Tag Archives: Care

I’m Officially Home!: The Road to My Discharge from the Mental Institution

It’s official: I am home. Yesterday was my formal discharge date from the institution. It would’ve been May 1, but got delayed one week because I needed mroe time to make arrangements for my after care. Today, I’ll share my journey to getting the care I need and living in the house I want to live in with the man I want to live with.

Like I said, my original discharge date was May 1. However, a week before that, nothing had been arranged in the way of after care yet. I’d have my first appointment with a psychiatrist from the community treatment team that Friday, April 28. That was all my psychologist said she was required to do in terms of making sure I am in care once discharged. Apparently, she and the social worker had deliberately handed me the responsibility of making sure I’d have day activities and home support, only without telling me I had been handed that responsibility. I didn’t find out about this till April 26, when I had my “exit meeting”, as my psychologist called it. Call me a cynic, but I immediately thought of the Swiss end-of-life clinic by the name of Exit.

After my “etit meeting”, I was very much in distress. I called the patient advocacy person, but she couldn’t do anything for me, as I’d be in the community team’s hands. I called my husband, who was on the road. Desperate, I called my mother-in-law. She asked for my psychologist’s number and somehow convinced her to give me that extra week. It was suggested to me that all it’d take to make sure I’d have day activities was a phone call to the day activity place manager, who was on vacation during the last week of April and would be back May 2. It wasn’t exactly that simple, but in the end it was close to that simple indeed.

On April 28, I had my intake interview with the community treatment team psychiatrist and nurse practitioner. They were much more supportive than anyone in the institution had ever appeared to be upon first meeting them. I suspect this psychiatrist has never worked for a long-term care unit, as she was surprised I didn’t get any therapy there other than day activities. “But it’s a psychiatric hospital,” she said. There she nailed the reason I’ve called it an institution for years: there is very little in the way of actual psychiatric treatment. In fact, a student nurse at one point referred to clozapine, the last-resort antipsychotic the majority of the patients on my unit take, as palliative care. I know for some people it’s a miracle drug, but for many on my unit, all it did was keep them just about stable enough that they could handle an unlocked door.

Like I said, my meeting with the community psychiatrist and nurse practitioner went well. We discussed my syptoms and needs. They would be contacting the home support team, which is with the mental health agency, on my behalf. If no day activities had been arranged by May 12, when I’d have my next appointment, they would also work their arses off to get me day activities.

Last Thursday, May 4, I had appointments at two day activity places. One is for traumatic or acquired brain injury survivors, while the other is for people with an intellectual disability. I had my doubts regarding the first one, which I’d visited in August of last year. This was only confirmed when I went back for an intake interview. It was all very formal. Though this could’ve been because I had already visited the place, it made me feel a little unwelcome. When I disclosed I was also going to look at the other place, the staff at the first place said this might be more suitable indeed. I’d still be welcome at the brain injury place. However, I felt there was too little I could do independently enough there.

I had a taxi drive me to the other day activity place. When I opened the door, some clients welcomed me. They found a staff member, who seated me in a spare room and poured me a cup of coffee while I was waiting for the head staffer to come see me. I talked to him and to one of the staff at the group I’d be placed in. The “orange group” is a group of relatively capable intellectually disabled people who do simple manual labor tasks like packaging, sorting etc. Fortunately, there is no pressure to be quick or do it perfectly. I was a little worried the tasks would be incredibly boring and too difficult at the same time, but I realized it’d either be this or no day activities. Besides, the staff and other clients were very enthusaistic and welcoming. It looked like I might actually have day activities right after my discharge.

Yesterday, however, I had a meeting with the social consultant in charge of my case. The day activity place had already made all arrangements so that I could start “working” there and in fact, yesterday morning I was awoken by the taxi driver ready to drive me there. I had clrearly told the day activity staff that I’d first meet with the social consultant and start “working” on Tuesday, not Monday. For a bit, as I met with the social consultant, it seemed as though it’d all been one big mistake and I wouldn’t be able to start day activities today. However, late in the evening, I received an E-mail from her saying she had pre-approved me for day activities and I could in fact start “working” today.

Disappointment #WotW

This week was a lot less exciting than last week. It was really a big disappointment. That’s why I choose this as my word of the week.

On Monday, I had an okay day. I went to day activities and made a simple soap. There was only one activity staff so I had to be able to do the soaping mostly independently. The staff complimented me on the fact that I was able to be relatively independent indeed.

On Tuesday, I was supposed to leave for the potential new day activity place at 10AM. Since I got up really early, I wanted to go to day activities at my unit for a bit before the cab arrived. Unfortunately, the day activity room was closed because there was no staff available. Both of our regular staff are on vacation and apparently all subs had to work someplace else. An E-mal had been sent out notifying the nursing staff that the day activity room was closed, but only the nurses at the locked ward had received it. I was early, so my nurse went to morning report or something after dropping me off. Twenty minutes later, I panicked because no activity staff had shown up. A nurse from the locked unit came by and informed me that the day activity room was closed. Fortunately, someone was able to call my unit so that a nurse could come pick me up.

The cab arrived exactly on time and drove me to the supported employment building in the city where the day activity place is. Supported employment has largely been discontinued, so the building now houses other services, like the day activity place. The cab driver at first couldn’t find the entrance. Once he found it, I announced my arrival to the receptionist. It turned out the day activity place was in a faraway corner of the building and you had to walk through many corridors to get there. I was nearly run over by a supported employment person on a forklift truck. Those long corridors and the forklift truck gave me the impression that I would never be able to get from reception to the day activity room independently. Quite a bummer.

I arrived in a cafeteria where a large number of people were drinking coffee and chattering. I was seated by a day activity staff and we chatted some. A consumer got seated across the table from me and tried to chat me up. Not what I wanted that moment. Finally, my independent consumer advocate arrived and we got talking about what I expected out of day activities. I mentioned my new hobby of soap making, but we didn’t go into that. The staff member talked about ceramics and such. I couldn’t follow half the conversation by now, because I was overloaded.

We went to check out the actual arts room, which was quite crowded too. It was a disappointment. Next Tuesday, we’re going to have a look at a day activity place that’s part of the same organization but in another city. This place is supposed to be a little less overwhelming. I hope so.

My mother-in-law came to pick me up and offered to have lunch together. We ate a delicious chicken salad at what my husband later said was quite an expensive restaurant. My mother-in-law had gotten the idea of eating out there and I wasn’t there when she paid for us, so I won’t let myself be consumed with guilt. When she dropped me off at home, I gave her one of the goat’s milk soaps with honey that I’d made last week. She did allow me to use the pic she took, but I wasn’t able to get it off Facebook. I slept the entire afternoon.

On Weednesday, I had a meeting at home with a person from the mental health agency’s home support team. Two people came by and they hardly introduced themselves. That set the tone for the meeting. The whole meeting was one big disappointment. It turns out they can only offer two hours a week of home support and you don’t get to be able to phone someone if needed inbetween appointments. I can’t remember much else, except that they asked me how I see myself in two years’ time. I couldn’t answer that question right then and they talked about how it’s my life and I need to be able to get meaning out of it and stuff. As if I don’t know that.

Finally, they said that I might benefit from the assertive community treatment team helping me and then home support coming by twice a week to unburden assertive community treatment. I’m not sure I want anything to do with this home support team at all, given how they treated me in this meeting. They were truly all patronizing and yet telling me I need to be able to do this and that and whatever. Since my current treatment provider is already trying to get me signed up for the assertive community treatment team, I’m not interfering with that. When the people left, I was so disappointed I had destructive urges. Thankfully, I got to go back to the institution that afternoon.

Thursday and Friday went by in a blur. I only went to day activities for a short while on Thursday, because a male sub who didn’t know stuff was there. My named nurse sent an E-mail to my psychologist asking her to schedule an appointment with me. I’d done the same early that week, but still my psychologist replied that if I wanted an appointment, I could contact her. Go figure.

Altogether, this whole week was filled with smaller and bigger disappointments. I am really hoping next week is better.

The Reading Residence

In Between Mental Illness and Wellness

I have often talked about recovery on this blog. Particularly, I have talked about recovery from my disordered eating habits and to a lesser degree self-injury. I wanted to get rid of my binge eating and stop self-injuring. Today, as I gave this some more thought, I took recovery one step further. So what if I stop bingeing and self-injuring? Would that then mean I’d be cured of my mental illness?

Of course, strictly speaking it wouldn’t. However, what if it did? What if I were cured of my mental illnness? After all, I exhibit far fewer destructive and aggressive behaviors than I did years ago. If I were to check mysel finto a mental hospital just as I am now, with no history of acute mental illness, the registrar would laugh at me. I wonder even if I’d be sick enough for outpatient mental health care if I presented with jut the symptoms I’ve been having lately. My overeating may or may not meet the criteria for binge eating disorder or eating disorder NOS. My self-harm does meet the criteria for non-suicidal self-injury, but then again these crteria are quite vague. My mood does not meet the criteria for a disorder. Heck, even when I was suicidal in 2007 and was clearly in need of acute psychiatric care, the only diagnosis the psychiatrist could come up with was adjustment disorder. Adjustment disorder is no longer covered by health insurance. In other words, under DSM-IV, which doesn’t include binge eating or self-injury as diagnoses, I would hardly if at all qualify for psychiatric care.

Of course, I do have borderline personality disorder and Asperger’s Syndrome – I still meet the criteria for these. However, no general practitioner would come up with the idea that I’d have these if I asked them to refer me to mental health services, and the vague referral letter my GP wrote in 2007 would not be enough now. So if I’m not sick enough at first sight for mental health care, am I then recovered? I don’t think so.

Mental health care has in recent years been more and more reduced to mere crisis intervention or other interventions directed at averting people becoming a pain in the neck. Now I won’t say I can’t be a pain in the neck, but a GP writing my referral letter from scratch now would not know. If you aren’t a danger to yourself or others, you most likely won’t get mental health services paid for through insurance. As such, mental health treatment is focused on curing the symptoms of severe mental illness (which is in most cases impossible), whereas recovery is more than that. Recovery, after all, is getting your life back on track.

As a long-term institution patient, I struggle with this. I am relatively well mentally speaking – probably not as well as I describe in the above paragraphs, but still -, but I don’t have a life. When I was admitted to the mental hospital in 2007, I was a university freshman in a new city. Now I’m nearly 30 and have little that could fulfill my life. I have my blog, but that’s about it. It makes me depressed. Not suicidal-type depressed (or should I say “adjustment-disordered”), but it does definitely make me slightly depressed. If I am not sick enough for mental health services and not well enough to get my life back on track without help, then where do I find help in recovering my life?

I hope that outpatient mental health services aren’t really as bad as I now think they are. I can only hope the recovery model still hasn’t been killed by the push for budget cuts. It however makes me sad to read in memoirs of mental health consumers about the recovery model and using mental health services to get your life back on track. After all, I’m afraid you can’t get mental health care for that now even if you’re severely mentally ill like myself.

Q – #AtoZChallenge on Mental Health

Welcome to the letter Q post in the #AtoZChallenge on mental health. This letter was hard at first, but I still came up with a few words. Here goes.

Quality of Care

Quality of care is important mainly to health insurers. That is, it’s not necessarily the real quality of care that’s importnat but how it’s documented in paperwork. As such, we often get patient satisfaction questionnaires. I think they’re worthless. So is the endless stream of paperwork staff have to complete to justify the care they provide. After all, the more staff have to deal with paperwork and patient satisfaction questionnaires, the less they can actually do the real work of care.

Quality of Life

Another loaded term which is used to assess people’s satisfaction with their lives. We get this scale called the Manchester Short Assessment of Qualty of Life questionnaire four times a year. I laugh at the randomness of questions. Like, inbetween questios about your satisfaction with friendships, your financial situation and such is the question whether you’ve been accused of a crime within the past year.

Seriously though, quality of life assessments have real impact on care and policies. For example, if a lot of people treated in a certain way for a certain condition have a very poor quality of life post-treatment, this treatment is unlikely to be used often in the future.

Quiet Room

The “quiet room” or “time-out” is an euphemism for seclusion or the isolation room. Many survivors of forced psychiatric treatment report very traumatic experiences with the “quiet room”. Others find it helpful when they’re severely disturbed, because they can scream there. I have mixed experiences. When I was still on a locked unit, it was often used as a threat to “give me back my responsibility for my behavior”. Seclusion cannot legally be used in this way in the Netherlands; its only purpose can be to avert danger. Now that I’m on an open unit, however, I find sometimes when I’m in crisis that it helps to have me in seclusion for a while.

O – #AtoZChallenge on Mental Health

Welcome to the letter O post in the #AtoZChallenge on mental health. Here goes.

Observation

Observation is an essential part of a patient’s care in a mental hospital. In other countries, I’ve heard staff are supposed to check on patients every fifteen minutes or so. Not here. In the Netherlands, if a patient is in their room all day – and yes, most mental hospitals allow this -, no-one cares whether they’re in bed or engaged in some type of activity. Even if patients are in the day room, nurses are more often than not in the office doing their business. As such, I have experienced that nurses “observe” that I had a good day while I was in bed feeling too low to get out all day. Then of course when patients are acting out, nurses have to intervene and “observe” the patients’ misbehavior. This is a pretty sad reality.

One-on-One

One-on-one care is where a staff member is assigned to just one patient who needs a lot of care. This is sometimes also called hand-in-hand care. Few mental health units in the Netherlands offer true one-on-one care even to the sickest of patients. Usually, when a patient needs one-on-one support, they are in a seclusion room most of the time and are allowed out to get their one-on-one attention. I’ve heard about real one-on-one care in other countries. Wonder how they fund it.

Outpatient Treatment

Outpatient treatment is often defined as treatment for which the patient has to come to the mental hospital at fixed times during the week or month. However, home treatment, where the mental health provider comes to the patient’s home, is becoming more and more used especially for severely mentally ill people.

Often, care for mentally ill people starts with outpatient treatment. The last step in treatment, after the patient is discharged from the hospital, is also outpatient treatment. This is called stepped care: a person is only stepped up from outpatient to partial hospitalization or inpatent treatment if they need it and is stepped down to outpatient care as soon as possible.

Fear of Joy

Fear of joy. Some people find this hard to imagine, but it is real for some of us who’ve experienced depressive symptoms. It is real for me.

I have a really hard time experiencing joy without sabotaging it with fear. I don’t deliberately do this, but quite often I tend to feel intense anxiety when I notice I am in a good mood. Then obviously my mood goes down again.

It’s probably because of expectations. There is this man on my unit who always says he’s doing so-so or bad and never says he’s doing well. He says it is because, if he says he’s doing well, they’ll think he’s no longer mentally unwell and will expect him to leave the psychiatric unit. I can relate to this. Now I myself don’t want to be on this unit forever, like this man does. What I can relate to is the expectation that, if I’m well once, I should be able to keep the feeling and not fall unwell again. Worse yet, I fear that if I say I’m feeling well, I will be expected to cope with less support, more independence. In this sense, I can relate to the fear of being kicked off the unit if I say i’m well. Though I don’t want to stay on this unit forever, I do want to maintain a certain level of support.

Of course, everyone, whether we’re mentally ill or not, experiences highs and lows. People who aren’t mentally ill aren’t expected to keep feeling well forever if they say they’re well once. Why should people with mental illness be expected to be cured if we say we feel well once, then? The truth is, no good mental health professional or understanding relative expects this out of us.

Of course, I remember the situation a few years ago where a woman with depression was denied sick leave benefits because she “didn’t look depressed” in Facebook photos. That sort of thing may happen, and I’m sometimes afraid of this too. Like, yesterday I told my named nurse I’m afraid of not getting community support once I live with my husband. The reason is my staff aren’t coming to the tiny village to assist me with my application and the social consultant there isn’t coming to my institution. This means I’ll need to file the application all by myself. Of course, my husband will be there, but I doubt he knows what care I’ll need. Now I’m at once afraid that I’ll not be able to clarify what I need so that the consultant won’t be able to get me care, and that I sound too capable. The care needs paperwork that the Center for Consultation and Expertise created for me in 2013 lists my intellectual giftedness. I’m tempted to delete that in the process of updating it for the current application. The first reason is because I have no clue what significance a high IQ has over a normal IQ when applying for care. I mean, it means I can’t get care from the intellectual disability agencies, but I couldn’t if I had a normal IQ either. However, the other reason is I fear it will be seen as significant by the social consultant and they’ll determine that if I’m so intelligent, I should be able to solve my own problems.

This is what’s behind my fear of coming across like I’m doing well, and consequently my fear of experiencing joy. Of course, like I said, every understanding person should realize that having a good day doesn’t mean being cured of your mental illness. Then again, I’m not sure most people are all that understanding. Could be my stress-related paranoia though.

Mental Health Goal: Move In with My Husband #Write31Days

31 Days of Mental Health

Welcome to day 26 in the #Write31Days challenge on mental health. Today, my husband and I accepted the house to the right side of Arnhem we were offered on Thursday. I am therefore cheating a bit with the 30-day mental illness awareness challenge and choosing the question from day 29. Actually, it isn’t cheating at all since I never followed the challenge to a T. Anyway, for day 29, the question is about some of your goals with regard to your mental health.

My main goal that I’ve been working on for the past nine months now is to eventually be able to move in with my husband. Since we’re moving to the right side of Arnhem in probably less than a month, you may think there’ll be a bit of a delay in finding me care, but things never went that fast anyway. I hadn’t had an intake interview with supported housing on this side yet. Neither had a definite decision about allocated care hours been made. Remember, we’ve been working on this goal for nine months. Things go that slowly.

One factor in this slow-going process was the fact that my treatment team and I were waiting for the consultation with the autism center we didn’t have till the middle of May. Looking back, there’s not a single thing this center has been helpful with. Another factor, however, was the fact that my husband and I had been planning on moving for months. Even though my psychologist said she’d make arrangements as if we weren’t going to move, I at least have a bit of hope (or illusion) that now that the elephant is out of the room, we can actually start making arrangements for my care.

Apart from preparing for living with my husband, I don’t have any real goals for my mental health treatment right now. However, living with my husband requires a greater level of emotional self-control than living in an institution with 24-hour care. My husband works irregular hours and may be working long days. I won’t have support available when I need it right then during my husband’s work hours. If a support worker will be able to come out to the tiny village on call at all, it’ll take at least fifteen minutes if they can leave right away. Fortunately, I am relatively good now at spending time without care if I know at what times I’ll be abe to enlist a support worker or my husband will be home. I still need to work on improving this ability, because my husband cannot always tell when he’ll be home.

When I do live with my husband, additional goals for my mental health will have to do with other aspects of emotion regulation. I want to finally learn to kick the binge eating beast, for example. There are undoubteldy other negative coping skills I need to learn to replace, but I can’t think of them right now. In short, I hope to eventually be able to participate in day activities and live with my husband without too much emotional turmoil or behavioral outbursts.

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.

Mental Health Care in the Netherlands #Write31Days

31 Days of Mental Health

My husband and I have been in the process of a possible move for a few weeks. In fact, we’ve been contemplating moving for months. Last week, however, my husband informed me we’re high on the housing corporation’s list for a house in a tiny village on the “right” side of Arnhem (that is, east from it of course). My husband has been wanting to move back to that area ever since we moved into our current apartment in 2012. Today, we got the housing corporation’s green light for a visitation, at which point we can decide whether we want the house or not. With the possible move coming so close, my husband started worrying about the possibility of me getting home care in a tiny, rural village. This gets me to today’s topic in the #Write31Days challenge on mental health: the mental health care system in the Netherlands. I will focus on adult care, because it’s complicated enough without adding in the Youth Act and what not.

There are basically three laws governing mental health care in the Netherlands. First is the Long-Term Care Act. The Long-Term Care Act covers institutional care that is essentially deemed lifelong. Examples are nursing homes, group homes for people with developmental or physical disabilities, or psychiatric supported housing placements. Originally, all people requiring long-term, institutional care because of a disability or illness were covered, except for those with psychiatric illnesses. Apparently, the government thought that a psychiatric illness cannot possibly be lifelong. Before the Act took effect, however, this problem was solved. Now, if a mentally ill person has been in inpatient treatment for three consecutive years, they may qualify for institutional care through the Long-Term Care Act. I have yet to find out whether, should I fall apart while living with my husband and need to be institutionalized, I’ll first need three more years of inpatient treatment before I can go into supported housing. After all, I already got those three years of treatment.

Next is the Health Insurance Act. Health insurance is mandatory in the Netherlands and, though insurance companies are private, they cannot turn anyone down for the “basic package”. Basic health insurance covers GP visits, care by medical specialists, most medications, hospitalization, and other care deemed necessary. Outpatient mental health care, partial hospitalization and the first three years of inpatient mental health treatment are covered by basic health insurance. So are most but not all psychiatric medications. For instance, benzodiazepines are not covered except if the patient requires “high doses” of them because of “severe mental illness” (or some other, non-psychiatric indications). I assume they essentially mean that it’s okay as long as the patient needs chemical restraint.

The final law covering mental health is the Community Assistance Act. This law is implemented by each local government, so each locality gets to decide which people qualify for funding for care. They also decide whether people have to pay a copay. The Community Assistance Act covers housekeeping services, day activities and independent living support, as well as short-term institutional care and respite care. I will need day activities and most importantly independent living support through the Community Assistance Act. Whether you get care and, if so, how much is determined through a “kitchen table meeting” with a “social consultant”. Family members are supposed to sit at the kitchen table too, because they too are expected to fulfill some care duties for their disabled or ill loved one. I’ve heard crazy examples where children are required to do housework because their parent is disabled. I don’t object to chores, but the local government shouldn’t assign them in my opinion.

It is the Community Assistance Act that is worrying me and my husband most in preparation for the possible move. I mean, my health insurance won’t change but my local government will. I trusted the social consultant with the local government in our current town, which happens to be in the same municipality as the institution. That will change if we move to the tiny village, because I’ll stay in my current institution whilst preparing for home support. Not that there is an institution in the tiny village municipality anyway. What this means is, my social worker, my husban and I will have to negotiate with a social consultant who isn’t familiar with my current care situation. Besides, like I said, I trust my current social consultant and you never know who you’ll be stuck with next. Of course, my current social consultant hasn’t made any final decisions yet, so that could be a disappointment too. I E-mailed my social worker asking her to get an idea of care in the municipality we may be moving to. I did a quick read of the municpality website and found out they mention the tiny village in their allocation of social consultants, so I assume this means there must be possibilities.

“You Can’t Be in Society Like This.” #BADD2015

Today, May 1, is Blogging Against Disablism Day. I have been participating in this yearly event almost every year since 2007, though some of my posts are no longer online. Usually, I had a good idea of what I was going to write about well in advance. Not now. Having been busy with the #AtoZChallenge until yesterday, I didn’t have lots of time to think up a theme.

I am therefore going to start by giving a little background on my situation and will see where this goes. I am institutionalized and have been since 2007. I was living on my own in 2007 when I broke down mentally and had to be taken to the psychiatric hospital. Though the psychiatrist who admitted me did say we would need to find me a suited supported housing accommodation, she probably wouldn’t have predicted this to take long, let alone as long as it did and does take.

One problem which I encountered was that the staff who had been supporting me while living independently, particularly the team manager, were unwilling to have me go into supported housing at their organization. Their reason was the fact that I had meltdowns. Though I did not become physically aggressive towards people, I did scream and occasionally throw objects. The team manager at one point said: “You can”t be in society like this.”

Well, let me focus on this for my #BADD2015 post. You can’t be in society like this. What? You can’t be in society like this.

I am an informal patient. Always have been. With one exception during those early months on the accute ward, no-one has ever threatened involuntary commitment. There just wasn’t enough ground for it. Yet I couldn’t leave the institution because the supported housing agency decided that “you can’t be like this in society”.

I have become much more moderate on institutionalization over the years. I used to be firmly anti-institutionalization. Not anymore. It’s probably because I just don’t have the spoons to fight a system that won’t change for the better, and that is in fact moving towards more institutionalizations for severely disabled people.

The Long-Term Care Act, which regulates 24-hour care for the most vulnerable of disabled people (which for now includes me), says that people need to get care in an institution. There are exceptions, where a person can get the “full package at home”, but there are very strict guidelines for this.

I have always promoted good, community-based care. All the while, I’m still institutionalized, and I’ve become weary of advocating for my right to live in the community. After all, if no agency wants to support me, I’ll need plenty of spoons to fight them.

What annoys me more than people’s refusal to provide me with care, is the general idea behind the comment that you can’t be in society like this. I mean, it’s still discrimination if a care provider refuses a client who isn’t violent towards them, but it is less striking than to say that this person can’t be in society like this at all. This is like saying that this person is an outlaw.

The bottom line is no care provider has been found yet that is willing to take me on. I just yesterday had a meeting with a local care officer who decides on funding for care under the Community Assistance Act. The meeting went better than I expected. Because I’m now married, I’m planning on living with my husband rather than in supported housing. Then again, this team manager led the community care team, albeit in my old city. The blanket statement that you can’t be in society like this, presumably applies to community care too. Let’s just hope that the care agencies in my current town are less ableist.