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

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.

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

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.

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

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.

Book Review: Where Has Mummy Gone? by Cathy Glass

I bought Where Has Mummy Gone? by Cathy Glass on Kindle right when it came out early last month, but didn’t finish it till yesterday. Not because it wasn’t a good book, but because I struggled to make time for reading. Today, I’m reviewing this foster care memoir.

Synopsis

The true story of Melody, aged 8, the last of five siblings to be taken from her drug dependent single mother and brought into care.

When Cathy is told about Melody’s terrible childhood, she is sure she’s heard it all before. But it isn’t long before she feels there is more going on than she or the social services are aware of. Although Melody is angry at having to leave her mother, as many children coming into care are, she also worries about her obsessively – far more than is usual. Amanda, Melody’s mother, is also angry and takes it out on Cathy at contact, which again is something Cathy has experienced before. Yet there is a lost and vulnerable look about Amanda, and Cathy starts to see why Melody worries about her and feels she needs looking after.

When Amanda misses contact, it is assumed she has forgotten, but nothing could have been further from the truth…

My Review

The subtitle listed on Amazon for this book is “A Young Girl and a Mother Who No Longer Knows Her”. From this subtitle, I already guessed that Amanda, Melody’s mother, might’ve suffered some form of brain damage. Perhaps she was in an accident and had gone into a persistent vegetative state? The thought of dementia also crossed my mind, but I dismissed this when I found out early in the book that Amanda was only 42.

Despite the fact that I had some inkling of where this book might be headed, the twists and turns did surprise me. It was heartbreaking to read about Amanda’s decline. The book ended on a really bittersweet note.

I loved Cathy Glass’ narrative style. I developed a liking for each of the characters. Amanda, of course, elicited pity with her illness, but I also got to appreciate the attempts she’d made at caring for Melody before she was taken into foster care. Cathy maintains a mostly unbiased yet positive attitude throughout the book. I thoroughly enjoyed the book, despite its emotive subject matter.

Book Details

Title: Where Has Mummy Gone?: A Young Girl and a Mother Who No Longer Knows Her
Author: Cathy Glass
Publisher: Harper Element
Publication Date: September 6, 2018