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.

29 thoughts on “Long-Term (S)care Planning

  1. Goodness, you are having to consider so many pros and cons for your future care. I hope that you are listened to and you can find a place that you are happy and comfortable in.

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    1. Yeah, it is stressful. I’m particularly worried about my autism diagnosis and the reassessment of it because I reckon that just blindness won’t qualify me for group home care, and mental illness isn’t even mentioned in the new Long-Term Care Act. Besides, my parents are largely in denial of my autism and having to confront them with all these questions and me with their answers, is very stressful.

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  2. I hope you get what you need. I used to work in care and the red tape and bureaucracy is time consuming and not constructive at all. They really let the people down who need help the most and end up wasting more money than they could have saved.

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    1. I agree. The Long-Term Care Act, which turns out to be due to go ino effect in 2015, is supposed to cut budgets by E1.2 billion, but I don’t know what the added bureaucracy of this law (which makes local authorities responsible for funding care and determinign who gets it rather than a countrywide authority) costs.

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  3. Yikes. What a messy your future has in store for you. As if you needed one more thing. Hope the (s)care plan becomes clear and gives you all you need AND want. You deserve it! (Visiting from LoveThatMax this time!)

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    1. Thanks so much for your kind words. I am hoping we can get a consultation at the Leo Kanner House and I can finally be honest abou t my care needs. When I talk about them to my therapist, she usually immediately replies with: “Well, you can’t expect the nurses to help you with that.”

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