Wednesday, March 21, 2012

Erosion of New Brunswick's Autism Gains: We Can't Just Stand By and Let It Happen!


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!

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To the Honourable Premier David Alward and other esteemed recipients with an interest in autism in New Brunswick:

There will be an open meeting of the Autism Society New Brunswick this Saturday March 24 at 12 noon at UNB Fredericton, McLaggan Hall.  The meeting is open to anyone in NB with an interest in autism.  

New Brunswick, during the previous 12 years, came to be recognized as a Canadian Leader in autism service delivery by esteemed experts including Dr. David Celiberti of the Association for Science in Autism Treatment.  The gains resulted from the efforts of many people including parent advocates, involved  professionals in psychology, speech language pathology and related disciplines, and conscientious members of both former Premier Bernard Lord and former Premier Shawn Graham. Those gains are now being eroded by decisions of the current administration without consultation with conflict free autism advocacy representatives in New Brunswick.  

Anyone interested in autism and autism service delivery is welcome to attend.  The meeting will not be conducted by a professional "facilitator".  In other words it will essentially be a free and open discussion with only two requirements -  candor and courtesy.

Hope to see you all there. Feel free to invite, or refer this invitation to, anyone you know with an interest in autism in NB.

Respectfully,

Harold L Doherty



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Thursday, March 15, 2012

Heartless Canada Does It Again - Rejecting Another Immigrant Family Because of Son with Autism

Image by Kaz Novak, The Hamilton Spectator

An immigrant South Korean family, Sungsoo Kim, wife Sunmi Kim, daughter Lisa and son Taehoon, have been living in Canada for the past 9 years. A permanent residency application has been rejected  by Canadian officials because the 12 year old son   is autistic.  He  received the autism diagnosis several years ago but after he and his father, Sungsoo Kim,  had arrived in Canada.   

Change is difficult, very difficult, for many people with autism disorders.  For my severely autistic son slight changes in his daily routines and expectations can result in serious problems.  I can not imagine the harmful impact on this 12 year old autistic boy,  to be sent to another country now, after growing up in Canada over the past 9 years.  He has South Korean heritage, a Korean name and family but this boy after spending 9 of his 12 years in Canada IS Canadian.  

I understand the costs argument but it is still heartless for Canada to send this autistic boy to live in  a country he does not know, absolutely heartless.   If and when harm comes to this boy from this decision Canada must bear a major part of the responsibility.  

I am generally very, very proud to be Canadian but I am not proud of the way we treat good people who have chosen to live among us and become part of Canada because a child is diagnosed after arrival with an autism disorder. Woe, Canada!


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Wednesday, March 07, 2012

Foundation of New Brunswick Autism Success Is Being Abandoned


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.


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Sunday, March 04, 2012

Justice? Severe Adult Autism Reality In California

Kim Oakley author of  Autism, Epilepsy and Self-Injurious Behavior has broken the autism feel good cliche glass, again, in No Justice for Severely-Autistic Adult in California a comment about Van Ingraham "a severely- autistic man who had his neck broken in 2006, while living at Fairview Hospital, one of California’s Developmental Center’s that serves the forgotten population of adults with severe autism and behavioral issues."   Oakley's comment highlights  excerpts from a report  titled Basic police work ignored in autistic patient’s suspicious death by Ryan Gabrielson published February 24, 2012 on California Watch,  Founded by the Center for Investigative Reporting.


The suspicious circumstances of Van Ingraham's death as reported on California Watch is not easy reading for me as the parent of a severely autistic 16 year old son.  The pictures posted with the report are also very moving.  I am sure it is not easy for Kim Oakley as the parent of a severely autistic son to provide her comments but she does so and her thoughts should be read and considered by anyone facing similar challenges, including public authorities responsible for caring for severely autistic adults. 


I strongly recommend both the California Watch report by Ryan Gabrielson and the comments on the report by California autism advocate Kim Oakley who never shies away from highlighting the challenges faced by those living with severe adult autism realities.  One point emphasized by Kim Oakley is the need for hidden surveillance in ALL rooms of institutions for those living with severe adult autism realities.  Without surveillance there is little way of knowing what happens to a severely autistic adult who dies or is injured under suspicious circumstances.


I commented on August 19, 2007 on a Newsday report of a severely autistic adult woman who was severely beaten by attendants who were only caught after the assaults were captured on video cameras. The Newsday report stated:


"Newsday, August 18, 2007

An autistic resident of a Long Island group home was beaten with a shoe and a wooden coat hanger, slapped in the head and kicked by several employees whose vicious assaults were captured by a hidden video camera, Nassau County police said.

The helpless 50-year-old victim was battered repeatedly at the PLUS Group Home Inc. by at least four employees after one of their co-workers alerted police to possible mistreatment of the residents inside the Uniondale facility, police said.

Group home management then installed the camera inside air conditioning vents at the home, according to Terri Cancilla, executive director of the PLUS Group Home Inc.

...

Authorities said the victim can not speak or convey emotions or pain because of her disease, which is characterized by impaired social interaction."



In my 2007 commentary on the Uniondale facility assaults I made the observation that:


"This poor soul could not speak for herself. And the animals who savaged her knew it. Perhaps video cameras in all areas of institutions with non communicative residents should be mandatory. So that the videos can speak for them when they are subject to abuse."

I agree with Kim Oakley.  Video surveillance should be mandatory in all rooms and areas of facilities providing residential care for persons with severe autism and other communication challenges.  If they were mandatory in California before Van Ingraham died he might be alive today.  


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