The Real Meaning of 24-Hour Care

Quite often, when curebies criticize autistic advocates’ position on autistics’ care or cure needs, they not only resort to personal attacks rather than attacking the person’s opinion, but they do so in a blatantly false way. For example, they decide that the (“low-functioning”) autistic advocate who claims to be getting 24-hour care and still not wanting to be cured, doesn’t really get 24-hour care, so they are not like the curebie’s child. Just so that all the curebies in the world don’t get their expectations sky high and need to deal with disappointments once they’re trying to place their adult child: a care facility, group home or supported living place is *not* like a family.

In a family, 24-hour care for a special needs child is often taken quite literally, in that the parents will be around whenever the child is not at school or daycare. Unless they have an extremely large family, it is also one couple of parents to two or three children, which is far less than the ten to fifteen common in residential care. Of course, all parents should set time aside for themselves, and most do this, but generally speaking a special needs child whose parents say needs round-the-clock care, will get close to that. A full-time job being a Mom, in this respect, can be said to be pretty close to 168 hours a week. Of course, this is extremely hard on some parents, but it is a fact of life that comes with parenting some severely disabled special needs children. I believe the parents who say that their child gets 24-hour care and mean this, but I want to tell them all: this is not what your child’s adult services will be like.

After all, a 168-hour-a-week job is emphatically not a fact of life in the field of professional care. In the Netherlands, most healthcare labor contracts have a 36-hour full-time workweek, and there are a significant number of part-time employees in this field. Also, disabled people are put in group homes of ten to fifteen residents in many cases of high care needs. And there will never be ten to fifteen nurses running around the house round-the-clock to provide care! In total the team may consist of that number of staff members (my current ward’s team consits of I think twelve nurses, and due to staff shortage we’re now temporarily down to ten beds from sixteen), but remember they all work at most 36 hours a week. At my current ward, there are two or three nurses on the day shifts and two on the night shift. This is 24-hour care, on a locked ward so patients have a serious mental illness. At the resocialization ward which I’ll finally move to this Monday, there are two nurses during the day and one at night, and there are fourteen patients plus a few who get day treatment. It is still 24-hour care. Even on “intensive care” wards, there are usually about four nurses during the day (and two at night) for sixteen patients – and remember, this type of ward is generally only for crisis intervention, not for long-term stay.

You’d think in developmental disabilities your child would have it better care-wise than in mental health? Think again. I was astonished when I watched a documentary a while back that described a locked long-term living facility for people with mild intellectual impairments and extreme behavioral problems, some of whom had been placed through the justice system for violent crimes. Most needed constant supervision to guarantee their safety. And if you think that’s what they got, you’re wrong: there were, during the day, four support workers to twenty-four residents, and the agency still needs to cut its budget.

Some parents believe that their child will need one-on-one care when he’s an adult. Don’t think he’ll ever get it. I was just reading about a living facility for severely intellectually disabled people with behavior problems. Most of the residents need “hand-in-hand” assistance, which means a support worker will have to guide them through each and every activity. There were ten people in the facility, but only two or three carers during the day and one at night.

How come people are classified as needing “intensive care”, “one-on-one care” or “constant supervision”, and still get put into facilities that lack the personnel to actually provide this support? It’s pretty simple: assistance with “each and every activity” generally refers to only the activities found to be important, such as getting bathed or dressed, having food, etc. The people in the severely intellctually disabled with behavior problems home were mostly “supported in their rooms” and “the concept of ‘group’ has been abandoned entirely, because these people cannot function in a group”. In the facility the documentary was about, residents were locked up in their rooms when a support worker couldn’t attend to them. I’m afraid the same happens at this other facility. Of course the residents get “24-hour care”: they will be helped with each and every daily living activity. But of course in your life, not all of your time is taken up getting your child dressed, bathing and feeding him and doing other such activities, and maybe your child would have far less behavioral difficulty if you just locked him into his room for most of the day. Good for you if you don’t think it is ethical to lock up a person into his room or to deprive him of most opportunities to socialize or do leisure activities, but the agencies who will fund your adult child’s care facility, disagree. A reason for “cure”? No, a reason for strong activism for better care.

Read Full Post »

Apeldoorn Supported Living Place Proves Conditionality of Community Supports

This is how the system works, apparently. I called an Apeldoorn placement I’d been offered a few weeks ago, because I had concerns about their supports, and it turns out that I’m falling between the cracks in some of the exact ways that I pointed out a few days ago. I cannot get nearly enough support if I go into that place, because:

• The staff/resident ratio is 1/16 during the day on weekdays and part of the day on week-ends (there’s an emergency staff sleeping over at a nearby place, but that’s not the problem). This would’ve been difficult already in group settings where residents share chores and can rely on each other for help, but it is pretty much impossible if I am to manage a complete household on my own. It just occurs to me that the staff/client ratio could have been higher in non-apartment settings because residence and care are not separated so the support agency gets to pay the rent. I don’t know whether this is a substantial reason though.
• There is no external structure. The support worker claimed that this is due to its being an aparment setting, but all other apartment settngs I know (training home, the other Apeldoorn place on whose waiting list I am, and the one in Malden I slept over at in 2007) do have some external structure, for example by having the option of having dinner or coffee together in a shared part of the complex. The lack of external structure is really one major reason why I couldn’t cope in my own home (and a schedule apparently didn’t help enough): every tiny change in my non-routine, such as an unexpected problem, my persevering on a project for too long, etc., meant I lost track of what I was supposed to do and couldn’t “just do what’s next on my schedule”, and there were no external factors that could get me back on track. As a result (among other reasons), I got overwhelmed by all my chores and still ended up wandering during spare time. For those who think I’m misusing an autism stereotype for an excuse, because I “never had any trouble with changes” or because my parents didn’t have dinner ready at the same time each day, either: this isn’t really what I mean. Rather, I mean that I need *some* reminder that makes sense (and apparently, time-of-the-day alone is not enough), that I will connect to, say, cooking, having dinner, doing laundry, etc. Actually, I think in this sense the fact that I *don’t* have rigid routines, is giving me problems.
• With regard to required independence, you are expected to be able to do the “basics” (the support worker’s word) on your own. The example she gave about cooking is you are supposed to cook for yourself, but can get help with, for example, new recipes. The same sort of thing goes for other activities. Of course, there is the fact of having had very little practice, but that is not my main concern (as I could get some practice now or at the resocialization ward on whose waiting list I am). My main concern is that, even in an optimal state, I can only cook once or twice a week. Microwave meals were invented for a reason, of course, but the same goes for cleaning, shopping, and other duties: I just can’t handle a full week’s chores (and if someone says that I’m just way too adherent to cleaning etiquette, you haven’t seen the mess an awkward, blind person can make, which my college student sister feels more urgent about cleaning up than I do).

With this stuff already, I didn’t even think of mentioning behavior. I just told the woman that I’d try to make an appointment with reso’s psychologist to discuss the matter. The project opens in 1 1/2 weeks, when it is highly unlikely that I will even be at reso yet, and new regulations make it extremely hard to get funding for a transition period. However, in all honesty, even if they could somehow get funding, I think it won’t work out, because, well, executive skills like the ability to structure your own day, taking into account a full week’s duties (plus transition-related duties), are extremely hard, if not impossible, to acquire merely through training.

Read Full Post »

Deinstitutionalization and the Conditionality of Community Care

There is a lot of discussion about deinstitutionalization. It’s apparently getting ground in the US, and with the current ecnomic meltdown, disability agencies advocate for it as a cost-effective alternative to large developmental centers. Of course, I have nothing against deinstitutionalization, and actually advocate for it, but only if done correctly. And all the lingo thrown in about disabled people, in the time of economic crisis, especially needing to be (allowed to be) independent and productive, worries me. Not because it’s not an appropriate goal, but because there’s a risk of it being carried out the wrong way, which may in fact lead to the kind of consequences pro-institution people warn about.

In the Netherlands, whenever deinstitutionalization, which happened for the developmentally disabled already about one or two decades ago, is being discussed, one always comes up with one horror scenario or another for which deinstitutionalization by itself isn’t responsible but is being blamed anyway. People with multiple disabilities who are dying because of an unqualified person providing them with nursing care, for example, or those with behavioral differences becoming homeless or ending up in the criminal system because of inadequate supports. Deinstituttionalization isn’t to blame, but what went along with the “but they have capabilities” mindset, is:

• College-educated registered nurses, who used to work in institutions, were fired and replaced with cheaper, yet less qualified, “care workers” and “hostesses”, who are housewives really only qualified for cleaning jobs but ending up doing nursing care in the absence of qualified professionals.
• Since community-based people with disabilities, like everyone else, are expected to have jobs (or “day acitivities”) outside of the house, staff are usually not present in the homes during office hours. As a result, people who are sick, need to leave for work anyway or stay home without care. People who cannot work outside of the house for various reasons (inability to travel, old age, inability to cope with multiple environments due to, for example, autism), are out of luck in most community care settings.
• People with behavioral differences are often turned down by community facilities, because these facilities claim not to have appropriate staffing, or because, despite being in the community, they are still group placements and the staff fear other clients are bothered by one client’s behavior. When people with severe behavioral problems (which could lead to criminal or seriously threatening activity if not handled adequately) are accepted anyway, they are often not provided adequate support due to staff shortage, and may end up in the criminal system or homeless after all.
• There is often an incorrect belief behind deinstitutionalization that people out of institutions will be more independent and hence need less support than had they been left in. This presumption is, quite simply, not true for many people: whether the staff’s basic attitude is condescending or encouraging, which may make the real difference, has nothing to do with where the placement is located, and it is incorrect to assume that everyone can truly clean up their own homes, cook for themselves, travel safely on their own, etc. As a result, someone who cannot cook or clean her home, may need more support (from her “care workers”) when moving into the community than she would had her food just come out of the institution’s (cheap) catering service and the home been cleaned by the institution’s cleaner, and it is only presumptuous to think that she will learn to clean and cook eventually. And, of course, it *is* true that someone who isn’t safe in traffic, could transport herself on institution grounds without support, but will need to be accompanied by a staff member if transporting herself in the community.
• If people get care in their own homes or apartments, they are expected to be able to cope with care only at fixed times, and the number of care hours they can receive, is limited (with daily living support, usually to ten hours a week). People who, for medical or mental health reasons, cannot cope with that, are required to go into specially set-up community facilities, in which case the other problems I mentioned, will occur.

Deinstitutionalization is not at fault here. The conditional philosophy – “But they have capabilities!” – that often drives it, often is. Because this is how the system works, this is how I used to elbow myself onto community housing waiting lists by claiming that I do have all the capabilities they want me to have, only to find out either that I’d just been too honest about one little thing and it earns me another recommendation that I first finish “treatment” (ie. stay in the institution until I meet the community placement’s criteria), or that I’ve been accepted into a community placement while having no clue whether I can actually meet up to its standards. I sometimes feel like fighting this conditionality in deinstitutionalization – because they are often disability-related problems the agencies have something against -, but sometimes, I just feel too deflated and passively accept that this is the way it works. Call me dependent, lazy, unwilling to be productive. I don’t care. I’ve been in “the system” for 3 1/2 years and that’s long enough to know it isn’t going to change just because I want it to.

Read Full Post »