Psychological Report

Last week, I received a psychological report by someone from the Center for Consultation and Expertise, which gets involved when long-term care agencies can’t handle complex care needs, like apparently mine is. The consultant psychologist had spoken to me and my team, and had administered a few psychological questionnaires. She had also analyzed the information that the institution keeps on file about me, which has a summary of my history and parent perspective (from the parent interview part of my autism diagnosis in 2007). She would’ve wanted to speak to my parents – although she never asked me -, but neither I, nor my parents would likely feel like that.

The report said some things about me that I didn’t know or remember. In the summary of my history, for example, it said that I was sometimes physically aggressive towards my mother as a young teen. I thought I was only physically aggressive at a much younger age, and was verbally aggressive as an adolescent. Apparently not. Makes me feel quite guilty.

There are also pretty harsh words about the painful experiences I’ve gone through. I won’t quote them here as they’d reveal the nature of my experience, but they are much harsher than those I’d spontaneously use myself. I know where they came from – I said “yes” when questioned -, which makes me feel rather guilty as well. Is that survivor guilt or is it something else, like truly being ashamed of exaggerating? I sometimes feel that I’ve been dragged into this by suggestion. I have some vague memory of being questioned about sexually inappropriate behavior (which I didn’t go through apart from a few minor incidents at about age six and twelve, by the way) and other trauma way back in late 2009. I never told lies about what I’ve experienced, but maybe its consequences, like the DID and PTSD symptoms, are exaggerated.

That was also what the report talked about: PTSD. As I wrote last Sunday, I checked its criiteria in the DSM-IV and unfortunately may meet them. It was not assessed directly, but my team considers me to have its symptoms, and my personality profile and other scores on questionnaires are consistent with it. ON Tuesday, I realized that I sometimes lose time for when I have a flashback, so that could explain why I feel it’s pretty minor. By the way, my dissociation was hardly discussed, but that may be because its full reality didn’t come to my team’s mind until into the assessment process.

Lastly and most annoyingly but least surprisingly, the consultant questioned my autism diagnosis in favor of believing my social problems are due to my blindness. That is at least what I read between the lines – but I’m known to read things between the lines that aren’t there. Her expertise is in blindness, so it is not surprising that she’d attribute social problems to blindness. She had some things about my hsitory wrong and incorrectly assumed I’d been living mostly in a sighted world, while I’ve been in special education for half my school life. However, the assumption that I’m unable to read non-verbal communication, is of course correct. I would assume that this possibility has been considered at my 2007 diagnosis, and at least I explained about it to the psychologist back then. So did my parents probably, being that they assume that all that is wrong with me, is blindness. All tests she administered – AQ-test (again!), Dewey Story Test (measures social insight) and some semi-structured interview -, indicated I’m on the autism spectrum. I scored higher on the AQ-test than back in 2007, which I attribute to my reduced social contact. It is also apparent that I’m easily overwhelmed and have trouble organizing stuff. So the consultant concludes that I’m on the spectrum after all, and my nurses reassured me that no-one is going to take away my diagnosis. Would be a problem if they did, since then I wouldn’t be able to go to the workhome. By the way, the consultant also briefly mentioned adaptive problems, but I’m not sure whether these are attributable to my autism, blindness or both.

The recommendations are pretty vague. Go on with treatment for my difficult experiences, and work on my self-acceptance, or something. I’m also supposed to need “intensive care”, due to the complexity of my problems. What this means, is not clarified, and, in the Dutch system, this could mean a lot of things. However, the head nurse is pretty confident that I can remain in my current care class – two classes higher than the one I was in in 2009 – when my funding needs to be renewed at the end of this year. One is supposed to work on my independence, but without me losing support in the areas that I need it. This seems obvious, but, according to the report, I’ve been overburdened a lot in the past, and I am clearly afraid of losing needed services.

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At the Ceiling of the Care System: The Effects of Care Packaging on the Most Severely Disabled

As I wrote last February and last month, “intensive”, “24-hour” or “one-on-one” care may be thought of as far more than they really are. This may be a problem for those with moderate disabilities, who have to associate themselves with such words as “intensive” in order to get what is for them a minimum level of care, but it is even more problematic for those with profound disabilities, for whom the heaviest care package is not enough.

I just looked up what the developmental disabilities care guide says about the highest care class in their subsystem, class 7, “(guarded) living with very intensive support, care and behavioral regulation”. “Guarded” is my best try at a translation for a Dutch word that is just a little less restrictive than “locked”, but you can be assured that most people in this care class, will live in a locked institution placement.

The guide describes the support required by people in this care class, as follows:

You need intensive support. This is personal and protective support. You also need a lot of structure. The staff also helps you with severe problem behavior. Your staff needs to correct you throughout the day. You also cannot work or interact with people in a group. There are always more support workers. This is important for the safety of the staff and the people in your environment. You are socially dependent. You can only take part in the community with a personal support worker. In your social life, you also need to be supported constantly. In everything you do and in every decision you make. [...] You need a safe environment. The staff show exactly what you can and can’t do. The staff will also make clear and strict agreements with you.

Sounds good, except that a person will always be housed with maybe ten to fifteen people who have the same problems. I would hope there is more than one staff member, if all ten to fifteen clients are a potential threat to themselves and the people around them, as is suggested in the following paragraph:

You have severe behavioral problems and psychiatric problems. You self-harm sometimes and you may be aggressive. You may also not want things, manipulate people, and may have compulsive behavior. You react very strongly to what happens around you. Due to these severe problems, it often takes more than one staff member to support and care for you.

Even though this sounds harsh, at this point, there are already people who would reach the ceiling of what the care system can provide them, namely, those who are a constant or almost constant threat to themselves or others. Apparently, if you have a developmental disability, you are not supposed to have the extreme behavior problems the mental health subsystem reserves its care class 7B for. By the way, once again, there is very little acknowledgement for the consequences the developmental disability has for the person’s functioning.

As said above, people in this care class will not be able to participate in a group. Nonetheless, the creators of the care guide have decided that they are expected to participate in day activities in a group of three persons. This may not seem much, but if one client starts self-harming, how will the staff make sure this resident is being stabilized (or even restrained, which I don’t approve of but am pretty sure happens) without risking that one of the others will start to act up in the meantime? Back in the days before we had care packages, day activities were approved on an individual basis, but now even the most profoundly disabled people, are expected to get day activities in a group setting. Of course, day centers have always worked that way, but at least in the old system, people who truly could not participate, could be provided with individualized recreational activities in their living facility.

Now lets look at the care hours allocated for people in this class: 31.5 to 38.5 hours a week including day activities. That sounds huge, but it becomes less huge if you are looking at everything that needs to be provided within this timeframe. For instance, the care guide says that clients in this class are approved for four-and-a-half days of day activities. That comes round to 36 hours. Now assume that all people in this class can actually participate in a group of three people – as I said, this isn’t the case, but lets pretend. That means twelve hours a week per client are spent on day activities. Leaves about 24 hours for everything else: housekeeping, dressing and grooming (which most people are supposed to be able to do “with a lot of stimulation”, oh here we go again!), supervision to make sure they aren’t self-harming or becoming aggressive, medical care, any social or community activities, … and of course all the “indirect care” (ie. bureaucracy), because, even though I seem to remember that isn’t supposed to be paid out of the clients’ care packages, what else will the staff be paid from while doing paperwork? Besides, the facility will need to provide 24-hour staffing with more than one person, cause there is no reason that people cannot become aggressive at night. Is it likely that there could be a one/five staff/resident ratio at all times? I don’t know, but I think it is not imaginary: I am not sure whether I hope or don’t hope that the people in the care facility I wrote about last February, are in this class. If they are, and the staff/resident ratio is still as bad as it was when the documentary was aired, this proves our care system is letting the most severely disabled down. After all, a 4/24 staff/client ratio is already very inappropriate for this group, and I can imagine people more severely disabled than those the documentary was about. If they are not in this class, I wonder why, since from what the documentary showed, they clearly fit the criteria.

For a little perspective: it is probably not a coincidence that almost every subsystem, no matter how different they otherwise are, has its highest care package entitle clients to around 35 hours of care a week including day activities. It is, in light of this, also not surprising that certain intersections of multiple disabilities are not acknowledged. For example, no-one is supposed to need both intensive behavioral support and a lot of personal care or substantial nursing care. This is of course not in line with reality, but it suits the Powers That Bureaucratize well. They wouldn’t want to provide people with the care they need if it’d be too expensive, of course. With these care packages, they can just tell a person or their representative: “Sorry, we would’ve approved more care if we could, but the system won’t allow us to.”

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Care Packaging for the Blind

Until now, I always thought there were only five categories of care packaging within the Dutch system of long-term, residential care: developmental disabilities, mental health, physical disabilities, nursing home care, and some kind of weird system for youth with mild intellectual disabilities. I criticized the system for dividing people, especially those with multiple disabilities or disabilities that were left out, into broad yet rigid categories depending on their presumed needs. Because neither blindness, nor autism are explicitly covered under any of the packages, I always read up and down the care packaging user guides to find out how I could be fitted into the care molds.

Yesterday, I found out there is actually a care packaging user guide for the blind and partially sighted (and one for the deaf and hard of hearing), probably created sometime in late 2009. This means that we no longer have to fit ourselves into the physical disabilities mold, at least not if we have additional disabilities, because of course those who are “just blind”, are not eligible for support. However, it doesn’t seem like the disabilities have to be totally clear; if you have, say, behavioral problems, you can be eligible for care even if you don’t have an obvious mental illness.

Unfortunately, the description of the needs blind and visually impaired care users are supposed to have, makes little sense. At first, I thought: “What the heck am I reading? Is this supposed to be about my disability?” The care guide, even for people in class 1, says a lot about how people who are blind are supposed to may have “difficulties with tasks that require you to think, such as when you get information or when you have to remember something”. As far as I’m concerned, blind people on average have better memory than people without visual impairments. Of course, if you have an intellectual disability, this may be compromised, and as I said people whose only disability is blindness, are not eligible for care, but this assumption is not made about users in the subsystem for developmental disabilities. When will the care guide actually acknowledge that blind and low vision people often have difficulty accessing information? Even people with no known additional disabilities, may have difficulties carrying out certain organizational tasks due to their difficulty accessing information, for example, if they can’t read print letters. Yet nowhere in the care guide is this very common difficulty acknowledged.

The care guide does acknowledge the fact that most blind people have some difficulties with orientation and mobility, or at least need training in this area when they want to go to unfamiliar areas. For example, the guide says about users in care class 1:

If you go somewhere familiar to you, you usually don’t need help with this. This can be inside or outside. But it may be necessary that a support worker keeps an eye on you or says what you should do when you go somewhere outside. For example, if you go somewhere you don’t know the way around.

And, when referring to training blind users are supposed to get:

The staff teach you to memorize routes, so that you’re more independent when going places.

In addition to this, people in care class 2 are supposed to need help or assistance “sometimes”, rather than just being watched and instructed. By care class 3, the guide takes a pretty large leap, when it presumes:

When you want to go somwhere, you can do this reasonably independently. When you want to go somewhere outside, a staff member usually helps you. You may also need help if you’re in a space you don’t know well, or if you don’t know where everything is located.

Of course, most blind people have difficulty finding misplaced things or orienting in an unfamiliar room sometimes, so it isn’t like this is reserved for those who need someone to accompany them when going outside at most times. People in the highest two care classes, are pretty much presumed not to be able to go anywhere on their own. Some of these people may have mobility impairments (all care guides strangely presume that someone in a wheelchair can’t go places on their own), but I am not sure whether people who can’t go places independently for safety reasons, due to a developmental or psychiatric disability, are also included.

With regard to housekeeping assistance, the guide is rather strange. I alway assumed that if the care bureaucrats just acknowledged the reality that blind people exist and may need care, they’d make sure to provide domestic care. This may’ve been moved to the Community Assistance Act, but I think that goes only for people who don’t live in residential care. The care guide for people who are blind, further reinforces this belief, but not in the way I’d have liked to see it. Now here I may be insulting the stereotypical Competent Blind Adult, but most blind people I know, even if they don’t have additional disabilities and can live in their own homes with very little or no support, need domestic care. Well, the care guide creators don’t think so. People in care classes 1 and 2 are supposed to be able to do their own housekeeping and cooking, but the guide reassures them that they will get help with that:

So you do as much as possible yourself. That includes domestic tasks. You clean your own living space, if you can do that. Of course, you will get some help with that. You also help cook your meals.

I assume, given how little care time is allocated for people in these classes, that this “help” is restricted to a staff member telling them that they need to clean their room or apartment and checking if they’ve done it correctly. This goes especially for people in class 1 (to whom the quote above applies), who are supposed to get only between 5.5 and 7.5 hours of living care a week (people approved for day activities get more, but it isn’t like that time can be allocated to cleaning or cooking, is it?). I was at one point approved for 1.9 hours of domestic care a week, and that was only for cleaning my home once a week. I still had to do dishwashing, laundry and the like on my own, and, if my support worker hadn’t found time to help me cook twice a week (and I ate microwaved leftovers the rest of the week), I would’ve had to rely on meal services – and I have no clue whether those deliver to care facilities. I think people in care class 1 are better off living in their own homes and applying for a few hours of home support and domestic care at their local Community Assistance Act office. I am not sure how this goes for people in care classes 2 and 3, who are also supposed to do their own housekeeping and cooking with some help, but who clearly need more care than they would be approved for in their own homes. Only with care classes 4 and 5 is it made clear that you are only supposed to help with domestic tasks if you can. As a side note, of course people in these classes, are also supposed to need a lot of personal care. When do the Powers That Bureaucratize finally get it that people who can wash themselves, may not necessarily be able to clean and cook for themselves? Many people who are blind (and may have additional disabilities), don’t have the organizational abilities to carry out housekeeping tasks independently. It may be that we’re all supposed to work extremely systematically, so that we can memorize (if our memory is not compromised) what parts of the room or house we have already taken care of, but I actually don’t know a single blind person who does.

When we get to the highest care classes, I get confused as to which people they are applicable to. Care class 5, the highest care class within this subsystem, is called “Living with very intensive support and very intensive care”. This wording suggests that people are supposed to need both constant supervision and total care, as a result of a combination of severe physical and developmental disabilities. This is not what the introduction to this care class says:

You may have either of these two care needs: either you need very intensive support and very intensive personal care, or you need very intensive support, mostly due to your behavioral problems. If one of these two descriptions refers to you, then the package “Living with very intensive support and very intensive care” suits you. In the description of this package, we explain this separately.

What follows, is remarkably mild to the person with apparently such severe disabilities. In all other care guides, the “heaviest” classes are described in terms of “total care”, “doing nothing for yourself”, “extreme behavioral problems” and “danger”. In this care guide, people in the “intensive care” subsection of class 5 are not described in overly severe terms. In fact, it isn’t even required that you use a wheelchair in order to fall within this care class. It looks like at least the people who created this guide, acknwoledge that mobility impairments for the blind, can also result from other disabilities. Now let’s hope they’ll recognize this in the other subsystems, too, cause people who have, say, severe traumatic brain injury but who are not blind, may also need help with moving about even in their own environment. Anyway, when the guide describes these people’s need for personal care, it is not done in a demeaning way, as in the other care guides, which are full of crap about how oh so dependent you are. That is a good thing.

On the other subsection of care class 5, unfortunately, they compensate for all the relatively good terminolgoy in the first part, by calling upon pretty much every stereotype about someone with significant behavior problems. To my surprise, the description of what behavior problems would qualify someone for “very intensive support”, isn’t actually as negative as I’d expected:

You have many behavioral problems. Some also have addictive behaviors. Behavioral problems are for example: screaming or yelling, forcing people to do what you want, or compulsive behavior. Therefore you often need help, supervision or guidance. The behavioral problems can also appear in other ways. You may also have psychiatric problems. These are then usually clearly noticeable.

This language is derogatory, but it could be worse. What appears to be my own new care class in the mental health guide, which isn’t the most severe class that exists at all, uses more negative terminolgoy, and it is not because I am somehow deemed more severe. In fact, people in class 5 of the blindness guide are approved for significantly more care than people in the mental health subsystem who have similar behavior problems. This would’ve been logical, since most people in the mental health subsystem, are not blind. But not so: there is absolutely no acknowledgement whatsoever that blindness could be complicating a person’s care. Really, this care package is supposed to be suited to people whose so-called “primary disability” (ugh, I hate that word!) is blindness, but the prejudice about people with behavioral problems, is exactly the same as everywhere else, but the terminology is even worse:

You need little help with your daily tasks, such as the care of your own body. This also goes for eating and other daily things. It is mostly important that your staff stimulate you to do many things independently. And that they check whether this goes well. [...] Due to your behavioral problems, it is necessary that you get a lot of support. You can do many things for yourself, but due to your behaivoral problems, things can go wrong.

Excuse the very bad English; the creators of the original Dutch, are eligible for writing classes, since their attempt to make the guide readable, failed miserably. Anyway, all this “stimulating” stuff gives me the creeps. It suggests more than I’d ever seen in any other care guide, that “behavior problems” equal laziness. Really, with the increased prevalence of developmental disabilities and neuropsychiatric disabilities from conditions like traumatic brain injury among the blind, both of which can lead to behavior problems, it is quite likely that people with so-called “behavioral problems” are actually overstimulated easily. A good kick in the arse won’t help these people, and the simple fact that they may not have physical disabilities to explain away their difficulties, doesn’t change that. Really, I am disappointed. As a side note, I just found out that people in this subsection of care class 5, are actually expected to do their own housekeeping and cooking, with the same provision of “help” claimed for people in class 1. Only this time the care hours allocated may actually make it possible that domestic care or guidance will be provided.

I am really disappointed in this care guide. I had hoped that, if a guide for the blind and partially sighted were ever developed, the problems that a sensory impairment creates, especially if there are also other disabilities, would finally actually be acknowledged. Not so: if you don’t have physical impairments, you are almost always presumed to be able to do daily activities for yourself, except for maybe some orientation and mobility. Even though even mildly disabled people with visual impairments, may have difficulties with domestic care and organizational tasks that require access to information, if you can carry out your own personal care, all you are supposed to need is some “help” (which the hours you’re approved for are not enough for), “stimulation” and “guidance”. Have the people who created this guide, ever met a single blind care user, who could explain to them their real care needs? Now the one thing that makes me happy about care packaging, is that it isn’t up to the indication board, but up to you and your care provider, to decide what types of support you get within the limits of your care package.

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Falling Off the System: People with Mild Disabilities Hit Hardest by Budget Cuts

I will do another post on the effects of care packaging on the most profoundly disabled later, but I have to do more research for that. This post will be about another, totally different group of people left out by the current long-term care system: those assessed to have the mildest disabilities.

When massive budget cuts to long-term care were issued for 2009, I was convinced all year that I’d lose my funding, because they’re cutting everyone and seeing who complains. This is what my former home support worker said. During most of this year, I didn’t trust my social worker enough that I’d be confident she would appeal. I am not totally sure yet since I haven’t seen a copy of my indication myself yet, but now that my social worker said that my funding got actually increased rather than cut, I think that I am in a privileged position to have her file for funding. Many people in the community have to fill out the forms completely by themselves, with family, or with their main support worker, who isn’t trained to fill out long-term care application forms. Some organizations, like the organization I got my home support from, employ case managers to fill out the paperwork, but they usually won’t know the clients personally (at least, I never met the case manager involved with the home support team). Consequently, many people not trained in how indication officers think, fill out application forms incorrectly, believing they’re on the same page. The result may be much less support than they need, or no support at all. (Of course, theoretically speaking someone could be approved for more care than they need because of errors on the form, but I’ve never heard of this so far, and I assume the indication board is quick to fix such a problem.)

The budget cuts mostly affect support, both residential and at home. The move from more individualized indications to “care packages”, in 2008, probably had some impact on residential nursing care, too, but the 2009 budget cuts are not at fault here. Jet Bussemaker, the health secretary, defended the budget cuts by saying that support should go back to the people “it was originally intended for”. She illustrated this with a few examples of seemingly obvious misuse. For example, she mentioned a trans person who has been using care money to pay for counseling on how to find a romantic partner. In the pre-2009 version of the act, this was a legitimate reason to get support, on the ground of “psychosocial problem”; this sounds like abuse to people who think the act is only intended for long-term, residential care, but if you know what the act says, which Bussemaker obviously does, you’d know this was entirely legal. In fact, I think this sort of counseling should be available somewhere, and it should be as affordable as relationship counseling is for cis people. I think it now falls under social work, which is operated at the municipal level through the Community Assistance Act. This creates its own problems, but I’m not going into that now.

Anyway, “psychosocial problem” was kicked out as a ground for receiving support in 2009. This group, of course, does not just include trans people whose (presumed) only problem is finding a romantic partner (not to trivialize that, and we don’t know whether this person may’ve had other problems). In fact, I always assumed it was a garbage can category for everyone who had serious problems coping in life, but on whom a disability label could not be stuck. These problems, such as financial problems, housing problems, inability to participate in the community, social isolation, etc., are, of course, quite serious. Furthermore, can we be sure that the local bureaus, who are supposed to fill the gap through the Community Assistance Act, find everyone who is in such an isolated position, so that they can be provided social care? I doubt it very much.

People with only a physical disability, are also no longer eligible for support as of (I think) 2008. The reasoning is that they should be able to solve their own problems or find someone else to do it for them. That assumes, of course, that everyone who is only physically disabled, has a lot of family and friends who can provide them with the support they need, or is magically able to cope on their own. If they can’t cope, they’ll have to have a psychiatric diagnosis stuck on them before they’ll be eligible for support services again (as I said, “psychosocial problem” doesn’t count). Hopefully, the local Community Asistance Act officer, who will find funding for their wheelchair or other mobility device (presuming they use one and know how to apply for funding!), will spot that they’re not coping, so that they can be provided social services – and let’s hope they won’t be turned down by a social worker for being “too complex”. Ironically, the physical disabilities system of care packages provides its recipients with generally more care than people in any other subsystem.

I seem to remember I at one point listed the problems cut out of the list of reasons to get support with the 2009 budget cuts, but I can’t remember when or where. In any case, quite a few problems that to me sound serious, no longer qualify a person for support: guidance in domestic or personal care, participation in the community, and emotional problems like depression, anxiety or isolation. When I recently read a press release from the Disability and Chronic Illness Council evaluating the effects of the budget cuts, these problems were listed as precursors to self-neglect. The reasoning might’ve been that guidance in personal and domestic care, should fall under these functions rather than support, but apparently, people are not served that way. And apparently, emotional problems are not assumed to ever be a precursor to a mental breakdown, so that one has to wait until a person freaks out before support can be accessed.

When the budget cuts were originally announced, it was estimated that about one-third of all people receiving support then, would lose all their support after the re-assessment. I always assumed that the indication board would just cut everyone and see who complains. Naturally, the people receiving the least care, would fall off, but could these really be 60,000 people? I assumed Bussemaker believed intensive support isn’t “intended” for anyone, and I only got more convinced of that when I found out even people with severe, multiple disabilities got cut. Now I’m thinking this might be the result of the care packages rather than the budget cut itself, but I’m not sure. In any case, as it seems to have turned out, those with the mildest disabilities (or assumed to have the mildest disabilities) are hit the hardest. They are the people who live in their own homes, have family do certain things for them but who still have a pretty small network, who have to apply for services themselves or are dependent on untrained people to help them. The people who aren’t yet falling apart because they have support, but who could fall apart if their support was cut. This is not about a few cases where clearly other options exist to go for help once kicked out of the support system. Assuming they really are 60,000 people, I really can’t believe they’ll all be able to navigate the many systems that exist in the Dutch bureaucracy of care and social services.

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The Demise of Individualized Care

Our long-term care system changed many times within the past ten years. First, in the 1990s, we had a system by which people were simply indicated for whatever type of setting they were thought to be most suitable for. For example, an older person might be indicated for a somatic or psychogeriatric ward in a care home or a nursing home depending on their condition and care needs. Settings were paid on a one-size-fits-all basis. For example, general care home wards were initially paid for one hour care per patient per day, regardless of the patients’ individual needs. Most or all psychogeriatric care homes (I don’t know about somatic homes) eventually got “substitution”, which meant that they were paid for two hours of care per patient per day, still regardless of the needs of the individual patients.

This system was finally abandoned in 2003, when the so-called “functional indication” was introduced. This means that people were no longer indicated for a certain type of setting, but for residence plus a combination of several different types of care, such as domestic, personal or nursing care, support and/or treatment. The problem with this system was that you had to know pretty much exactly what the client would need, before they could be indicated properly. They also had to be re-evaluated each time they needed even slightly more or even different types of care. For example, suppose you were approved for support in a sheltered living accommodation due to a mental illness. If you had a relapse and were unable to care for your personal hygiene for a while, you would have to be re-indicated to add personal care. Usually, however, your case manager would know that you might relapse and would ask for some funding for personal care just in case.

The good part of the old system, however, was that you could actually fill in indication request forms quite individually. If a person actually needed, say, personal care, even if all other clients in that home (say, a mental health sheltered living accommodation) didn’t, you could just ask the indication board to approve that one client for personal care. It was also possible for you to make it clear why one person needs intensive support because of serious behavioral problems, even if they don’t have a problem remembering to bathe. That way, you might get support approved in class six (13-15.9hrs/week) without any need to pretend your client needs to be reminded of their personal care. As a side note, another great thing about the old system was that all types of care and care grounds (the reason you’re in long-term care, ie. your disability) were equal. Therefore, it wasn’t like, if you moved from the developmental disabilities system into the mental health system, you’d have to be assigned a different classification number and have to pretend to have different primary needs, in order to receive the same care.

But, of course, the system wasn’t good as it was. At one point, the legislature realized the problem with shifting care needs and the accompanying need for constant re-assessment. So it wanted to create a system by which a client and care provider can, within certain limits, make individual agreements about what specific care the client will receive. Send in the care packages!

“Care package” sounds cute in a way. It seems to me, in fact, that “package” is the newest fashion word in healthcare: the 2009 budget cuts to long-term support are formally called the “package measure”, and I have no idea what that comes from – maybe because they don’t care about the individual anymore but are just cutting the entire bunch as one “package”? That is also what the care package is about: lumping together individuals with superficially similar needs or who happen to live in similar settings, in one category, with its assigned care ration. Actually, I don’t really understand how this is different from the system we had before 2003, but with different terminology. Back then, an older person with severe dementia might be indicated for a psychogeriatric nursing home ward. Now they’re indicated for “sheltered living with intensive dementia care”. I’m wondering what the difference is.

Like before 2003, the system is splintered: there are different subsystems for mental health, physical disabilities, developmental disabilities, nursing homes, and for some reason a separate subsystem for youth with a mild intellectual disability. These different subsystems are not compatible as far as classifications go, like I illustrated with my post on “intensive” support. It is also quite likely that a person with multiple disabilities could fall under different subsystems depending on arbitrary circumstances. For example, a person with a mental illness and a severe physical disability would fall under the mental health system if they lived in a sheltered accommodation for the mentally ill or received treatment in a psychiatric hospital, but that same person would fall under the physical disabilities system if the sheltered accommodation primarily served people with physical disabilities. Depending on this circumstance, the person would fall within entirely different care classification systems. If they lived in a mental health living accommodation, they’d fall under class 6C (there’s also 6B, but that is for treatment in a mental hospital, I don’t know whether 6A exists), “sheltered living with intensive support, personal and nursing care”. This package would entitle them to between 20.5 and 25.5 hours of care a week. This is the highest care classification within the mental health living accommodations system (I think I mentioned class 7 in another post, but there is only 7B), so I’ll assume that if they need more care than this, bad luck for them. On the other hand, if they lived within a sheltered living place for people with physical disabilities, they’d fall under that part of the care classification bureaucracy. Again, they’d likely be put into class 6, which is here called “living with intensive support and intensive personal care”. Now, our consumer is in a wholly different position, since not only can they be upped to class 7 if they end up getting worse mentally or physically, but even class 6 entitles them to 28 to 34 horus of care a week. Note, here, that, while the emphasis is placed differently in each user guide, globally speaking the needs our hypothetical consumer is supposed to have, are pretty much the same. For some magical reason, mental health support workers can do the same thing physical disability support workers do in 28-34 hours, in 20.5-25.5. I wonder what fabulous efficiency training mental health workers got: if we’d give this same training to every care provider, how much money could we save?

Another problem is that you can no longer qualify for services on multiple grounds. Within the care packaging subsystems, some accommodations are made for people with multiple disabilities, as in the case I mentioned above, but as you can see they are pretty arbitrary. Back in the good, old days before the care packages, I qualified because of both blindness and autism. Now my qualifying ground is autism, and the indication bureaucrats have no understanding that blindness could be influencing my care needs. Only if I needed help with self-care due to a physical disability could I be put into a class that acknowledges that I have another disability. Disability, after all, means being in a wheelchair. Yeah, right. As a side note, I know a blind person with no other disabilities who is going to move to an accommodation for the physically disabled; I wonder what class they’ll put her into. If it’s class 2 or higher, she’ll be entitled to more care than I’m entitled to.

Lastly, I have to point out that the descriptions of the different care classes are very rigid. As I wrote in my post on “intensive” support, mental health patients within class 3 are supposed to need guidance with their personal care. On the other hand, they are not supposed to have significant behavior problems. These don’t crop up in the user guide till class 4 or 5 (I think class 4, while an introduction to the changes for 2009 said this class would be reserved for those who needed personal care due to somatic conditions), which entitle patients to significantly more care. What if you have no problem with personal hygiene but you do have significant behavior problems?

Now, do the care packages actually solve the problem they aimed to address, that is, the inflexibility within the former system? In a sense, they do, since all recipients are indicated for both support and personal care. However, recipients are not indicated for nursing care unless they’re in a high class in some systems, and only those in the nursing home system are indicated for domestic care. In that sense, some inflexibility is removed, but a lot remains, and I maintain that the inflexibility in the old system could’ve been solved by making rules that indications should not necessarily be applied literally if the client is served best by a slight twist of the original indication. On the other hand, with the partial solution to the inflexibility problem, a new problem (or rather, old problem, since it was the reason the functional system was implemented) appears: that people are no longer evaluated on the basis of their individual needs, but on the basis of what broad yet rigid categories they (or the agencies providing care for them) belong to.

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What Does “Intensive” Support Mean?

As I wrote yesterday, my current care class is said to be living with “intensive support”. When I initially found out that’s what it’s called, it sounded rather negative. My understanding of “intensive”, after all, was grounded in medical terminology: “intensive care” is, in this respect, the part of a hospital setting where the most severely ill patients are cared for. I was at the time a patient on a locked ward, which is sometimes generally said to be the “intensive care” of psychiatry. Now technically speaking my ward wasn’t an “intensive care ward”, cause that was the other, higher-staffed, locked ward. But mine was still a locked ward, which hopefully means patients must have pretty high care needs.

However, as I said, I had care class 3. There are seven care classes in mental health. Class 3 is way too low to qualify for services on a locked ward. Yet my guide to care classifications says it’s “intensive support”. And I don’t mean that’s just the name of the care class: throughout the explanation of the care needs supposedly experienced by people in my class, the word “intensive” is used repeatedly. For example: “Due to your psychiatric problems, you continuously need intensive support in a sheltered living environment.” Continuously needing intensive support? If that’s what people on my ward supposedly need – as I said yesterday, class 3 is a fairly normal class for reso’s patients to be in -, how can staff leave all patients alone for pretty large chunks of time (eg. if they’re in a meeting or visiting the unstaffed third reso ward), and is there only one nurse for about fifteen patients on many of the other times (all week-ends and some evenings)?

I am not saying that there is a problem with the staffing here, in the sense that reso somehow is doing something wrong. If I were even remotely implying this, my psychologist would tell me to my face that I can’t expect the ward to get extra staff and that it isn’t a locked ward after all, in a tone of voice as if my care needs are unreasonable and I should just pull myself together and show that I fit the reso mold (even though I’d said nothing about extra staff or locked wards, the reason she told me this was that I raised a concern about the million meetings). Anyway, I’m going to assume for now that the agency’s management isn’t throwing money down the drain and actually provides the care they’re supposed to according to the care classification reso falls under on average, ie. care class 2 or 3. (For the sake of completeness: the wording on care class 2 is much less negative, with a lot of “You can do many things independently” thrown in where class 3 has “it’s difficult for you”; however, in terms of hours of care, there is little difference: clients in care class 2 are entitled to between twelve and 14.5 hours of care a week.)

Then, if assuming that reso is actually putting the money they get for our care to good use, the reason we’re not nearly getting “extended” (care class 2) or “intensive” support, in my definition of the words, is to blame on the creators of the care classification system, or the people who translated these classes into appropriate budgets.

First, in the general field of social care, it isn’t at all uncommon to assume that fourteen hours of care a week is “intensive”. In home care, in fact, ten hours is already “very intensive”, and it’s very rare for you to be able to get more than that. However, note that home care is usually provided to an individual, while the care time allocated in residential care packages, is supposed to include both group and individual activities, so mealtime counts even if you wouldn’t need someone supervising you during meals if your care were individualized.

With regard to other forms of residential care, I notice the word “intensive” is used much less loosely. In the user guide to care packages for developmental disabilities, the word “intensive” doesn’t appear till class 4, which entitles recipients to 18.5 to 22.5 hours of care a week (I’m using the care hours including day activities). In the system for people with physical disabilities, the word “intensive” doesn’t even appear till class 5, whose recipients are eligible for between 26 and 32 hours of care a week. (For clarity’s sake: the amount of care you are entitled to if you’re in a certain class, differs depending on what system you fall under. Mental health generally entitles its recipients to relatively little care. I will write another post on the idiocy with different systems within essentially the same bureaucracy sometime.) Only in the nursing home system does the word “intensive” pop up in reference to a class entitled to less care than those in mental health: people in class 4 of the nursing home system are entitled to eleven to 13.5 hours of care a week. Note, however, that nursing homes get extra funding for domestic care, while all other agencies don’t.

One last note on rationing of care hours I have to place, is that care of course isn’t distributed evenly over the day, but in most situations, agencies still need to be able to provide 24-hour available staff in case there’s an emergency. If all patients are entitled to, say, fourteen hours of care a week, you however can’t just have a one to twelve staff/patient ratio at all times, since then you’d need to bathe some patients at 2:30 AM, so to speak. I am not sure anymore whether agencies get paid extra for “residence”, that is, the fact that even though patients don’t literally need or get 24-hour care, they still live in the setting 24/7. In the old care system (the one that was replaced by the care classes stupidity in 2008), I think they did, and I do think they still do, but I have no clue how much.

Concluding, I’d have to say that whoever created the terminology behind these care classes, has no clue how the system actually works. No-one on my ward gets guidance with their personal care, and very few are accompanied by a staff most of the time they go places. Yet this is what the user guide says people in my care class need. It might be true that people who need intensive support need this care, but then at least could the Powers That Bureaucratize actually provide the money for that?

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What’s Another Year for Someone Who’s Stuck in the System?

It’s been another year in psychiatry, and I have no clue what to write about. It’s not like I could do a progress report, since I made little progress, but a cynical list of lessons learned from staff attitudes, like last year would get boring. Besides, most of the time on the resocialization ward, the staff isn’t personally to blame for frustrations I experience as a patient. Of course, at the end of the day, it’s still the staff who might be putting me into time-out, but the external factors that cause my crises, are not the staff’s personal fault. They have to work within a flawed system, after all. Therefore, here’s a list of reasons why the system sucks:

• Quality of care is determined by how many times staff discuss something possibly remotely related to care in meetings, away from the ward.
• The wards with the highest staff/patient ratio are responsible for filling in for wards with fewer staff, thereby causing their own wards to have a shortage of staff. Same if a little-staffed ward is determined to need extra staff.
• When staff are on leave, the senior nurse may have to work an actual shift, but management tasks have priority over patient care. (Note: this isn’t meant as criticism of our senior nurse, who actually tries to take time for patient care – in fact, she actually took time to speak with me this evening while she was working a substitute shift on the less-staffed other reso ward -, but as a criticism of the healthcare bureaucracy.)
• If a substitute nurse works regularly at the same ward, it is common for them to attend that ward’s staff meetings even though they are not part of the team.
• It doesn’t matter how much care you are entitled to according to your “indication”, since agencies don’t get paid per individual patient, but for the general “heaviness” of the care they provide on their wards.
• Even if you could get the care you were entitled to (which as I said isn’t the case due to the way the funding system works), you need to spiral down into full-blown crisis before the funding agency might put you in a higher class. They don’t seem to realize that preventing crises ultimately saves money.
• As a general note on care classifications: my current care class 3, “intensive support” (which means, among other things, that you presumably need guidance in your personal hygiene and often can’t go places on your own), entitles a patient to on average 13.5-16.5 hours of care a week. This includes everything, including every group meeting on the ward, mealtime, help or guidance with chores, going places with a staff member, help with paperwork, both group and individdual day activities and therapies, crisis intervention, etc. I just counted and got to fourteen hours routine care a week, but I did not count any unplannable/irregular care, and I’m pretty sure that would up the total amount of care I get quite a bit. And just FYI, I don’t get help with personal hygiene. Also, our senior nurse says that on average, clients on my ward have care class 2 or 3, so apparently “intensive” means the staff are unreachable half the time.

These are all things the staff can’t help, but it gets really frustrating when the staff end up telling me that I really can’t expect to get the care I need. Maybe not here and now, but if you get to word my care needs as unreasonable and expect me to hide them, it is unlikely that they will ever be met unless I end up in a terrible crisis. And even then, the most likely consequence is a few hours in a time-out room.

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Comments on the New Long-Term Care Legislation

I finally received a new issue of the small guide to Dutch social security, which I have been subscribed to for years. Normally, this guide appears twice every year, but I didn’t receive one either in late 2008 or early 2009. I assumed somehow the library for the blind had decided I didn’t need it anymore – which is technically true, since I needed only the 2007-1 issue for my studies at Saxion, but I never unsubscribed.

Anyway, I had been waiting to see what the guide says about the 2009 changes to our long-term care act, so I decided to read that chapter. For your information, the act was amended in 2009 to narrow the eligibility for “support”, one particular “function” (type of care) in the act. Support is described as “the activities, provided by an agency, to people with a condition, impairment or disability”. Pretty vague, huh? I permanently deleted the 2008-1 issue of the guide, so I can’t look up what it said there, but I seem to remember it was a much clearer description.

Oh wait, the description doesn’t end there. It goes on to describe not the type of care delivered, but the people eligible for it: “These people have moderate or severe impairments in social capacity, mobility, psychological functioning, memory and orientation, or display moderate or severe problem behavior.” It isn’t like you are eligible for support because you need it to function in your daily life – as is the case with all the other types of care -, but because you have a certain specific impairment, that supposedly means you need this support.

Oh, wait again, the description goes on: “These activities are aimed at enabling the recipients to remain functioning as independently as possible. That way, they can magage longer at home and admission to a residential setting or self-neglect will be prevented.” But isn’t support a standard part of your “care package” if you are in residential care? I checked all user guides for residential care – I fall under “mental health” -, and it is. Okay, I think I need to take it less literally and assume it is the need for more restrictive services that is hopefully being prevented. The guide adds for clarity’s sake, that the prevention of isolation and lack of social participation is explicitly *not* covered. So I guess we have to wait until a person who stops participating in community life and starts being isolated, spirals down into massive psychological meltdown before he’s eligible for help.

There is another problem with the so-called “prevention” in support: most people affected by the change of legislation, have received support for years. They all need to be re-assessed before the end of 2009 or before their current eligibility decision (“indication”) ends, whichever comes first. I enjoy the luxury of being “indicated” with the exact same care package I earned in 2007, in December of 2008, effective till December 22, 2009. The question is not whether I will lose services – the indication board’s strategy for implementing the amandment is to cut everyone’s funding and see who complains -, but how much.

What the people in charge of the amenbdment and its implementation fail to realize, of course, is that people who’ve had support for years, might actually function well because of this support. Therefore, an almost automatic cut in funding “because the recipient seems to function alright” may lead that person to fall apart again, because it was precisely the support they received that caused them to function alright (and “alright” is to be taken broadly, since no-one I know of actually functions normally even with support). People also may not get time to get used to the new situation. Those who retain their support but only get cut on hours, are not entitled to a transition period at all, regardless of when in 2009 their assessment was carried out. People who lose all of their support after their re-assessment, can transition for up to nine months, but only if they were re-assessed in the first three months of 2009. Those people being re-evaluated between October 1 and the end of the year, will only have transition time till the end of the year. Apparently, those who, like me, have their “indications” running till December, are supposed to have known about the new legislation (despite the fact that I at least never received a letter to that effect from any government agency), have guessed magically that they’d lose all their supports, and have arranged for volunteers or family members to take over what their support workers used to do, all before the official decision about their services is made. Note here, that we’re talking about vulnerable people. Most people receiving support are not actually capable of following what goes on in legislation. Hopefully, they all have good case managers who do follow legislation, guess correctly who of their clients will lose services, and make the transition out of services, if determined necessary by the Powers That Bureaucratize, go as smoothly as possible.

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The World of Employability vs. the World of Institutionalization

I talked with my sister on the phone for two hours a few days ago, and was frustrated when we hung up. The factual reason was that she kept making suggestions that were totally off-base about what might and might not work in improving my situation on the ward. She knows very little about autism, and what she knows, she got from chick mags. Trying to educate her is pretty difficult, since you don’t explain the nuances of autism symptoms and treatments (one topic we discussed was whether meds would help me re the meltdowns) in a phone conversation. Mind you, she was well-meaning, and the fact that we conversed for two hours, indicates that we get along quite well. I don’t intend this post as a sister-bashing rant, anyway.

What I do want to write about, is the totally different expeirences that I have from my sister, but also my boyfriend and everyone else outside of the institution I know. Most people I know offline outside of the hospital, are of college age like me. Everyone who falls within that age group, actually attends college. Now I attend some Open University courses – I just signed up to take a neuropsychology exam -, but it is not with the purpose anyone I know has with being in college, ie. pursuing a career.

My sister talks about her difficulties at university quite frequently. She is a biology major, but not sure if she will continue in this field, since she is very behind in her studies. She talks about possibly switching to history. She asks me about college programs that suit her interest, where she would know what she’ll become, because these might be more motivating to her, but then she tells me that she can’t go to a lower level college because that wouldn’t be “normal” for her. She asks me whether she can ever get into research if she by now is so behind – even if she eventually catches up, people will wonder why she took three years to earn her foundation (first-year certificate). She is concerned that future employers won’t hire her because she never had a part-time job while in college. I tell her that volunteering as treasurer for the Dutch Youth Association for the Study of Nature (plus a dozen other positions at the local or work group level) is relevant experience, but really, I have no clue. Maybe my well-meaning advice sounds as off-base to her as hers is to me, but at least she is the one starting the conversation.

I have the same experiences with other college-attending people I know, as well as on forums like Wrong Planet: I still post on the school and college board sometimes, and even occasionally on the work and finding a job board, but I realize that my experiences are likely irrelevant. Not only did they take place several years ago, but I also can’t be sure whether anything I share may just be related to something I don’t have in common with the person I’m conversing with.

For example, my sister worries about never getting a job and having to be financially dependent on her boyfriend when they’ll live together someday. I won’t likely get into any financial trouble, whether I ever get a job or not: I’m on disability and, unless the law changes again (but the change scheduled for 2010, will not apply to current disability recipients unless they themsleves choose so – the new law is marketed as giving people better opportunities for work), it’s unlikely that I will ever be forced to get a job if my current situation doesn’t improve significantly. On the other hand, I worry sometimes that my current situation will spiral down into a life of total unproductivity, not even solely with regard to paid employment, but also with regard to education and community service. There is no doubt that environmental groups will want my sister as a volunteer, even if she weren’t qualified for a paid job. Of course, I am not saying that the worry about getting a paid job, isn’t important – it is a reality that, without a paid job, my college-age relatives will be financially dependent on others -, but it’s just, well, different.

Another thing is, all my college-age relatives are busy planning out the rest of their lives. They worry that they, in their first year of college, don’t know what they want to do for a profession. I never thought about this even when I was in college: all I thought abotu, was how to get myself through the first year at Saxion, and through the first six teeks at Radboud. At this point, employment isn’t on my mind really, and actually, neither is college: when people ask me where I want to be in so many years, I usually reply: “Out of the institution.” I do still have some college dreams, but they are so vague that they never make it into anything remotely like a future plan.

Now I do still discuss college and employment with people. It’s a lot more interesting than my day activities. When someone asks whether I have a day program, I obligatorily sum up my weekly activities: movement therapy, domestic meeting and singing on Monday, a meeting with the social worker and yoga on Tuesday, movement therapy and orientation & mobility on Wednesday, nothing on Thursday or Friday (but I often go places with my boyfriend on Fridays), and mostly a biweekly meeting with the psychologist not on a fixed time. You ask whether I see any results or what goal these treatments have? No clue, and I’d have to look in my treatment plan for the official gibberish. If you can’t discuss something “normal” about my life like the city I last visited with my boyfriend (the topic I usually start phone conversations off with), discuss your college or employment issues, please. The fact that you are in college, doesn’t alienate me by definition – unless you tell me that my comments are clueless, theoretical and outdated, but no-one tells me so. The fact that I’m in an institution, does.

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Short Placement and Treatment Plan Updates

I’m stressed out by placement and treatment plan worries, so I’m not inspired to write much. I went to visit a blindness agency in a nearby town last week. They were planning on setting up a supported living accommodation for blind adults in early 2010, but that project got stuck on something bureaucratic that I forgot. Fortunately, they have two older living places, one on their institution grounds and another in the community. Both use to be training homes for people who go to or have recently graduated special education there, but they are planning on turning them into more long-term placements for young adults. The community-based home will have a place by the summer of 2010 and might have one by as early as this November. Both places have 24-hour care apart from 9:00-3:00, because residents are supposed to be at school or work then. That was the main problem that arose during the discussion: I have not enough day activities and am not yet sure where I will get them. We also didn’t discuss my autism-related needs, but we may in the future, since I am not yet officially signed up there. They are supposed to have discussed me in “the team” today and the social worker will call my social worker about the results.

The treatment plan discussion was also last week. That is, the discussion among the treatment team here. I wasn’t present – you are supposed to discuss your treatment with the psychologist and your primary nurse and then they will take that over to the rest of the team -, so I’m not sure what came of it. The psychologist should’ve E-mailed me the plan, but didn’t. If what I discussed with her and the nurse, has been accepted, it sounds quite good. However, I mistrust treatment plans – I’ve learned at my former ward, that if it’s good, it will not be followed anyway.

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