Autism Reality

Autism challenging for all

Autism challenging for all

Parents happy with province’s support, but want more.

By Tony Kiritsis

Published Thursday May 24th, 2007

Standing tall atop the jungle gym almost eye level with his father Todd, Ryan Downey paces back and forth with a smile on his face that comes and goes. Perhaps he’s unaware of the barking dogs running in the unkempt field behind him, their owner calling out commands. Or perhaps he doesn’t care, more concerned about how he will get down.

Just by looking at Ryan as he cautiously approaches the slide, toward Todd’s coaxing voice, it’s as if there’s nothing wrong. But, behind his blue eyes there’s something different about him and unlike other four-year olds his age, he can’t talk. If he could, he would probably tell you exactly what’s wrong.

Instead, he will pace around the room, his hands sometimes flapping, offering the impression he’s trying to master a one-handed clap.

At other times he rocks back and forth, his teeth biting down, slowly tearing a hole into the top right-hand shoulder of his shirt. Or he screams and cries because he’s scared and frustrated and needs to be heard.

Somewhere, in another part of the city, another lost voice is that of 22-year-old Christopher Hammel.

This docile individual can look intimidating when standing, towering at over six-feet tall. His expressionless stare can be mistaken for a look of displeasure, until he approaches you, raises his powerful hands and pats you on the shoulder.

Seated across from Christopher is his voice; his mother Karen. Like Ryan, Christopher is non-verbal. His frustration and pleasure reveal themselves through grunts, noises and the use of body language.

Ryan Downey and Christopher Hammel are only two of the multitude of children and adults in Canada who suffer from one of the many forms of autism. Autistic children face daily struggles well into adulthood, while their families fight on their behalf to provide the best possible life for their autistic children.

In Canada, roughly 1/165 people aged 0-19 have an Autism Spectrum Disorder (ASD). Adequate funding for services and the need to properly educate these children early in life are only two of the challenges that parents and the systems in place face.

“We thought it was the end of the world,” says Todd, when he and Tamara discovered Ryan was autistic.

Parents of autistic children face daily struggles that often leave them worn out. Not only must they contend with the emotional trauma, but also the financial instability.

“When your child is autistic it’s a fight you’re in for life. Some people do give up and I don’t criticize them,” says Harold Doherty, a local lawyer and autism activist.

Doherty has been fighting for better services on the part of his family, and others in the community.

Karen Hammel says she understands the strain that’s placed on the family. When she had Christopher diagnosed at the IWK Hospital in Halifax in 1986, doctors there told her she should institutionalize her son. Since then, she’s placed his needs first.

“We don’t eat out, we don’t go to movies,” says Karen. “House repairs haven’t been taken care of. We just go without things that most people don’t go without.”

Like many parents of children with disorders Todd and Tamara were in denial about Ryan’s condition. They blamed themselves for something they thought they could have prevented, when in fact they were doing everything they knew.

“We were pissed at ourselves for not picking up on it,” says Todd. “It was as if we failed as parents.” Autism is a disorder with one face but wearing multiple masks to conceal its identity.

Considered a spectrum disorder, those diagnosed fall upon a scale and are assessed based on the severity of their symptoms.

Children born with an ASD tend to avoid social interaction with other people. They lack communication skills and engage in excessive repetitive stereotypical behaviours called stimming.

Since the diagnosis the Downey’s have found support in Fredericton’s autistic community through the Autism Society of New Brunswick and Autism Intervention Services, a local centre where Ryan receives therapy.

It’s here, amidst the maze of cubicles that reminds one of an office building, where behind the grey dividers you would expect to find a middle-aged man hunched over a computer busy typing, pictures of his wife and kids pinned to the board above his desk.

Yet there are no desks, nor are there any middle-aged men hard at work behind those dividers. But there are kids back there, kids like Ryan.

Child psychologist Paul McDonnell, who diagnosed Ryan, says that therapy is by no means a cure, because the word cure demotes an absolute result. Instead, McDonnell says people will say this child will become indistinguishable from other children.

When the centre’s current location opened in May of 2006, program director Danielle Pelletier says they only anticipated 30 children but now have over 50 children receiving treatment.

Since most children are diagnosed after the age of two, it allows them three to four years of provincially funded therapy. The key to helping children with an ASD is to intervene early.

The centre practices applied behavioural analysis therapy (ABA), a repetitive process by which tasks are broken down into smaller steps. As the child learns each step he can combine them into one complete task.

In New Brunswick, pre-school aged children receive 20 hours of government funded therapy each week through the Department of Family and Community Services. Other Canadian provinces like Alberta will fund autistic children until they reach 18.

“It pretty much seems that 20 hours a week is rock bottom,” Dr. McDonnell says. “Research pretty consistently shows that over 25 hours and especially over 30 hours, will give you much better results.” Sheila Bulmer, provincial program advisor with the Early Childhood and School Based Services Branch with Family and Community Services says, “We came up with 20 hours, and obviously that’s at the lower end, but the other monies and services that children can tap into is what we call integrated daycare.” Bulmer says parent involvement at home also contributes to the child’s therapy and learning.

Although parents will do all they can to provide extra therapy and learning for their children, the bottom line is they aren’t trained therapists.

“It turns out New Brunswick is a good place to be if your child has autism, especially the Fredericton area,” says Todd. “We’ve seen serious improvement and that makes us happy.” The therapy Ryan and other children his age receive may be adequate, but more could always be done.

“You do the intensive intervention up front because that’s where you’re guaranteed to get the most improvement and the most change,” Bulmer says.

The money the Downey’s receive goes directly to Autism Intervention Services to cover an array of costs including the therapy. Yet all this money is still not enough.

Hundreds of dollars are spent on new toys for new therapies and because Ryan requires around the clock supervision, Todd has become his primary caregiver giving up his career.

“We’ve already cashed in some retirement money to help him and we’ll probably have to cash more,” says Tamara.

Early intervention is meant to aid autistic children in order they be integrated into society with the hope that someday, they will be able to live semi-independent lives.

“I’m most worried about the school system,” Todd says. “I think he’s going to be ready for school, but is the school going to be ready for him?”

Harold Doherty believes the system isn’t prepared to handle these students and changes need to be made. “The system says teachers teach and that’s it.”

Each year approximately 40-50 new students with ASD will enter the English sector school system in New Brunswick. This number is high considering last year, roughly 24 students with an autism spectrum disorder graduated or phased out of the system at age 21.

With nine Anglophone and five Francophone districts, the English and French sectors combined have approximately 900 students with ASD from kindergarten to grade 12 province wide.

Stephanie Allen-Holt, a learning specialist with the Department of Education for students with autism spectrum disorder, says over the last two years her department has been trying to increase the capacity for specialists that can work specifically and directly with autistic children.

Allen-Holt says one of the recommendations from the Liberal platform was to train teacher assistants through the University of New Brunswick’s College of Extended Learning with autism support worker training. This called for 100 trained teacher assistants each year over four years.

“What’s the cost going to be when you have a child that’s not appropriately educated? You’re putting money into teaching them pre-school and when they go to school, if that support isn’t continued, there’s actually the chance some kids could digress,” Tamara says.

New Brunswick’s Minister of Education, Kelly Lamrock says his department will begin the training as soon as possible.

“If it’s at all possible to do in September, we will, trust me. That will be the first spending order I give for the new budget year,” says Lamrock.

As parents like the Downeys fight for their son’s well-being, the outcome is to provide a better quality of life for the future. For parents like Karen this is now the fight.

“The cost down the road is immense for the government if they want to look at cost and numbers and dollars. To take care of someone who can’t independently, or somewhat independently function and become a part of society, that cost is huge. Pay now, or pay a lot later,” Tamara says.

Karen has fought to give Christopher similar if not equal opportunities in life, but says while society is accepting and including, they aren’t integrating. She has taken it upon herself to integrate her son into society.

Two afternoons every week, Christopher walks through the glass paneled doors at the Greco on Dundonald Street in Fredericton, to the greetings of fellow employees. He comes to build boxes that will end up at doors of residents in the city.

As his strong hands gently assemble the malleable puzzle like cardboard cut-out pieces, the ability to hold down a job shows with enough help, there may be nothing he can’t achieve.

“For older individuals the need is proper residential care,” says Doherty. “Unless you can care for your child, you have to place them in a group home.”

Karen has no inclination of placing her son in a home any time soon if she can help it. Parents like the Downeys hope one day they will not have to make that choice.

“Someday it would be nice if adults with autism had some type of program that would be available to them and their families,” says Pelletier. While Family and Community Services’ long-term care plan provides Christopher with a care worker and a disability pension, it’s still not enough.

“I’m currently fighting to get clinical supervision covered,” Karen says. The cost for this service is approximately $10,000 a year.

As it stands, the Department of Family and Community Services and the Department of Health and Wellness won’t cover clinical supervision because it’s considered an indirect service.

Exhausting all her governmental avenues, if a resolution isn’t achieved, Karen feels she has no alternative but to file a human rights complaint, as she believes her son is being discriminated against.

The Downey’s have wrestled and settled with a lot in a short period of time, even though they’re in the early stages of the fight for Ryan’s future.

“We’ve come to terms that this is how it’s going to be,” Todd says. “I’ve come to terms that I’m probably not going to have a career. We’ve come to terms that we aren’t having another child.”

The intervention Ryan began months ago has yielded an improvement . He has begun to interact with other children at the centre and is able to be in public spaces like the mall with minimal incidents.

Karen knows she will always be fighting for Christopher. One day she won’t be able to take care of him anymore and wonders what will happen to him in the future.

“No matter what it is you’re looking for, you always just have to keep repeating and repeating it to the government. After a while…you feel so beaten down,” Karen says.

The future for children like Ryan appears optimistic. Programs and services to aid autistic children in their youth have improved, but have a long way to go.

The future for adults like Christopher would be bleak, if it weren’t for the determination of parents like Karen, who are currently laying the groundwork for the next generation.

http://www.canadaeast.com/ce2/hereroot/index.php?paper=here

May 25, 2007 Posted by | aba, adult care, autism, Autism Connections Fredericton, Autism Society New Brunswick, education, Paul McDonnell, UNB-CEL Autism Intervention Training Program | Leave a comment

Autism Youth and Adult Residential Care & Treatment Still Abysmal in New Brunswick



In October 2005 the Toronto Star reported on the case of a New Brunswick autistic youth who was being housed by the Province of New Brunswick on the gounds of a youth correctional facility. The youth had committed no crime. The state of New Brunswick’s youth and adult residential care and treatment facilities was so bad, virtually non-existent for those with more severe and challenging autism disorder, that the province felt it was the only place that could accommodate the youth while they waited for his admission to a facility in the United States. The Toronto Star article follows this comment. Unfortunately, as the letter from Stephen Robbins posted here a couple of days ago indicates things have not improved any since then. In New Brunswick we must still export our autistic youths and adults out of the country for decent residential care and treatment.

From a personal perspective this issue weighs heavily on my mind. My son Conor was 9 at the time of the first story. He is now 11 and nearing the age of the two youths in these stories. In the meantime youth and adult residential care and treatment in New Brunswick have not moved a single steop forward. The bureaucracy does what the bureaucracy always does. It delays, it denies that problems exist, it worries about the careers of its members and whether they might be embarassed but it takes no significant action on critical issues affecting some of New Brunswick’s vulnerable members.

Autistic boy kept in New Brunswick jail

No other place for him to stay 13-year-old must go to U.S. hospitalNo other place for him to stay

13-year-old must go to U.S. hospital

The Toronto Star, KELLY TOUGHILL, ATLANTIC CANADA BUREAU, Oct. 19, 2005

HALIFAX—A 13-year-old autistic boy now living in a New Brunswick jail compound will be sent out of Canada because there is no home, hospital or institution that can handle him in his own province.

Provincial officials confirmed yesterday the boy is living in a visitor’s apartment at the Miramichi Youth Centre and will be moved to a treatment centre in Maine by November.

They stressed he is not under lock and key, has no contact with other inmates and is living outside the high wire fence that surrounds the youth detention centre.

Nevertheless, the jailhouse placement and the transfer to Maine have outraged mental health advocates and opposition critics.

“They put this boy in a criminal facility because he is autistic,” said Harold Doherty, a board member of the Autism Society of New Brunswick.

“Now we are exporting our children because we can’t care for them. This is Canada, not a Third World country.

“We are supposed to have a decent standard of care for the sick and the vulnerable, but we don’t.”

Liberal MLA John Foran echoed his concern. “This boy has done nothing wrong, is not the subject of any court order, but is in a penal institution.”

Provincial officials yesterday insisted critics are misrepresenting the nature of the boy’s situation and that in fact the province has done everything it can to help him.

“This individual is not being held, and is not incarcerated,” said Lori-Jean Johnson, spokeswoman for the family and community services department.

“He has housekeeping, bath and a separate entrance. We are just utilizing existing resources.”

Privacy laws prevent officials from discussing anything that would reveal the boy’s identity, including details of his previous living situation and the whereabouts of his parents.

This much is known: He suffers from a severe form of autism and is a ward of the state, under the guardianship of the minister of family and community services. He was living in a group home until recently, but became so violent that he was judged a danger to himself and others. At a psychologist’s recommendation, he was moved to a three-bedroom apartment on the grounds of the Miramichi Youth Centre, a prison for about 50 young offenders. Two attendants from a private company watch the boy around the clock, at a cost to taxpayers of $700 a day.

Johnson said she does not know any details of his care.

Doherty said the jailhouse placement and move to Maine highlight the desperate need for better services for autistic children in New Brunswick and across Canada.

He said staff at most group homes in New Brunswick aren’t trained to deal with autism and don’t understand the disorder.

“If you don’t understand autism, things can become very bad very quickly,” said Doherty, who has a 9-year-old son with the disorder.

“We have been pushing for (better facilities) in New Brunswick for several years. This is not a crisis that has popped up in the last two days. Residential care is a critical element for these people and it is not being provided.”

Johnson said the provincial system of group homes and institutions that care for children and adults with psychiatric disorders and mental disabilities works for most people.

“We do have existing resources, but once in a while, there will be an exception. Here, we are looking at a very extreme case.”

The boy will be moved to an Augusta, Me., treatment centre at the end of the month, said Johnson.

The centre, run by a non-profit group called Spurwink, specializes in dealing with autistic adolescents.

A Spurwink representative did not return a phone call from the Toronto Star.

Provincial officials could not detail the cost to keep the child at Spurwink, nor did they have information about why he’s being sent to Maine, rather than a Canadian facility in another province. “

….

Keep autistic children in the province

Daily Gleaner (Fredericton NB)

Published Wednesday May 23rd, 2007
Appeared on page C7

This is a letter to Premier Shawn Graham.

I am a father of a 13-year-old autistic boy. We had to fight for services for our son from the day he was born: to get diagnosed, to get Applied Behavioural Analysis therapy (before it was mandatory), to get teacher’s aides in the classroom, to keep him in school, and to get hospital treatment when his compulsion to bite and pinch got to the point where he was covered in wounds and bruises.

I am afraid my wife and I do not have much fight left in us these days. Our son has lived under constant supervision 24 hours a day for the last year. Two workers stay in our home with him during the day (two are needed to restrain him during his rages). While we commend them for all they have done, the workers are merely a Band-Aid solution.

Our only option at this point is to send our son out of country to the U.S. for treatment that he desperately needs.

Services at the two facilities, in Maine or Boston, will cost the government $200,000 to $300,000 a year. Right now my son is costing the government $15,000 to $20,000 a month because of the government’s lack of direction when it comes to older autistic children.

My question to you, Mr. Graham, is that it may have been cost effective at one time to send these children away (out of sight, out of mind). But now with it being 1 in 150 children being diagnosed within the autism spectrum disorder, maybe we should re-evaluate the direction our province is going in.

I realize that there may be no other recourse for my son but to be sent to these facilities in the U.S. for treatment.

I hope in the future we may be able to prevent our children from having to leave Canada to get the services they so desperately need.

Stephen Robbins

Woodstock, N.B.

May 25, 2007 Posted by | adult autism, autism disorder, autism residential care, Autism Society New Brunswick, autism treatment, Spurwink | 3 Comments

Autism Symposium Cancelled – Harper’s Book of Dirty Tricks Page 2

The Harper Conservative government strategy to address the Autism health crisis in Canada is beyond pathetic; it is wretched. It is nothing more than a ploy from the now infamous Conservative Party Book of Dirty Tricks.

The Harper Conservatives’ autism strategy was announced in November 2006 by Health Minister Tony Clement and consisted of a web page and a stakeholder symposium to be held in 2007. Yes there were other elements – sort of. A research chair was mentioned – sort of. The Harper conservatives pledged to begin exploring the establishment of a research chair focusing on effective treatment and intervention for ASD. They also pledged to launch a consultation process on the feasibility of developing an ASD surveillance program through the Public Health Agency of Canada (PHAC) to help shape appropriate ASD programming and research. I wonder which generation of Canadians will be around to see whether an ASD surveillance program, whatever that is, is determined to be feasible?

Of course there is the pledge to address Canada’s autism health crisis by designating a bureaucracy within a bureacracy, the pledge to designate the Health Policy Branch of Health Canada as the ASD lead for actions related to ASD at the Federal Health Portfolio level. Health Canada itself of course is the federal government Department charged with responsibility over health matters which the Harper Conservatives tell us [ignoring the development over decades of cooperative federalism] is a matter entirely within provincial constitutional jurisdiction. Gee, the policy branch of the federal department responsible for a matter which the Conservatives claim is entirely within provincial jurisdiction will be designated as the lead branch of that department for actions related to ASD at the federal level. WOW!!

Then there is the autism web site promised by Health Minister Clement. Personally I believe it to be the least informative autism site on the internet. But that may be a bit harsh. There may be autism web sites that are still “under construction” and actually say nothing at all. Judge for yourself:

http://www.hc-sc.gc.ca/dc-ma/autism/index_e.html

Then there is the “stakeholders” symposium promised to be held in 2007. As one who has been an autism activist for the last 8 years in New Brunswick I recoil at the use of the word “stakeholder”. It sounds like a property interest in a commercial transaction. I am an autism activist because of my profoundly autistic son. He, with his brother, are the joys of our life but they are not “stakes” in a poker game. And government typically defines the stakeholder concept broadly to include any group that might be useful in pushing the government’s own agenda. Careful selection of a few stakeholder groups for government funding and support invariably results in useful tools for creating division and weakness in the disability community whose issues are being addressed, allowing government to divide, delay and deny provision of necessary services.

I was asked by the Autism Society New Brunswick to participate as the ASNB representative at the autism stakeholders symposium which was scheduled to take place mid-June 2007 in Ottawa. I contacted the Canadian Institute for Health Research to register for the event and was told that the federal government wanted the Autism Society Canada, the federal organization of which ANSB is a member, to forward the names of participants for the autism symposium. Thus the provincial body, the ASNB, could not forward names directly of representatives for a national symposium to address an issue which, according to Stephen Harper, Tony Clement and Edmonton area MP Mike “Bigfoot” Lake [Conservative Party autism spokesman and Autism Dad]is entirely within provincial jurisdiction. The Autism Society Canada put my name forward at the request of ASNB and I waited to receive my invitation. I had been told the invitations would be sent out two weeks ago. When I followed up last week I was informed by CIHR that the symposium was being discussed at a more senior level and that so many names were put forward that it was necessary to arrange a new larger location. In the meantime I had become aware that prominent, no nonsense autism activists like Andrew Kavchak in Ottawa and the FEAT-BC folks had also been put forward as participants in the national autism stakeholders symposium. Last week it was formally announced that the symposium was “postponed” to an unspecified date in the fall.

I do not believe the excuse that the Government of Canada could not find a large enough room to accommodate a national symposium of autism representatives by mid-June. The federal government is THE consumer of services for such activities in the National Capital Region and has a lot of purchasing/bargaining power. There is a substantial industry in the region which thrives on hosting such events and the capacity has been developed for these purposes. The federal government itself owns a good chunk of the national capital real estate and surely has the facility to itself host a symposium.

The Harper Conservative government became increasingly aware that activists such as yours truly, Andrew Kavchak, some FEAT-BC reps, and some of the family members involved in the Auton and Deskin-Wynberg autism cases were coming to Ottawa to participate in the national autism symposium and they wanted no part of it. That is the more plausible explanation for the postponement/cancellation of the symposium. The whole national autism “strategy” could have been lifted from page 1 of the Harper Book of Dirty Tricks recently exposed and which directs Conservative MP’s to to obstruct the progress of parliamentary committees, including stacking such commitee proceedings with witnesses who would support the Harper Conservatives’ agenda. The page was turned to page 2 when the only pledge of any merit, the national autism stakeholders symposium was “postponed” until the fall of 2007. IF the symposium does proceed in the fall you can be sure that every effort will be made by the party of Harper and Clement to ensure that the voices of serious autism activists will not be present and will not be heard. As dictated in Harper’s Book of Dirty Tricks only sponsored, docile autism representatives supportive of the Conservative Party agenda will be invited. … Continued on Page 3, Harper’s Book of Dirty Tricks.

May 20, 2007 Posted by | autism disorder, Autism Society Canada, Autism Society New Brunswick, CIHR, Dirty Tricks, FEAT, national autim strategy, Prime Minister Harper, Tony Clement | Leave a comment

Autism Resources in New Brunswick – Chatham Library Hosts Launch of Autism Collection


Chatham Library Hosts Launch of Autism Collection

Miramichi Weekend, Friday, May 11 2007

Representatives of Chatham Branch of the York Public Library, the New Brunswick Public Library Service and the New Brunswick Public Library Foundations gathered at a reception at the Chatham Branch on May 2 to launch a collection of resource books specific to Autism Disorder.

The president of the New Brunswick Autism Society Lila Barry made the presentation of books in honour of her mother-in-law, Emma “Big Momma” Barry.

She thanked the family members of Emma Barry in attendance for their generous donations that made the collection possible. Emma Barry was known for her love of all children but held children with special needs even closer to her heart.

In a disorder in which early detection and treatment is vital to the success of a child with Autism, parents are often desperate for information. Current statistics indicate that 1 in every 150 children will be on the Autism Spectrum. Resources are vital to successful outcome.

Six years ago, Barry’s son was diagnosed with Asperger’s syndrome, one disorder on the spectrum of Autism.

“I remember being so overwhelmed and distraught. One of the first places I sought was information at this library, but I was devastated to find no books here, and only two or three within the system in high demand and available only after a long wait. “

After joining the Autism Society of New Brunswick, she and others in the organization created a vision to provide better support for families with better resources and approached the New Brunswick Public Library Service with the idea of donating a collection of resource books.

This donation, the second of two to the New Brunswick Libraries Foundation from the Autism society, now brings the collection to 68 books. The monetary value of this gift was matched by the New Brunswick Library Foundation.

At the launch, Dr. Theresa McKenzie, a licensed psychologist and specialist in this disorder, stressed the importance of this donation. With wait times as they are, parents concerned about some of their children’s developmental behaviours need resources to provide strategies for coping at home and developing social skills. Often their concerns are dismissed but parents know their children best and need accessible resources.”

This collection will be housed at the Chatham Branch of the York Library Service but all New Brunswickers with interest or concerns about Autism Spectrum Disorders can access the books by inter-branch loans

May 15, 2007 Posted by | autism awareness, autism disorder, Autism Society New Brunswick, chatham public library, Dr. Theresa McKenzie, lila barry | Leave a comment

Autism, Vaccines & the Spread of Mumps – Eastern Canada

The belief that some vaccines, or mercury based vaccine preservatives, cause or contribute to today’s increasing autism rates, now estimated at 1 in 150, persists despite an almost total lack of support in the scientific community for any causal connection. The fear generated by that belief is itself believed to have contributed to higher rates of vaccine refusals with resulting increases in diseases such as measles and mumps. In Atlantic Canada we are currently suffering an outbreak of mumps, with the particular strain of mumps having orginated in the UK where immunization rates dropped from fear that the measles-mumps-rubella vaccine caused autism.

Health: ALERT: INFECTIONS

Mumps outbreak spreads

CAROLINE ALPHONSO

May 11, 2007

Nova Scotia’s mumps outbreak has spread to Ontario, infecting five people so far and putting public-health officials in the province on alert for even more cases in the weeks to come.

The latest outbreak indicates that many who were vaccinated years ago are now susceptible to catching the disease. Public-health officials are now debating whether they need to administer a booster shot.

Ontario’s Ministry of Health and Long-Term Care confirmed yesterday that the cases, two of which are in Toronto, are linked to the outbreak in Nova Scotia, where more than 200 people have been infected by the disease. The outbreak, which began in late February, has also infected 34 people in New Brunswick and one in Prince Edward Island.

Neil Rau, an infectious disease specialist at Halton Healthcare Services in Ontario, said the current strain of mumps originated in Britain, where there was a large outbreak in 2004. Immunization rates had drop significantly in Britain because many people believed the measles-mumps-rubella vaccine caused autism. The vaccine-autism link has since been disproved, he noted.

The disease reached Iowa last year, and Dr. Rau said it has now found its way into Canada.

“It’s global travel compounded with vaccine refusal,” he said.

http://tinyurl.com/3b49fz

May 13, 2007 Posted by | autism disorder, autism rates, Autism Society New Brunswick, measles, MMR, mumps, Nova Scotia, rubella, thimerosal, vaccines | 2 Comments

Shawn Graham’s Autism Promise – A Promise Kept


[Above Premier Shawn Graham; Premier Graham, MP Andy Scott, Autism Connexions director Lana Thomson and some young helpers at the Autism Connexions grand opening]

Since the election of the Shawn Graham led Liberal Party as the government of New Brunswick in September I have made several different comments on the subject of Premier Graham’s autism training promise that he made during the election campaign. The tone and substance of my comments varied depending on other developments that were taking place. During the campaign Mr. Graham promised that a Liberal government would train 100 Teachers Aides and Resource Teachers a year for 4 years at the UNB-CEL Autism Intervention Training program. The Autism Society New Brunswick has trust and confidence in the quality and integrity of the UNB-CEL AIT program. Fulfillment of this commitment will place New Brunswick in the forefront of delivery of real education services to our autistic students.

Despite Mr. Graham’s well known commitment there was continued resistance by some officials responsible for oversight and delivery of such programs. In the last two weeks that resistance reached a previously unimaginable ferocity with an alternative proposal still being pushed very aggressively by some civil servants. The alternative proposal was, putting it politely, fundamentally flawed. Fortunately, Premier Shawn Graham and Education Minister Kelly Lamrock stepped in and confirmed beyond any doubt that the 400 in 4 years UNB-CEL AIT training commitment for TA’s and Resource Teachers would be implemented. Yesterday I participated in a Dialogue on Education Committee meeting with other “stakeholder” representatives and Education Department officials at which that commitment was confirmed with the first 100 persons expected to begin the course in October.

I am very happy that Premier Graham is keeping his autism promise and implementing the training commitment he made on behalf of autistic students in New Brunswick. In some provinces opposition leaders made promises to autism parent advocates and then abandoned those promises and used the power of government to fight the very parents and their autistic children they had promised to help. During his time as opposition leader in New Brunswick Shawn Graham stood with those of us who were protesting outside the New Brunswick legislature seeking evidence based autism interventions for out children and lent his voice and support. In government Premier Graham has not abandoned us. He has kept his word. He is honouring his commitment.

Thank you Premier Graham.

May 12, 2007 Posted by | autism disorder, autism education, Autism Society New Brunswick, election promises, Kelly Lamrock, Shawn Graham, teachers aides, UNB-CEL Autism Intervention Training Program | Leave a comment

Residential Care, Treatment, Needed for New Brunswick Autistic Youths, Adults


In New Brunswick much progress has been made for pre-school autistic children. Some funding is now available for evidence based autism interventions and agencies have been established, and measures implemented, to provide accountability in delivery of intervention services. Improvements are also starting to be made to provide autism trained teacher assistants and resource teachers to provide autistic school children with a real education. But for youths and adults with autism who are in need of decent, competent residential care and treatment nothing has changed since the fall of 2005. That was when Canada became aware that New Brunswick is so lacking in residential facilites with properly trained personnel and in treatment for autistic youths and adults that we truly literally house some of our autistic residents on the grounds of penal institutions. There has been a provincial election in the period since 2005 and a new governing team is just now getting its full grip on the reins of power. Nonetheless the time is long overdue for New Brunswick to start providing decent residential care and treatment for its autistic youths and adults – right here in New Brunswick.

Autistic boy kept in New Brunswick jail

No other place for him to stay

13-year-old must go to U.S. hospital

The Toronto Star, KELLY TOUGHILL, ATLANTIC CANADA BUREAU, Oct. 19, 2005

HALIFAX—A 13-year-old autistic boy now living in a New Brunswick jail compound will be sent out of Canada because there is no home, hospital or institution that can handle him in his own province.

Provincial officials confirmed yesterday the boy is living in a visitor’s apartment at the Miramichi Youth Centre and will be moved to a treatment centre in Maine by November.

They stressed he is not under lock and key, has no contact with other inmates and is living outside the high wire fence that surrounds the youth detention centre.

Nevertheless, the jailhouse placement and the transfer to Maine have outraged mental health advocates and opposition critics.

“They put this boy in a criminal facility because he is autistic,” said Harold Doherty, a board member of the Autism Society of New Brunswick.

“Now we are exporting our children because we can’t care for them. This is Canada, not a Third World country.

“We are supposed to have a decent standard of care for the sick and the vulnerable, but we don’t.”

Liberal MLA John Foran echoed his concern. “This boy has done nothing wrong, is not the subject of any court order, but is in a penal institution.” ……..

http://www.canadiancrc.com/articles/Tor_Star_Autistic_boy_kept_NB_jail_19OCT05.htm

April 16, 2007 Posted by | adult residential care, autism disorder, Autism Society New Brunswick, autism treatment, jail, John Foran, Toronto Star | Leave a comment

New Brunswick’s Autism Progress

When my son Conor was diagnosed with an autism spectrum disorder (Initially PDD-NOS, subsequently changed to Autism Disorder) nine years ago our home province of New Brunswick had virtually no autism specific services. Much has changed since then – for the better. And much more desperately needs to be done.

Eight years ago an interdepartmental committee comprised of representatives of the Departments of Education, Family Services and Health and various community “stakeholders” examined the services available and, after approximately 18 months issued a report in late 2001 (the IDC Report) which confirmed what we already knew – there were very few autism specific services available in New Brunswick. There was no government funding for preschool autism treatments, there were no autism trained teachers, or teachers aides, working in New Brunswick schools, the place everyone in the mainstream classroom philosophy which has dominated NB schools did not provide for the accommodation of autistic students in a continuum of learning environments, there were few living accommodations suitable for autistic youths and adults and there were no treatment facilities offering autism specific in residence treatment. Then almost one full year after the release of the IDC report, and its timid recommendations for evidence based autism specific services, the lead minister on the “autism file”, Health Minister Elvy Robichaud admitted to a New Brunswick reporter that he had not yet read the IDC Autism Report, that he had “too much on his plate” and would get to the report later. Many parents of autistic children in New Brunswick were disgusted and galvanized into action. Our trust in the good will of government leaders was shattered and things would never be the same again.

Protests were held at the New Brunswick legislature and government buildings housing the offices of civil servants in the Departments of Education, Family Services and Health. Letter writing campaigns, radio and television interviews and public announcements were made and meetings resulted with cabinet ministers and senior civil servants. On April 1, 2003 Health Minister Robichaud announced that $2.1 Million dollars would be made available for a variety of autism related projects, a modest start but a start nonetheless. Then more procrastination and delay as the government took many more months before announcing that funding for evidence based interventions for autistic children aged 2-5 would be provided to a maximum of approximately $17,000,00 per year. After a long period of many months during which funds, treatments, development time and hope were spent in the absence of any system of accreditation and accountability an agency system was established to ensure reliability and accountability in provision of autism interventions.Training of Autism Support Workers and Clinical Supervisors was provided through the UNB-CEL Autism Intervention Training Program, both developments spurred on by parental agitation and advocacy.

The school system remained resistant to calls for change. The Autism Society New Brunswick enjoyed a nominal place at the table for such events as the Department of Education’s Anglophone side Dialogue on Education Committee. ASNB input though carried substantially little weight with the Department’s bureaucracy. But parents kept agitating and lobbying and some Teachers’ Aides and Resource Teachers working with autistic students have begun to receive autism specific training at the UNB-CEL AIT program and the current government has committed to training 400 more over the next four years.

The Mackay Report on inclusion in New Brunswick schools was largely a disappointment in its discussion and recommendations for autism. Its discussion of autism itself was minimal and shallow. Mr. MacKay’s recommendations for training required timelines of 3-5 years before autism specific training would even begin for teachers aides and resource teachers. The process leading up to Mr. MacKay’s report though did give the Autism Society an opportunity to speak directly to other stakeholders and parents and to engage department and school district officials in frank, if sometimes unwanted, discussion about the place of autistic students in New Brunswick schools. The philosophy of mainstream classroom inclusion for all had already been losing ground in face of the reality that some autistic children learned better and were not as likely to be overwhelmed in a quieter location outside the mainstream classroom. Social activity and interaction can be scheduled when appropriate to the autistic students capabilities and needs. But the MacKay review process allowed the ASNB to voice its concerns for evidence based child centered education directly to top school, district and department officials. It now appears likely that the Mackay timelines will not be adopted by the Department. The action to improve the educational opportunities for autistic school children is taking place now, not 3-5 years down the road as Wayne MacKay had recommended.

One of the bright lights on the autism scene in New Brunswick dimmed when it was announced that the Stan Cassidy Rehab centre would discontinue its pediatric tertiary care services for autistic children in New Brunswick. The Stan Cassidy had done outstanding work for autistic children with complex issues. The impending loss of its services would have been a devastating loss. Fortunately, the decision was reversed with ASNB and parents playing a substantial role in that decision and with the efforts of people such as Dr. Ron Harris and Dr. Rob Leckey at the Centre, Ken Ross the Assistant Deputy Minister for Mental Health services, and then Health Minister Brad Green. A new pediatric tertiary care team for autism services is now being assembled at the Stan Cassidy’s new location on the grounds adjacent to the Chalmers Hospital in Fredericton.

The progress in pre-school intervention and education of autistic school children is not perfect but it is light years ahead of where we started as parent advocates 8 years ago. Now though a huge challenge remains, a black hole which absorbs the lives of autistic youths and adults in New Brunswick. Like many mental health disorders there is little available in the way of decent residential care and treatment for autistic youths and adults. There are group homes in various locations in New Brunswick but the staff, by and large, has no autism specific training. These youths and adults enjoy very little in the way of a quality of life. They are in essence being kept in custody for safety reasons but receive little of the life experiences that most of us take for granted. Frustrations and confrontation with poorly trained staff result in autistic youths ending up in court on assault charges. Treatment facilities dedicated to autism do not exist in New Brunswick and there are very few professionals who are capable of providing the treatment needed by autistic youths and adults .

The abysmal state of youth and adult residential care and treatment in New Brunswick is a disgrace, a black mark against our province in its treatment of autistic persons. There has been much progress in preschool and school services for New Brunswick autistic persons. The battle to help our autistic youths and adults receive decent residential care and treatment must begin and it must begin now.

March 12, 2007 Posted by | autism disorder, autism education, Autism Society New Brunswick, autism treatment | 2 Comments

Ontario Schools Ordered to Make ABA Available for Autistic Students

In Ontario all schools have been ordered to make Applied Behavior Analysis “ABA”, available for autistic students by September 2007. To date ABA is the only intervention for treating and educating autistic children which is widely endorsed as evidence based and effective. It is not clear at this time how properly trained personnel will be made available in that time span to meet the Ontario requirement but hopefully that order will be implemented properly and the province does not back off of that commitment.

In New Brunswick, after years of parent advocacy, schools have already begun providing ABA services to autistic students in a few cases and commitments to provide training to teachers aides through the UNB-CEL Autism Intervention Training program have been made and confirmed. Parents of autistic children seeking to help their children have been misled before and will have to remain vigilant to ensure the commitments are met but the education commitments made in Ontario and New Brunswick are encouraging news for parents of autistic children in the two provinces.

TORONTO — School boards across Ontario are being served notice that they must be able to provide specialized autism treatment in classrooms, ideally by September, Education Minister Kathleen Wynne said yesterday.

Currently, parents of autistic children are often forced to choose between keeping their kids at home to receive expensive Applied Behaviour Analysis therapy or taking them to school, where they don’t receive the costly special treatment.

Those days will soon be over, since the government is issuing a directive to school boards that they won’t be able to ignore, Wynne said.

“We will be making sure that it happens and we will be putting supports in place,” said Wynne, who was unable to say how much the new policy would cost.

“There are many places in the province where this is already happening, but it has to be even across the province.”

The goal is to have the treatment standardized in schools across the province in time for the next school year, although there’s no guarantee that will happen on schedule, she added.

“Will there be places where there will still be work to do? Absolutely,” Wynne said.

“I can’t say that exactly the same thing will be happening in every classroom in all of the 5,000 schools across the province on the day after Labour Day, but absolutely it’s a goal to have a uniform understanding and delivery of that approach across the province — as soon as possible.”

The government’s announcement came in response to a newly released report by a panel of stakeholders, which made 34 recommendations on how to help Ontario’s autistic schoolchildren.

Advocates said they’re thrilled the government has agreed to immediately address 23 of the 34 recommendations and also to review the rest.

Getting ABA treatment in all schools would be an amazing development, but it’s equally important the government has committed to act on so many other recommendations, which will help a wide range of kids with different issues, said Karyn Dumble of Autism Ontario.

“It’s re-enforcing what we already know, that there’s many ways to teach so that students with autism will learn and this is something that our parents across this province have been advocating for,” she said.

Some parents, however, said the plan doesn’t help their children, who are still too young to go to school and caught on long waiting lists for subsidized treatment.

Friends of Lianne Crawford, whose three-year-old son is autistic, launched the website helpjack.ca to raise money for treatment, which costs $70,000 a year. The website has raised about $15,000.

“We get no government money and we’ll never see any funding unless something changes drastically (in government policy),” Crawford said.

Prior to the government’s announcement yesterday, Ontario Conservative Leader John Tory unveiled a campaign platform for autism funding that includes $75 million a year to cut the waiting list for treatment of kids under six.

The government’s new plan does some good, but doesn’t address the waiting list, Tory said.

“I’m not saying the things the government (plans) are wrong or shouldn’t be addressed, but I’m saying I think (we’re trying) to address the really big issues.

“We are in the fourth year of this government’s mandate, with an election six months away, and the government’s making that promise again.”

Laurel Gibbons, mother of a nine-year-old son with autism, said she, too, is skeptical.

“The school boards are going to need more time than six months in order to implement such a strategy,” she said. “Where are they getting the people that are going to be trained for this? What’s the hiring process?”

http://lfpress.ca/newsstand/CityandRegion/2007/02/24/3661247-sun.html

February 24, 2007 Posted by | aba, Applied Behavior Analysis, autism disorder, autism education, Autism Society New Brunswick, Kathleen Wynne, Ontario, schools | Leave a comment

Full Classroom Inclusion for All is Discriminatory

Yude Henteleff QC is a distinguished lawyer and human rights expert whose detailed resume would represent a life time of accomplishment for several individuals. He is a founding member of a prominent law firm, has been legal counsel for Autism and Learning Disability Associations, been active as a mediator in human rights disputes, served on the Canadian Human Rights Commission and named to the Order of Canada. In November, 2004 he presented a paper at the Canadian Association for Community Living National Summit on Inclusive Education, Ottawa in which he asked “why full inclusion is being advanced in certain areas as the only way to effectively meet the diverse needs of all children with special needs.” Mr. Henteleff provided a number of reasons for the emphasis on full classroom inclusion – including government cost consciousness. Full classroom inclusion is cheaper than providing a continuum of choices to accommodate all the needs of individual students with various disabilities. Mr. Henteleff also reviewed Supreme Court of Canada decisions in Law, Granovsky, Mercier and Eaton and concluded that “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,”

Henteleff, Y. (2004). The fully inclusive classroom is only one of the right ways to meet the best interests of the special needs child. Paper presented at the CACL National Summit on
Inclusive Education, Ottawa, Ontario.

As the parent of a profoundly autistic 11 year old son I concur with Mr. Henteleff’s conclusion. Conor is environmentally sensitive with severe communication deficits. Fortunately for my son when he returned from school with self inflicted bite marks on his wrists and hands the school and district officials were conscientious and cooperative in working out an accommodation to meet his needs. He has been educated in a separate quiet location and brought in to the mainstream classroom for limited periods of defined activity to interact with other students who also visit his area for interactive periods such as “reading buddies”. Some other New Brunswick students with disabilities who might learn better in other or a mixed environment have not always been so fortunate.

As New Brunswick continues its review of inclusive education the advocates of the philosophy of full mainstream classroom inclusion for all continue their very aggressive lobbying to maintain the dominance of their philosophy over an evidence based accommodation of the needs of individual students with disabilities. The New Brunswick Association for Community Living performs many good deeds for persons with disabilities. It is also well financed and well connected in our province and advocates relentlessly for the view that all children benefit from full mainstream classroom inclusion. They have been the “partner and stakeholder of choice” for the Department of Education over recent decades. When the Mackay Inclusion Review development workshop days for teachers were held recently it was conducted as a partnership between the Department and the NBACL. Requests by the Autism Society to participate as an equal partner were ignored. The keynote speaker was Gordon Porter the distinguished Chair of the New Brunswick Human Rights Commission who was himself a driving force behind the adoption in New Brunswick education circles of the philosophy of full mainstream classroom inclusion for all. The NBACL hands out awards to teachers who exemplify “best practices” in inclusive education – meaning practices consistent with the NBACL view of full classroom inclusion. At present, the NBACL is aggressively lobbying politicians to protect the status quo of the full classroom inclusion model.

I know that the NBACL leaders are good people with good intentions. I ask them to consider my son’s experience and those of other profoundly autistic children and the possibility that the aggressive promotion of the mainstream clasroom for all philosophy has created a presumption in favour of the mainstream classroom that is at odds with reality, is discriminatory and in some cases harmful to the child. Parents and educators should have choices available as they work out the best ways to accommodate and educate children with a diverse range of disabilities and needs. They should not be forced into an environment which is unhealthy and counter productive for them.

February 13, 2007 Posted by | autism, autism education, Autism Society New Brunswick, choice, discrimination, Henteleff, Human Rights, inclusion, Mackay, New Brunswick, New Brunswick Association for Community Living | 1 Comment