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.
Or is it? We are a very rich nation so we might expect this kind of luxury but it is a luxury none the less. In less fortunate countries and in our recent past the care these people need would have to be provided either by family or charity or more often by an undertaker. It may be that we have a fundamentally different viewpoint, you seem to depart from an ideal state of how it ought to be and criticize reality for not being able to reach your standards. This is by definition not a realistic approach, a realist begins his voyage in reality and aims for a better, but in most cases not ideal future.
An idealist such as yourself will find it very easy to convince other idealist, he needs only explain what’s wrong and the idealist will be eager to smurf (I can’t find the word I’m looking for) any solution proposed. As a conservative, a happily cynical realist, I’m a bit harder to convince. The way you describe the problem is enough to set my alarms off, it is not a luxury, so it must be a necessity, it takes priority over anything it would seem. I can see it would be nice to make the world a bit nicer for these people, or even to transform their lives from hellish to truly okay… How great the impact would be is something your post did not teach me, it does not quantify the problem, nor did it quantify the effect and cost of th solution. You paint a very binary world. This would certainly impress the choir but if your goal is to actually advocate for these people, and you claim you do, you should preach to people who believe differently. So please, tell me why we should, here and now, throw more money at this problem and how this help and why such drastic priorities are in order.
By the way, I wrote this on my cellphone so please ignore the many typos.
Well I never said I was a realist, and as you know, healthcare is a priority of mine. That does cost money that could’ve been spent on other things. If you consider having basic needs met for institution inmates a “luxury”, then you are entitled to your opinion but I strongly disagree. (And if you believe serious neglect doesn’t occur in Dutch institutions, I can tell you that it does.) We could argue about my further points, because of course I do strive for more than just having patients’ very basic physical needs met, but I was referring to that when I said it was not a luxury. By the way, I don’t care whether it’s the government tha tprovides care, charity, private businessmen or family. I do believe that quality of care is better guaranteed in a socialized system though.
I definitely agree with this. Recently, I was reading the blog of a mother with 2 children with mental illness, one of whom is very ill at the moment, and she said that her daughter may need long-term hospitalization, but it simply doesn’t exist anymore except for people who have committed crimes. It made me think that we definitely need a better solution for people with severe disabilities.
(This is the blog I’m referring to, by the way: http://www.morethanwords.typepad.com/)
Individualization of care, no matter where a person is receiving care, is key. I agree with you/