Inclusion Done Right: Conor at Leo Hayes High School Resource Centre

Pictures above and below: Inclusion done right at Leo Hayes High School Resource Centre

Pictures courtesy of Steve at the LHHS Resource Centre

Inclusion done wrong is inclusion as advocated by Gordon Porter of the CACL and NBACL, and the current Conservative government which has very close ties to Mr Porter and the NBACL.  According to them inclusion  means that ALL children, including those with severe disabilities like my son Conor MUST be educated in the regular classroom.  This is a philosophical belief held by Gordon Porter and those who follow, in a cult like fashion, his teachings.  It is a belief system but it is not an evidence based system.  It actually results in harm to some children including some children with severe autism disorders and intellectual disabilities, some of whom are actually removed from the school system to be educated at home.   I have fought against this non evidence based, belief system since Conor has been in grade 2 when the challenges for him to receive education in a regular classroom resulted in daily self injurious behavior especially biting of his hands and wrists.

Inclusion done right is what Conor has received since our concerns were made known to the school system in Grade 2. The local school authorities could see the evidence for themselves on his hands and wrists and Conor was, and has been accommodated, since then..  Conor receives his ABA based instruction in a separate room in a neighborhood school, Nashwaaksis Memorial grade school, Nashwaaksis Middle School and Leo Hayes High School.  Conor is based in the Leo Hayes High School Resource Centre an excellent accommodation for the needs of many students with diverse conditions requiring accommodation. In that environment he has a number of adults who have both the aptitude and the interest in accommodating the needs of children with various extra needs. On trips to grocery stores in our neighborhood, and at the local theatre among other places, Conor has been greeted joyfully by the friends he has made at the LHHS Resource Centre.  Conor enjoys time in the school gym, in the controlled parking lot area where the chalk fun took place and where a basketball hoop offers Conor some extra fun.  Most of all Conor goes with other students from the Resource Centre to the swimming pool at his old middle school.  Conor loves, loves, loves the swimming pool and has social opportunities during activites he loves to do.

The assistants who work at the LHHSRC come to know Conor personally and understand his strengths and his limits.  He participates in some of the activities organized by the Resource Centre and not in some others. The Centre does consult with us with respect to activities chosen for Conor.  The LHHS Resource Centre team, often with the assistance of Best Buddies, has provided Conor with some very enjoyable activities which invoved him socially with other students both those at the Centre and those in Best Buddies and others who are kind enough to offer their time and attention. 

Conor has benefited greatly from the LHHS Resource Centre model of inclusion and the fine people who make it work.  The self injurious biting of his hands while forced into a regular classroom is long gone.  Conor loves the Resource Centre, a message I have provided to Gordon Porter at the STU Human Rights Inclusion symposium at the Crowne Plaza two summers ago.  It is a message, and evidence, which he chooses to ignore. Gordon Porter and the current government may not look at the evidence but open minded rational people can see the evidence in Conor's face in the pictures accompanying  this comment.

The Leo Hayes High School Resource Centre is a model of inclusion done right, one which accommodates, based on the evidence, the specific needs of individual students with extra challenges.  If you don't believe  me look at my happy Conor in these pictures.

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.

New Brunswick's Extreme Inclusion Fantasy Harms Some Children With Severe Autism Challenges

Education and Early Childhood Development Minister Jody Carr 

 EECD/NBACL Event Focus on Inclusion: Walking in our shoes.

Minister Carr spoke for 40 minutes, repeating the word

 inclusion 30 - 40 times but never mentioning  evidence based 

accommodation of individual needs and challenges 

Premier David Alward's government has transferred control over New Brunswick education policies and practices to the NB Association for Community Living.  The NBACL is, beyond doubt, an organization of  people with good intentions committed to improving the lives of those with intellectual challenges.  I wish , as the father of a son with severe autism disorder and profound developmental delays I could support them.   Unfortunately the NBACL, and its federal counterpart the CACL, have subscribed for decades to a philosophical, non-evidence based, belief  that all children's best interests are served, protected and accommodated by placement in a regular classroom. Alternative learning arrangements are demonized as "segregation" when in fact such arrangements constitute evidence based accommodation of disabilities that some children, including my son with severe autistic disorder and profound developmental delays, need in order to gain access to a real education.  

In handing control over the education of children with disability challenges to NBACL the Alward government is acting in defiance of its obligation to ensure that education decision making represent the best interests of children founded on evidence.  It has placed many children with autism and other severe disability challenges at risk of being deprived of meaningful access to a real education, at risk of suffering mental and physical harm and at risk of being charged with criminal offences.  The Alward government has sacrificed some children with autism disorders and other disabilities to a fairy tale, one that is known to be untrue by many teachers, education assistants and parents.

In handing control over education of children with disability challenges to NBACL the Alward government  has abandoned democratic principles by surrendering one of government's most important responsibilities to an outside organization unaccountable to voters.  Equally concerning is the fact that the NBACL does not subscribe to modern, evidence based approaches to educating children with disabilities.

The NBACL adheres to one philosophical principle which it places above the best interests of individual students and which ignores the government's existing Inclusive Education Definition policy which requires education decision making based on the individual needs of the student and founded on evidence (not simplistic extreme inclusion philosophy) ... needs which in some cases, such as my severely autistic son, require education outside the regular classroom.  In any public discussion by NBACL reps of the Inclusive Education Definition no mention is made of the stipulation that inclusive education decision making is premised on  individual student needs  based on an a foundation of evidence requirement.  Nor is any mention made of the  fact that students with special challenges, autistic students in particular, in some instances very young, grade school students, are sent home from school when they can not function in NBACL inclusive classrooms. 

My son is severely autistic with profound developmental delays.  He has been well accommodated in Fredericton schools since he was removed from the regular classroom at our request. He was overwhelmed in the regular classroom and came home each day with bite marks on his hands until he was removed to an alternate, individualized instruction area where he worked with an autism trained Education Aide.  Some children for whom the regular classroom is not the answer are not as fortunate though; some are expelled from NB schools, sometimes under police escort, and some are charged with assault when their behavior, their inability to exist and function in the NBACL dominated school system results.  It is always the child who is blamed never the ridiculously simple, non evidence based, unthinking philosophy of the NBACL which is forced on parents, education assistants, teachers, resource teachers and education department officials who must fall in line and repeat the NBACL belief in extreme, everyone in the regular classroom fairy tale.

The children who are sent home and in some cases charged with criminal offences are powerful evidence that the simplistic everybody in the mainstream classroom philosophy is a failure that has hurt some children and impedes their access to a meaningful education contrary to the Education Act, the official Definition of Inclusive Education and contrary to principles enunciated in the Moore decision of the Supreme Court of Canada.

New Brunswick Inclusive Education Definition 

The New Brunswick government  Inclusive Education Definition  resulted from two inclusive education reviews: the MacKay and Ministerial Committee reviews. Both were initiated by the Lord government although the Ministerial Committee review continued under the Graham government during which time the Inclusive Education definition, after years of consultation with a wide range of stakeholders,  was concluded. I attended throughout both proceedings as an Autism Society New Brunswick representative,  and advocated, over the persistent opposition of NBACL representatives, for an evidence based approach to the individual education needs of students.  Those principles are set out throughout the Inclusive Education definition but particularly in the vision statement, the student centered principles and the accommodation sections (underlining added for emphasis):

"Inclusive Education

I. Vision

An evolving and systemic model of inclusive education where all children reach their full learning potential and decisions are based on the individual needs of the student and founded on evidence 

III. Overarching Principles

The provision of inclusive public education is based on three complementary principles:

(1) public education is universal - the provincial curriculum is provided equitably to all students and this is done in an inclusive, common learning environment shared among age-appropriate, neighbourhood peers;

(2) public education is individualized - the success of each student depends on the degree to which education is based on the student’s best interests and responds to his or her strengths and needs; and 

(3) public education is flexible and responsive to change.

Recognizing that every student can learn, the personnel of the New Brunswick public education system will provide a quality inclusive education to each student ensuring that: 

Student-centered 

1. all actions pertaining to a student are guided by the best interest of the student as determined through competent examination of the available evidence;

2. all students are respected as individuals. Their strengths, abilities and diverse learning needs are recognized as their foundation for learning and their learning challenges are identified, understood and accommodated; 

3. all students have the right to learn in a positive learning environment;


IV. Accommodation 

Accommodation means changing learning conditions to meet student needs rather than requiring students to fit system needs. Based on analysis, student needs may be met through individual accommodation or, in some cases, through universal responses that meet the individual student’s 

needs as well as those of other students.

The NBACL  now determines education policy and indoctrinates NB teachers and educators but it ignores the principles of evidence based accommodation of individual students and insists on regular classroom placement for all students regardless of needs.  Some may dispute these  points but they are  derived from repeated public statements:

2012 - David Alward's Admission That Community Living Association Sets Policy and Indoctrinates Senior Government Officials

New Brunswick Premier David Alward has publicly acknowledged the role of the New Brunswick Association for Community Living related organizations in setting inclusion and disability policy in New Brunswick as was made clear on the community living organizations' IRIS site. IRIS is the Institute for Research and Development and Inclusion in Society. It purports to be the "research" branch of Community Living Assocations across Canada. The IRIS board of directors consists of present and former Community Living Association officials from accross Canada including former NBACL official Lorraine Silliphant.  

In February 2012 IRIS spent a week indoctrinating high ranking New Brunswick education officials including Deputy Ministers and Assistant Deputy Ministers in the Community Living Association philosophy based policies of full mainstream classroom inclusion as was bragged about on the IRIS web site:

"Premier Alward of New Brunswick acknowledges IRIS’ ‘Policy Making for Inclusion – Leadership Development Program’

New Brunswick Premier David Alward issued a letter Friday February 4th to all participants in the ‘Policy Making for Inclusion – Leadership Development Program’ that will be delivered in Fredericton by IRIS February 6-10 to senior officials with the Government of New Brunswick. The program is designed to assist policy makers achieve the government’s platform commitment to “enable New Brunswickers with disabilities to actively participate in all aspects of society and take their rightful place as full citizens.” With Deputy Ministers, Assistant Deputy Ministers, Human Resources Directors and Policy/Program Directors from across government participating in the week-long series of leadership development workshops, major strides will be taken towards creating a public service in New Brunswick ready and able to deliver on the government commitment to people with disabilities. In his letter, Premier Alward thanked The Institute “for developing this program to inform our public servants on the latest research on disability and inclusion…” A core resource for the program is the guide to Disability and Inclusion Based Policy Analysis just published by The Institute." 

2013 - NBACL  Trains Principals and Teachers

"25 FEB 2013 11:00PM

SCHOOLS AND COMMUNITY LIVING ASSOCIATION PARTNER UP

CAROLYN THOMPSON

TELEGRAPH-JOURNAL

SAINT JOHN – Schools in southern New Brunswick are seeking support from the New Brunswick Association for Community Living in training principals and teachers on inclusive education approaches.

Shana Soucy, manager of inclusive education for the association, said research has shown that without leaders who champion inclusive education, schools have a more difficult time implementing policies to make learning accessible to all students.

“I think we are doing a lot better with having the kids in the classroom, but are they really included in the lessons or are they just sitting there. We don’t want the segregation in the classroom, we want them to be included in the lesson,” she said."

NBACL Manager of Inclusive Education Shana Soucy identified problems, with inclusive education in New Brunswick, on the NBACL Blog site:

Even though Bill 85 was introduced in 1986 stating the full participation of all students in all aspects of school and community life, without regard to their disability or difficulty, we are still coming across many issues regarding exclusion:

• Segregated classrooms and segregated programs across schools in New Brunswick
• Modifications and accommodations are not being properly done to students’ lessons as noted in their Special Education Plans in order for them to have success in school
• Some students are being excluded from school activities (ie: field trips)
• Students are not only excluded from the regular classroom, they are not able to have lunch in the school cafeteria, instead, having their lunch with other students with a disability and Educational Assistants in the Resource room of the school

Some of what Ms Soucy describes as "segregated" classrooms  and "segregated" programs" are actually evidence based accommodations of the needs of some students with autism disorders like my son Conor who was overwhelmed in the regular classroom and who receives individualized ABA based instruction which is not assisted by being in a regular classroom with other students.  In other words the NBACL officials who now set education policies and train senior government officials, educators and teachers describe evidence based accommodation of the individual needs of some autistic students, including my son, as segregation, as inclusion "issues".   Ms Soucy insults and attacks accommodations specifically made to help children like my son with severe autism and intellectual disability challenges. 

NBACL Inclusve Education Manager Soucy's comments about the Resource room are an insult to students like my son who starts his day and has lunch in the resource room and enjoys tremendously his  time at the Resource Centre at Leo Hayes HS.  Ms. Soucy's issues with Resource Centres are not my son's issues.  Following is a picture of my son on St. Patrick's Day, March 17  2011 as he prepared to leave for school to start his day at the LHHS resource center.  He does not feel like he is being excluded or segregated at all.  He is fact being accommodated and enjoys his learning experience:

My happy, smiling son Conor can't wait to get to LHHS with a 

resource  center for some  purposes and individual environments 

for his  ABA based learning.  He also uses resources such as the

 gym, library, and swimming  pool in common with all students. 

For Conor these arrangements represent accommodation not segregation. 

Contrary to Ms Soucy's  non evidence, philosophy based, beliefs Conor loves his time at the resource centre and his so called "segregated" individualized, evidence based, ABA instruction.  Each evening he packs his lunch bag, places it in his school bag and when he gets up places it in front of the door to make sure it accompanies him to school.  These resources have been vital accommodations of his needs as a student with severe autistic disorder and profound developmental delays.  NBACL has clearly targeted for closure resource centers and individual areas of instruction in NB schools. I am very concerned that the fundamental ignorance of the NBACL adherents will deprive my son, and others whose needs are accommodated outside the regular classroom of these very valuable accommodations of their individual needs.

Imposition of NBACL Icon Gordon Porter's Simplistic, Extreme Inclusion Philosophy on Department of Education and Early Childhood Development 

Even without the indoctrination of high ranking government officials in a week long inclusion training/indoctrination session based on  Community Living policies, and even without government contracting out "disablity" training of teachers to the NBACL on an ongoing basis, NBACL has exercised a dominant role in the current NB government. Gordon Porter, an icon of the NBACL and federal CACL organizations, was a member of the Alward transition advisory team and subsequently conducted, together with NBCLA director Angela Aucoin,  yet another inclusion review which was not conducted objectively or transparently and simply reflects Mr. Porter's philosophy as stated by him during a Newfoundland appearance and reported in a Western Star article by Diane Crocker:

"Inclusion in the classroom ‘simple,’ says educator: 

CORNER BROOK — Gordon Porter believes inclusion is the most natural thing in the world. The educator and director of Inclusive Education Initiatives presented a session on inclusive education at the Greenwood Inn and Suites on Thursday. Porter, who is also the editor of the Inclusive Education Canada website inclusiveeducation.ca, spoke to parents, educators and agency professionals who deal with children with special needs at the pre-conference for the Newfoundland and Labrador Association for Community Living Conference taking place in the city today and Saturday. The session was sponsored by the Community Inclusion Initiative. 

 Porter’s session revolved around the theme of parents and teachers working together to make inclusion work.“It means kids go to their neighbourhood schools with kids their own age in regular classes,” said Porter.“If you’re seven years, old you go to the school just down the street. You go in a class with other seven-year-olds, and you’re supported if you have extra needs. “It’s so simple, it’s that simple,” said Porter."

Mr. Porter will forever cling to his belief that inclusion is simple if you just dump everyone in the regular classroom regardless of their needs.  There is nothing simple about autism though and I defy anyone to point to an informed source that would say there is. As the parent of a severely autistic child with profound developmental delays, sensory issues and, like many autistic children, capable of engaging in serious self-injury when overwhelmed I can not allow myself to wallow in such ignorance.  

The new DSM5 autism spectrum disorder criterion B expressly recognizes highly restricted, fixated interests, excessive resistance to change, abnormal in intensity or focus, hyper-or-hypo-reactivity to sensory aspects of environment, factors which, for some students with autism make the regular classroom an obstacle to learning and a risk to the child's safety:

Movie theater chains have recognized autism challenges and realities by trying to present sensory friendly showings of some movies.  Self-injurious behavior, (such as head banging and .. hand biting), and responsive (not planned) aggression to others, are recognized as a common problem for many with autism disorders.  The appropriate, evidence based approach to dealing with such issues is to provide a continuum of alternative learning arrangements, meaningful learning and functioning with the environment selected and individualized assessments of students skills and abilities to function within the setting selected,   as described on the web site of the University of North Carolina TEACCH program which has substantial influence in academic and professional autism circles:

"TEACCH's position on inclusion of children with autism:

1. The TEACCH program recognizes the important value of preparing all persons with autism for successful functioning within society. Each person with autism should be taught with the goal of successful functioning with as few restrictions as is possible.
2. Decisions about including children with autism into fully integrated settings must be made consistent with the principle of the "least restrictive environment" as a guiding principle. No person with autism should be unnecessarily or inappropriately denied access to meaningful educational activities. However, it should be noted that the concept of least restrictive environment requires that appropriate learning take place. Placement decisions also require that students be capable of meaningful learning and functioning within the setting selected.
3. Activities which are inclusive for children with autism should be offered based on an individual assessment of the child's skills and abilities to function and participate in the setting. Inclusion activities are appropriate only when preceded by adequate assessment and pre-placement preparations including appropriate training. Inclusion activities typically need to be supported by professionals trained in autism who can provide assistance and objective evaluation of the appropriateness of the activity.
4. Inclusion should never replace a full continuum of service delivery, with different students with autism falling across the full spectrum. Full inclusion should be offered to all persons with autism who are capable of success in fully integrated settings. Partial inclusion is expected to be appropriate for other clients with autism. And special classes and schools should be retained as an option for those students with autism for whom these settings are the most meaningful and appropriate.

Extreme inclusion is not simple, those who truly believe it is do not have actual first hand knowledge of an overwhelmed autistic child who bites his hand in one of Mr. Porter's inclusive classrooms, or one who reacts to the stresses of school and is sent home under police escort; in some instances to face criminal charges.  Inclusion may be simple for Mr. Porter but the simple truth is that he just ignores the evidence, all the evidence, any evidence which contradicts his cherished, fairy tale belief that the regular classroom solves all problems, even evidence of physical and mental harm that results from imposition of extreme inclusion policies on all students regardless of their needs.

At a Fredericton session during the Porter-Aucoin review discussion focused on integrating early autism intervention services into a smooth transition into the school system. ASNB was not invited to the Porter-Aucoin inclusion review session even though it was our advocacy that resulted in the establishment in NB of evidence based early autism intervention AND in the training of 4-500 education assistants and resource teachers at the UNB-CEL Autism Training program (also established in response to our ASNB parent advocacy) a program recognized by the Association for Science in Autism Treatment as a Canadian leader in provision of evidence based intervention for autistic children.

I became aware of the meeting and asked to be able to attend.  The discussion went around the table and when it came to me and I tried to speak for the first time I was told by the person conducting the session that they wanted someone else to be given a chance to speak.  I did not understand her statement since I had not addressed the group but I did not object.  The discussion went around the table again and when I tried again to speak I was again told that  they wanted others to be given a chance to speak. I had said nothing during the discussion.  I asked if they wished me to leave and was told no and given a chance to speak although nothing I said was reflected in the report that was issued by Porter-Aucoin.

As an ASNB rep I advocated persistently for evidence based accommodation of autistic students including those who required learning outside the regular classroom.  During the MacKay review Mr. Porter grew visibly annoyed with me and another ASNB rep Dawn Bowie because of our position.  Mr. Porter informed us that "you people should be thankful for what you have".  I have never doubted since that day that Mr. Porter's attitude toward educating children with disabilities, even children with autism, a subject with which I and Mrs. Bowie were much more learned and experienced, must conform to his everybody in the classroom beliefs.  Neither Mr. Porter, nor NBACL paid officers or representatives have ever deviated one iota from his fanatical obsession with the regular classroom.

NBACL Dominance in the Alward-Carr Government

NBACL domination of the Department of Education and Early Childhood Development is clear and indisputable.  Apart from Alward transition adviser Gordon Porter, NBACL Official Krista Carr is the wife of Early Education and Childhood Development Minister Jody Carr. Minister Carr's brother Jack Carr, also a member of the governing Alward Conservatives, is a former NBACL employee.   Danny Soucy is the Minister of Post-Secondary Education, Training and Labour and worked for both the New Brunswick Association for Community Living Inc. and the Canadian Association for Community Living from  1988 to his election in 2010.  Teachers who are most compliant with NBACL inclusion beliefs receive awards handed out by NBACL officials.

No one openly questions the philosophically based, non evidence based, policies of the NBACL which sets the Alward government's education policies.  Teachers, teacher aides/education assistants and other school personnel have told me off the record for many years, including during the MacKay and Ministerial Committee reviews that they sympathize with my concerns about accommodation of some children with autism, and other students who need an alternative place of learning, but they are unable to speak out.   The message is clear, those who conform to NBACL extreme inclusion doctrine will receive  awards handed out periodically by NBACL, those who don't ... well they have no choice but to conform.

Conclusion:

As a lawyer I have represented some students on the autism spectrum who have not been accommodated in the everybody in the classroom fantasy of the current Department of Education/NBACL administration. Some have suffered meltdowns for which they were blamed notwithstanding their known autism challenges.  Some   have been sent home under police escort and some have faced criminal charges.

The Autism Society of New Brunswick advocated during the MacKay and Ministerial Committee inclusion reviews for an evidence based approach to inclusive education which would see alternative learning arrangements for those who needed them.

In the current administration  philosophy trumps evidence based accommodation of individual needs.  Some students with autism disorders and other severe learning challenges are paying the price. 

Autism, Consultations and Conor Make for a Busy Weekend

This was a busy weekend for me. I participated in the Consultation on a Centre of Excellence for Children and Youth with Complex Needs Friday afternoon and evening and Saturday.  It was a privilege to be able to participate as a parent autism advocate. The consultation was organized by Bernard Richard, the Ombudsman/Child and Youth Advocate and an individual held in high regard by most people in New Brunswick. His stature is such that the recommendations of Mr Richard and his co-chair Shirley Smallwood a mother of child with autism and a long time advocate on autism and other issues together with the fact that  this process was  specifically requested by several Deputy Ministers means that the recommendations are likely to result in concrete  action being taken. 

I did not agree with everything said at the consultations but the process was good and there was a vigorous "discussion"of ideas and issues. Not surprisingly, my friends from New Brunswick's powerful community living organization did not agree with my perspective but the exchanges were both candid and courteous.  The co-chairs' advisory counsel comprised of  Dr. Simon Davidson, a child, adolescent and family psychiatrist at the Children's Hospital of Eastern Ontario (CHEO), Dr. Jacques Richard a psychology professor  and director of clinical training at the  Université de Moncton's and Dr. Tara Kennedy  a developmental pediatrician and clinical leader of pediatric autism rehabilitation services at the Stan Cassidy Centre for Rehabilitation in Fredericton gave excellent, well received,  presentations. 

One serious disappointment from my perspective was Mr. Richard's categorical statement, consistent with the community living corporation's influence in this and all other government processes involving special needs children and adults, that he would not be recommending any institutional placements or care.  As the father of a severely autistic son with intellectual disability I do not WANT my son to live in an institution at any time but I also know first hand the REALITY that there is currently NO ALTERNATIVE available in New Brunswick in terms of care for those most severely challenged by their disabilities. 

 

The feel good philosophy and buzz words of the quasi-governmental community living  corporation has worked wonders for those with less complex needs but has done little  to help the most severely challenged. I have been  to the psychiatric care facilities in Campbellton (where I received a full tour from the fine, caring and overworked professionals who operate the Restigouche hospital) and Centracare in Saint John, Although I do not want my son to end up living in these places I know that the group homes, and the so called "community",  do not take care of the most severely challenged. 

The proof of what I say is obvious. The proof is the residents living in the psychiatric facilities in NB and those who have been exported to Maine and other provinces for many years. The proof is the challenged youth who have been sent to a youth correctional facility in Miramichi because the "community" has failed them.  I will have other comments on the consultation process later, both positive and negative, but this obvious hijacking of the complex needs process by the community living corporation and its  feel good philosophy is most disturbing.  The consultations on youth with complex needs is in serious danger of failing to address the needs of those with the most complex and persistent challenges. The consultations are important and I am thankful to Mr. Richard for letting me participate even though I am an open and frequent critic of the failed community living philosophy in NB and even though I do not expect to have my concerns addressed.  It is better to have tried and failed than not to have tried at all.  

It  did take a day and a half of my time and it was important but I was away from family.  I made up for the missed time with Conor today.  Conor showed Dad  his new haircut from Saturday morning (thank you Angie at Clipper Blade in the York Plaza in Nashwaaksis).  We went for a nice walk along the St. John River and took a trip to the movies to see "Megamind".   As I have commented  before Conor hadn't been to a movie theatre in several years prior to this spring because of his inability to handle the stimulation and excitement. This spring though he made huge breakthroughs  going to the theatre (several times) to see Shrek, Tory Story 3, Despicable Me and now Megamind. His ability to handle the noise and visual stimulation of the theatre was outstanding again today.  His progress provided me with some optimism ... much more than I received at the consultations which appear to be destined to conclude with  buzz words and feel good cliches about community, hand wringing  and rhetoric over "institutions" ... but no alternative and no solutions for those most desperately in need of care and treatment ... life long care and treatment. 

 

 

 

Autism and Education: The Full Inclusion Mainstream Classroom For All Standard Discriminates Against Some Autistic Children

 

Extreme Full Inclusion Model of Education in Canada

 and New Brunswick has Discriminated Against

 Some Children With Autism Disorders

Imposing a standard, namely that the inclusive classroom meets all needs, is a perception not based on reality and is stereotypical. In other words, the standard takes the position that one environment meets the needs of all special needs children. By its very nature, such a standard is discriminatory, as was made clear by the Supreme Court of Canada in the Meiorin, Grismer, Law and Mercier decisions.

THE FULLY INCLUSIVE CLASSROOM IS ONLY ONE OF THE RIGHT WAYS TO MEET THE BEST INTERESTS OF THE SPECIAL NEEDS CHILD

Presented by Yude M. Henteleff, C.M., Q.C.
to the
C.A.C.L. NATIONAL SUMMIT ON INCLUSIVE EDUCATION
OTTAWA, ONTARIO
NOVEMBER 24, 2004

The above document by Yude Hentelleff  QC should be mandatory reading for Educators and Human Rights Commission and Tribunal  members across Canada.  Unfortunately that does not appear to be the case particularly in New Brunswick where the extreme full mainstream classroom inclusion model has been pushed relentlessly by Gordon Porter, the New Brunswick Association for Community Living and senior officials in the Department of Education.  

Meanwhile some children, including some autistic children, for whom the mainstream classroom is not the right learning environment are forced into situations where they injure themselves, or others, in order to get out of an environment which is not the right option for them; an environment that overwhelms and harms therm.  My son, fortunately, has been accommodated in a separate learning environment for his primary ABA based instruction in our neighborhood schools with time spent in common areas of the school for other activities where he does get to interact with other students.  Conor was removed from the mainstream classroom, at our request, after he came home every day with bite marks on his hands and wrists.  He has been well accommodated by our schools and our school district. Other students for whom the mainstream classroom is not the right option have not always been so fortunate. 

New Alward Carr Government Will Roll Back Autism Progress in New Brunswick

Congratulations to New Brunswick's new Premier David Alward and all members of his team who were elected.  Congratulations also to those Liberals who were elected despite the obvious backlash against the Liberal government of Shawn Graham. I offer all these congratulations sincerely even though I know that the election of this government and the likely cabinet role to be played by Jody Carr and possibly his brother Jack Carr will spell the end of the progress that has been made in helping autistic preschoolers and students in New Brunswick over the past 4 years.  We live in a democracy and the people have spoken. Those elected, including the Carr brothers in their ridings, have received the endorsement of the people.  For this they deserve the hearty applause of all NBers including me.

Having offered these sincere congratulations  though I must also state that the Carr Family will exercise a profoundly  negative influence on the future of autistic preschoolers and students in New Brunswick. Their prominence will threaten existing programs of early autism intervention, autism trained Teacher Assistants and accommodation in alternative learning environments within neighborhood schools for autistic children and other children whose severe disability challenges make the mainstream classroom a negative, and in some cases, a harmful environment.  I know these things because I was actively involved, along with other well informed, determined parents of autistic children,  in the struggle to establish the preschool and school programs and policies that have made New Brunswick an autism leader in early intervention and education in Canada.  I know these things because throughout the years of struggle we were steadfastly opposed by the New Brunswick Association for Community Living to which both Jody and Jack Carr are intimately tied.

The NBACL has done much good in raising public awareness about disabilities generally, promoting acceptance of disabilities generally, and acceptance. The problem is that the "community" and "inclusion" principles of the Community Living organizations in Canada and in New Brunswick have hardened into resistance to accommodation of those with severe autism challenges and other individuals whose disabilities require accommodation and learning in different environments ... a separate quieter environment outside the mainstream classroom ... than that which NBACL and CACL insist upon for ALL students regardless of their specific disability and their specific challenges and needs. The fine principles of the NBACL have deteriorated into dogma and ideology and Jody Carr, his wife Krista Carr and Jack Carr have all , in the past, resisted  efforts of parents seeking to help their autistic children.  The Carr's have resisted evidence based approaches to early intervention and education of all children with disabilities, including autistic children, in favor of cliches. There is no room for compromise or accommodation in the Community Living based ideology which the Carrs  promote. For them It is the community cliche way or the highway.

Adult autism residential care is one of the areas in which little progress has been made in New Brunswick.  5 years ago the Bernard Lord Conservative government sent an autistic youth to the Miramichi Youth corrections facility for several months while he waited a place at the Spurwink residential treatment facility in Maine.    When Jody Carr vetoes efforts to create a professional, evidence based and compassionate residential care and treatment facility in New Brunswick he says that "we will not send them away" do not be fooled, do not believe him.   In 2005 the Lord  Conservative government sent them, autistic youths and adults,  away to Maine and to outmoded psychiatric facilities, even to hospital wards and Jody Carr, a Conservative MLA at the time,   said nothing .... absolutely nothing.  

For New Brunswick children and adults with autism the Alward Carr years will not be pretty. There is a rough trail ahead, a very rough trail.

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Autism and Education: CACL Promotes Discrimination Against Autistic Children

The Canadian Association for Community Living, and its provincial counterparts like the New Brunswick Association for Community Living, have done much to help persons with disabilities. Unfortunately despite their many good deeds they have also, for many years, been actively and intentionally promoting discrimination against some children with Autistic Disorders and other children for whom education in the mainstream classroom is not in their best interests because of their disabilities.

The message of the CACL is clear, consistent, and made without regard to the best interests of some children: No excuses for educating children outside the mainstream classroom, no accommodation of children whose disabilities require alternative learning environments, no concern for the best interests of children, like some children with Autistic Disorder, if their best interests require education in a setting outside the mainstream classroom. No excuses, no accommodation, no concern.

As a parent who has long ago requested that my son with Autistic Disorder and profound developmental delays be removed from the mainstream classroom I am offended by the message, relentlessly pushed by the CACL, and here in NB by NBACL, that portrays any request to educate children outside the classroom as an "excuse". My son began his education in the mainstream classroom where he was overstimulated by noise and other conditions in the classroom. He would come home each day with self inflicted bite marks on his hands and wrists. Those bite marks, were evidence. Those bite marks were Conor's way of telling us that education in the mainstream classroom was not in his best interests.

Conor was removed from the classroom and educated primarily in a separate room for academic purposes. He also visits some more social settings for appropriate purposes and for defined activities with an Autism trained, very competent Teacher Assistant. He goes to the school gym (see videos on sidebar of this blog), the kitchen, the pool, the library, the cafeteria and so on but his academic learning takes place in a separate room.

Conor has not suffered socially. Although he does not generally inititiate conversation, and in fact has limited verbal skills, he has been well liked by many children over the past several years. I drive Conor to school and on arrival I have seen several boys and girls approach Conor to greet him, say hi and show real joy at seeing him. More than one child has actually sought Conor out at our home.

The "education system" has accommodated Conor's disability, his special needs. The educators we deal with have sought our input and worked to help Conor; taking into account the realities of his Autistic Disorder including the fact that Conor was overstimulated in the mainstream classroom, was learning a different curriculum using different methods than other students. Conor has received this accommodation because of some conscientious educators and because we fought to get that accommodation. We did so despite the NBACL which is very well entrenched and influential. NBACL carries the CACL message that says that such accommodation is wrong, that the benefit Conor has received is not a sufficient excuse for education outside the mainstream classroom. The CACL message is discriminatory, harmful and offensive.

CACL has been told in the past that the full inclusion model for all is probably discriminatory. In Canada discrimination can be direct, intentional discrimination, or it can result from a failure by service providers to reasonably accommodate the needs of persons with disabilities. Yude Hentellef,Q.C. has been legal representative for many disability organizations and persons with disabilities. In 2004 he presented a paper The Fully Inclusive Classroom is Only One of the Right Ways to Meet the Best Interests of the Special Needs Child at the C.A.C.L. National Summit on Inclusive Education in Ottawa, Ontario. Mr. Hentellef reviewed studies, and case law, which indicate that full classroom inclusion is not appropriate for all special needs children and stated:

Page 7:

"The Supreme Court of Canada has categorically rejected the kind of contextual analysis that rests on group stereotypes of what is presumed to be in the best interest of a group of persons, regardless of their disability. The proposal that full inclusion will meet the needs of all special needs children is such a group stereotype. In other words, what may be good for one group is therefore good for all groups, no matter their disability. The Supreme Court of Canada has rejected this approach, which, because of its very nature, is discriminatory. "

Page 8:

"To suggest that even with everything in place in the inclusion classroom, it will be the best place for all children regardless of their need, is group stereotyping at its worst. It denies the absolute right of special needs children to be placed other than in the full inclusion classroom, when their parents and qualified professionals view a different placement as one that best meets their interests. In Eldridge, a 1997 decision, Mr. Justice LaForest who gave the unanimous decision of the Supreme Court of Canada, stated that persons with disabilities have too long been subjected to insidious stereotyping.

For anyone to insist the inclusion classroom can be the best place for all children regardless of their needs is by its very nature stereotyping and discriminatory.

The CACL philosophy summarized in its recent "No Excuses "campaign is stereotyping and discriminatory. With the emphasis on "no excuses" it implies that concerned caring parents, and competent professionals, who seek education settings outside the full inclusion classroom for a special needs child are in some way morally deficient, making excuses instead of doing what is best for the child.

In New Brunswick the NBACL and other full inclusion for all advocates like Gordon Porter, the current chair of the NB Human Rights Commission, have insisted that their way is the only way. They have dominated NB education for more than a quarter century and they are celebrated around the world. What the world may not know is that our full inclusion model has in fact itself been discriminatory and harmful. In the past 10 years changes have begun to be made on the ground by activists parents of some special needs children, including some autistic children, by conscientious educators and by the undeniable evidence that education in the full inclusion classroom is NOT in the best interests of ALL special needs children.

Hopefully some day CACL, NBACL, and other promoters of the Full Inclusion for All model will come to their senses and cease trying to impose their deeply held beliefs over the evidence and over the best interests of special needs children.

Hopefully someday the CACL and NBACL will cease promoting discriminatory practices in education.

autism