Asserting My Rights

Posted on by Astrid

Hi everyone. Yesterday’s WordPress daily prompt was interesting. It asked us to explain what freedom means. I was originally inspired to write a post about human, civil and disability rights as they apply to my situation, but got distracted by family matters.

After last week being dragged to my room by both arms by two staff for the crime of being in the living room outside of my allocated one-on-one time and appearing (slightly) in distress, I decided to contact the client confidante on involuntary care. I remember writing about the Care and Force Act when it was just being introduced and being offended at the fact that it applies to anyone receiving care due to an intellectual disability (including acquired brain injury) or neurocognitive disorder (like Alzheimer’s, Huntington’s, etc.), not just institutionalized people. Like, under the old law, you had to be detained in an institution first before anything could be done against your (or your guardian’s in the case of being incapacitated) will. Now even those still living independently can receive “involuntary care”. And just for clarity’s sake: “involuntary care” is a euphemism for anything being done against your will, including being locked in or out of a room, forced medication, etc. As an example, if someone with dementia constantly leaves the stove on, they can be involuntarily locked out of the kitchen. Yes, even in their own homes!

However, after speaking to the confidante, I realized the Care and Force Act isn’t a free pass to do as you please if you happen to be a care provider. In fact, I’m now pretty sure that it’s indeed giving the client more rather than fewer rights, at least if they (or their guardian) knows how to assert those rights. And I know now!

Yesterday, the client confidante came by to discuss last week’s incident with me. I had given both staff involved one chance to talk it over with me before. The one leading the “involuntary care” wouldn’t budge and told me she’d talked it over with the behavior specialist, team leader and my assigned staff. She kept claiming forcing me to my room was in the other clients’ best interest. I learned yesterday that the Care and Force Act isn’t about best interest, but about “significant disadvantage”. This means that someone (either the client involved or someone else) has to be at risk of suffering significant harm (in any form, including psychological) if the “involuntary care” isn’t provided. It also requires that “involuntary care” be the last resort. In this case, the staff asked me verbally to go to my room twice, then threatened to ask her coworker to “help” then gestured to her and then they dragged me to my room. That’s not a matter of last resort!

The other staff involved used to be one of my most trusted staff. She initially blamed her coworker for forcing her into a quick decision, until I learned that they’d talked it over before I even went into the living room. Then she finally half-heartedly apologized.

This incident, however, was only the final straw again. After talking to the client confidante and being informed of my rights, I feel that a can of worms was opened of things that staff (used to) do against my will.

For example, this home is locked as a measure of “involuntary care” for two fellow clients at risk of eloping. This is in itself a questionable measure, but the thing affecting me is my being given a black-or-white choice between the door being opened at every hint that I want to leave or my not being allowed to leave the home without explicit permission at all. A similar thing is staff constantly telling me they aren’t allowed to force me into activities as an excuse to lay back at my every hint that I don’t want to do a certain activity.

Another example is the client portal with my records. I have requested access to it multiple times but the question has always been flat out ignored.

I called the confidante this morning requesting that I be allowed to E-mail her with my further concerns/questions. I did so this afternoon. Earlier this evening, fear hit me hard. What if the powers-that-be decide to give me a choice between consenting to whatever they please and being kicked out? This happened once in the psychiatric hospital and well shotgun consent but they got it.

Same when the social worker threatened to declare me incapable of decision-making and make my parents my guardian unless I signed application forms for a home everyone should’ve known I didn’t meet the criteria for. I sent the confidante another E-mail this evening asking whether the institution could legally do this and, if so, whether there’d be any chance that my parents or sister would be appointed as guardians rather than my wife, especially after our divorce.

The confidante will E-mail my support coordinator asking her to schedule a meeting between her, the behavior specialist and me with the confidante leading the process. She told me I’m allowed to file a formal complaint after that. I’ll give it some thought, but that causes me intense fear too. After all, even if no-one can legally threaten me with forced discharge or guardianship, that doesn’t mean they won’t try.

Variation and Deviation: What Is Typical vs. What Is Desirable

Posted on by Astrid

For today’s Friday Faithfuls challenge we’re encouraged to write about what “normal” means to us. I am reminded of the opening phrase to one of the Project 2025 training videos. Mind you, I didn’t see the actual video, but listened to an episode of the podcast, The Ace Couple, walking the listener through it. The goal of the video was to educate Project 2025 supporters about the language leftists (and presumably anyone else not in agreement with their garbage) use and what we (yeah, I’m one of those pesky leftists!) supposedly mean.

The opening phrase was: “I’m just a normal American woman.” The speaker then went on to describe what she supposedly would be called by the Left. The exact wording, I can’t remember but it included “cisgendered” (her words, never mind that it’s “cisgender” without the “-ed” ending), “ethnoimperialist” (a term I’ve never heard of but then again I’m white and assume this is just a parody phrase to say she is too), probably “heterosexual” and “pronouns she/her”.

Now what’s “normal” about all this? Statistically speaking, being straight and cis (which means, for those not aware, that your gender assigned at birth aligns with your gender identity, so the opposite of trans) are indeed “normal”, in that the vast majority of the population falls within this category. White, globally speaking, definitely is not: the majority of the world’s population are BIPOC (Black/Brown, indigenous, or people of color).

I was also reminded of an open discussion I had several months ago with a temp worker who happens to be gay. We were discussing sexual and gender diversity and relating it to neurodiversity. The neurodiversity movement says that autism and other neuropsychiatric conditions are merely a variation of the norm, not a deviation from it. The difference is that variants are statistically less common but not less valuable, whereas deviants carry a connotation of “less than”. Autistic/neurodivergent people are different, not less in a similar way that people under the LGBTQ+ umbrella are different, not less.

Now I would like to say that no-one is “less” as a person. However, some human conditions, traits and behaviors are both abnormal and undesirable.

I do understand that what are considered “deviations” from the norm rather than mere variations, changes over time. Autism, commonly, is still seen as a disorder in need of a cure and there’s hardly any protection against discrimination based on it. Homosexuality, thankfully, not anymore. At least, not in the Netherlands. This doesn’t mean gays don’t face discrimination, but in that case, society sees that it’s the person being homophobic who’s in the wrong, not the gay person.

I am a strong supporter of both neurodivergent and LGBTQ+ rights, and a member of both communities, for clarity’s sake. Though I am white, I try to learn about race issues. I may not statistically speaking be “just a normal woman” and thank goodness in this era I’m not American. However, I am a human being and this means I deserve human rights.

Right to Health

Posted on by Astrid

In his daily prompt yesterday, Scott Andrew Bailey asks us about the “right to health”. I purposefully put that between quote marks, as obviously no-one has a right to health. We all get sick and die eventually. Okay, that was my autistic brain’s literal thinking acting up again. What Scott means is the right to medical care.

Scott asks whether medical care is something the government should provide for the people or whether it’s best left to the private sector. Are there drawbacks to your choice?

The answer to that last question is, of course, yes. Any system has its drawbacks. My answer to the first question, on the other hand, is: I’d like it to be a little of both. For my Dutch readers, the answer can be short: I like my own system best, despite its drawbacks, such as the mandatory copay and the diagnosis-treatment combinations which dictate that you’ll get care based on a diagnosis, not your needs. Those were a particularly problematic thing in mental health. I believe they’ve been altered to something else this year, but I don’t know whether it’s better or worse.

For my international readers, here is a little explanation of how the Dutch system works and why it has the best of private and public healthcare combined. Basically, what is called basic health insurance is more or less public, even though it is covered through the same insurers that will cover your additional insurance should you get it and the insurance companies are private. The government decides which care is covered under basic insurance and insurers must accept every Dutch resident for this package, regardless of health status. The basic package covers visits to your GP, hospital care, most medications, specialist mental health services (ie. services for people with more severe mental health problems), etc. Things that are not covered include physical therapy, dentistry for adults over 22 I believe, contraception (even though Christian parties have been demanding it gets put into the package to prevent women needing abortions), etc. When I lived with my husband, I had mostly just the basic package (I did have some physio coverage but didn’t use that) and I didn’t have to pay a lot of extra money for things that weren’t covered.

You can decide to get additional coverage for things like dental care, physical therapy, alternative medicine, etc. However, insurers can refuse you for those. They usually don’t for the cheaper packages, but then again getting these hardly outweighs the cost of paying for care out-of-pocket.

Basic health insurance currently costs about €133 a month if you want to have free choice of healthcare providers (I do). You can opt for a cheaper policy where the insurer has contracts with only certain providers and you have to pay 30% of treatment costs if you go to an uncontracted provider. Like I said, there’s a mandatory copay of €385 a year on your healthcare. GP visits do not count towards this.

Like I said, I think our system has the best of both public and private worlds. Before the current system was put in place, low to medium income people were covered under the sick fund, which was similar to the UK’s NHS, including its problems of extreme waiting lists and bureaucracy. People with higher incomes would need to get private insurance, but I don’t think it was much better for them, in the sense that those with private insurance would be treated favorably. That’s a good thing.

A note about those who cannot afford to pay for health insurance at all: as a general rule, basic insurance is mandatory and there are several ways in which the government aids low-income people, but ultimately if a person doesn’t pay at all, insurers have the ability to stop insuring them. In that case, hospitals can refuse care, but not in acutely life-threatening circumstances such as when someone has a heart attack. In that sense, you have a right not to die on the health system, but not an ultimate right to medical care.