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.