Calling for Individualized Care for the Most Severely Disabled

Harold L. Doherty of Facing Autism in New Brunswick raises an important question: What do we do with severely disabled people when the institutions close? Harold advocates the reforming of the institutional system, so that those with the most severe disabilities can get quality residential care. He claims this opinion is based on a realistic approach to the care needs of the most severely disabled, and I have to agree in part, in that often the wrong motives are used to deinstitutionalize those with severe intellectual and developmental disabilities, namely, cost-effectivness and the presumption that these people are truly more independent than we think they are. Now what if they aren’t?

I have always advocated individualized care programming, and I continue to do so. This means that some people will find a sheltered environment more appropriate. Others may prefer a community-based setting with as much or as little care as they need. They key here is individualization. Most institutions, even modern ones, don’t employ that concept, and often do not really provide the sophisticated care some patients need. In fact, neglect happens at almost every long-term care facility I’m aware of. That should change. Residential settings for those who want them as well as appropriate community services should be built, but most of all, the care in these facilities should be catered towards the residents’ needs. That may not be cost-effective. So be it. Humane care is not a luxury.

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Calling for Adult Autism Services

Harold L. Doherty of Facing Autism in New Brunswick has written an open letter to the NB government on behalf of caregivers of autistic children and adults, calling on the government to establsih more residential care facilities for autistic adults.

Now I could start a rant on how it is community services that we need, on how no-one should be forced into an institution, no matter how severely disabled they are. This is true, but, through two and a half years in an institution, I have learned that some people may actually prefer to live there, and, for some people, such an environment is in the best interest. This is not to say I advocate forced institutionalization, or that I think the cost effectivenss meme should further erode community-based services for those deemed “too expensive” for them. I, however, advocate for care in a setting the person with disabilities wants to live in. And some actually want to live in residential care.

Of course, if Doherty believes that residential care should replace existing community services, I disagree. Every person who wants to live in the community, after all, should be enabled to. I also would’ve wished Harold had advocated for a broader range of services, including home care programs for autistic adults who want to live with family members or alone, but whose family can no longer provide care due to, for example, being elderly. Maybe it is time that everyone interested in autism services, gets together to advocate for individualized programming for all adults with autism spectrum disorders, regardless of severity of their disability. This may include residential care for some, but it should also include home services and community-based supported housing. I am planning to revive my Dutch healthcare blog, and maybe I can start it with a call on the Dutch government, which, in my opinion, is letting down a number of autistic adults who are falling between the cracks in the long-term care system.

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Proper Care Isn’t “Sitting on Patients”

People are locked up in isolation rooms, restrained, or otherwise severely restricted in their freedom of movement, on a daily basis. A study a few months ago found that, in the Netherlands, between 2004 and 2008, about 150 people have been secluded for a year or longer at a time. For comparison: our country has 16 million residents, and we have about 8,000 Mental Health Act treatment/long-stay orders and the same number of assessment orders each year. This doesn’t count the people locked up for a while only to be isolated again a short while later, or those locked up for months but not yet a year. One such case, which was widely covered in the media in 2008, involved Alex, a severely autistic man in his forties who had at the time the media was alerted, been isolated for over half a year. Alex had been living in a workhome (residential combined working-living placement for autistics) for twelve years, when changes to staffing and client population made him uncomfortable. He started displaying increasing irritability, screaming, damaging objects, etc. He was locked up in an isolation room at his Groningen area institution for several months. At first, he was “mobilized” (let out of the isolation room for short periods) every now and then to go on a walk with a staff member, but after a while, he was secluded 24/7. His staff didn’t want it this way, so they proposed he be transferred to an Amsterdam observation clinic, believing he’d get better care there. As soon as he arrived there, he was, however, put right into the isolation room, remaining there for another several months until his famly alerted the media. He was never formally observed until a Member of Parliament started asking questions, at which point he was let out of the isolation room and actually being observed. We weren’t informed what that observation was supposed to be for or whether it has lead to any constructive intervention plans, and if so, whether these plans have been followed through with, but it looked that his family was eventually relatively content (or of course they were shut up by the clinic).

This story emerged amidst a number of horrifying isolation room stories that made it into the media in the fall of 2008, among them two people dying at another Amsterdam clinic. Some politicians called for the abolishment of isolation rooms. At that point, a well-known psychiatrist spoke up in the media: isolation rooms would still be necessary even if large amounts of funding were pumped into extra staffing, cause “you can’t sit on people to prevent them from self-harming, can you?” Well, I have neither been isolated (time-out rooms are different from isolation rooms), nor been restrained, but indeed, I would say isolation seems better (moreover because restraint is here almost always combined with isolation or time-out). But this reasoning would only be useful if all patients currently locked up in isolation rooms, could actually only be prevented from self-harming by being “sat on” (ie. restraint). This is entirely incorrect, not only because actual attempted serious self-harm or aggression is not the only reason, or even the most frequently used reason, for isolation, but also because people are usually isolated for a far longer time than they are actually threatening.

What does it mean when a psychiatrist says that there is no alternative to isolation? Quite likely, it means that there is no alternative, within the limits of the current situation on the ward that psychiatrist works at or the wards he knows of, that is as cheap, convenient to the staff, and will “fix” the problem behavior as quickly as isolation supposedly would (except for maybe restraint). I don’t know what type of ward that psychiatrist works at, if any (he was speaking on behalf of a professional association), but I have already stated many times that the care provided at the majority of wards, does not allow for such a black-and-white reasoning at all. Indeed, if there’s a ward with 24 people with developmental disabilities and severe self-injurious/aggressive behavior (and I know of such a ward, its director voluntarily participated in a TV documentary), and there are only three or four staff members on each shift, it is impossible to “sit on” a threatening patient, but the reason has nothing to do with ethics. I don’t know what the staff/patient ratio at Alex’s Amsterdam observation ward (or his workhome for that matter) was, but if it’s anywhere like this or even if it’s a little better, it is unlikely that he will be able to be observed at all. But if this is the case, it isn’t anything about Alex that made him “unobservable”.

Besides this quantitative lack of care on most wards, how qualified is the care, really? For example, is anyone on that observation ward Alex was sent to, trained in functional behavioral assessments? I doubt it, since this is not something psychiatric nurses get trained in, and a psychologist can’t go over to the ward to observe the patients on a regular basis. (When a psychologist once mentioned this during a treatment plan meeting of mine, I was probably the only person in the room who knew what he was talking about.) Maybe there are more staff trained in this method on developmental disabilities wards (Alex lived in a psychiatric institution), but I’m not sure. It is easy to blame the patients for their “random” aggression or self-injury (hint: if aggression/self-injury is truly random, have medical causes been ruled out?), but if you were only able to collect random data due to being too busy on an understaffed ward with all the bureaucratic requirements set forth to increase paper tiger “quality”, or due to your lack of training in standardized obsevation methods like FBAs, how would you expect to find anything useful?

And if, by magic, a patient’s behavioral assessment did meet the standards, is the plan developed on the basis of that assessment, going to be followed through? Most likely not, because staff shortage, unqualified staffing, an environment that cannot be controlled to meet the individual’s needs, etc., will again mean the patient doesn’t receive proper support. It doesn’t matter that appropriate support would prevent or significantly reduce acting-out behavior, since the patient has to be molded into the sytem somehow.

I know, again, that this is the way it is now. I know we can’t change it overnight. But I also know that if we accept the reality as it is now, we will be stuck forever with people with severe disabilities (not just autism, but other developmental and psychiatric disabilities) in isolation rooms for over a year. It isn’t like more and better qualified staff could only be used to sit on patients – if that were the case, we could pull out a can of managers and bureaucrats to do that job instead of writing thousands of quality paper tigers. What quality are they writing about anyway? Not quality of care if you ask me.

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Is Institutionalization Necessary?

Stephanie Lynn Keil commented on my previous post at her own blog. The issue she raises is the one I failed to address properly in that post: whether you’d actually rather starve or be institutionalized. Stephanie writes that she’d rather starve. It is not something that surprises me. In fact, I’d not be surprised if some of the autistics who may starve from lack of services, agree (I never asked, so I don’t know). But should these really be the options?

Stephanie correctly points out that the U.S. healthcare system isn’t the same as the Dutch system, because ours is socialized. This means that healthcare is available to everyone here regardless of income, while in the U.S., many people are uninsured and therefore don’t get even the most basic healthcare services. Even if U.S. residents are insured, it is quite possible that mental health services will not be covered, or not to the same extent as somatic services. (What happened to the Mental Health Parity Act? Did it actually pass?) Waiting lists, at least for outpatient assessment and treatment, are much longer there than they are here. I don’t know about the waiting lists for inpatient treatmenr or long-term residential care in the U.S., so I can’t compare those to our waiting lists. When people are a danger to themselves or others, it is quite likely that they will be warehoused in state institutions, which I’ll eagerly believe provide poor care. Since I’ve never been to one, I can’t make a comparison to our institutions again, but it would be not at all surprising to me if it’s worse there than here. In short, I can imagine that someone would rather starve than have to live there.

However, this state of being caught between a rock and a hard place, only exists on the presumption that institutionalization is necessary and that the quality (or lack thereof) of care delivered, is a given. Stephanie opposes institutionalization. So do I, and so does every autistic I know who could starve from lack of services (FYI: all live in countries other than the Netherlands, so I don’t know their healthcare systems). This is not a matter of I thinking I, or anyone else, is too good for an institution, or somehow has whatever capacities it takes to be “allowed” in the community if the community would just see how oh so capable we are. I, for one, am not capable enough to live in the community (at least, not now) within the limits of the way my country’s system works. But that doesn’t mean the system is right.

It isn’t like, if you need 24-hour supervision for medical reasons, you should have to choose between dying of your medical condition or being warehoused in a large institution where you could die anyway, because you’re not getting nearly the amount of care you need. It isn’t like, if you’re starving because you can’t prepare a meal, remember to eat or even feel when you’re hungry, your choice should be between starvation and being trapped in a state institution, where you could die from abuse or neglect. It is a false dilemma. Oh well, that is, it should be. So why can’t we all get together and fight for disabled people’s – all disabled people, including those with the most severe disabilities – right to individualized care?

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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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Autistic Young Adult Lives in HIs Own Apartment

Kristina of Autism Vox pointed out this article about an autistic young adult who lives in his own apartment in a supported living residence. I think this article is wonderful. It shows what is possible with a good system of disability services. Ideally, every adult with disabilities could live in the setting they choose with as little or as much support as they need.

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Thoughts on the Dutch Field of Disability Services and the Difficulty in Being “Atypical”

Today, I’ve been surfing the Internet for websites of Dutch disability service agencies, and been thinking about the high rate of what I see as “differentiation” within the field. By this, I mean the rigid definitons of what clients are like and/or, if additional problems or an unusual personality profile are present, a lack of cooperation with other agencies. I am aware that, in order to preserve quality services, no agency can be a specialist on many different conditions and disabilities, but then at least acknowledge the need for services from different professionals and/or agencies.

A few months ago, I read an article in Bartiméus magazine about a woman with a visual impairment and an intellectual disability who was living in a living centre for the intellectually impaired. She was also working in a sheltered shop directed by this agency, but the staff there were unable and unwilling to accommodate for her visual impairment until Bartiméus was contacted by, I believe, the family. Bartiméus was able to perform a functional vision evaluation and advise the other agency on accommodations that would work for the client. I wish agencies would be more cooperative in this sense, acknowledging that if a client has a visual impairment, Bartiméus or another agency serving the visually impaired should be contacted, and if the client has an intellectual disability, an agency serving the mentally retarded should be involved in serving the client. Or, of course, if an agency for visually and intellectually disabled people is able to accommodate the client, this is also a good alternative, but in either case, services shouldn’t be based on a rigid belief of what the client’s abilities and disabilities are like.

In the U.S., at least outside of the educational department (where IDEA seems to accommodate students based on individuality more), it seems to be even worse, and it’s only reinforced by the blind movement, who advocate that agencies serving the blind should be completely separate from agencies serving people with other disabilities. For example, schools serving both the deaf and the blind are thought to be a bad thing, even though they have separate departments for the blind and the deaf. So where and how should a deafblind student be educated, then?

It is of course not of people with one, clearly identifiable disability who fit the profile of an agency serving that disability group perfectly, that I’m speaking here, but of those with more than one (more or less identifiable) disability, or one identifiable disability that requires services yet an atypical profile for the agency. In either of these cases, a student or client may not be adequately served if confined to only one (type of) service based on one’s “primary” disability.

I’ve never liked the concept of a “primary” disability anyway. It is used by the blind movement, in defining people who can perform according to their expectations: those whose primary disability is blindness. Yet there’s not always one identifiable primary disability, or there is one, yet the additional issues or atypical personality or developmental profile cause the person to be more adequately served by an agency serving another group of people. Or maybe even something else, as I suspect happened to me: in 1992, when I was five, I was failing at my regular school. My primary disability, obviously (I think), was a severe visual impairment, yet I was also having some additional issues, like mild physical impairments. And for some reason my parents decided to check out the local school for students with physical impairments for me. I was eventually denied based on the insignificance of my physical disability, but the fact that my parents even checked it out, proves that there’s not so much one type of service agency matching a person with such and such a disability or disabilities. As a side note, the school for the physically impaired made sure we could get a large tricycle for me – cause I was physically unable to ride a bicycle -, while most likely a low vision evaluation would’ve revealed that I was unable to ride it safely. Of course, this wouldn’t impact my riding it for enjoyment purposes only, but I wouldn’t suppose that would be a reason to get the thing.

Years later, of course, we were faced with my behavioural and social-emotional deficits that, by the school for the blind, were dismissed as being a lack of intelligence and discipline. As a result, I was advised to attend a low level high school and become a boarding student at Bartiméus.
Yet I got admitted to Sensis after sixth grade and, one year later, to a regular high school based on my academic level with necessary accommodations for blindness. I’m not going to discuss the issue of my behaviour/social/emotional issues now, since I’ll need to do that in a separate entry anyway.

Currently I’m once again being served by an agency whose current primary focus is not people with visual impairments, in that most clients have an intellectual disability or acquired brain injury. When writing about the training home here, I often feel ashamed to mention that, cause the blind movement condemns the idea that people whose primary disability is blindness (which I’m most likely considered) are being served by agencies not specializing in the blind. Now of course here, I could mention that the training home does specialize in the blind, in a way, in that it used to be its entire client group. And I feel that the people here are still quite capable of teaching me the things I need/want to learn and also have a good record where cooperation with other agencies is considered: for example, Arda is planning on contacting the rehab centre to see if Ellen (the occupational therapist) can teach me some things once again. In this way, the training home is able to serve a diverse group of clients – one in a wheelchair, several with intellectual impairments or brain damage and one blind person -, without pretending to be a “one size fits all” agency. I once suspected them of being like that, but it doesn’t appear to be that way. Of course, they’re still serving clients they (used to) specialize in – the organisation directing this project primarily focuses on the intellectually impaired and this project used to focus on the blind -, and I contend that it’s a good thing that they do (even though they seem to be doing well with the wheelchair-using guy as well), but they seem to be the least paradigmatic organisation I’ve ever come into contact with, including the rehab centre (but that may be partly due to my own blidn-focused paradigm).

I of course partly attribute that to the fact that the most common mistake being made – that I’m unintelligent – cannot be made anymore cause I have too high an education for that, but at least the assertation, made by my mother, that an agency serving intellectually disabled people cannot, by definition, serve me, is incorrect. It was based on the experiences with Bartiméus, but I contend that it wasn’t their lack of experience with intelligent people (an experience this training home does by the way have), but their extreme rigidity as to what a client being served by them is like, so what got me started with this article.

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