that a normal IQ is 100). For example, if a child aged five masters the skills of a three-year-old, their IQ was 3 / 5 * 100 = 60.

This is problematic, because among other things it does not allow for testing of adults and does not allow for variation on different skill levels. It was therefore abandoned in favor of a norm-based IQ testing system. Both the Wechsler scales (most commonly used in Europe) and the Stanford-Binet test (which is used more often in the U.S.), are norm-based, with an IQ of 100 being average and standard deviations of 15 (Wechsler) or 16 (Stanford-Binet) determining differences such as intellectual disability and giftedness.

I am familiar only with the Wechsler scales. There is a preschooler, a children’s and an adult version of these. The children’s and adult versions at least contain non-verbal as well as verbal tasks. Until some years ago, these were divided into categories of verbal and performance IQ. I, for one, can only have my verbal IQ tested. This refers to skills such as math, vocabulary, working memory, information (general knowledge questions), etc. The performance/non-verbal tasks include patterns, object recognition (where you see an object with part of it missing and need to identify it), etc. I am pretty sure that, if my performance IQ could ever be tested, it’d be significantly lower than my verbal IQ, as is commonly the case with verbally capable autistics.

On the other hand, nonspeaking or partly verbal autistics often find their intelligence being underestimated because they struggle on verbal IQ tests or cannot take them at all. For this reason, for nonspeaking autistics, a non-verbal IQ test may be more appropriate.

I did honestly find that the adult Wechsler scale was quite difficult even for me, a person with a high level high school and some college education. I honestly doubt those with a moderate intellectual disability will even be able to answer the simplest of questions on it. For example, the first math question was something like: “John had six apples, Peter had two apples, how many apples did the two of them have combined?” Interestingly, the first vocab question was to define “apple”. And no, in Dutch, there is no ambiguity (in case people are thinking “the brand that makes iPhones”). However, the correct answer was “fruit”, which I struggled to come up with, as that’s not a definition, more like a categorization.

Genetics of Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone. I was at my and my husband’s house in Lobith yesterday and, though I fully intended on writing my letter G post while there, I didn’t get to it. Rather than give up on the challenge altogether, I’m going to make up for it today by writing my post now. For my letter G post, my topic is “genetics”. It’s not a topic I know all that much about. I mean, I know the basics of heridity through dominant and recessive, autosomal and X-linked genes. I also know a little about trisomies such as trisomy 21. However, I really don’t think I know much beyond high school biology. For this reason, I am going to provide a very basic introduction to the genetics of intellectual disability based on the info I could find online.

First, of course, not all intellectual disabilities are caused by genetic factors, or solely by genetic factors. Environmental factors such as birthweight and gestational age (ie. whether the child was born prematurely), exposure to substances such as medications or drugs during the fetal period, etc., can contribute to or even cause an intellectual disability too.

That being said, even if the cause of someone’s intellectual disability is (most likely) genetic, it is not always known. There are thought to be approximately 2,500 genes that contribute to intellectual disability, but about half of these haven’t yet been identified. Due to genome and exome sequencing, however, the diagnosis of intellectual disability-related genetic mutations is making advancements.

There are some genetic intellectual disability syndromes that run in families, such as Fragile X Syndrome. However, the majority of individuals with a genetic mutation causing their intellectual disability, did not inherit it from their parents. This means that a future child born to the same family, isn’t at increased risk of being intellectually disabled.

Why, then, would you want to know whether there’s a known genetic cause? Well, a recent article I found on the Dutch Center for Consultation and Expertise website, explains it very well: knowing what syndrome a person has, makes the person’s perspective clearer and may provide ideas for future medical or behavioral intervention. For instance, a doctor cited in the article talked about a girl with a particular genetic mutation causing her intellectual disability which he knew also causes leukemia. The doctor mentioned this to the patient’s primary care physician, who remembered this two years later when the girl complained of significant fatigue. This allowed her to be treated early for what turned out to be leukemia indeed. Another example is the fact that people with Phelan McDermid Syndrome usually experience bipolar-like mood dysregulation in adolescence, which, if not treated, leads to loss of skills. Since these people often have severe intellectual disability, their behaviors could easily be misinterpreted if their syndrome isn’t identified.

Of course, there remains a significant portion of the intellectually disabled population for which no genetic syndrome can be identified. For those with milder intellectual disability and no clear physical features, genetic testing may not even be routinely done. Same for those with other developmental disabilities. In my own case, the possibility of genetic testing was mentioned in my application for one-on-one support, but was immediately dismissed because it’d be “too much for me to handle”. Not that it was ever discussed with me. For all I knew, there was no need for it in my case as my conditions are all attributed to premature birth, with the exception maybe of autism, and people who are just autistic don’t get genetic testing done either.

Functioning Levels, Support Needs and Other Ways of Classifying Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone. For my letter F post, I am going to talk about functioning levels and related ways of classifying the severity of intellectual and developmental disabilities. Most of these are highly controversial within the developmentally disabled community itself.

First are functioning levels. These can be described in several ways. With respect to autism, there is of course high-functioning and low-functioning. The distinction between these is not at all clear: does high-functioning mean an at least average IQ, the ability to speak or the presence of relatively few autism symptoms? In any case, these are often very confusing.

An alternative approach suggested by some autistics is to speak of high, moderate or low support needs. I, according to this classification, would be considered as having high support needs even though I’m considered “high-functioning” in at least two of the aforementioned ways (speech and IQ).

Some people have proposed yet another classification, not based on support needs or apparent functioning, which are after all based on a (presumably neurotypical) professional’s assessment, but on masking. Masking is the ability to hide one’s disability-related symptoms from the public. In this sense, “high-functioning” individuals are considered high-masking.

In intellectual disability without co-occurring autism or other neurodivergencies, functioning levels are slightly more useful than in autism, in that they are based on IQ and level of adaptive functioning. In this classification system, someone with an IQ between 50 and 70 (or 85 in some countries, such as the Netherlands) is considered mildly intellectually disabled. Someone with an IQ between 35 and 50 is considered moderately intellectually disabled. An IQ between 20 and 35 puts someone in the severely intellectually disabled range, and an IQ below 20 puts someone in the profoundly intellectually disabled range. That being said, having had my IQ tested many times, I wonder how well IQs below like 50 can be measured on standard intelligence tests. I guess for more severely disabled people for this reason, professionals prefer the term mental age. Like I said yesterday, this is considered discriminatory.