Thoughts on “Disability Norm” and the Push Towards Community Living

Last week, Rachel Cohen-Rotenberg of Journeys with Autism wrote a post on visibility and human worth in the disability community, which discussed the overrated emphasis on achievements within a disability context, whereby people with severe disabilities or their carers/parents are ignored or outrightly silenced. Today, guestposter Claire posted about “disability norm” and some other problems with the social model of disability as it applies to people with severe disabilities.

I am not as severely disabled as Claire’s daughter, but even I can relate to some of the problems Claire and Rachel highlight in their posts. Claire writes:

The fact of the matter is that my daughter’s needs are not supported by, nor even reflected in, Disability Norm. Because her inhibitory functions were destroyed by the stroke, she can’t stand overstimulation of any sort, be it physical or emotional. She needs to be “segregated,” to an extent, in order to be most comfortable and to function optimally. Full-inclusionary practices are at best uncomfortable and at worst unsafe. Ideological activists scream that there is nothing in between complete seclusion and full inclusion. I see many realistic options in between.

There I can relate. I have lived in the community and lived in an institution, and, though I never consciosuly chose an institution over community life, I am deciding to live in an institution for the next couple of years at least. I like the quietness and safety of institution grounds (except when there’s construction going on!). I have a need for 24-hour care some of the time – unlike Claire’s daughter, I don’t literally need 24-hour supervision, but I need someone close at any moment of the day. On the other hand, I want to have some connectedness with the “real world”, but to be honest, not because it is the non-disabled world, but because I want to be connected to people I love. You might say that, actually, I should be able to get community-based supports that suit my needs while for example living with my boyfriend. This may be what society should be like, but as long as it isn’t, is the burden on me, or on Claire and her daughter, to prove I or she can live in an inadequate community setting in order to be “allowed” teh care we need?

After all, most community living activists do not claim that people should be allowed to live in low-stimulation areas, with specialized medical equipment, and 24-hour supervision, for example, within the community. In fact, most community living activists do not advocate for people who have relatively frequent meltdowns, like me, to live in the community. They may theoretically think so, but in practice it all boils down to how cost-effective community living would be. Well, what if, in cases like mine or certainly Claire’s daughter’s, it is not? I have always advocated for disabled people’s right to live in an environment they choose, and that may be segregated for some.

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Dutch Autistics Receive Poor Care

According to a report by the Dutch Association for Autism (NVA), autistics often get the wrong care. Staff at residential care facilities don’t often know how to handle autism, hence causing autistics to end up on crisis wards or in isolation rooms. The NVA has been collecting stories from mostly family members of autistics about poor care since 2008. I at one point considered submitting my own story from my former ward, but didn’t since I never ended up in a “real” isolation room.

To me, it is obvious that care staff need more education about how to deal with autistic clients. This of course will not prevent outright abuse, since every adult should know that is wrong, but it will prevent unintended harm done to autistics by staff.

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Agricultural Communities for Autistic Adults: A Comparison to Dutch Workhomes

Yesterday, at the official Autism Speaks blog, there was a post about agricultural communities for autistic adults. These, in the Netherlands also known as “care farms”, provide housing and employment for adults with autism in a supported environment. They range in size from seven to thirty beds according to the article, so none are institution size. That doesn’t mean no institutional power dynamics though, so that is a possible problem: size is not what makes an institution bad.

The new organization, Agricultural Communities for Adults with Autism, aims to collaborate to form two hundred of such communities around the United States. The reason is that the current communities have huge waiting lists. The same goes for care farms and especially workhomes in the Netherlands, which is what this initiative reminded me of.

A workhome is a sheltered living and working environment for autistic adults. Unlike these agricultural communities and most care farms, most workhomes are part of mental institutions. However, as they operate independently, the problem of congregation is largely solved. Unlike at a care farm, workhomes offer more varied work opportunities, such as housekeeping, arts, industrial work, etc. At least one is a farm, which provides both agricultural and other work. Like the agricultural communities mentioned in the post, most provide day programs to adults living in the nearby community. Some, like the farm workhome, are part of a community, while others are located more segregatedly, but in the Netherlands, nothing can be on the edges of civilization due to our population density.

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Forced Institutionalization: Loopholes in the Dutch System

Yesterday, s.e. smith wrote a very interesting post at FWD/Forward about forced institutionalization. Specifically, ou discusses a recent legal victory for a woman whom Medicaid tried to force into an institution in 2008. From there on, however, s.e. continues to discuss the more subtle ways of force present in a society that devalues disabled people’s independence and autonomy.

The whole story got me thinking about my own situation and the situation in the Netherlands in general. Firstly, legally speaking, we are not as advanced as the United States where it comes to disabled people’s right to live in the community. There is no equivalent to the Olmstead case here, or for that matter any legislation which rules forced institutionalization discriminatory. Here, we rely on a few bits of long-term care legislation which are theoretically supposed to enable people with disabilities to access care in their own communities, but which in practice are full of loopholes.

First in the line of presumed-to-enable-community-services regulations in the Netherlands is the Community Assistance Act of 2007. This bill moved some home care services away from the national long-term care insurance into the local social care system. The idea was that local communities know their residents best and are best able to provide for their needs. The reality is that some cities grant people more services than other cities, and most people lost services as compared to before the Community Assistance Act. Besides, quality of care went down with along-the-way privatization.

Second and most promising came, in 2008, the “complete pacakage at home”, which is, in theory, an innovative way to get people with disabilities care equivalent to an institutional setting but in their own communities. People can, if they have funding for residential care, request their care provider to provide their services in their own home. However, the biggest loophole here is that the care agency decides whether they want to provide this type of residential care at home. Alternatively, people can, also as of 2008, access a personal care budget for residential care – personal care budgets used to be open to home care only -, so that they can hire their own care professionals. The problem here is with the management of the care money, which the person with disabilities should be capable of themself. Besides, health minister Klink just closed personal care budgets to new applicants until the end of 2010, so those who would, with a personal budget, be able to live in their own communities, are possibly forced into institutions again.

However, even if the law were perfect, which it isn’t of course, that wouldn’t mean all people with disabilities could get the support they needed in the setting they desired. As s.e. writes, legislation doesn’t change bad attitudes. Lack of access to information can be one barrier to individualized care even if the law is behind you. Lack of resources or skills to fihgt a legal fight can be another. I, for one, have the theoretical knowledge to know that I could, maybe, live in the community with the services I need, but I do not have the ability to fight for this.

Besides, the risks of such a non-conventional care arrangement are quite high. Should your support funding be denied – which is easily done with both home and residential supports -, should an agency refuse to provide in-home residential care, or should you not be able to find a care provider, you’re stuck in your own home possibly without care. I, for one, have had more than enough experience with falling apart while in my own home and the consequences it had, that I’m simply too fearful to undertake such a risky care path, even if it could enable me to live in an environment I choose.

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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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Getting the CCE Involved

The CCE is the Center for Consultation and Expertise. According to its website, this is its aim:

The Center for Consultation and Expertise (CCE) aims to make exceptional care needs manageable. An exceptional care need emerges when a client’s problems are so complex that their own care providers cannot solve these anymore. The quality of life is than seriously at risk. The CCE carries out consultations in all sectors of long-term care, and for this purpose uses an extensive network of consultants. The CCE uses the knowledge and experience from consultations to build expertise, which will be handed over to care providers.

My psychologist is going to get the CCE involved in my case. I heard about it already about two months ago from my primary nurse. That is, she told my occupational therapist while I was in the room – if I want to keep up-to-date on the latest in my treatment, I should make sure to attend the meetings with my OT. However, the psychologist hadn’t discussed the matter with me herself yet, probably due to all the talk that came inbetween due to my bad situation lately, the medication decision (which was my psychologist’s idea initially), etc. Nonetheless, I had time to think it over and had pretty much decided I was fine with it.

I do have my reservations, but these are primarily emotional. First of all, am I really this bad off? The CCE is the agency involved with people in the stage before they make it into newspaper articles about forced commitment, isolation rooms and electroshocks. There’s a word important in that sentence, of course: before. I have never actually seen a CCE consultant approve of any of these practices in such newspaper articles; when they were involved, they were usually either openly opposing it, or they were cited by family members or other staekeholders as involved in the prevention of these practices. In these cases, the institutions are usually blamed rather than the CCE.

But I am not certain whether I trust my institution’s staff enough that they will not take these measures, and, in this light, getting the CCE involved feels like the pavement on the road to hell.

On the other hand, whether we get a consultant involved or not, does not change the actual status of my situation: if I were on the road towards an isolation room, that would not change if I consented to get the CCE to look into my case to see if there is anything to be done about it – besides, the main reason my psychologist wants to get the CCE involved, is to help find placement for when I leave here. Getting a consultant involved will not detereorate my situation.

Lastly, I have the big, fat Not Me factor that makes me feel like this shouldn’t be happening to me. You know, I am not this bad off, am I? Well, yes, in a sense, I am, in that we are obviously getting stuck. But… I am not like the people I blog about, am I? That’s the curebie reality denier voice in my head: “Your care needs are not complex. You can write. Your quality of life is not at risk. If it was, you’d want a cure.” This is obvious and utter horse manure, but it is still at the back of my mind. Is this disability rights activist suffering from internalized ableism? Probably.

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Deinstitutionalization vs. Poor Care, Take 5,374

I couldn’t stop cringing when I read an old Autism Research Institute editorial calling for the reopening of instituttions for people with developmental (“behavioral”, argh!) disabilities. The editorial dates from 1997, but I’m skeptical that ARI has changed its view, given that it is still prominently displayed on its website.

It’s the same old song again, except that the ARI editors are accusing disability advocates of the same thing they do themselves: abuse and neglect in some institutions, they say, is used as an argument to close all institutions. Then, they go on to use poor care at some community facilities as an argument against all community-based facilities. Speak of double standards, huh?

I am not a radical community living advocate. In fact, I believe that there is no reason to force people out of areas they want to live in, and if a large group of people happen to want to live together on sheltered grounds, that’s fine with me. Deinstitutionalization shouldn’t be about the location or size of housing, but about the force and abuse involved in many institutional settings – and that includes small, community-based settings with instituttional mindsets.

This is the umpteenth time I say this again, but deinstitutionalization shoudl also not be about cost or about level of trained staff. There is no reason community facilities should be hiring staff “off the street”. What is wrong with a trained nursing team in a facility for people with multiple or severe disabilities, or staff trained in support strategies appropriate to people with behavioral difficulties? I don’t see why deinstitutionalization always has to go along with poorer staff training and fewer staff in general.

Rather than fighting over where a facility should be located and how large it should be – which is up to the people with disabilities to decide, within the limits of local governance over the built environment -, can both sides focus on the real issues please? Address abuse, underqualified staff, force, neglect, client safety… These are important. Changing the size or location of a facility, in either direction, will not change these.

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New York Ordered to Move Mentally Ill Out of Group Homes

A judge ordered New York to move people with mental illness out of group homes and into the community. This is a good thing. The state is ordered to open 1,500 supported housing units each year for the next three years, so that most of the people now living in the New York City institutional adult homes can move into their own apartments or small homes. Only those with the most severe mental illness, including those who are a danger to themselves or others, and those who themselves choose so, should remain in the group homes.

This is precisely where my main worry comes in: who are those “most severely mentally ill”? Clay Adams of Comet’s Corner is also concerned. With the cost of rent, a nurse and a healthcare assistant to provide the necessary care, $40,000 is easily reached by those with more serious mental health problems. I, for one, at least used to cost more than that. What will happen to these people, who are truly not “cost effective” by the judge’s standards? My guess is that they will just be left with less than optimal services until or unless they become a threat to themselves and others, at which point they will be steered back into the adult home. No matter how small this number may be according to the mental illness advocates, civil rights are still conditionally provided to those for whom it would be feasible again.

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Psychiatric Deinstitutionalization and the Premise of Cost-Effectiveness

A few days ago, the author of Lunatic Fringe commented on the closure of Pennsylvania state hospitals as a positive thing. On the same day, however, Crazy Mermaid commented on the shortage of psychiatric hospital beds as something negative. These are two rather opposite views on the very same issue: should we be keeping or even building new psychiatric units for people with mental illness, or closing them down and sending former patients into the community?

First, let me be clear on this: I am all for deinstitutionalization. In this sense, I support the closure of state hospitals, where long-term patients are usually warehoused without any prospect of ever going back into the community. The solution to the homeless population is not to cover them away into psychiatric institutiotns far away from civilization. That might solve the “problem” for the general public, who no longer have to see homeless people on the streets, but it does not solve the problem for the homeless themselves: while they may now have shelter, their quality of life is likely not going to be all that good when warehoused in a state institution.

Unfortunately, the presumption behind deinstitutionalization, which I see popping up time and time again, is the exact reason it doesn’t work: it is supposed to be cheap. Long-term psychiatric patients are suddenly, through some shift in philosophical or political thinking from people who don’t have mental illness themselves, seen as oh so capable of living and working in the community. Go close the state hospitals and discharge the people into “normalized” society. Guess how cost-effective it is to provide them with community-based services? Wow, saving money, that’s great!

I see the so-called success rates over at Lunatic Fringe, but since there are no statistics, I have no clue what a “vast majority” is. Even if I had statistics, these would not really say much to me, because they don’t communicate the lives of real people in real communities. We do not know what success means. Does it mean the people have a good quality of life, or does it mean they are hanging on just enough so that the crisis team won’t have to take them seriously, like I was when I still lived at home? We do not know, but I will bet that there are a number of people who fall into the latter category. And then there are the people who do not fall into the “vast majority” of success stories. What happened to them? Have they found a warehouse bed in another state institution that didn’t close? What about the people who weren’t discharged upon the institution’s closure?

The presumption of cost-effective community care sets an artrificial barrier for people to live in the community: only those who are deemed to be cheap enough, are being deinstitutionalized, and if those who aren’t cheap enough, are being discharged, too, the risk is high that they will have as miserable lives as they had when living in the institution. These people, who cannot hold on to the standards of the rcovery model, apparently don’t matter.

I have said this a million times in reference to people with developmental disabilities already, and the same goes for people with mental illness: people need appropriate care in a place they want to live in. Deinstitutionalization is great, but it is only great when appropriate, individualized community supports are in place. These supports should not just cater to the crazies who really can have a job but no-one bothered to see, but also to those who can’t. Warehousing isn’t good for anyone, but we shouldn’t have to prove how cheap it is to release us in order to be allowed to live in the community.

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