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.
Like this:
Like Loading...
Read Full Post »
