NIMBY: New Brunswick Sends Severely Autistic Adults to NB's Northern Border with Quebec and To Maine, Far From Most Families

NIMBY, Not In My Back Yard: Severely autistic NB youth and adults are sent out of the province to the Spurwink facility in Maine and to the Restigouche Regional Psychiatric Hospital in Campbellton on NB's northern border with Quebec far from families and communities in NB's more heavily populated south.

 The UK Daily Mail has reported the story of a family whose severely autistic  son who was sent 250 miles away for treatment including for severe self injurious behavior.  The distance involved during his stay of more than 2 years meant 500 mile round trips to visit their son who had never met his sister:

Josh Wills was diagnosed with severe autism when he was two years old

For years his parents Sarah Medley and Phill Wills cared for him at home

But around two years ago his self-harming became so severe they realised he needed specialist treatment

He was transferred to a centre in Birmingham for specific care

But 20 months later his parents are still having to do the 500-mile round trip from their homes in Cornwall to visit Josh, who has never met his little sister

A petition #bringJoshhome has received 176,000 signatures

NHS Kernow say their plan is to bring Josh home but they have to ensure the specialist care is available before the teenager can be transferred

The UK is not the only jurisdiction lacking essential service facilities for persons with severe autism disorders. Here in New Brunswick substantial sums of money have been spent over the last 10 years housing individuals across the border at the Spurwink facility in southern Maine. Severely autistic adults who can not function in the group home system which lacks autism trained staff and professional supervision.  The exiles in Maine actually cost substantial  sums of money to the province with conservatively estimated costs of $300,000 per person per year. Adults with severe autism disorders who require permanent residential care and treatment are sent to Campbellton on NB's northern border with Quebec to live out their lives far from family members in NB's more heavily populated south. 

A centrally located special care residential autism facility, based on a modern,  non hospital,  educational and community inolved model was proposed by Paul McDonnell in 2010 and simply ignored by ill informed government decision makers.  During the "connecting the dots" campaign I met with then NB Youth Advocate and Ombudsman Bernard Richard, Christian Whalen who worked in his office and Professor McDonnell.  After representations from McDonnell Richard looked to Whalen for a response which was dismissive.  Neither Richard nor Whalen have ever made any statements to indicate that they have any real knowledge of autism disorders but they don't have to in NB.  Here in NB careers are built by uttering community and inclusion cliches without actually understanding the subject being discussed or the consequences of failing to take meaningful action to address serious challenges like those presented by severe autism disorders.

Contrary to their own community and inclusion cliche statements our government leaders have  been quite content to send our severely autistic adults to Maine and to NB's northern border with Quebec far from their own back yards.

Community? Inclusion? NIMBY, Not in My Back Yard, sums up much more honestly and  accurately NBs failure to help autistic adults live with dignity, proper care and treatment  near family and friends.

Autism Parent Advocacy and the ASNB AGM March 23 - Our Voices Must Be Heard!

Parents and others affected by autism disorders in New Brunswick are invited, and  asked, to attend the ASNB 2013 AGM this Saturday March 2013 at MacLaggan Hall UNB Fredericton formally beginning at 12:30, but open for discussion at 11:00 am.  Autism families have been excluded from government autism decisions, we are no longer stakeholders in the eyes of the Alward-Carr-Porter administration in matters affecting persons with autism, and if we do not prepare, once again, to speak up and be heard our children and loved ones with autism will suffer the consequences.  Come to the meeting this Saturday and prepare to fight for our loved ones with autism.

At present NDP leader Dominic Cardy and former NB Liberal leadership candidate Nick Duivenvoorden had indicated they will be attending the ASNB AGM.  An invitation to the Alward government made 7 weeks prior to the ASNB AGM was met with a reply indicating that all none of the invited ministers were free this coming Saturday afternoon.   Autism parents, because of our past advocacy successes, and insistence on serious, evidence based help for autism have been consciously excluded from autism decisions by thcurrent  government.  

Autism progress resulting from strong parent advocacy was made over the years. Early evidence based intervention, autism trained education aides AND the reversal of the decision to close the Stan Cassidy Centre autism team all resulted from autism parent advocacy.  All gains were made through direct discussion with concerned political leadership including Bernard Lord, Tony Huntjens and Shawn Graham.  Some members of the bureaucracy were helpful but for the most part officials at senior levels in Education and Health in particular opposed vigorously the autism progress that has been made.  Since the election of the current administration the bureaucracy has been working hand in hand with the Alward-Carr-Porter government  to exclude autism parents from government decsion making affecting young children and students with autism. 

The Telegraph-Journal featured a full page promotion of Acting Ombudsman Youth Advocate Christian Whalen which implied wrongly that progess had been made by this government and more progress was on the way ... if only parents ... would remain patient.  Mr. Whalen who wrote the article was ill informed. At the end of the day, while no doubt a good person, Mr. Whalen must follow the mandate of the government which signs his pay cheques.  He spoke of a "stakeholders" meeting at which autism programs on line were being developed as "cutting edge" progress. The stakeholders did not include the Autism Society NB or autism parents who are being consciously excluded from autism "stakeholder" meetings.  Government officials are of the view that autism parent participation would be "sloppy" as they stated at the so called stakeholders meeting. The truth is parent advocacy caused our autism progress and government bureaucrats have been fighting back not in the best interests of autistic children and adults but simply to regain control of autism issues they once ignored. 

Contrary to the Whalen article's implications every aide and resource teacher currently autism trained in NB schools was trained at the UNB-CEL Autism Training Program not by the Department of Education  and that was done in response to parent advocacy pressure.  The Education officials purchased rights to the program theory but have still not developed a practicum component.  The practicum component is vitally important and will not be ready for 1-2 years if then. When it is done it will, based on historical discussions, be done "in house" subject to department and union grievance pressures.  ASNB opposed such in house training vigorously and successfully despite education department reactions  including legal pressure directed at me personally.  Based on past history and based on the realities of the CUPE 2745 collective agreement and grievance process it is highly unlikely that the practicum will include rigorous, if any, testing requirements, times for course completion  or even criteria for entry and graduation from the in house autism "training".

Today children with autism are escorted from NB schools after calls are made to police, fire and emergency responders. Some are charged criminally.  Meanwhile educators follow official policies of physically grabbing children with autism and removing them to isolation rooms.  The predictable aggressive response by some autistic children is then considered as the bases for criminal charges. 

Parents with autism diagnosed toddlers face delays in getting early intervention for their children.  Months of delay will follow admission to the early autism intervention program, months that will be charged as "treatment" on the individual child's record. 

Adult care, as always, remains ignored under this as under all previous administrations.  Action is just not the strong suit of bureaucracies particularly when hamstrung by philosophy based, cliche thick "community" philosophies which, on the evidence, are in fact counter productive.  While our government has  never tired of  yanging about community  persons with severe autism are sent by our governments to psychiatric hospitals and institutions outside of New Brunswick as they have for many years.  It is the government adherence to cliche based community philosophy, and refusal to consider development of alternatives, that results in the full institutionalization of adults with severe autism challenges.

If you are concerned about your child or family member with autism, if you are autistic and need assistance, or if you are just genuinely concerned about the challenges faced by persons with autism disorders in New Brunswick meet us this Saturday at UNB-Fredericton, MacLaggan Hall.

Our voices must be heard!