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.

Technology and Its Usefulness for People With Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone. I am back with my letter T post in the #AtoZChallenge. Today, I want to talk about technological advances and their usefulness (or lack thereof) for people with intellectual or developmental disabilities.

There exist a myriad of technological devices to presumably help people with intellectual or developmental disabilities. Some include alternative and augmentative communication (AAC) devices. While these are not for everyone, some people definitely benefit from them. Some of these technologies require a special device, but there is an increasing number of AAC apps available for conventional smartphones and tablets.

Other technologies are used to help people with more severe intellectual or developmental disabilities have different sensory experiences. For example, there’s a thing called the CRDL (pronounced “cradle”), which can be used by a disabled person along with their caregiver. When the device is touched in various ways, it produces different sounds and if I’m correct even vibrations.

Other pieces of technology merely help a person to relax, such as the InmuRelax, a sort of pillow which produces a soundscape when held in order to calm people during the night. Having used the Inmu a few times, I can say I prefer my music pillow, which is far cheaper.

Then there are of course interactive “pets”. These are not stuffed animals and should not be treated like toys, so people with severe or profound intellectual disabilities are probably not suited to handle them. Rather, they are electronics with some fur around them to make them look like real-life cats or (small) dogs, which people can then stroke or cuddle with gently. These interactive animals are mostly intended for people suffering from early to mid-stage dementia rather than for the intellectually disabled, although I’ve seen them being well handled by more capable intellectually disabled people who realize these are like pets, not toys.

Lastly, there currently is a research project going on with “social robots” in long-term care for people with intellectual disabilities. These robots could be programmed to, for instance, remind clients to take their meds, do certain tasks, or they could even ask them questions. It is kind of intended that the robots would become a “buddy” to the intellectually disabled person. I honestly cringe at the idea. Not the reminders or even if the robot woke me up with a cheery “Good morning, Astrid, what would you like for breakfast?”. I am reminded of a time my psychologist, back in like 2013, asked me whether I was okay with a robot doing my morning routine. When I said “Hell, no!”, she saw this as a sign of dependence. I currently start my day on my own anyway, so whether it’s my vibrating, beeping Apple Watch waking me up or a robot, I don’t care. And as for the reminders, I’ve actually thought about asking my staff to help me learn to use a day scheduling app. However, the cringe-worthy thing for me is the “buddy” part. Yes, I know long-term care needs to be cut, but a robot isn’t going to replace human interaction if you ask me.

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.

Quality of Life As It Relates to Intellectual and Developmental Disabilities #AtoZChallenge

Posted on by Astrid

Hi everyone and welcome to my letter Q post in the #AtoZChallenge. Today, I want to talk about quality of life. This is a concept often used in medical ethics to determine whether someone’s life is “meaningful”, in this sense, “meaningful” enough for life-saving treatments. For instance, when I was a baby and sustained a brain bleed, my parents wondered whether I would later have sufficient quality of life for life support to make sense.

People with intellectual and other disabilities are, in this respect, often seen as having a lower quality of life regardless of their subjective experience compared to people without disabilities. After all, many people with intellectual disabilities cannot work, live independently or have long-term romantic relationships. That is, not in the same ways that non-disabled people can.

However, if we judge people’s quality of life by their earnings, their ability to live independently without any supports, and non-disabled people’s ideas of what constitutes a “normal” long-term romantic relationship, we are discriminating against rather than affirming people with disabilities.

Another way of employing the concept of quality of life is to look at what exactly brings meaning to each individual’s life, rather than to measure how meaningful each life is by how well-accomplished an individual is. This way, quality of life is useful even for people with profound intellectual and multiple disabilities. The Dutch Center for Consultation and Expertise has created a questionnaire on quality of life, which should be used as a stepping stone for first determining a person’s quality of life and then ways in which it can be improved.

For people with profound intellectual and multiple disabilities, quality of life really is often determined by tiny things. I mean, even for them self-determination and independence might be underlying values, but these are reflected in very small things. For example, I read about a discussion on the quality of life questionnaire between a family member and staff of a profoundly and multiply disabled person. The topic concerned his daily walks. One of the people involved said the client probably preferred to be taken on walks at least twice a day, while the other said he seemed not to like his walks at all. The difference turned out to lie in the way the people approached the walks: the person with whom the client didn’t seem to want to walk, pushed the wheelchair at a rapid pace without stopping, while the other walked slowly and took frequent breaks to show the client his surroundings. This shows how quality of life may be as simple as a slower walking pace.

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.

Older People With an Intellectual Disability #AtoZChallenge

Posted on by Astrid

Hi everyone. I’m halfway through the #AtoZChallenge and this means I’m getting a bit weary of it. Today’s post for the letter O is going to be short I think, as I covered issues around cognitive decline in older people with intellectual disabilities already yesterday. However, today I want to focus on aging in general.

People with intellectual and developmental disabilities are at increased risk of developing chronic health conditions at a younger age compared to those without disabilities. These risks sometimes vary depending on the cause of someone’s intellectual disability. For instance, people with Down Syndrome, like I said yesterday, are at increased risk of developing early-onset Alzheimer’s Disease. People with Fragile X Syndrome are at increased risk of heart problems. People with cerebral palsy (which isn’t in itself an intellectual disability, but can be comorbid with it) are at increased risk of developing type 2 diabetes, high blood pressure, stroke and various issues related to their mobility impairment, such as bone problems.

I once heard my staff at my previous care home say that, for people with significant intellectual disability, you need to add at least ten years to their chronological age to get their biological, health-related age. Of course, this doesn’t mean no severely intellectually disabled person can live into their eighties or even nineties – several at the care home next door did. However, it’s a rarity.

People with mild intellectual disability even more so than those with more severe disabilities often live into old age. This poses challenges to the healthcare system as well as causing these individuals dual risk of discrimination, based both on their age and their disability. Additionally, some older adults with mild intellectual disability, who may or may not have been identified as such, are caregivers to their even older parents.

Some people with unidentified mild intellectual disability end up in nursing homes as they age, where staff are not equipped to support them with their disability-related needs. Here in the Netherlands, thankfully, the intellectual disability care system is quite good, and most agencies have homes for older adults.

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.