Friday, March 21, 2014

Through the Cracks: For Adults With Severe Developmental Disabilities Huge Gaps Remain

The philosophical, feel good, cliches of the Canadian Association for Community Living and its provincial organizations such as the New Brunswick Association for Community Living paint a pretty picture of a bridge permitting those with severe disabilities to cross over to a wonderful life in the community. 

The reality  is much different, particularly for those with severe autism disorders, intellectual disability, epileptic seizures and other poorly understood conditions. For them there are huge gaps and no bridge at all.  

Government should be held accountable but so too should organizations like the CACL and the NBACL who provide cover for governments by continually opposing efforts to develop modern, secure, decent, professionally run facilities between the levels of the untrained, unsupervised, inadequate group homes and the psychiatric and medical hospitals where many with severe developmental disabilities are dumped out of sight and mind of all including the CACL and the NBACL.

The United Church Observer article, Through the cracks, by  Kevin Spurgaitis,  tackles issues relating to the lack of available care for adults with severe developmental disabilities including autism disorders.  Simply by addressing, and shining a spotlight on the lack of places that can provide permanent residential care to those with autism disorders they have helped to address the hard realities faced by many with severe developmental disorders including severe autism.  I was interviewed by telephone by Kevin Spurgatis, who was exceptionally courteous and respectful, qualities which show up in the article itself.  I thank Kevin Spurgaitis and the United Church Observer for their effort.   

It will probably come as no surprise though, to anyone who knows me on a personal level, or knows my views on disabilities and the role played in Canada by the Canadian Association for Community Living and its New Brunswick version the New Brunswick Association for Community Living, that I believe Mr Spurgaitis's article does not address the responsibility of the CACL and provincial divisions like the NBACL  for their roles in creating the cracks through which people like my son with severe autism disorder, intellectual disability and seizures fall.

The feel good and rigid anti-institution mindsets of these organizations have helped prevent the development of facilities which would provide permanent residency, care by properly trained caregivers and treatment for their serious conditions.  The ACL organizations persistently argue against anything that might be labelled an "institution" even if there is no alternative available.  In doing so the NBACL has helped push NB'ers with severe autism disorders to lives spent in the Restigouche Psychiatric Hospital, to hospital wards and to facilities out of province such as the Spurwink facility in Maine. 

This is not speculation on my part. I have participated in several education and adult disability reviews in New Brunswick in which NBACL representatives have fought bitterly against any meaningful attempt to develop the necessary facilities to ensure a quality life for those, like my son who suffer from severe autism, intellectual disability and seizures. As long as the NBACL continues providing feel good cliche coverage to governments for failing to provide a modern residential care and treatment facility  to those with severe needs, people like my son will suffer much more limited lives.  Here in New Brunswick our government's favorite charity organization, the NBACL, is a major contributor to the problem, they help ensure that people like my son will continue to fall through the cracks.

Although my views diverge from the portrait of the CACL and their provincial counterparts as set out by Mr. Spurgaitis and the United Church Observer I do genuinely appreciate the fact that they have raised the issue.  As I said I also appreciate, very much, Mr. Spurgaitis' courteous, respectful questioning and his inclusion of severe autism disorder in his article.


VMGillen said...

Well, we soldier on, eh? Advice: community living can work very nicely - but it MUST be thought through. One thing I've noticed is a complete lack of consideration for aging-in-place (or, for that matter, "visit-ability" by aging parents). Yeah, our kids will outlive us.

one other thing: what happens to the kids who do not have activist parents? the ones who come from low-income families, or families where every spare cent has been invested in the child? worst of all, the ones with nobody connected to them in any way? That's why active activism is critical.

Roger Kulp said...

As someone with an autism diagnosis somewhere in between Chris Stafford and Conor,you have no idea how grateful I am every day that a treatable metabolic cause was found for my autism,and that said treatment was well underway for me by the time mother died.I now know from my cerebral folate deficiency Facebook group,that treating the autism,a lot of the behavioral stuff,and learning to do things like bathe,do the laundry,cook,function in school, pay the bills,etc is a lot easier than treating the seizures,and other medical problems.I now know this is fairly common in autism caused by neurometabolic disease.

Notice there is nothing about Stafford going to college.He is more realistic model of HFA than Ari Ne'eman,or John Elder Robinson.

I know that I would not last long in a group home.The diet,the basic rules,probably having to give up my very large record collection,my cats,etc.I have become incredibly good at making very good,and very unusual GFCF bread,cakes,and cookies.Something I don't know if I could have done elsewhere.

I do think everybody with developmental disabilities should try to live as independently as possible.I have heard all sorts of horror stories about sexual abuse,lack of medical care,etc in group homes.I don't know enough to say how common this is.Also,I don't really know exactly how bad Conor's intellectual disability is.I know there are a number of places in the US,that are working farms and ranches that take in people with intellectual disability to live and work.I don't know about Canada.Because of my one experiences,which I will admit are unique,I am a big believer in adults with developmental disabilities living with parents as long as possible.

Grover Rockwood said...

This isn't just a problem when it comes to autism, and sadly it isn't just one country.

First we see yet more war against proper treatment for autism and care for them. Every time I hear someone tell me autism isn't a disability or tells me it's a new evolutionary step, disgust me to no end. This just makes getting proper treatment to those with autism a thousand times harder. This just gives people with high functioning autism delusions of superiority.

Why should you have to care for Conor until the day you die? You did your job, he's by all standards grown. He gets to go out on his own, whether this means living in a group home, nursing home, or if there is no choice, institution.

This is just the life dealt to him and myself with another mental illness. Believe me when I say it's not going to get better before it gets worst with treatment for mental illness. It's my belief it's going to get much, MUCH worst.

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