Parent Advocacy, Autism Services and the Lack of Decent Adult Autism Care in New Brunswick

In Canada October is our official Autism Awareness month.  

That is not as widely known as it might be for a number of reasons including the fact that we live next door to the large, influential United States where April is the official Autism Awareness month. A second reason is that we do not have a meaningful National Autism Strategy.  Here in Canada our federal government has taken a small and narrow approach to autism.  Our federal government plays no meaningful role in providing autism services across Canada and in fact plays no meaningful role in providing reliable evidence based information about autism.  For that reliable autism information parents and autism advocates have had to look to the United States for guidance. It is quite understandable in those circumstances if Canadians assume that April is also autism awareness month here in Canada. In some provinces though, particularly British Columbia and New Brunswick strong parent advocacy did lead to creation of evidence based autism services being available. 

Here in New Brunswick we live in one of Canada's smaller, less affluent provinces.  Nonetheless we were, for a while at least, a Canadian leader in provision of evidence based early autism intervention, thanks to strong parent advocacy and sound guidance about evidence based autism interventions from UNB Professor Emeritus (Psychology) and clinical psychologist Dr. Paul McDonnell. With the information base to which Paul McDonnell directed us, parents were able through determination and strong advocacy, to prompt our governments, both Conservative and Liberal,  to provide evidence based early intervention services, in both English and French at a level that was recognized by the Association for Science in Autism Treatment:

"ASAT Responds to Canadian CBC's "N.B. Can Be a Leader in Autism Services"

Saturday, October 23, 2010

I read with great interest your recent article about the state of services in New Brunswick (“N.B. Can Be a Leader in Autism Services," September 14, 2010). I do beg to differ about the title of the piece. New Brunswick is already a leader. To have amassed 800 trained agents of change in six years is nothing short of incredible and inspiring, particularly given the diversity of your province with respect to geography and language. Other Canadian provinces can look to New Brunswick for an exemplary model of how things could and should be for children with autism and their families.

There is a misconception that services in the United States are superior to that of our neighbors to the north. I can assure you that children with autism in rural areas and in economically depressed areas of the U.S. do not always access state of the art, science-based treatment such as those based on applied behavior analysis. In many cases throughout the US, children with autism receive poor quality behavior analytic services that may be lessened if providers were able to access more intensive training and networking opportunities similar to what is being offered in your province. Part of the Association for Science in Autism Treatment (ASAT)'s mission is to help close that gap through information dissemination, and we are keenly interested in the efforts of leaders like yourself developing, implementing, and evaluating systems.

And like other true leaders, you have looked critically at your accomplishments with an eye toward making every year of service delivery better than the previous year. We applaud your recognition that treatment parameters such as intensity need to be tailored to each child to maximize gains. When resources are scarce, this individualization can be an arduous task, but nonetheless critically important. Equally important is the need to communicate to government officials, tax payers and other stakeholders that immense financial savings are attached to doing right by our children when they are young.

It is unfortunate that funding for parent training is not more abundant. Optimal outcomes for children with autism are predicated on the support of educated, informed and skillful parents. Promoting carryover, ensuring consistency, and enhancing skill development across all environments are crucial roles for parents, but parents require support and training to assume these crucial roles. Your stated concerns and insights about the dearth of services for adults are much appreciated, and reflect the challenges that we have here in the U.S as well.

Families of children with autism in New Brunswick are blessed. Keep fighting the good fight.

David Celiberti, Ph.D., BCBA-D, President

Association for Science in Autism Treatment"

The most advocacy focused organisation in New Brunswick was group, of which I was a founding member, called FACE ... Family Autism Center for Education. Despite the reference to Education in the title FACE was primarily an advocacy organization that. because of its advocacy focus, did not enjoy official charitable status. We met in my law office board room on King Street in Fredericton and we lobbied persistently online, through the "regular, mainstream" media such as CBC, Rogers Television, The Daily Gleaner and the Telegraph Journal.  Eventually we were able to convince more reluctant members of the provincial Autism Society to join our advocacy efforts and we returned to the Autism Society New Brunswick. Together parents stood in front of the Legislature and other provincial government buildings holding signs and making our voices heard.  

Ultimately we received conscientious, serious responses from high political leadership in the Conservative Bernard Lord government and subsequently in the Liberal Shawn Graham government. With responsive leadership from our provincial cabinets we were able, for a considerable period of time, to leap frog over the more bureaucratically inclined senior civil servants who wanted to go slow who lacked the understanding of the need for urgency in helping our autistic children. 

As noted by ASAT's David Celiberti we were able to establish a strong early intervention autism service base here in New Brunswick.  We were also successful in having our governments begin providing strong autism training to Teachers' Aides and Resource Teachers to assist autistic children in our schools.  That fight was somewhat more difficult.  "Educators" did not really see it as the place of parents to play a significant role in determining what services are available in NB schools.  Again, we appealed to our political leadership and with solid information from local experts like Paul McDonnell and US sources like ASAT,  the Office of the US Surgeon General and state autism reports from Maine, New York and California we were successful. We also used the tools at our disposal including appeals under our provincial Education Act and Human Rights Act to help our autistic children receive autism trained aides in our schools.

Strong parent advocates in British Columbia played a significant role in providing tools for New Brunswick parents to use in exerting political pressure here. The Hewko BC Supreme Court decision and the Auton BC Supreme Court  and Auton BC Appeal Court  decisions (until the latter was reversed by the Supreme Court of Canada) provided valuable tools to assist us in our advocacy here in NB.  Ontario parents fighting for autism education services in the Deskin-Wynberg litigation were also of great assistance to our efforts here in NB. 

New Brunswick parent advocacy was very successful in establishing the early intervention and school autism services here in NB.  We intentionally started out by focusing on early intervention services and then moved on to the school years.  Unfortunately the success we enjoyed in advocating for our children in early intervention and school services has not been repeated in the adult years. We are as we have been for many, many years largely bereft of any meaningful adult autism care residential care and treatment services.  Our more severely impaired autistic adults will, if they are lucky, live in group homes staffed by people with no autism specific training and little if any professional oversight. Those, like my son, who are severely autistic AND developmentally challenged will probably have to live in hospital facilities, again, if they are lucky.  New Brunswick has for many years ignored these serious needs of autistic adults although there are some signs of an awakening in the form of a pilot project involving the training of one service providers at one group home. 

We also have to continue the battle to make our civil servant decision makers understand that some people with autism have other challenges which present themselves which can provide very serious risks to the safety of autistic adults. Many with autism and intellectual disability also suffer from seizures, some of which are life threatening.  Some on the autism spectrum, including some with higher functioning levels also suffer from serious challenges like depression, challenges which may be made very difficult to address because of their autism disorders. 

In Autism Awareness Month in Canada we still lack a meaningful National Autism Strategy.  Here in New Brunswick our successes at early intervention are still recognized as in they were by ASAT in 2010 and by a mother who recently returned to NB from Ontario to open a Bistro in her hometown of Woodstock and because New Brunswick offered better autism services for her autistic son than those that were available in Ontario:

"Opening a restaurant, however, was not the motivation to bring McQuade back to Carleton County. She has a four-year-old son with autism, and she says the treatment in New Brunswick is more accessible and better than what was available to her in Ontario."

A new bistro in the square, Telegraph Journal, September 5, 2013

Many New Brunswick parents whose children are currently receiving early autism intervention services or school autism services may be unaware that it was parent advocacy that led to the creation of these services.  We have to be vigilant to maintain and expand these services at the early and school years. And we absolutely have to work to bring to the attention of government the need for a full range of autism residential care services and for the end of policies of excluding adults with Aspergers/autism from other mental health services.

Adult Autism Care in New Brunswick: An Open Letter to Premier David Alward

 

May 6, 2013

Honourable Premier David Alward

Respected Cabinet Ministers and Party Leaders

Dear Premier Alward

I am the Acting President of the Autism Society New Brunswick  and a parent that was involved, with many  other parents, in the advocacy that led to the establishment of the UNB-CEL autism intervention training program, the provision of early autism intervention to children aged 2-5, UNB-CEL  autism specific training of Education Aides and Resource Teachers and the reversal of the decision to close the Stan Cassidy Center tertiary care autism team. We also argued with some modest success for an evidence based, student centered, definition of inclusive education. We have been less successful in advocating for  a continuum of placement options to accommodate the varied, complex needs of autistic students although individualized instruction does continue in some schools. 

 

Autism successes in New Brunswick have resulted from many factors including access to sound, knowledgeable, professional advice that oriented us toward evidence based, scientific goals to assist our children's very challenging needs and responsive  leadership in the Lord and Graham governments.  Despite these gains, which are in need of further refinement and advancement,  we must, with sorrow, shame, and fear, acknowledge that  we have to date failed to see any substantial improvements in services  for New Brunswick adults with autism disorders. That failure, like the aforementioned successes, must be shared by parent advocates and government decision makers.

 

Several news agencies have highlighted events in Ontario where parents left their 19 year old severely autistic son with a government office because they were unable to continue providing him with the necessary level of care.  Many New Brunswick parents including me, and my wife, have also long feared that day. That fear grows stronger with each year of non action, each year of failure to address seriously the needs of autistic adults across the autism spectrum. 

 

Many parents in New Brunswick seek meaningful assistance to help care for their adult autistic children in their homes.  Obviously at some point parents grow too old or exhausted and ultimately become enfeebled and pass on. We do so  with the knowledge that no credible, comprehensive autism care system is in place to care for our adult autistic children who require assistance when we can no longer help them.  Moderately to severely autistic and intellectually challenged autistic adult children will face serious difficulty living in group homes with untrained staff and non existent educational and social options.  Our most severely affected autistic adults will live in the Restigouche Regional Hospital psychiatric unit or in facilities out of  province like the Spurwink facility in Maine. 

 

Money is always an issue in government decision making and that is understood by all.  However, the failed group home system that exists in NB   also carries costs such as placements in Spurwink Maine at several hundred thousand dollars a year per individual.  Money is part of the problem but so too is the overwhelming dominance of the "community"philosophy in the mindsets of NB's public decision makers.  There is no question that those who have promoted the community/inclusion model in NB have made very substantial contributions to the lives of most persons with disabilities in our province but  the dominance of their beliefs, and the rigidity with which they are maintained, precludes the development of evidence based alternatives and prohibits the development of a facility that can provide permanent residential care and treatment for those with severe autism and co-morbid disorder challenges.  

 

Autistic residents of group homes have been charged with assault when in conflict with untrained staff.  An autistic youth was housed temporarily on the grounds of the Miramichi correctional facility and at least two New Brunswick residents with autism have been sent to Spurwink in neighboring Maine.  We do not have a modern, professional,  permanent residential care and treatment facility for adult New Brunswickers with severe autism in large part because of the rigid adherence to a decades old philosophy that simply ignores contrary evidence including those persons who are sent to psychiatric and general hospital wards, out of province facilities and correctional facilities to spend their lives.  Public events to discuss disability policies and service requirements are typically organized in pre-arranged "table discussion" formats that prevent serious open discussion of contentious issues.

 

Over the last decade the Autism Society New Brunswick advocated for a continuum of residential care and treatment options to provide for our autistic adult children.  Three years ago, during the 2010 provincial election,  UNB Professor Emeritus (Psychology) and practicing clinical psychologist Paul McDonnell articulated in a CBC interview the concept of a continuum or network of residential care and treatment center.  Professor McDonnell spoke of the need for a modern adult autism residential care and treatment system in New Brunswick with a center that would provide residential care and treatment for those severely affected by autism, a center that could also assist in the training and service provision in group homes and facilities in communities around the province.  The center would be a modern facility that could provide educational and social elements in the lives of severely autistic adults. No progress has been made in moving towards such a home grown solution notwithstanding the international recognition that NB received for its successful UNB-CEL early intervention autism training program.

 

On behalf of the Autism Society New Brunswick, and parents of autistic children and adults, I ask you Mr. Premier to commit to the modern, professional system of adult autism residential care  articulated by Professor McDonnell.  An adult autism residential care and treatment facility based in Fredericton, with professional administration, trained staff, evidence based treatment,  education and social programs for the residents is needed.  An autism center would  provide desperately needed  permanent residency for the most severely affected by autism disorders, training and advice for staff in community based group homes, and assistance for parents whose adult children are still living with them.  The Fredericton location would be centrally located and in close proximity to other New Brunswick autism successes and expertise at UNB and the Stan Cassidy Center.  

 

Much time has passed with no serious response to our calls to address the needs of autistic adults. There has been no progress to date. Hopefully that will now change and work can begin as soon as possible on the development of an autism residential care and treatment facility.

  

Respectfully,

Harold L Doherty

Fredericton

cc. ASNB

      media

Education and Early Childhood Development Minister Jody Carr Opens a Dialogue with the Autism Society New Brunswick

L: Education and Early Childhood Development Minister Jody Carr

R: Autism Society New Brunswick Acting President Harold Doherty

The Autism Society New Brunswick meeting last Saturday March 23, 2013 was scheduled to be a regular meeting with election of a new Board of Directors and routine business.  That plan was changed, the election was adjourned, at my request, and after passage of a motion to that effect, and the routine business, for very good reason did not take place.  Instead ASNB took full advantage of the presence at our meeting of Education and Early Childhood Development Minister Jody Carr.  

Minister Carr had to adjust his schedule to attend and we only received confirmation he would be there the day before the meeting. The brief notice though did not reflect the nature of Minister Carr's attendance.  He was present for the entire meeting, he participated actively throughout, took notes and answered questions openly and directly.  In the 12+ years that I have been an active autism advocate we have had meetings with premiers and cabinet ministers in their offices but this was the first time  I know of that a cabinet minister actually came to one of our meetings.   

Education and Early Childhood Development Minister Jody Carr attended our meeting and to his credit was fully engaged.  Details of the meeting and discussions with the Minister will be published soon.  For today I would like to say thank you to Minister Carr for his presence and active participation at our meeting.  We look forward to future discussion with you,  and hopefully your colleagues, of matters affecting New Brunswick children and adults with autism.

Autism Society NB Special Guests

Anyone with an interest in autism in NB is invited to tomorrow's meeting at MacLaggan Hall, UNB Fredericton Campus, doors open at 12:00 noon, meeting starts at 12:30 pm.   Special guests expected to attend include:

Minister of Education and Early Development Jody Carr
Bill Innes, Director of Child Welfare & Youth Services
Annette Bourque, Clinical Director, Office of the Ombudsman & Youth Advocate
Nick Duivenvoorden, Liberal Party, New Brunswick

Look forward to seeing everyone tomorrow.

Harold Doherty
Acting President ASNB

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

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

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

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

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

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

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

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

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

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

Our voices must be heard!

Talking Autism In New Brunswick With NDP Leader Dominic Cardy

Together with New Brunswick's foremost autism expert, clinical psychologist and UNB Professor Emeritus (Psychology) Paul McDonnell,  I enjoyed a visit to NB NDP headquarters on Prospect Street in Fredericton this afternoon for a direct, candid and open minded discussion about autism services in New Brunswick with NDP leader Dominic Cardy and NB NDP Executive Director Amanda Francis.  We covered a lot of ground with Paul reviewing early intervention, school and adult care autism services along with the parent advocacy that led to those services being provided. (I chimed in on occasion).  

In fact everyone contributed to the discussion. It was refreshing to discuss autism issues without having to break through a fixed mindset.  Mr. Cardy's office had responded promptly to the February 7. 2013 Autism Society New Brunswick invitation to attend our AGM  and Ms Francis indicated Mr. Cardy would be pleased to meet with us.  With all the news breaking this week of the NDP role in the anti-patronage bill and former Liberal Minister Kelly Lamrock joining the NDP I was fully expecting a postponement of the meeting.  The meeting went ahead though and it was everything you could hope for in discussing a cause, in our case autism, with a political leader. 

Mr. Cardy also re-affirmed his commitment to attending the Autism Society New Brunswick meeting at UNB Fredericton, MacLaggan Hall  on March 23 beginning at 12:30.  

On behalf of ASNB I want to thank Mr. Cardy and Ms. Francis and say that we look forward to continuing the discussion!

Autism Services in Stormy Economic Weather

Autism in New Brunswick: Where Are We Now?

How Did We Get Here? Where Are We Going?

ASNB Open Meeting

Saturday January 15 at 10 am

Wu Centre UNB Fredericton

ASNB is holding an open meeting for anyone affected by  autism in New Brunswick.  The purpose of the meeting will be two fold: To re-organize the Autism Society New Brunswick, the provincial autism voice that fought very hard for the autism services we currently have in New Brunswick,  and to summon the will, in challenging economic times, to ensure a future for autistic children and adults in New Brunswick.

ASNB is fortunate to have Dr. Paul McDonnell and Dr. Tara Kennedy addressing those present.

Tara Kennedy, MD, PhD, FRCPC, is a Developmental Pediatrician who works with children and families affected by autism in her position as Clinical Leader of Pediatric Autism Rehabilitation Services at the Stan Cassidy Centre for Rehabilitation in Fredericton, New Brunswick.

Paul M. McDonnell, Ph.D., is a Professor Emeritus (Psychology) at UNB and a clinical child psychologist with a private practice who has helped many autistic children directly and indirectly by guiding the parents who fought for our current autism services in New Brunswick.

Harold L Doherty autism parent and advocate will also be speaking about autism parenting and autism advocacy  in difficult economic times. 

The audience will be speaking. The floor will be open.

 If there is something you want to say, speak up.

Contact Harold L Doherty at  AutismRealityNB@gmail.com

Autism Society New Brunswick Meeting Speakers Dr Tara Kennedy and Dr Paul McDonnell

Dr. Paul McDonnell and Dr. Tara Kennedy will be speaking at the Autism Society New Brunswick Meeting Saturday January 15, 2011 10 am at the Wu Centre UNB Fredericton.

Tara Kennedy, MD, PhD, FRCPC, is a Developmental Pediatrician who works with children and families affected by autism in her position as Clinical Leader of Pediatric Autism Rehabilitation Services at the Stan Cassidy Centre for Rehabilitation in Fredericton, New Brunswick.

Paul M. McDonnell, Ph.D., is a Professor Emeritus (Psychology) at UNB and a clinical child psychologist with a private practice in Fredericton who has had a special interest in both assessment and intervention with children who have various forms of Autistic Spectrum Disorders. He chairs the UNB Autism Steering Committee and has been a consultant for the University of New Brunswick's Autism Intervention Training Programme since it began in May, 2004.

Event:      Autism Society New Brunswick meeting

When:     January 15, 2011 beginning at 10 am

Where:   Wu Centre, UNB Fredericton, Fredericton NB

Autism Society New Brunswick Meeting January 15, 2011

The Autism Society New Brunswick will be meeting Saturday, January 15 2011 beginning at 10 am at the Wu Centre, UNB Fredericton.  Everyone in NB affected by autism, whether you are autistic, have an autistic child, family member or friend is invited to attend.  The preschool autism intervention services now in place did not exist a decade ago. Teacher aides and resource teachers had not been trained at the UNB-CEL Autism Intervention Training Program. Individual learning environment accommodation did not exist to any extent. These services resulted from a  determined group of parents working through the Autism Society New Brunswick.  ASNB was unfunded by government and did not have paid staff.  We were conflict free and dedicated our energies toward making changes for the benefit of autistic children, youth and adults.  

More needs to be done.  Let's  get it done. Come to the ASNB meeting at the Wu Centre, UNB Fredericton on Saturday January 15 2011 beginning at 10 am and get started. 

See you there.

Harold L Doherty

Harold Doherty's Autism Advocacy Awards

#1 Autism Advocacy Award - Conor's Smile, Joy and Happiness

#2 Autism Advocacy Award - An ASNB Mug

Given To Me By Fellow Parents, Friends and Officers of the Autism Society of New Brunswick. The Mug was given to me a couple of years back and, like me, shows the wear and tear of time. The Hulk was a nickname given by former ASNB President Lila Barry, who has been a force for autism in New Brunswick. The picture is my "mug" superimposed on a target background.

#3 Loyal Order of the Flying Swine Award

I was one of the recipients of the Flying Swine Award handed out by Jean Lewis and David Marley. This award has been handed to few people but includes some very distinguished autism advocates including Jim Munson, Shawn Murphy, Andy Scott and peter Stoffer.

With these three awards I have been truly honored and will continue my autism advocacy efforts.

autism

Autism Society NB AGM Oct 18 Crown Plaza Fredericton

Autism Society New Brunswick Annual General Meeting

Saturday October 18, 2008, 1:30-4:30

Crown Plaza Fredericton

The ASNB AGM will take place this Saturday October 18 2008 from 1:30 to 4:30 at the Crowne Plaza Fredericton. Harold Doherty will be speaking. Food and drinks will be served.


autism

School for Autistic Children in New York

In New York a school for autistic kids is opening. The school will feature an evidence based, ABA approach, using discrete trial training and also utilizing elements of speech language therapy, occupational and physical therapy, PECS and some elements of TEACCH. The classrooms will be adapted with special computers, monitors and programs. This school appears to be an extension of a successful pre-school program offered by the same HeartShare school. This is an amazing development that is highly unlikely to ever occur in any school district in the Province of New Brunswick.

In New Brunswick over the past 30 years the education of all children has been dominated by a philosophy that dictates mainstream classroom inclusion for all students regardless of their disabilities or abilities. There are exceptions. Some districts and schools have cooperated with parents and allowed autistic children,particularly severely autistic children such as my son, to receive the greatest part of his learning in a separate area with visits from classmates for activities such as reading buddies and with Conor visiting the mainstream classroom for specific defined activities for limited periods of time. By and large though in New Brunswick's education system educators and parents are pressured to place all children in a mainstream classroom whether it is suitable for them or not.

At major events such as the teachers development workshop which was held to review the MacKay Inclusion review process the Department of Education partnered with the New Brunswick Association for Community Living which aggressively promotes the philosophy of mainstream classroom inclusion for all students. Requests by the Autism Society New Brunswick to participate as a partner in the workshop were rejected by the Department of Education notwithstanding the number of autistic children in New Brunswick schools and the severity of the challenges posed in educating them. The NBACL philosophy of total mainstream inclusion is also promoted by the presentation by that organization of awards to teachers who exemplify what the NBACL considers to be best inclusion practices. The mainstream classroom philosophy for all is also well represented by NBACL participation on the Premier's Council on the Status of Disabled Persons and in the New Brunswick Human Rights Commission whose current chair, Dr. Gordon Porter, was instrumental in the implementation of the mainstream classroom for all philosophy in New Brunswick schools and is touted as an expert on the inclusion of students with a disability into regular classes on the commission web site.

With such an entrenched mindset in favor of the mainstream classroom inclusion philosophy I am thankful that school and district educators have, at least to date, cooperated with us in creating an alternative learning arrangement for my son. In the big picture though the emphasis on classroom inclusion has kept many children in the mainstream classroom even when it is not suitable for them. It also makes it extremely unlikely that an option such as a school for autistic school children will ever see the light of day in the Province of New Brunswick.

http://tinyurl.com/27g8xf



New school for autistic kids

02/01/2007

You hear it again and again—the incidence of autism is on the rise. In fact, according to the latest statistics, 1 in 166 children are diagnosed with autism and reported cases are growing at a rate of 10-17 percent each year.

With all these children needing services, HeartShare Human Services of New York is proud to be responding to the needs of the community by opening its new HeartShare School. This program is for school-age children with autism and mental retardation from all five boroughs.

Located at St. Finbar’s School, 138 Bay 20th Street in Bensonhurst, children ages 5 through 14 are eligible for services.

Scheduled to open in February, this program is unique to Brooklyn in that it will primarily follow the Applied Behavior Analysis (ABA) approach with the emphasis on discreet trial learning. Some components of the TEACCH methodology and Picture Exchange Communication System will also be used.

Started at the urging of parents who had gone to NY State Senator Martin Golden to seek ABA-based educational services for their children, the program will have five classrooms, each structured with class-room style learning and speech, occupational and physical therapies.

Additionally, each classroom will have adapted computers, touch screen monitors and specialized program software that addresses the learning needs of children with disabilities.

“HeartShare has had a great deal of success teaching children with autism in our four pre-school programs,” noted President and CEO William R. Guarinello. “That is why parents turned to us to start a program for older children. There were no appropriate educational services in Brooklyn for many of these families.”

Golden stated, “I am excited that as a partner with HeartShare Human Services, the dreams of the parents who have approached me seeking the best educational opportunities for their autistic children right here in our community will come true. For too long, Brooklyn’s autistic community has been underserved despite the rising numbers of those diagnosed. In that notion, we are going to provide at St. Finbar’s School a state of the art school that is ready to teach the autistic children of our community. We have done a unique and important thing in the planning and establishment of this school. In doing so, we will make better the lives of many now and in the future, for through HeartShare, they will receive an excellent and solid education.”

When at full capacity, The HeartShare School will provide full-day educational services to 48 children. “We still have open placements,” said Carol Verdi, vice president of Educational Services at HeartShare.

“Children from all five boroughs are eligible, but must be on the Pending Needs list through the Central Base Support Team within the New York City Department of Education. HeartShare is excited about the opening of this new program to meet the needs of students in the community.

“Families have been an integral part of the planning process,” said Verdi, “and we will ensure that they remain involved as we move forward.”

For more information about The HeartShare School, contact HeartShare Human Services at 718-323-2877 or visit www.heartshare.org.

Jason Oldford Testifies Before the Canadian Senate Committee Studying Autism Funding In Canada

Jason Oldford is a person with autism who served on the Board of Directors of the Autism Society of New Brunswick for several years where he played a key role. On December 6, 2006 Jason Oldford testified before the Standing Senate Committee on Social Affairs, Science and Technology which was meeting to consider the inquiry on the issue of funding for the treatment of autism in Canada. Jason's testimony was recorded in Hansard:

"Jason Oldford, as an individual: I am honoured to address this committee. I was diagnosed with autism in 1974 when not much was known about it. I will tell you a bit about myself. I will not take long. I have quite a few things to say about funding for treatment.

I still have a few weaknesses with my autism. Eye contact is one of them. My social skills are not perfect. They are not up there with a typical person either.

On the plus side, my language developed normally. I was able to read by the age of three. I know trivial matters that other people would not dream of knowing. I tend to interpret things literally sometimes.

I have two university degrees and I attended public school with all the other children. I was not put in a special education class.

The reason I accepted the invitation to appear before this committee was to tell you what I would like to see. I would like to see severely autistic people become more like me, or more like others like me, to become more high-functioning. It can happen. I believe it.

There are about 100,000 people affected by some form of autism across Canada. When their parents received the diagnosis, immediately the research started looking for a treatment. They came across this ABA, applied behavioural analysis. It is the only evidence-based treatment that is available. The only drawback is that it is expensive. They cannot afford it. For that reason, they go to the respective provincial governments and try to get them to do it. It has not worked out the way they planned.

Autism is a life-long disorder. There is no cure. There are several treatments. Only one is evidence-based. There is no cure.

The key is early intervention, early diagnosis, and early detection. If treatment is started immediately upon diagnosis, or soon thereafter, within three or four years a child could enter school and perhaps not need ABA. He could go on, get a high school diploma, get university degrees, and be able to contribute to society.

I was pleased yesterday when I heard that the House of Commons had passed motion M-172, for a national autism strategy. I turned 36 yesterday. That news would rank up there with one of the best birthday presents I could receive.

The provinces worry about resources and having to live within their means. I understand the provinces have to live within their means. That is where the federal government comes in and helps out. If the federal and provincial governments put their heads together and work this thing out, a solution can be reached in the autism treatment situation we have in this country, in every province and territory.

There is a concern about having autism treatment funded under medicare. I am in favour of that. Ultimately, it is up to the provinces and territories. Each one has its respective medicare plan. Should any provinces decide not to fund this treatment under medicare, not only do I think they are making a mistake, I think they should find some place in their respective budgets to fund that treatment.

You also come to the issue of education. We need therapists certified in ABA. We need people in our schools trained to deliver ABA to autistic students. We need enough so that there are no waiting lists.

I have heard stories about people who have tried to get into speech and occupational therapy; some have told me were on a waiting list for months or years. Others are still on waiting lists. That is a problem that needs to be addressed and solved.

ABA is an expensive treatment. You have probably heard the figure $60,000 per year per child. It is derived from 52 weeks a year at 40 hours a week at $30 an hour.

Parents put themselves on the verge of bankruptcy when they have to pay for that treatment out of pocket. I certainly understand the situation they are in. I am amazed they can cover the treatment they need for their child and still pay the bills. How they do it, I do not know. Somehow, they get it done.

Early intervention, detection and diagnosis, can lead the way to a child's achieving his or her full potential, to become productive in society. If Ottawa and the provinces work together, we could have a solution.

As was mentioned, ABA is not perfect. According to studies, only 47 per cent of those tested were indistinguishable, but 47 per cent is a lot better than zero.

If provinces and the territories and the federal government all work together on this, it will lead to solutions. None of the world's problems was ever solved by arguing; none of the world's problems was ever solved by doing nothing; none of the world's problems was ever solved by worrying.

If Ottawa can get together with the provinces and territories and come away with a solution — and I am confident that they can; I am confident that they can accomplish this — just think of how many children will not be in group homes or institutions. Think of how many children will be able to contribute to society if they get this treatment. With the provinces and Ottawa working together, I know that can happen.

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Mr. Oldford: Yes, I was recommending federal leadership with the federal government and the provinces agreeing on something to fund evidence-based treatments. The bill that was passed yesterday talked about evidence-based standards. That is good. It talks about developing innovative funding methods, and that is good too. I read an explanation that said that that means that the provinces, territories and federal government discuss how to fund evidence-based treatment.

The only evidence-based treatment that currently exists is ABA, but there may be more to come. Judging by what I have read, I think that sooner rather than later ABA will have company in the evidence-based treatments category. If any other evidence-based treatments were to come up I would support those, too, especially if they cost less than ABA does.

The governments must agree on how to fund a treatment that is proven to be scientifically validated and evidence-based.

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Mr. Oldford: I agree with every word that Ms. Harrisson. I do not have any statistics on the number of adults that are autistic, that are in group homes or that are in institutions. I would say that a small number of autistic adults are in group homes or in institutions. I could be wrong, but I do not think there are that many.

When you read about autism, you read about autistic children. Autism is diagnosed during childhood. Some of the higher functioning types of autism can be diagnosed in adolescence or even adulthood.

Adults still need treatment. In the last session one of the things they discussed was age restrictions. I do not think there is any need to have them; they are discriminatory. Once a child turns five or six years old and still needs treatment, they should not be cut off. They should still get the treatment. If someone is diagnosed as an adult and needs treatment, they should get the treatment.

Getting back to housing, as I mentioned earlier, whoever works with autistic people in group homes and institutions has to have the proper training and has to know how to deal with autism. If they do not, it is not a good situation. There is also a need for proper housing for people with autism, not just in my home province of New Brunswick, but in every province across Canada.

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The Chairman: Do most people with ASD live at home with parents or do many live on their own?

Mr. Oldford: I would say a good number of them live with their parents. I lived with my parents until this past July when my brother and I bought a house. I would think that most autistic people do live at home.

That brings us to another issue: employment. When they become adults, most people with autism are either unemployed or underemployed, which is the reason they live with their parents or in group homes. They do not make enough money to be self-sufficient. It is a bad situation. That should be discussed, too, when they discuss the treatment issue.

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Senator Munson: There seem to be more and more diagnoses of autism; one in 166 is the new figure. With these diagnoses, we either pay now or later, and pay big later. We will have the statistics on homes like this if this keeps up this way. Do you agree?

Mr. Oldford: I would have to agree with that. I have heard people fighting for treatment telling the governments that, as you said, Senator Munson, the governments can pay now or pay later. We understand this treatment is expensive, but if you pay for it now, look at the return you will get on your investment. The people with autism will get out in the real world and get jobs, and that will stimulate the economy. Or you can pay later, which means they will go into group homes and it will cost the taxpayers a lot of money in the long run to keep them there.

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Mr. Oldford: We do need more autism awareness. As Mr. Hooker has mentioned, many people look at us as low-functioning people because they view autism that way. They see it on television and read about it in the papers. They think, "Boy, I am glad I do not have a child like that." Even in the most severe cases, autism is not the end of the world.

One way to promote awareness is through columns in newspapers and television appearances, as Mr. Hooker said. I would add that perhaps more people with autism spectrum disorder could be invited to speak at conferences. One of the measures that the government announced last week in its autism strategy was that there would be a national autism symposium next year. At that national symposium I would like nothing better than to see people with autism being invited to speak.

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Mr. Oldford: Education is required for teachers and employers. However, as for team work, people with autism prefer to work alone. Sometimes when you put people with autism into a team setting they can become a bit temperamental and a bit hot under the collar. It could be because the other team members do not agree with the suggestions, or for other reasons. On the school front, there have been stories about even the most high-functioning students becoming aggressive. It is not their nature but it happens when they are frustrated at not being able to communicate their feelings appropriately. In many cases, teachers will send those students to the principal's office, put them on detention, suspend them from school or send them home for the day, which is an inconvenience these days for parents because in most families, both parents work outside the home.

Employer and teacher education is needed when it comes to autism and how to deal with it. They need to know how to deal with situations that arise that could be caused by the autism.

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Mr. Oldford: Sometimes I do find myself in a situation of the type you mentioned. More often than not, it is advising parents of autistic children. Basically, all I give them is words of encouragement. I am in no position to tell them how to raise their children.

There is quite a large autistic population, even in a small province like New Brunswick. The only advice I give them is just do not give up the fight.