Tag Archives: Developmental Disabilities

Being Powerful, Empowered, Mighty: Making My Needs Known

Today, I actually feel like writing about an experience I had this week, when I created my list of support needs and concerns for when I’m going to live with my husband. I particuarly wanted to write about my various ideas on day activities. Then again, I wanted my post to be prompt-based and have some direction and preferably be suited for a linky. Then I saw that this week’s prompt from mumturnedmom is “mighty”. Well, it was quite an empowering experience and a mighty experience at that. I don’t know whether “mighty” means the exact same as “powerful” or “empowered” and I believe these don’t even mean the same, but who cares? I am empowered, I am powerful, I am mighty, for I can make decisions on my care needs.

Seriously though, this is really empowering. After all, up until last week, I thought all responsibility for making this whole living with my husband thing work lay with me, but all control lay with my treatment team. Late last week, I was ranting about this in a Facebook group for people with borderline personality disorder and someone else said just the right things to get my butt moving. Or rather my fingers. She didn’t say much and I can hardly remember what she actually said, but I was inspired to finally start wrting down my support needs and concerns. My psychologist had been pushing me to do this, but I didn’t know how.

The first thing was about medication: who makes sure I get my meds on time, checks when I’ve run out and gets me a new supply from the pharmacy? Can I get a periodic med review with a psychiatrist? Then came concerns about my handling distress: whom to call and when f I’m in distress? What can I do myself? What needs to be done if I end up in a dangerous situation? Then came concerns about activities of daily living like making coffee (which I can do myself), preparing and serving myself food and suchlike. I didn’t have answers to many of these questions in all of these areas, except that i need to get supported day activities.

I E-mailed my list of concerns to my named nurse and was discussing day activities and recreation with her. My husband had made a few suggestions last week, but I was brainstorming with my named nurse too. I reasoned that I’d like to get my day activities from a developmental disability service provider rather than one for mental health, because they are usually more equipped to accommodate multiple disabilities and sensory needs.

Suddenly something popped up into my mind that I’d said to a nurse at my old institution a few years ago: that I’d like to try snoezelen. Snoezelen is a Dutch term with no proper English translation, but it means that a person with a developmental disability is allowed into a room which is equipped with materials to soothe and stimulate the senses. The sensory environment is completely controlable. It is also safe, like with soft walls and such, because most people who use this type of service have behavioral challenges.

I expected my nurse to ridicule me for proposing this, but she completely got me. My activiyt staff, whom I told the next day, said the institution has a snoezel room at the unit for people with intellectual disabilities and I may get approval to try it there. Of course, since this service is usually provided to people with intellectual disabilities, I may not be approved and if I do get approved, I may not be able to get along with the other clients. Well, screw that last one, which was holding my staff at the old institution back: I can hardly get along with most of my current fellow patients either.

Now I wrote my psychologist, but didn’t talk about the snoezelen idea, because I fear she will most definitely ridicule me. She seems so focused on my intelligence and my mental illness rather than my autism and sensory needs, after all. I did ask my named nurse to go with me to my next meeting with my psychologist so that she might advocate for me.

I also discussed my need for day acitivities in various Facebook groups for autism and other disabilities. Other ideas provided were yoga, swimming, trampolining (on a low trampoline) and gardening. My activity staff also said I need multiple activities that I can do during the week. If I end up swimming or doing yoga, I would like to do it at a day activity center, because then the instructors would be more accommodating than when I’d go to a regular gym or pool.

I feel much more positive, much more empowered than I did last week, even though many people or agencies may still get in the way. Like, my psychologist or social worker may refuse to refer me to a developmental disability service. Then again, my social worker said I need to do the meeting with the governnment people who decide on funding myself. These people might refuse to contract a developmental disability agency for me, or the agencies I have in mind might all turn me down. Still, if I don’s stand up for what I believe I need, I won’t definitely get things done my way.

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My (Somewhat Hypocritical) Opinion on Force in Mental Health and Developmental Disability Services #Write31Days

31 Days of Mental Health

Welcoem to day 25 in the 31 Days of Mental Health. Today, I’m inspired by yet another question from the 30-day mental illness awareness challenge. For day 25, the question is about your opinion on force or coercion in mental health.

I used to be a strong opponent of any form of coercion in mental health. I remember once in late 2007, when I was still on the acute unit, a fellow patient being medicated against their will. I saw this as a particularly nasty violation of the patient’s human rights, worse than for example seclusion. Now I know that for some people, if they have to choose between seclusion and rapid tranquilization, their choice is not always seclusion.

I used to believe, in my naivety that there is always an alterantive to force in mental health. I still believe there is in most cases. For example, studies of involuntary outpatient treatment don’t compare the programs to the same level of care but without the component of force. If they did, maybe it’d be shown that there is no advantage of forced treatment, and it is just the intensity of care that makes the difference. In this light, I remember one particularly poignant interaction I had with a nurse on the acute unit. She said that I’d be secluded if I needed more care than they could provide. Indeed, involuntary outpatient treatment is generally seen as a way of averting hospitalization. Now I’m not a big fan of psychiatric hospitalization, but I cannot help but believe involuntary outpatient treatment is just a convenient (for the providers and the government) way of saving money. So are most forms of force in mental institutions, as my interaction with the nurse illustrates.

Of course, a few people cannot be kept safe even with constant one-on-one attention, assuming the government would allow this. A notable example is the case of Brandon, a young man who had been restrained in his institution for people with developmental disabilities for years when the newspaper got word of it in like 2010. I was infuriated at such inhumane treatment as restraining a person for years, but my husband and many other people I spoke to countered that there simply was no alternative. Medications hadn’t helped (and besides, that’d be another form of force) and Brandon was so aggressive that he’d attack anyone coming close.

That being said, still, in many cases, force in mental health and developmental disability care is used as an alternative to proper care. I remember one example that I read about at the time Brandon’s case was in the news. A proponent of electroshocks as aversive therapy for people with severe self-injurious behaviors presented the case of a person who was hitting his eyes so vigorously that he was at risk of becoming blind. He described the situation of the nurses conferring at the nurse’s station while the man was blinding himself in the next room, adding something like: “And what quality of life does a person with an intellectual disability who is also blind have?”

I cannot begin to tell you all the things that are wrong in this situation. Nurses sit at the nurse’s station conferring (or drinking coffee) way too much rather than taking care of their patients. We do not know whether one-on-one attention would’ve prevented this man from blinding himself, because there was none. INstead, his treatment team chose to set him up with a shock machine. In addition, I totally understand a sighted, intellectually capable person’s judgment that an intellectually disabled person who is blind has no quality of life. However, the proponent of shock therapy hardly considered the effect whatever causes this person to self-injure has on his quality of life, possibly multiplied by the effects of electroshocks. We do not know whether the person in question had a painful medical condition. I assume the cause of his self-injurious behavior was unknown or could not be taken away, but I’ve heard parents and professionals advocating for aversives or restraints when the cause of problem behavior is known and can be removed.

I do use some double standards though. Being in a mental institution myself, and especially having seen some of the more severely mentally ill people, I have lost some of my naivety regarding forced treatment. Perhaps less self-righteously, when soemone bothers me, I’m happy to have them secluded, restrained or medicated. There are some people on my unit who are very regularly verbally aggressive or simply very annoying when psychotic. In those cases, though I would like to say I oppose force, I’ve actually been relieved when the nurses gave these people some PRN medication, often with only some sembleance of consent. I would like to believe that the guys who constantly talk to their voices are actually helped by a low-potency neuroleptic, but at least I do not know whether these people are bothered by their voices and if so, whether the PRN medication actually quiets their voices. I should care, but when it’s past 10PM and I want to sleep, quite frankly I don’t.