"Our greatest need at present is to develop services for adolescents and adults. What is needed is a range of residential and non-residential services and these services need to be staffed with behaviourally trained supervisors and therapists. In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family or the community.
"We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision. That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected. Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development.The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff."
-NB Autism Expert Paul McDonnell, September, 2010 CBC Interview, (highlighting added for emphasis - HLD)
There is often a split between higher functioning persons with autism and persons who require life long care, persons who can not advocate on their own behalf. and persons who require life long care, persons who can not advocate on their own behalf. I am the parent of a 21 year old with autism, "profound developmental delay"/intellectual disability. As a young child he was interviewed by someone from one of the community based organizations in NB but they decided they would not work with him ... as was their legal right. The reality though is that some with more severe characteristics require intense, expert care not available generally. My son is one of those. ... As I age and eventually die he will require a very intense and expert level of care not easily found in the community.
NB Needs an autism care and treatment network that would accommodate persons with autism in need of different levels of care with homes around the province near families and a centre in Fredericton, near our developing autism expertise, for those with the most severe care requirements. Well meaning people in NB have resisted exactly this type of network while looking the other way when adults with autism are sent out of the province to Spurwink Maine or to our Northern Bordhe split generally on adult care issues exists between higher functioning persons with autism and severely autistic adults who are in Campbellton at the Restigouche Psychiatric Hospital as far as possible from by far the greatest number of NB families. The Community groups and persons who oppose an autism centre and network modeled on integrated, educational, professionally trained principles have no problem sending our most severely autistic individuals to the hospital type institution they do despise in Campbellton NB as far away as possible from the vast majority of families who have provided them with care and who love them.
It is time for NBers to stop cowering in fear and yelling "no institutions, no institutions" whenever we discuss the long term care needs of all adult persons with autism. It is time to take an honest look at the real needs of NBers with adults and build a network and centre integrated into communities, with a focus on education, positive living experiences and individualized curricula with properly trained professionals and staff as close to families as possible around the province of NB.
