Neurocognitive Disorders: Dementia in People With an Intellectual Disability #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter N post in the #AtoZChallenge. Today, I want to talk about cognitive decline and neurocognitive disorders – dementia in particular – as they relate to people with intellectual disabilities.

People with an intellectual disability are at increased risk of developing dementia at a relatively young age compared to the general population. Particularly Down Syndrome is a significant risk factor for early-onset dementia, especially Alzheimer’s Disease. Autopsies discovered that almost all individuals with Down Syndrome show physiological signs of Alzheimer’s by the age of forty. This, however, does not mean all individuals will actually have the symptoms of dementia.

In people with intellectual disability not due to Down Syndrome, the risk of developing dementia is also increased. Risk factors in this population include epilepsy, head injury, sensory impairments, poor mental or physical health, as well as an increased prevalence of general risk factors such as poor diet and lack of exercise.

With the higher risk of developing dementia for individuals with intellectual disability, it is all the more important that it be recognized early on so that effective support strategies may be implemented. This is especially hard in more severely intellectually disabled people. I mean, I remember a woman with Down Syndrome being assessed for dementia at my previous care home and the staff commented about the screening tool: “Does she know the name of her support coordinator?” The staff snorted here, as the woman couldn’t even speak. It is still important, however, to recognize when even the most severely disabled people might be declining cognitively.

Signs of possible dementia in people with intellectual disability include increased irritability, passivity and withdrawal, no longer wanting to go to daily activities and increased difficulty with activities of daily living such as self-care. However, these can also be signs of other underlying medical or psychosocial issues.

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.

Justice: Issues Facing People With Intellectual Disabilities in the Criminal Justice System #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m once again really late writing my #AtoZChallenge post and actually considered not writing it today, but that felt rather off. For my letter J post, I am writing about issues facing intellectually disabled people in the criminal justice system, be it as victims, witnesses, suspects, defendants or incarcerated individuals.

There are many issues for these individuals. For instance, people with an intellectual disability are far more likely to be victims of crime than the general population. For violent crimes, they are twice as likely to be victimized, whereas for other crimes, the ratio is even higher. For instance, people with an intellectual disability are easily exploited.

That being said, crimes against people with intellectual disabilities are not prosecuted as often as crimes against non-disabled people. The reason may be that intellectually disabled people aren’t viewed as credible witnesses.

When people with an intellectual disability are themselves suspects, they often do not get appropriate supports and reasonable accommodations to allow them a fair trial. In the UK, people with an intellectual disability can access an “appropriate adult”, who isn’t their lawyer but whose job it is to make sure their disability is accounted for during involvement with the justice system. This as far as I know does not (yet) exist in the Netherlands or the United States.

Many individuals particularly with a mild intellectual disability end up in regular correctional facilities because either their intellectual disability wasn’t recognized during trial or they don’t qualify for an insanity defense. Unfortunately though, the regular prison system can’t really accommodate these individuals. One of the student staff here used to work in correctional facilities and this motivated her to retrain as a support worker.

In the United States, people with an intellectual disability are exempt from the death penalty. However, it varies by state how it is determined whether a person actually has an intellectual disability. In some states, the jury decides on this, whereas in others, it’s the judge. Either way, I feel this is discriminatory, as neither a lay jury nor a judge are trained to recognize intellectual disability. Now I oppose the death penalty anyway, but I feel this lack of proper identification could affect individuals not at risk of execution too.

The Wednesday HodgePodge (April 12, 2023)

Posted on by Astrid

Hi everyone. I’m joining the Wednesday HodgePodge yet again. Here are Joyce’s questions and my answers.

1. April 13th is National Scrabble Day…are you a fan? Do you enjoy word games in general? What’s an eight letter word that tells us something about your life currently?
I don’t like Scrabble, because eventually the board becomes too crowded for me to understand. I do love other word games. There was a game I used to enjoy on the iPhone called 7 Little Words. That is, until they introduced a special “screen reader mode” that was just slightly less inaccessible than the rest of the game had become from then on.

An eight-letter word that says something about my life… clueless. I’ll leave it at that.

2. Do you have a junk drawer? Is it full? Do you know what’s in it? What’s in it?
Not really. Oh wait, the upper drawer in my desk probably counts, as it does have lots of miscellaneous stuff in it, particularly parts that belong to my various gadgets, such as my original Apple Watch wristband (well, only the lengthening half of it, as I recently discovered). I do know of most things in it, but not everything.

3. When does time pass quickly for you? When does it pass slowly?
It passes quickly when I’m engrossed in writing a blog post or in a good book or especially when crafting. Slowly when I am waiting on something.

4. These eight vegetables are in season during spring-asparagus, broccoli, cabbage, carrots, celery, collard greens, garlic, herbs. What’s your favorite? Any on the list you refuse to eat? Last one on the list you ate?
Wasn’t this a question last year too? Anyway, my favorite is broccoli. There aren’t any on the list I refuse to eat altogether, but I really don’t like celery. The last one of these I ate was a carrot this afternoon with my lunch.

5. What’s the oldest thing you own? Tell us about it.
I don’t think I own anything old, so I’ll have to guess either my stuffed whale which I’ve had since I was a baby or my desk. Though I’ve owned my desk for only like 17 years, it’s secondhand.

6. Insert your own random thought here.
Thank goodness for a bit of sunshine inbetween the rain today. I went for a walk this afternoon and then stopped by the day center cafeteria to have a hot cocoa and a muesli bar, the latter of which my staff treated me to out of the vending machine. Yum!

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.

Historical Perspectives on Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter H post in the #AtoZChallenge. Today, I will discuss some of the history of intellectual and developmental disabilities.

Throughout history, people with intellectual and developmental disabilities were feared and stigmatized. However, it wasn’t until the mid-19th century that societies in the western world started taking action to take care of them outside of family homes. At first, institutions were more or less educational, based on the idea that people with intellectual disabilities could learn too. However, towards the end of the 19th century, there interestingly was a shift away from educating towards warehousing. This was when large-scale state institutions were built.

An interesting turn involved the work of Wolf Wolfensberger around the mid-20th century. He believed in “normalization”, a term still used today. In fact, I saw it in the job description for support workers at my home. To be clear, I cringe at this idea, because who decides what is “normal”, anyway? Of course, the idea really should be to value intellectually disabled people’s contributions to society as much as non-disabled (“normal”) people’s. However, I personally find this term used when I am refused a plastic coffee mug to drink from, because a ceramic mug is more “normal”. For those not aware, due to my mild physical disability, I find a plastic one easier to hold.

I can’t end this post without touching on the Nazis’ treatment of the intellectually disabled. Initially, they were open about their eugenic “euthanasia” program, using intellectually disabled people to test mass murder techniques on they could later use on other groups such as the Jews. When families and other people started protesting too much, they went on in secret. The usual methods of killing disabled people in this later stage were starvation and medication overdoses.

I also should really touch on the ever-changing terminology surrounding intellectual disabilities. In the early 20th century, people with an intellectual disability were called “feeble-minded”. Then came terms like “idiot”, “imbecile” and “moron”, referring respectively to people with a severe/profound, moderate and mild intellectual disability. Then came “mental retardation”, which wasn’t actually removed as a term from the Diagnostic and Statistical Manual of Mental Disorders (DSM) until 2013. The current term in DSM-5 is intellectual developmental disorder, but intellectual disability is most commonly used.

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.