Tag Archives: Day Activities

Day Activities #WotW

Oh man, I haven’t written in nearly two weeks. This isn’t unheard of on my blog over the past year or so, but it does feel a little weird, given that I fully intended on writing more in May. I have now been home from the mental institution for two weeks and it’s going better than expected. I’m of course still having my ups and downs, but I haven’t been in a full-blown crisis yet.

As I mentioned in my last post, I started day activities May 9. It was really hard at first. Like I said, the group I’ve been placed in does simple manual labor like packaging and sorting tasks. I found this boring and difficult at the same time. Last week though, I found an activity that is useful as well as doable for me. It’s making paper props. That sounds incredibly dumb and useless, but paper props are used to store paint cans with, so that the paper will absorb the paint should a can leak. My staff said this activity drives her crazy, but it truly is a sensory friendly activity to me.

Last week, we also did some gardening. I don’t like my hands getting dirty, so I had trouble with this activity. However, while going to the garden, someone mentioned a set of swings. I at first thought the swings were only to be used by those with more severe disabilities. Then someone from my group went on them, so I asked the staff whether I could use them too. It was fun!

However, the best activity yet was snoezelen. This Wednesday, I was very irritable, the staff took me to a room. “Have you heard of the snoezelen room?” he asked. I had heard of this and had in fact asked my treatment team at the institution if I could try this at the intellectual disability unit about a year ago. They said “No.” After all, I wouldn’t be able to do this once home. Snoezelen was developed in the Netherlands and there isn’t a proper English term for it. It is a particular type of sensory play. Basically, in a snoezelen room, the service user or their staff can control the entire sensory enviornment. For example, there are lights, soothing music, soft spots to sit in, etc. I haven’t discovered all there is to this room yet. Maybe tomorrow, the staff will show me around.

on Thursday and Friday, when I became slightly irritable, the staff took me to the snoezelen room again. On Friday, the staff asked if I would like to have this in my daily schedule. I felt a little weird, as I had gotten the idea from my institution treatment team that this is only for people with severe intellectual disabilities. The staff however said that if it helps me, it’s fine.

I’m choosing “day activities” as my word for the week. Next week, we’ll unfortunately have Thursday ad Friday off, but I’m hoping to enjoy Monday through Wednesday mornings there.

The Reading Residence

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

J – #AtoZChallenge on Mental Health

Welcome to the letter J post in my #AtoZChallenge on mental health. This is one of the hardest letters – I mistyped it in the theme reveal. I’ve come up with just two words and they’re not very related.

Jobs

Mentally ill people are particularly likely to be unemployed. Like I said when discussing experience, some institutions create special jobs for people with mental illness to work as recovery or experience workers. These are paid jobs not suited for people in long-term inpatient care, although they are very suitable for people who have overcome a long-term institution life. People still in long-term care can become part of a recovery group. This is often seen as volunteer work and earns you around €10,- for two hours a week of attendance.

People who are long-term institution patients of course have to do something during the day. Some of these activities are simple industrial or administrative duties. At my old institution, these were purely seen as day activities and didn’t earn you any momey. At my current institution, patients doing this work earn like €1,- an hour. That’s still only a small percentage of what people in regular employment earn, of course – minimum wage islike €10,-. People doing this type of work often still call it their “job”. People doing creative day activities usually don’t.

Juvenile

Children can get mentally ill too, of course. I recently read that as many as 30% of children in the UK have a diagnosed psychiatric disorder. Now I assume this includes autism and ADHD, which are not always seen as a mental illness. However, among older children and adolescents is also a significant number of sufferers of depression, anxiety and eating disorders. Even among younger children, mental illness can happen. I even heard of psychiatrists specializing in infant and toddler mental health.

Most mental health agencies serve people of all ages, but there are also separate children’s mental health agencies, especially for inpatient treatment. Even those agencies that serve all ages have separate units and treatment teams for children and adolescents. In the Netherlands, after all, child mental health care is regulated by the Youth Act rather than the various laws regulating adult mental health care.

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.

mumturnedmom
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Ten Achievements of the Past Decade

Today in Blog Everyday in May, the prompt is to list ten achievements of the past ten years. Now I already did my 28 Before 28 post in February, so it’s an extra challenge not to repeat myself. I am just going to write, and if I don’t get to ten, well, screw it.

1. Graduated from high school. This happened just shy of a decade ago. I am not particularly proud of myself for graduating, probably because my parents were super over the top proud of me and I still can’t let go of a little parent-defying. I forgot most of what I learned in high school anyway.

2. Learned to clean and cook semi-independently. I went to an independence training home for the disabled in 2006 and 2007, where I learned many skilsl ncessary for independent living. I lost most of these skills again, but the fact that I learned them once, makes me confident that I can relearn them.

3. Overcame a mental crisis. It surprises me that, in the 28 Before 28 list, though I did include my diagnoses, I didn’t include the actual achievement of overcoming the darkest of aspects of mental illness. In all honesty, and I hope this doesn’t get me kicked out of care before I’m ready, I can say I’m much better able to cope than I was back when I was first hospitalized in 2007.

4. Finished two Open University psychology courses with a passing grade. IN 28 Before 28, I did mention that I took five courses in total, but the achievement of passing two of them in 2009 was largely overshadowed by the fact of the three that I didn’t pass.

5. Was able to let go of some of the darker trauma-based emotions and perceptions. As regular readers might know, I’m a childhood trauma survivor, which largely came to the surface when I was at my old rehabilitation unit in 2010. Though I got no evidence-based treatment for PTSD or dissociation, through a lot of talking and some work done on my own, I overcame most of the classic PTSD symptoms. I still have attachment issues, emotion regulation difficulties, etc., but I am confident that I will overcome the debilitating effects of these too.

6. Got married. I don’t usually credit myself for our relationship success, but then again it’s a mutual effort I guess, so I should deserve half the credit. If not, then well, I’m still happy I got married, so this fact still belongs here!

7. Started and restarted yoga. I took yoga classes in 2009 or 2010, but eventually quit because the emotions it brought on were too overwhelming. I recetnly restarted and am becoming quite successful at basic poses and exercises.

8. Was able to participate in group recreational therapy. In my old institution, I used to get individual day activities only. Due to budget cuts, I couldn’t get these for a long while in my current institution so I tried the day activity group. It’s still quite hard, but I can at least usually keep up.

9. Was able to enter the recovery stage with regards to my eating disorder. That is, I comletely stopped purging and recently was able to reduce my binge eating significantly too. I gained lots of weight in the past decade and have only started losing it again little by little over the past couple of months, but at least I’m improving. I also haven’t self-harmed in a few months, but that has not been a conscious effort as much.

10. Am generally much happier than I was ten years ago. This pretty much sums up all of my achievements. I didn’t earn the Ph.D. or get the high-profile job I thought I envisioned for myself ten years ago, but so what? I’m generaly less angry, less hostile and also less anxious than I was in 2005. I’m still not the shiniest example of positivity on the planet, but I’m trying to keep a positive outlook, and that’s what matters!

Found Love. Now What?
The List

The Year in a Word

A prompt I came across asked us to sum up our year in a phrase, but I’m choosing a word. Creative. When choosing a word for 2014, I chose “self-care”. Unfortunately, I haven’t been able to follow along with this theme much this year. I gained more weight (I’m obese), had a really hard time sticking to my exercise routine (or non-routine), and any attempts to start adoptig a healthier lifestyle ended in a few days. I also haven’t made much progress in therapy. Having been diagnosed with BPD in 2013, I had hoped 2014 could be the year of finally finding appropriate treatment. It wasn’t. My antipsychotic medicaiton was upped in late 2013, but unfortunately it had to be upped last week again.

But the year was positive in some other ways, and those things are what causes me to choose “creative” as my word for the year. Early in the year, I chose not to invest much in my old hobby of cardmaking anymore. I am still part of a few cardmaking groups, but had to let go of my commitments on all group sometime this year.

However, I did pick up several new hobbies, including jewlry-making and polymer clay. I did recently start up cardmaking again.

Creative day activities also started to take a place in my week this year. I stopped going to one of the crafty day activity places in late 2013 because the stress of having to wait for the car to pick me up and drive me there and the shortage of staffing made it too hard for me. Fortunately, the day activity room attached to the long-term adult units in my institution (on which I reside) opened its doors in late 2013 too and activities took full effect early this year. I have sometimes had a hard time going there, but I have persevered. As a result, I’ve been able to create quite a few nice things. Below is a picture of a necklace I recently made.

Necklace

I’m still thinking, but I might just choose “creative” as my intended theme for 2015 too.

(Mostly) Screenless #WotW

On Tuesday evening, I wrote here on the blog that my husband can usually fix my computer. That same evening, someone from Freedom Scientific, the screen reader company, called to get into my computer through some kind of distance control, in the hopes of fixing a problem I’d been having for a few weeks, which my husband had been unable to fix and for which he’d blamed my screen reader. After the Freedom Scientific person fiddled with my computer for a bit, it was worse than it was before. She recommended system recovery, which my husband tried on Wednesday, but failed. He took my computer to his place to reinstall Windows.

Since I hadn’t been able to use my computer from Tuesday evening until last night, and I didn’t compensate for the lack of a computer with a smartphone (which I don’t own) or TV, this was largely a screenless week. It was less of a boredom-filled week than my week without Internet acccess last May. I am thankful for loom bands in this respect.

Thursday was actually the most boring day, because we had a rather weird activity staff. I need some help with the loom bands, although after almost a week of nearly fulltime practice, I can almost entirely make a fishtail without help – the only thing I haven’t figured out is how to attach the clip on one of the ends of the bracelet.

Anyway, the other clients and I spent Thursday morning in the room pretty much keeping busy by ourselves because the man had no clue what activities we were doing let alone how to help. Besides, he went on a 45-minute cig break – thankfully there were no clients who needed to be accompanied by staff at all times. After this hilarious if not frustrating morning at day activities, I decided not to return for the afternoon. Instead, I did go to the gym, which was one of my goals for the week anyway.

A nice nurse worked the evening shift and there was some extra staffing, so she offered to help me with the loom bands. We decided to make a loom band heart for my husband. Unfortunately, I fidgeted with it too much so that a band snapped shortly after the thing was finished. I hope this isn’t somehow symbolic.

Yesterday, my husband brought me both my new computer, the one on which Windows needed to be reinstalled, and the older one, for which he had to replace the keyboard. Unforutnately, the old one returned a weird error upon startup and I forgot the password to the new one, so I had to wait for my husband to finish his late shift at work at 11:30 PM to give me the password. Today, he also “fixed” the older one – it wasn’t broken. Yay for my husband and yay for two working computers!

The Reading Residence

Play the Game of Pim-Pam-Pet

The game of pim-pam-pet

I go to the activity room in the building across the street from my ward regularly. Usually, I do crafts there, but I sometimes play word puzzles and card games too. One such card game is pim-pam-pet. It’s a very family-friendly game, which I played as a child too. I could hardly find English-language information on it so don’t know whether the game is sold in the U.S. or UK, but the cards are easy to make. There also seems to be an iPhone app fo rthis game. Pim-pam-pet isn’t played with a regular deck of cards. Instead, there are a set number of cards with category words on it, such as “book”, “girl’s name”, etc. Then the game contains a letter wheel used to select the letter with which the answer to the word on the card needs to start. If, for example, the card says “girl’s name” and the letter showing on the wheel is A, the players need to come up with a girl’s name starting with A. The first person to name a girl’s name starting with A (Astrid!) wins that card. At the end of the game, the player possessing the most cards has won the game.

There are premade sets of cards which you can buy at a toys store. However, you can also make your own cards using pieces of white cardstock. On those, you can put funny questions such as “What do you like eating for dinner?”, “who do you love most?”, etc. Of course, the letter showing on the wheel limits your choice. I myself find I sometimes get stuck when I can’t think of something I genuinely like with the letter showing, but other people I play with name random things. For example, it’s quite funny to hear someone who can’t stand broccoli answering that to the question of what they like to eat for dinner when the letter B comes up. Similarly, when the question is to name a book and the letter showing is I, my activity staff has come up with: “In the summertime. I bet there’s a book titled that.”

When you are playing seriously, this game is a good way of teaching object categories to children. It may be that you’ll need to turn the wheel multiple times. After all, what if the letter Z comes up and the question is a color? When you’re playing for fun, the answers to questions like “who do you like to play with?” can be good conversation starters. When people give random responses, it’s just a way to have a good laugh. In any case, pim-pam-pet is a really fun and sometimes educational game for anyone old enough to know their letters.

Long-Term (S)care Planning

Next year, my institution is going to undergo restructuring and all people with the lower levels of care will be kicked out. Lower levels of care in terms of institutional care, that is, so my level five (out of seven) care package does count. Exceptions are being made for those who’ve been completely institutionalized, so that they can’t live in the community, but that doesn’t include me having spent “only” seven years in an institution.

Honestly, I’m worried, but also determined. I was actually going to be referred to the Leo Kanner House workhome. The Leo Kanner House is an agency for autistic children and adults, specifically those without an intellectual disability. The workhome is their institutional, long-term placement for the more severely disabled adults, but firstly they have a waiting list a mile long (or two miles, or three), and secndly, my care package will likely by the time they have a place for me, not qualify me for care there anymore. Five out of seven sounded heavy duty when I first was assigned this care package in 2009, because I got there from three and that was already called something about “intensive support”. Currently, those with any care package below five are expected to live independently with outpatient and home supports. Fine with me, and I would’ve loved to attain this level of independence, but it’s not like the people in these care packages get the additional care that living on yur own requires versus living in a group home or institution.

As far as I’m aware, the people in care package five are allowed 24-hour care until the Long-Trm Care Act passes, which is only God knows when. 24-hour care, for clarity’s sake, means having someone available on call or at best in the group home or on the ward 24/7. There’s absolutely no-one who is allowed 24-hour supervision under the Dutch care system. Anyway, assuming that I’m entitled to group home care until whenever, but will be kicked out of the institution next year, I decided to E-mail my therapist to discuss referring me to supported housing.

There are two supported housing agencies in the area that cater to psychiatric patients – and autistics without an intellectual disability fall under the mental health system here. One of the agencies is a larger one which has existed for several decades. On their page about autism care, they only advertise a training home where autistics are trained to live independentlly and have to move out within a year. Not suitable for me, as 1. I already got enough training home experience to know I’m not going to learn much there, and 2. there’s no way I’m going to learn to live with only home supports in a year’s time, if ever. My husband and I are going to E-mail them anyway as, being a larger organization, they might be able to provide some kind of accommodation where we can live together with enough support for me.

The other organization is smaller, having only about six or seven group homes throughout the province, though mostly in my area. They have an autism-specialized group home in the nearest big city, in which they work together with the Leo Kanner House, but there are two drawbacks. Firstly, this group home is located down town, which means I won’t be able to travel safely even for just a walk around the block. The second drawback is that it is part training home too. Then there are two group homes in the countryside near a neighboring town from here. It is one of these group homes I’m asking ot go on the list for if I pass the intake interview. I will be calling this organization tomorrow after I speak to my therapist. Not sure how or when I’ll be contacting the larger supported housing agency.

One of the positives about moving into a group home is that my therapy falls under a different insurance scheme then. Under care packages for those in institutions, you’re only entitled to 50 minutes of “treatment” a week. That’s normal, you’d say. The thing is, “treatment” includes not only psychotherapy, but also art therapy, social work, consultations with a psychiatrist, etc. Basically anything other than staff support and day activities. Based on this, I get psychotherapy only once every other week at best (even though until recently I had no other forms of treatment, but oh well). Under group home care packaging, support will still be covered, but treatment isn’t covered. You’ll have to get that paid for through health insurance. That means, if I’m correct, that you can get more treatment paid for if your diagnosis warrants it, which mine does if I have to believe my therapist, who says that people with borderline personality disorder normally get at least a session a week. (Day activities are from 2015 on covered through the local government to make things complicated, so I have no clue how m uch I can get of those.)

I also asked my therapist to contact the Leo Kanner House about doing a consultation there. In all honesty, I’d like to get therapy there (they offer psychotherapy too) rather than at my local mental health agency, but as far as I know, getting both agencies involved is also possible if you have a dual diagnosis. As I wrote a few weeks ago, however, my diagnosis of autism is being questioned, so I’m asking my therapist to call my old institution to request my old records, too. I don’t mind having to answer a zillion questions about my autism for only about the fourth time (yay, I can do sarcasm, does that make me NT?). What I do mind is having to get my parents to come over again, for the third time in their case, to do the developmental assessment. Oh wait, what if my childhood development has changed since 2007? My therapist had better get the records, and she’ll hopefully straighten up about my blindness, as the Leo Kanner House had a blind client several years ago.