Severely Autistic NB Youths & Adults Need Special Treatment & Residential Care After Age 16

From: luigi.rocca

Date: 07/08/05 09:32:22

To: Ron.Harris@rvh.nb.ca; Robert.Lecky@rvh.nb.ca; sheila.bulmer@gnb.ca; mbmurphy; elizabeth.weir@gnb.ca; kentlib@nbnet.nb.ca; premier@gnb.ca; elvy.robichaud@gnb.ca; tony.huntjens@gnb.ca; news@timestranscript.com; letters@dailygleaner.com;newsroom@nbpub.com; cbcradionews@fredericton.cbc.cainfoam; Johnw.BETTS@gnb.ca

Cc: abowie2408; dav.lin; deversandy; hammelhome; hchamb; lbrry; nancybl; yolandep

Subject: Stan Cassidy Centre for Rehabilitation

 Dear Minister Robichaud:

It has come to our attention that officials at the Stan Cassidy Centre for Rehabilitation have unilaterally decided to stop accepting referrals of pediatric patients with Autism Spectrum Disorder (ASD). Our understanding is that currently 20% of the pediatric referrals to Stan Cassidy are for those with ASD. 

Needless to say, if this decision is allowed to stand, it would be a devastating development for those families that rely on this centre for services such as speech and occupational therapy. These families would be left without services in some cases and forced to fend for themselves. It would also leave a hole in an already insufficient network of services for individuals with ASD.

We find it unacceptable that the Autism community was not consulted on this decision. We request that this decision be reversed until such time as we in the Autism Community have had an opportunity to make the case that this decision will unduly punish many individuals who rely on the treatment they receive at the Centre.

I would respectfully request an immediate meeting with members of the Autism Community including representatives from the Autism Society of New Brunswick to discuss this matter.

Your prompt attention to this issue would be greatly appreciated.

Sincerely,

Luigi Rocca President
Autism Society of New Brunswick

In New Brunswick parents facing the realities of autism disorders grouped together, at times under the name FACE (Family Autism Centre for Education) and most often under the name Autism Society New Brunswick (ASNB) to advocate successfully for evidence based autism services.   One substantial accomplishment of NB's parent advocacy movement, which began with the letter above from then ASNB President Luigi Rocca, was the revival of the autism team at the Stan Cassidy Centre.  This facility provides a range of services needed by many autistic children and youths with complex autism disorders and associated conditions.  

An extension of the Stan Cassidy model of treatment, from its cut off at age 16 to the adult level and an expansion to include permanent residential care are what is needed for severely autistic adults in NB.

Will it happen? 

As previously noted by former Bernard Lord cabinet minister Tony Huntjens, costs actually favor such a facility and the need is real.  For years we have been sending severely autistic adults to a facility not designed for their needs at the Restigouche Psychiatric Hospital and to expensive facilities outside New Brunswick.  An adult care facility would end the discrimination against severely autistic adults, reduce costs for their care, bring them closer to families, provide employment for NB'ers and expand NB's status as a leader in autism service delivery.  It should happen and NB has seen the right thing done for early intervention autism services and autism trained TA's.  

Health

Province to fund dedicated autism team at Stan Cassidy Centre for Rehabilitation (06/08/17)

NB 1149

Aug. 17, 2006

FREDERICTON (CNB) - The provincial government has approved a proposal from River Valley Health for ongoing funding to establish a dedicated team at the Stan Cassidy Centre for Rehabilitation to provide services to children with autism, Health Minister Brad Green announced today.

"The creation of an interdisciplinary team of health-care professionals with a specific mandate to serve children experiencing severe autism symptoms was recommended by a provincial working group that included community representatives," Green said. "I am very pleased to announce that annual funding beginning at $350,000 will be provided by government to support this specialized team."

Green said government recognizes that the provision of services to children with complex autistic spectrum disorders requires the specialized expertise of a team of care providers.

"The specialized team will comprise one full-time professional with specific autistic spectrum disorder expertise in each of the following: developmental psychology, occupational therapy, speech language pathology, dietetics, and applied behavioural analysis," Green said.

The team will offer functional assessments as well as design, model and perform interventions for children who have the most complex forms of autistic spectrum disorders. It will work closely with families, pediatricians, extramural and hospital-based therapists, educators and all autism support groups to ensure that services are well integrated. Part of the team's mandate will include education, consultation and support to health-care professionals in the province.

"We are very pleased by this decision, and look forward to making a significant contribution to the well-being of children faced with the challenges of autism," said Dr. Ron Harris, administrative director of the Stan Cassidy Centre for Rehabilitation. "The presence of a dedicated team with the highly specialized skills needed to address the challenges is a great step forward for New Brunswick."

Green said that funding for the team is over and above the $2.8 million the provincial government has been investing annually since 2003 to provide services for preschoolers with autistic spectrum disorders.

The Stan Cassidy Centre for Rehabilitation is the only facility in the province with teams of highly specialized health-care professionals and the equipment and technology required to treat patients with complex neurological disorders.

The new Stan Cassidy Centre is located beside the Dr. Everett Chalmers Regional Hospital in Fredericton, and opened in June. It was built at a cost of $28 million.

06/08/17

Autism Society New Brunswick 2005 Submission to the MacKay Inclusive Education NB Review

May 24, 2005

  

AWM Legal Consulting Inc.
7071 Bayers Road R.P.O. box 22076
Halifax,  Nova Scotia  B3L 4T7 

To Whom It May Concern:

The following  is Autism Society of New Brunswick’s submission to the Inclusive Education: A Review of Programming and Services in New Brunswick committee.

  

Thank you,

Luigi Rocca

President, ASNB

            

“If a child cannot learn in the way we teach, then we must teach in the way he can learn.”  Ivar Lovaas.

Autism presents one of the biggest challenges to the New Brunswick Government’s inclusion policies.  According to the Department of Education’s own numbers, there are no less than 1,000 students in the public school system with Autism Spectrum Disorder.  In the majority of cases, these students are not receiving a meaningful education.  

What Inclusion means to Autism Society of New Brunswick

Inclusion is a philosophy, not a methodology.

-          Inclusion should provide autistic school children access to a REAL education in a positive learning environment which may be inside or outside the classroom, or a combination of both, depending on the individual circumstances of the student with autism with the support of an individually assigned and dedicated Teacher Assistant (TA) formally trained in Applied Behavioural Analysis (ABA) methodologies.

-          Inclusion is more than simply including students with an Autism Spectrum Disorder (ASD) physically in the classroom.

-          “The philosophy of “full inclusion” is that students with special needs can and should be educated in the same settings as their normally developing peers with appropriate support services rather than being placed in special education classrooms or schools.”  Medical School, University of North Carolina.

Although the goals and values underlying full inclusion are laudable, neither research nor thoughtful analysis of the nature of supports concurs.  There is very little empirical evidence to support the above definition of full inclusion as it relates to students with autism.

-          Numerous studies clearly show students with an ASD cannot learn in a typical classroom environment.  Students with an ASD learn in a one-to-one setting, exclusive of the classroom.

-          Students with an ASD who have no supports will not learn.  If students with an ASD have supports such as formally trained TA’s in ABA methodology, reinforcers, trials, rewards, visuals, etc., learning occurs.

-          ASD, by its very nature, manifests itself differently with each student.  Therefore, flexibility is absolutely crucial with respect to classroom inclusion.  Some students with an ASD, particularly lower functioning students learn better in a quieter setting outside the classroom while some can learn in a room with their peers; most will benefit from a judicious mix of the two settings.  It is imperative that each student be properly assessed by trained individuals so that a proper and individualized learning environment can be designed for each student.

-          Many students with an ASD will be following a completely distinct curriculum.

-          It is critical to take into account the needs and characteristics of the individual student with autism and apply flexible inclusion policies so as to ensure the highest quality education and development.

What Do We Need

-          Ideally, parents of students with an ASD would benefit most by having teachers trained in ABA methodologies to teach their children on a one-on-one basis.  We realize that with the one-to-one methods required for most autistic students, it would be unrealistic to expect this of the public school system.

-          In general, New Brunswick has some of the highest quality teachers anywhere.  They are, however, sorely lacking in the training and knowledge necessary to plan and implement effective strategies for students with an ASD.

-          The Department of Education does not provide the proper training in ABA to work one-to-one with ASD students.  Faced with this reality, parents have asked for dedicated, individually assigned TA’s trained in ABA.

The Department of Education, the Teachers Union, and CUPE Union representing TA’s have to understand this reality, and adjust their collective agreements to reflect it.  It is imperative that no student be denied a meaningful education due to union or collective agreement issues.  Unfortunately, this often what happens so it is critical that the current mindset be changed.

-          Parents are frustrated and angry at the Department of Education policy on TA assignment, as the TA is for the teacher not the individual student.  Also, TA’s changing on a regular basis from year to year, multiple TA assignments to a student with autism throughout the school day, no guarantee that a TA trained in ABA methodologies will be assigned to an ASD student.

-          The TA Union needs a special designation of TA’s with ABA training to be matched with students   with an ASD.  Currently TA’s with special training in tube feeding or catherization are matched to students with this type of need and the same standard needs to apply with ABA training of TA’s.

-          The members of the Unions should have their rights but they should also be part of a regime which reflects more expressly the need to protect students with autism who are sometimes hurt by job competition process and work jurisdiction disputes between the Teacher and TA unions.

-          Faculties of Education need more learning in Special Education given the number of special needs students.  Universities should be offering degrees in Special Education.

-          To achieve inclusion for students with an ASD proper support is needed in the form of TA’s who can work one-to-one with students with autism, and who are formally trained in ABA methodology, which has been proven effective in educating students with autism.

 A Service Delivery Model 

        -   In New Brunswick ABA Training is available through the College of              Extended Learning: Autism Intervention Training.  The Department of Education to date has not seen fit to provide this training to its TA’s and Methods & Resource Teachers (M&R).  Yet, it is this very training which would squarely meet requirements to teach students with an ASD.

-          The Autism Support Worker (ASW) course offered through the College of Extended Learning is exactly what is needed for TA’s who work in the school system with students with autism.  It would be purely arbitrary to fail to provide the necessary training, or to provide less adequate training to the TA’s who work with students with an ASD in the more challenging school environment.

-          The Clinical Supervisor (CS) training offered through the College of Extended Learning is exactly what is needed for the Resource & Methods teachers.  These ABA trained teachers would be qualified to develop and monitor ABA programs designed specifically to each individual student with autism.  The ASW trained TA will be under the supervision of the trained M&R teacher, to implement the ABA programs with the individual student with autism.

-          Speech Pathology, Occupational Therapy, and Physiotherapy services are offered to students through the Extra Mural Program.  The input from these professionals, which is often required for the student with autism, can be incorporated into the individual ASD students ABA program by the CS trained M&R teacher, followed by the ASW trained TA to implement.

-          The teaching of life skills, especially in the Middle and High School levels; need to be incorporated into the autistic students education program.

-          A specific outline of transition protocols for transitioning from Elementary to Middle School, and Middle School to High School, based on the individual autistic student’s needs.

What Are the Systemic Barriers to Having Inclusion

Again…. Inclusion is a philosophy not a methodology.

-          A teacher cannot instruct an entire class and still provide the level of one-to-one instruction required by a student with an ASD.

-          Inconsistency and misinterpretations of the learning needs of students with an ASD at the Department of Education level, School District level, and School level.

-          Collective agreements between the NBTA and CUPE representing TA’s, do not address the interests of students with an ASD, and some procedures and rights within the contracts can be detrimental to the education of students with an ASD.  Two examples are work jurisdiction and seniority rights.

-          Long wait times for students with an ASD to access Occupational and/or Speech Therapy are not the exception, they are the norm.  Once recommendations are made, it is common for the recommendations NOT to be implemented.  School Administrations, teachers, and M&R teachers do not appreciate the “how” and “why” to implement these recommendations.

-          Organization of Team meetings often falls on the shoulder of the parents.

-          Schools have denied parents requests to have the Department of Education’s Autism Consultant involved.

-          The Department of Education’s required document of the SEP/IEP is not meaningful.  The goals are often vague, not clearly defined, and not a working document.  It is developed and utilized in a variety of ways throughout the province.  Often viewed by parents as a waste of time to incorporate.

-          Educators often label behaviors incorrectly i.e.: bold and rude, when in fact the behavior is communication impairment.  For example, we know of one high functioning student with an ASD who forced himself to vomit in order to have himself removed from the classroom which was causing him great anxiety.  This behaviour is often interpreted as “bad” when in fact from the student’s perspective, it is very rational.  In time, what is considered a normal environment for most students becomes torture for a student with an ASD and they will do whatever is necessary to stop it.  Any rational person would do the same thing.

-          Teachers and School Administration often inadvertently reward negative behavior of students with an ASD.  Thus increasing the negative behavior leading to student frustration, and at times, suspension.  Suspension is a consequence a student with an ASD might not have any ability to understand, thus leading to more complications for the student to receive a REAL education.  In addition, what is perceived by the teacher as a “punishment”, can actually be a “reward” for the autistic student because it removes him/her from the classroom.

Propose Alternative Methods of Delivery

-          The Department of Education needs to endorse having more than one Autism Consultant for the entire province.  One Autism Consultant is inadequate to serve a population of more than 1000 students.

-          Training of TA’s as ASW’s, and training of M&R teachers as CS’s through the College of Extended Learning: Autism Intervention Training.

Accountability Measures

-          The Department of Education fully endorse ABA, providing formal training to TA’s and M&R teachers.

-          Develop a legal and workable education tool to replace the SEP/IEP.

-          ABA was endorsed recently in the Department of Education’s Teaching Students with Autism Spectrum Disorder document.  However, the document is woefully inadequate on specifics of formal training and implementation of ABA methodologies.

-          ABA is endorsed by a wide variety of very credible institutions and research organizations.

-          Court cases have clearly outlined ABA as the only proven method for treating and teaching children with autism, and the child’s constitutional right to have it provided.

Auton, BC 2000

Deal, Tennessee 2001

Wynberg, Ontario 2005

Survey Results

Autism Society New Brunswick conducted a survey with parents of students with an ASD to get their views on the current system.  In the interest of brevity, we are not including the full results.  We can, however, summarize the views of parents in two words: frustration and despair.  The vast majority of parents, particularly those of low functioning ASD students, believe that the current inclusion policies are failing their children.  We will provide the details of the survey at your request.

Funding Model

One suggestion would be that the Province of New Brunswick acting through the Department of Education   ensure funding to ensure that TA’s are properly trained in ABA  and available to each student in the province that needs them, regardless of which school district they are located in. 

It should not be left to the individual school districts, and whatever funding model that is adopted should ensure this goal is met.

Final Comments

-          Until the Department of Education commits to ABA training of TA’s and M&R teachers, the outcome for quality education and more importantly a quality of life during the school years will continue to be bleak and discouraging.

-          Do not let students with an ASD currently in New Brunswick schools become a generation lost to bureaucratic inertia or lack of will.

We ask that the Department of Education formally train TA’s in ABA methodologies, who work with our autistic children.