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!

Great autism news in New Brunswick as the UNB-CEL Autism Intervention Training Program is being made available for the public.  (Applications available online.) The college program has previously been recommended by US autism experts Dr. Eric Larsson and Dr. David Celiberti. Dr. Celiberti in particular is very familiar with the program and had recommended the New Brunswick autism service delivery model which was based on the program  for consideration by other Canadian provinces.  Unfortunately for New Brunswick's autistic children, students and adults the successful UNB-CEL Autism Training Program, first utilized by the Premier Bernard Lord's Conservative government, and then by Liberal Premier Shawn Graham's government, has been abandoned by the David Alward government and its non evidence based, philosophically driven partners at the NBACL. 

The UNB-CEL Autism Intervention Training program was born in response to requests for tenders for autism training put out by the Lord government. That request resulted from intense and effective advocacy by many New Brunswick parents of autistic children led by the Autism Society of New Brunswick.  The actual program itself was first conceived at a meeting of a committee which was  meeting to establish an autism centre of excellence at UNB in Fredericton.  During a committee meeting a parent advocate member of the committee suggested that UNB should provide training in response to the government tenders. Dr. Paul McDonnell who was at the meeting confirmed that UNB had the professional resources to provide the training.  Anne Higgins, then with UNB-CEL, laid out a step by step process, including necessary time lines, that could be followed to meet the tender requirements. A pilot program was run and the UNB-CEL Autism Intervention Training was born!

Parent advocates, including yours truly, lobbied strenuously for the extension of the UNB training to our schools.  We met fierce opposition from some in the Department of Education who had their own agendas to pursue.  I was even subjected to threats from Department of Justice legal counsel, at the request of the then Director of Student Services, Robert Gerard, to keep me from participating in meetings between the Autism Society and Education department officials to discuss implementation of a commitment by Premier Shawn Graham to increase the numbers of UNB-CEL autism trained education assistants working with autistic students. 

We also met with fierce opposition from the New Brunswick Association for Community Living which included direct opposition from NBACL icon, then NB Human Rights chair, and now Alward transition team member Gordon Porter.  The current Education Minister's wife Krista Carr is an executive officer with NBACL and at the time she also opposed the Autism Society's position that alternative learning environments were necessary for some autistic students and in particular for those receiving ABA based instruction, provided by UNB-CEL autism trained aides, in quieter settings outside the regular classroom.  Danny Soucy is a current member of the Alward government, also affiliated with NBACL, and was also a  public opponent of Autism Society efforts to achieve the flexible inclusion necessary for many autistic children to be educated at all and in particular to receive ABA instruction from UNB-CEL Autism trained aides.

A third force opposing parents advocating for UNB-CEL training for our children was, and is, the union representing education aides, CUPE Local 2745 and its leader Sandy Harding. During the time I was ASNB President I had requested a meeting with Ms. Harding's predecessor to seek the CUPE Local 2745 support for autism trained education aides (TA's).  Ms Harding's predecessor was not interested and she herself upon taking office as Local 2745 president has been openly hostile to any serious training requirement for aides working with autistic students.  

CUPE Local 2745 has used its considerable clout to resist any training requirement and pushed hard for seniority as the only requirement for aides working with children with autistic disorders. As a labour lawyer with a quarter of a century experience, in New Brunswick and federally, I can say that such a lop sided approach to any job posting requirement is almost unheard of and, as the Alward government currently genuflects before CUPE Local 2745, constitutes an abandonment of management rights. Removal of the UNB autism training requirement in favor of pure seniority considerations and refusal to permit learning outside the classroom when necessary also constitute failure to accommodate the autistic disorders, the neurological based disabilities of children with autism contrary to Human Rights Act requirements.   Both the Alward government and CUPE Local 2745 are now discriminating against children with autism disorders by refusing to acknowledge the need for autism training for aides working with children with autism disorders which are in fact serious neurological disorders.

With these three major institutional forces aligned in lock step opposition to the accommodation of New Brunswick's autistic students comes a fourth factor - the current shaky state of the world economy. Economic factors currently provide perfect cover for the Alward government to abandon the quality and integrity of the UNB-CEL autism training for the sloppy in house training that was opposed by the Autism Society New Brunswick and for a surrender of our children's best interests in the face of the adult interests of untrained senior members of CUPE Local 2745.

In this perfect storm the revival for the public of the UNB-CEL Autism Intervention training program, and the quality and integrity it provides, is one bright light in the darkness.  It  is a beacon to guide us and provide hope that better days are ahead.

New Brunswick made substantial progress in providing services to autistic pre-schoolers and students over the previous 10 years. Those gains are now being eroded. Eroded may be to gentle a way to describe what is happening.  Those gains are being dismantled completely.  

The basis for the gains made in providing autism services in New Brunswick is the UNB-CEL Autism Intervention Training Program.   Early intervention workers and teacher aides were were educated in the UNB-CEL program which provided independent, quality training.  Now training will be provided in house by the autism agencies themselves and by the Department of Education.  The interests of autistic children will now take a step back behind the competing interests of adults.   Attached following this commentary is a letter I sent this morning to various political and organizational leaders who are, or should be, interested in autism issues in NB.

The ASNB needs to step up and speak up again! We are meeting this Saturday, March 12 at 12:00 noon at MacLaggan Hall, UNB Fredericton and we need you and your voice.  See you there!

-------------------------------------------------------------------------------------------

New Brunswick, Canada, like most jurisdictions, has some gaping holes in respect of autism services delivery. But there have also been some significant successes  due largely to the UNB-CEL Autism Intervention Training Program and Dr. Paul McDonnell who was a leading force in the establishment of the UNB-CEL AIT Program. While the UNB program is still being utilized for some specific purposes it is being abandoned for cost reasons and to satisfy competing adult interests, particularly in education. 

Adult residential care and treatment in particular is brutally bad here in NB with many severely autistic adults living in group homes with untrained staff and other inadequate resources.  The most severely affected autistic adults live in psychiatric hospitals and some live in other make shift accommodations, at least temporarily staying on general hospital wards and shipped out of the province.  Two young men were sent several years ago to the Spurwink facility in neighboring Maine, USA,  where at least one is believed to still be residing.  

Although not perfect there have been some successes here in NB in early intervention and provision of autism trained education assistants and resource teachers. The foundations for those successes, as highlighted very well in a Brunswickan news article, have been the UNB-CEL Autism Training program and Dr. Paul McDonnell, Clinical Psychologist and Professor Emeritus (Psychology).  Sadly, our provincial government is largely moving away from using the excellent UNB-CEL Autism Intervention Training program to train early intervention workers and education assistants and resource teachers for our schools. 

Our provincial government has recently approved the provision of in house, on the job, training for early intervention workers in our government approved early intervention agencies of which there are seven in our province.  One or two of these agencies may be able to provide some level of quality training but it is highly unlikely that all seven agencies will be able to meet a quality training level.  The move away from early intervention autism training by UNB-CEL is a serious setback for New Brunswick children with autism disorders.

At the same time New Brunswick has already been abandoning UNB-CEL Autism Intervention training for education assistants and resource teachers in favour of, once again, in house training.  It took some strenuous advocacy by parents of autistic children to obtain a commitment by our previous governments to provide UNB-CEL autism training for our education assistants and resource teachers working with autistic students.  Well placed people in the Education Department, in particular a gentleman named Robert Gerard, objected to the UNB training as being a "Cadillac" service.  Instead the department offered a number of in house training options none of which called for entry qualifications, testing as a requirement of course completion and in some instances no timeline for completion.  

It is my understanding that our government has sent some teachers to obtain BCBA qualifications in the US, and that they will be involved in some capacity with in house training of education assistants and resource teachers.  In house training however has inherent drawbacks. Lack of independence of those providing the training, who will report to a number of Department bureaucrats will be one of those drawbacks. The CUPE local which represents education assistants, and Teachers Association for the teachers, will likely be involved with and possibly interfere with, the conditions and qualifications for training.  There are already reports of a collective agreement  arbitration award which rejected a posting requirement for a UNB autism trained education assistant to work with an autistic student.  I have been unable to confirm that information though as a request made to the Department several weeks ago for a copy of the award has not been fulfilled despite a follow up last week. 

Our present Conservative government has chosen to abandon the quality UNB-CEL training of front line workers in early autism intervention agencies and schools.  Next will come a report by Dr. Gordon Porter and the New Brunswick Association of Community Living both of which have opposed the individualized instruction of students with autism in favor of Dr. Porter's everybody in the mainstream classroom inclusion illusion.

The autism success for which autism parents fought so hard in this province for so many years is eroding before our eyes. In all honesty this is what I expected with the current administration which has such close ties to Dr. Porter's "everybody in the mainstream classroom" inclusion philosophy.  Dr. Porter was part of the advisory team which assisted Premier David Alward in his transition to office after the last provincial election.  Minister Jody Carr and government members Jack Carr and Daniel Soucy all have backgrounds in the NBACL which has opposed attempts to provide one on one ABA based instruction to some autistic students in quieter school environments outside the mainstream classroom.

The abandonment of the UNB-CEL Autism Intervention training and the renewed influence of Dr. Gordon Porter and the NBACL in the provision of education services does not bode well for the future of New Brunswick's autistic children and students.  The challenge of bridging the gap in New Brunswick's adult autism residential care and treatment has always been huge. It is unlikely to be tackled in any meaningful way until a new government takes office in several years time.

Emma Smith and CBC did a feature (at minute 23:40)  on last evening's news on the lack of residential care available for New Brunswick adults with autism.  I was interviewed along with some other parents and staff from the Autism Connections Fredericton community autism centre.  Paul McDonnell, Ph. D., UNB Professor Emeritus (Psychology), clinical psychologist and mentor to many parents of autism children, was also interviewed.  

Paul McDonnell is the autism expert who helped educate many parents of newly diagnosed autistic children, including me, about the benefits of evidence based interventions for our children.  He really has been the intellectual force behind the progress that New Brunswick has made in early intervention and education of NB children and students with autism.  While the progress in early education in particular, and in our schools to a lesser extent, has been significant, no progress whatsoever has been made in developing an appropriate residential care system for New Brunswick adults with autism disorders.  Paul McDonnell talks about the need for a high end facility, one which would incorporate a variety of arrangements to accommodate adults from different points on the autism spectrum.  He also points out that as much as $500,000.00 a year is being spent to provide care for just 1 New Brunswick adult with autism ... at the Spurwink facility in Maine.  He points out it would make economic sense to design and construct a facility which could be designed to provide community integration here in New Brunswick. 

The struggle for improved autism services in NB has been taking place in a serious fashion over the last 12 years. During that time activist parents advocated, argued, struggled and fought for evidence based early intervention for autistic children.  We had some success, albeit not total success, in obtaining 20 hours of government funded intervention for autistic children aged 2-5.  Some gains have been made in our schools although much, much more effort is need there. No progress though has been made for adults with autism in New Brunswick. 

Government drags its feet on adult autistic care for a number of reasons.  In my experience as an autism advocate it is easier to get public attention for the need to help children then it is to attract their concern over autistic adults. It seems to be a natural inclination for people to be stirred more easily to help children than adults.  There is also the fact that once in the care of government autistic adults are out of the public eye. Out of sight, out of mind. The government can, and will, cite privacy reasons of the autistic adult as a reason for refusing to disclose information about them.  The most extreme examples of the privacy issue being used in this way is taking place right now in Ontario where that government has sent its lawyers in to action to prevent disclosure of information in the two inquests, including the Ashley Smith and G. A.  inquests.  In those cases the government is arguing against disclosure of information about what happened to these two youths, purportedly to protect their privacy,  even though they are now dead. 

In New Brunswick a huge obstacle to development of an autism specific residential care and treatment facility is the opposition of the very influential NB Association for Community Living.  Community living cliches are pulled out at every discussion of adult care issues. "No bricks and mortar" solutions is the cry of the community living advocates who believe that all problems are solved by dumping adults, including severely autistic adults, into privately owned group homes.  The powerful and influential people who subscribe to this ideology are well connected to cabinet ministers, the Human Rights Commission, the department of education, schools and school districts,  even the Ombudsman and Youth Advocates office. As long as we all go to bed at night repeating "community", "inclusion" and other cliches over and over again until we fall asleep all will be well.  But there will be no talk of "institutions' ... or any other facility that might be needed to help autistic adults.

No serious thought is given to providing the residential care and treatment that many with autism will require throughout their adult years. In fact active resistance emerges at events like the Ombudsman and Youth Advocate office's recent  Complex Needs consultations, in which I participated,  to any discussion of a facility that might provide the expertise, security and access to autism specific programs required by autistic adults.  

It is not cash that is preventing adequate residential care for autistic adults in New Brunswick. Huge sums are being sent to export our autistic adults to the United States. The "bricks and mortar" of buildings that might be necessary to provide residential care and treatment are not the problem either.  The real problem is the "bricks and mortar" that encases the thinking of the community living adherents who have subscribed to the same  ideology for decades and refused to consider the needs of severely autistic adults.  Their philosophy has ruled New Brunswick with an iron fist for decades even though the failure of that rigid philosophy is evidenced by the people with autism living on general hospital wards, in psychiatric institutions, in specialized facilities in Maine and other provinces, in hotel rooms and even on the grounds of youth correctional facilities. 

In truth we all want our children to remain as integrated as possible in our communities, as close as possible to our families.  As a parent though I know that talking about community and inclusion does not address the need of some autistic adults for expert care, for expert based continuing education and recreation opportunities and for security.  These requirements, for some, can not be provided in a small, privately owned group home. We need a facility close to autism expertise such as exists at UNB and at the Stan Cassidy Centre to provide appropriate life arrangements for our autistic loved ones as adults.   

The need is painfully obvious to parents who see their adult children sent to live in general hospital wards, psychiatric hospitals .... and facilities in another country.  New Brunswick needs to fill the gap between the inadequate group homes and hospital institutions and provide a modernized autism  facility to accommodate the needs of out adults with autism.  Here in Fredericton we have developed some behaviorally based autism expertise of note. It is time for the community living adherents who are so influential in our government institutions in New Brunswick to let go of their rigid and dated perspectives,  to loosen up and let the needs of autistic adults be addressed with modern evidence based solutions, with facilities that can provide security, expertise, education and recreation in as community integrated a manner as the circumstances served by those facilities  permit.  

It appears that the first New Brunswickers asked to sacrifice, or to be sacrificed, in the austerity era formally ushered in yesterday with the Budget Speech by Finance Minister Blaine Higgs may be New Brunswick students with autism disorders. Unnoticed by important news sources like the CBC the government announced the day before the budget speech the ratification of a new collective agreement with CUPE Local 2745.  The new collective agreement is not yet available publicly but it has been indicated to me that the agreement will give the edge to seniority over qualifications, experience, special circumstances  or special relationships between teacher aides who will now be called education assistants and students with autism disorders.

What this means, if correct,  is that when the school year starts education assistants will be assigned to posted job positions solely on the basis of seniority.  An education assistant who has received the UNB-CEL Autism Intervention Training program will lose the opportunity to work with and help a student with autism if an education assistant who has been working longer as an aide applies for the position.  Autism is a neurological disorder which requires special learning approaches and understanding of complex and at times challenging behavior.  But, if the information proves correct, it appears that Finance and Human Resources Minister Blaine Higgs and CUPE Local 2745 President Sandy Harding have other adult interests more important to consider and are willing to sacrifice the best interests of New Brunswick students with autism disorders.

As a lawyer my work has focused on labour law and labour relations for a quarter century, both federally and provincially and included time as a legal adviser to the Canada Labour Relations Board, now called the Canada Industrial Relations Board.  Most collective agreements strike a balance between seniority and qualifications  by assigning a standard of qualifications and position specific ability to be met before seniority kicks in. Others assign the position to the most qualified person for a position with seniority acting as a tie breaker where candidates are equally qualified.  Very few agreements simply give a position to the person with the most seniority regardless of qualifications or ability as the new CUPE 2745 is rumored to do.

I recognize that my sources could be wrong.  The union members who voted to ratify, or accept the new collective agreement were apparently not even given a draft copy of the agreement before voting on it.  Basically they were given, at least in some locations, a summary on a screen. The collective agreement should ultimately be made public and available on line.  

The information is unlikely to be proven wrong though.  CUPE Local 2745 President Sandy Harding  has long advocated for seniority to be the only consideration in assigning teacher aides, now education assistants, to positions working with children with disabilities including  students with autism.  She has long put the interests of adults, the most senior members of CUPE Local 2745, over the interests of students with autism disorders.