NIMBY: New Brunswick Sends Severely Autistic Adults to NB's Northern Border with Quebec and To Maine, Far From Most Families

NIMBY, Not In My Back Yard: Severely autistic NB youth and adults are sent out of the province to the Spurwink facility in Maine and to the Restigouche Regional Psychiatric Hospital in Campbellton on NB's northern border with Quebec far from families and communities in NB's more heavily populated south.

 The UK Daily Mail has reported the story of a family whose severely autistic  son who was sent 250 miles away for treatment including for severe self injurious behavior.  The distance involved during his stay of more than 2 years meant 500 mile round trips to visit their son who had never met his sister:

Josh Wills was diagnosed with severe autism when he was two years old

For years his parents Sarah Medley and Phill Wills cared for him at home

But around two years ago his self-harming became so severe they realised he needed specialist treatment

He was transferred to a centre in Birmingham for specific care

But 20 months later his parents are still having to do the 500-mile round trip from their homes in Cornwall to visit Josh, who has never met his little sister

A petition #bringJoshhome has received 176,000 signatures

NHS Kernow say their plan is to bring Josh home but they have to ensure the specialist care is available before the teenager can be transferred

The UK is not the only jurisdiction lacking essential service facilities for persons with severe autism disorders. Here in New Brunswick substantial sums of money have been spent over the last 10 years housing individuals across the border at the Spurwink facility in southern Maine. Severely autistic adults who can not function in the group home system which lacks autism trained staff and professional supervision.  The exiles in Maine actually cost substantial  sums of money to the province with conservatively estimated costs of $300,000 per person per year. Adults with severe autism disorders who require permanent residential care and treatment are sent to Campbellton on NB's northern border with Quebec to live out their lives far from family members in NB's more heavily populated south. 

A centrally located special care residential autism facility, based on a modern,  non hospital,  educational and community inolved model was proposed by Paul McDonnell in 2010 and simply ignored by ill informed government decision makers.  During the "connecting the dots" campaign I met with then NB Youth Advocate and Ombudsman Bernard Richard, Christian Whalen who worked in his office and Professor McDonnell.  After representations from McDonnell Richard looked to Whalen for a response which was dismissive.  Neither Richard nor Whalen have ever made any statements to indicate that they have any real knowledge of autism disorders but they don't have to in NB.  Here in NB careers are built by uttering community and inclusion cliches without actually understanding the subject being discussed or the consequences of failing to take meaningful action to address serious challenges like those presented by severe autism disorders.

Contrary to their own community and inclusion cliche statements our government leaders have  been quite content to send our severely autistic adults to Maine and to NB's northern border with Quebec far from their own back yards.

Community? Inclusion? NIMBY, Not in My Back Yard, sums up much more honestly and  accurately NBs failure to help autistic adults live with dignity, proper care and treatment  near family and friends.

NB'ers with Severe Autism Disorders Are Not Included in New Brunswick's "Inclusive Community"

New Brunswick's "inclusive" "community living" model is not a bridge to a better life for adults with autism disorders.  There are huge gaps in the model.  Group home staff are not autism trained and are not professionally supervised.  Those who don' fit in, including those with severe autism disorders are excluded, banished to live in psychiatric hospitals in New Brunswick and outside the country.

New Brunswick tells the world that it is "inclusive" and talks incessantly about our "community living".   In fact if a child, youth or adult suffers from a severe autism disorder they are not included in a community, they are excluded, in some cases literally excluded from New Brunswick, and sent next door to the State of Maine.  Desperate ad hoc measures are resorted to, sometimes at great public expense.   Instead of building a modern, autism specific educational and residential care and treatment facility for New Brunswick adults with severe autism disorders they are sent to live out their lives in psychiatric hospitals. 

The group home system staffed with untrained personnel described in the second article below, the Toronto Star article, remains the same today.  The homes are not appropriate places for persons with severe autism disorders. Even some moderately affected by autism can not function in these locations. The NB civil servant quoted in the Toronto Star article that follows this comment said the group home system in place then, 9 years ago, worked well "for most people".  "Most people" 9 years ago did not include, and most people today, does not include youth and adults with severe autism disorders. 

Community living for New Brunswickers with severe autism disorders does not exist.   Following are 2 reported examples stretching back 9 and 11 years of how our so called inclusive community has treated, and continues to  treat, NB autistic youth and adults with severe autism, 2 examples which highlight the need for the residential care, treatment and community centre envisioned by NB autism expert Paul McDonnell : 

A.  11 years ago members of the Autism Society New Brunswick including the father of an adult son protested at the Centracare institution in Saint John where the man's autistic son was living:

PARENTS DEMAND RELEASE OF AUTISTIC MAN FROM PSYCHIATRIC HOSPITAL FREDERICTON, New Brunswick, Canada:

[NOTE: I have removed from the article the actual names of the father and son at Centracare  and of a mother advocate and son no longer publicly active on autism issues, and substituted non representative initials -HLD]

Parents with autistic children confronted New Brunswick's Family and Community Services Minister, Tony Huntjens, on July 25 and demanded the release of a 21-year-old autistic man being held in a psychiatric hospital in Saint John.

"This is the most difficult thing I have ever faced," says AB, who is trying to get his autistic son, GB, out of Centracare, a psychiatric hospital in Saint John. His son has been there for more than a year and AB says he hasn't been given a reason why. "I cannot believe that this kind of lack of compassion and this kind of atrocity will go on so long as it has gone."

Other parents of autistic kids from Fredericton, Moncton and Miramichi came to support AB. But they say their fight goes beyond freeing GB.

"We here today are a group of parents with autism. We live, eat and breathe autism. We know what the struggles are, but as you well know, the incarceration of GB into Centracare is totally unacceptable," said Shirley Smallwood.

AB and his supporters walked from the legislature to Family and Community Services offices. They confronted the Health Minister, who says its takes time to solve problems. "I'll try to intervene and work with the education system and the parents to see if we can come up with a solution."

The province has set aside Canadian$2.8 million for treating autistic children under the age of five. The group of parents want to meet the Minister again to discuss how treatment can be extended to an older age and be covered by Medicare. Hutchins has agreed to meet AB on July 28 regarding his son. GB.

The protesters claimed that the mental-health facility was not well-suited to the needs of autistic individuals and that GB'S scondition was deteriorating.

GB was placed in Centracare by the Department of Family and Community Services in March. The move was against the wishes of his parents and against the advice of health specialists, the group claimed.

New Brunswick does not have a mental-health facility specifcally designed to treat autistic individuals.

AB said his son was now a shell of his former self, after living in an open Centracare ward. "We see death in his eyes ... every week when we go and visit him," AB said on July 25. "His eyes haunt us." The group planned to take its protest to the Family and Community Services offices on Queen  Street. The parents also want the government to deliver a form of treatment called Applied Behavioural Analysis (ABA) to autistic sufferers in the province.

The Tory government has promised to make the service available to children aged two to five, but the parents argue that is not enough.

One local mother, NL, said the treatment could cost $40,000 a year. Her six-year-old son, TL, is too old to access the services, which still have not been made available to autistic children.

NL said the service was already available in five other Canadian provinces: Newfoundland, Prince Edward Island, Ontario, British Columbia and Alberta.

The treatment had been shown dramatically to improve individuals' autistic disorders, she said. "I don't want to see any other children or families go through this," NL said.

There are roughly 1,000 individuals with autism in New Brunswick.

AB said the group would keep protesting until the Tory government released his son from Centracare. They have collected a petition with 800 signatures supporting GB's release, and they intend to have the petition tabled in the legislature after a new sitting begins next week.

A Liberal critic, Michael Murphy, has promised to take up GB's case
in the legislature.

(Sources: CBC; The Daily Gleaner, July 25, 2003)

2. Nine years ago a 13 year old boy was housed, temporarily, on the grounds of the Miramichi Youth Correctional Centre in a visitor's apartment.  The boy was purportedly sent to Maine aftewards to the Spurwink centre.  9 years later the same inadequate system that brought national notoriety to New Brunswick is still in place.

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." 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.

New Brunswick's group home community model does nothing to help those with severe autism disorders and even some moderately affected by autism.  We can not pretend that it does. What is needed, what has been needed for more than a decade, is the model described in 2010 by Paul McDonnell:

Paul McDonnell, September 2010

"Our greatest need at present is to develop services for adolescents and adults. What is needed is a range of residential and non-residential services and these services need to be staffed with behaviourally trained supervisors and therapists. In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family or the community.

We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision. That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.  Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development.The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff."  (Bold highlighting added - HLD)

Dear Mr Alward, Cardy, Coon, Gallant: New Brunswick Still Needs A Permanent Residential Care and Treatment Centre For Severely Autistic Adults

Photo of my son Conor from a few years ago submitted to the Aquinian for an article by 

then Aquinian journalism student Karissa Donkin. No progress in residential care and 

treatment for severely autistic adults in New Brunswick has been made since that

 article or since Conor's autism diagnosis 16 years ago at age 2

June 18, 2014

Dear Mr Alward, Mr Cardy, Mr Coon and Mr Gallant:

A provincial election will soon be held and one of you will be premier, once again if it is Mr Alward, for the first time if it is Mr Cardy, Mr Coon or Mr Gallant.  I respectfully ask each of you to consider this request for adult autism residential care and treatment and provide a direct response.

Prior to the commencement of the official election period early autism intervention issues have already received some needed attention in a new early intervention policy which provoked considerable reaction and vigorous discussion.  What was not mentioned, what has never been mentioned, what never gets any serious attention, is the desperate need for an adult autism centre that could assist in providing providing ongoing training, leadership and supervision for adult autism group homes and assisted living arrangements and would also provided permanent residential care and treatment for those with severe autism disorders.  

The significant changes that occurred in early intervention and autism education in  this province happened in direct response to strong parent advocacy primarily from parents with Autism Society New Brunswick. In our efforts we always sought credible evidence based services.  We were fortunate in having considerable guidance from Clinical Psychologist and Professor Emeritus (Psychology) Paul McDonnell Ph.D. an autism expert who has been very active in providing public education about autism in New Brunswick. 

During the  2010 New Brunswick election  Dr. McDonnell was interviewed by CBC on the subject of adult autism care. The interview and analysis posted on the site are no longer available but he stated:

Paul McDonnell, September 2010

"Our greatest need at present is to develop services for adolescents and adults. What is needed is a range of residential and non-residential services and these services need to be staffed with behaviourally trained supervisors and therapists. In the past we have had the sad spectacle of individuals with autism being sent off to institutional settings such as the Campbellton psychiatric hospital, hospital wards, prisons, and even out of the country at enormous expense and without any gains to the individual, the family or the community.

We need an enhanced group home system throughout the province in which homes would be linked directly to a major centre that could provide ongoing training, leadership and supervision. That major centre could also provide services for those who are mildly affected as well as permanent residential care and treatment for the most severely affected.  Such a secure centre would not be based on a traditional "hospital" model but should, itself, be integrated into the community in a dynamic manner, possibly as part of a private residential development.The focus must be on education, positive living experiences, and individualized curricula. The key to success is properly trained professionals and staff."  (Bold highlighting added - HLD)

If a major autism centre is not developed to help enhance the group homes and provide permanent residential care and treatment for those with severe autism as Professor McDonnell has advised people with severe autism, including my wonderful, happy 18 year old son,  will continue to be sent to live  out their lives in Campbellton at the Regional Psychiatric Hospital. Apart from the  hospital character of that facility it is also located in a corner of the province 3 to 4 hours drive from most communities in New Brunswick and has no direct access to autism expertise.   The ASNB polled our members on the desirable location for an autism centre and voted for Fredericton for several reasons, the two most critical being proximity to the autism expertise developed at UNB and the Stan Cassidy Centre, and the central location providing easier access for most families to their loved ones who would reside there temporarily and in some cases permanently.

As a very interested father of an 18 year old severely autistic son I ask each of you whether if elected  your government will develop, during the next election term, the modern youth and adult autism centre described by Professor McDonnell and badly needed in New Brunswick.

Respectfully,

Harold L Doherty

Fredericton

Shards of Severe Autism Reality

We were cleaning books and papers out of the "China Cabinet" in our kitchen today.  We had never stored China there only photos, albums and papers.  Like other China Cabinets though there were glass doors on the front through which you could view the China.  Over time Conor had, on different occasions, while suffering meltdowns,  put his hands through the glass windows.  I thought I had gotten all the glass  out on each occasion but today after moving a group of albums I found some shards of glass, shards of severe autism realities.  

Such events are not talked about by those alleged "thinking persons" and others who talk breathlessly about the joys of autism and criticize parents, and grandparents, of children with severe autism disorders and intellectual disabilities who talk honestly about the severe challenges faced by their own children, the children they love.  Personally they will not stop me from talking honestly about the severe autism disorder from which my son suffers and yes he does suffer from it.  I will continue to speak the  truth about these serious neurological disorders and if my words seem to them like shards of glass then so be it. 

Canadian Autism Dad Says Thank You Florida Rep. Bill Posey

In Canada we could use more federal politicians speaking honestly and accurately,

 as  Florida Rep Bill Posey has done in the US,  about Canada's autism crisis  including 

the realities  facing those with severe autism disorders and their families. 

Here in Canada we have seen very little national leadership in addressing Canada's autism crisis.  Particularly during the Stephen Harper - Mike Lake era the federal government has expressly refused to engage  in any meaningful way in addressing Canada's autism issues.  In Canada we have relied heavily on American leadership with respect to autism research.  Against that background this father of an 18 year old son with severe autism disorder, intellectual disability who like so many with those frequently co-occurring conditions also suffers from serious epileptic seizures,  says thank you to  Rep. Bill Posey (R-Fla.) for his demonstrated knowledge of autism disorder challenges.  I am not trying to offer my opinion of the US Combating Autism Act or any other American political issue.  As a Canadian it is not my place to do that.  I do appreciate though his informed, honest description of autism realities and his willingness to openly speak for those with severe autism who can not speak for themselves. 

Unlike so many politicians in Canada, and the US, by my reading, Rep. Posey  is well aware of the realities facing many persons with autism disorders and their families.  As the father of a son who suffers from the severe end of the autism disorder I particularly appreciate his willingness to speak openly about those on the severe end of the autism spectrum and the challenges they face, challenges not even mentioned by most Canadian federal politicians. 

Some excerpts from Rep. Posey's statement found at THE HILL'S CONGRESS BLOG:

Fix the Combating Autism Act

Autism Spectrum Disorder has increased dramatically in the last 25 years.  It is a crisis.  

..
.

At a recently called House Oversight Subcommittee meeting, Dr. Insel admitted that after eight years and spending $1.7 billion, the programs developed in the CAA have failed to determine the causes of the enormous increase of the prevalence of autism, failed to prevent a single case of autism, failed to produce any new biomedical treatment for autism, failed to materially reduce the age of diagnosis of autism, failed to ensure appropriate medical care for the co-occurring health problems faced by many with autism, failed to ensure even basic safety protocols for people with autism who "wander", unfortunately some to their deaths, and overall, failed the families facing autism—most especially the approximately one-third of families with children most severely affected by autism, who literally cannot speak for themselves, and whose severe disabilities portend one of the largest unfunded federal fiscal liabilities of the 21st century.

...

Instead, the IACC plan sits on a shelf while the NIH actually funds autism research through an entirely different set of processes and priorities, completely divorced from the strategic plan.  This disjointed process results in producing at best few effective results.   Furthermore, the agency has failed to evaluate and validate any of the commonly used treatments currently being used so that parents may eventually obtain insurance reimbursement. 

Not only does autism research funding fail to match the IACC recommendations, but the Government Accountability Office (GAO) recently found that up to 84% of such research had the potential to be duplicative.  For example genetics research funding far exceeded the IACC recommendations while environmental exposure research fell far short of those recommended.  Government witnesses affirmed during the hearing that recent research demonstrated that upwards of 55 percent of autism is linked to environmental factors, but the government research funding balance does not reflect this reality. 

...

We owe it to those most severely affected by autism, and all those who love them, to give this our best shot.  I fear that in the rush to pass “a bill” we are missing an opportunity to pass “the right bill” that produces results.  I hope my colleagues on both sides of the aisle will work with me to make the time to do so. 

Liberal education critic Chris Collins Calls for an Immediate Halt to the Alward Government Autism Intervention Service Changes

Collins calls for halt to changes to autism intervention services 

June 11, 2014 

FREDERICTON – Liberal education critic Chris Collins is calling for an immediate halt to the Alward government’s changes to the autism intervention services in New Brunswick.

Changes made by the Department of Education and Early Childhood Development to the standards for agencies delivering intervention services for preschool children with autism spectrum disorder were announced without consultation on May 26, less than one week before an initial implementation date of June 1.  This date has since been revised by Government to July 1, again with no adequate consultation with those affected. 

One of the main concerns voiced by parents and advocates is the introduction of a new mandatory 95 per-cent attendance rate for autistic children receiving intervention services from autism support agencies.  Should a child miss more than 3 days over a 3-month period, the agency loses funding.

Collins, the MLA for Moncton East, said this is unacceptable and added that he has already received calls from families expressing their concerns about this new policy. 

“Autism support agencies already experience high staff turnover rates.  This new policy’s impact on agency funding will certainly make staff retention more difficult,” said Collins.  “While this impacts the autism support agencies, it also certainly impacts the children.

“Routine, consistency, and familiarity are all extremely important for a child with autism,” added Collins.  “These changes are causing an undue amount of uncertainty and stress for both these children and their parents.”

Collins said that the policy is too vague, and does not offer specifics to indicate if there will be any exceptions permitted for missed attendance.  For example, Collins wonders if a child is sick, or if they spend a day with their grandparents, would that count as a missed day?

“At the end of the day, parents must be involved in the decisions that will impact their child,” said Collins.  “This is yet another example of this Alward government making hasty decisions without thinking about the impact they will have on New Brunswickers.”

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Media Contact: Jennifer Gillespie, Office of the Official Opposition, 506-453-2548, jennifer.gillespie@gnb.ca  

M. Collins demande l’arrêt des changements aux services d’interventions auprès des enfants autistiques

Le 11 juin 2014 

FREDERICTON – Chris Collins, le porte-parole en matière de l’éducation pour le Parti libéral, demande l’arrêt immédiat des changements du gouvernement Alward aux services d’interventions auprès des enfants autistiques au Nouveau-Brunswick. 

Les changements effectués par le ministère de l’Éducation et du Développement de la petite enfance aux standards pour les organismes qui offrent des services d’intervention pour les enfants d’âge préscolaire atteints de troubles autistiques ont été annoncés sans consultations le 26 mai, à moins d’une semaine de la mise en œuvre proposée du 1 juin.  Cette date a depuis été révisée par le gouvernement au 1 juillet, encore une fois sans consultation adéquate avec ceux et celles qui seront touchés. 

Une des principales préoccupations exprimées par les parents et les défenseurs est l’introduction d’un nouveau taux de participation obligatoire de 95 pour cent pour les enfants autistiques recevant des services d’intervention d’organismes de soutien à l’autisme.  Si un enfant manque plus de trois jours sur une période de trois mois, l’organisme perd du financement. 

M. Collins, le député de Moncton-Est, dit que cela est inacceptable, et a ajouté qu’il a déjà reçu des appels de familles exprimant leurs inquiétudes face à cette nouvelle politique.  

« Les organismes de soutien à l’autisme connaissent déjà de fréquents changements au personnel.  L’impact de cette nouvelle politique sur le financement de ces organismes rendra encore plus difficile la rétention du personnel, » a dit M. Collins.  « Bien que cette nouvelle politique aura un impact sur les organismes de soutien à l’autisme, elle aura certainement un impact sur les enfants.

“Un enfant autistique nécessite une routine, de la cohérence, et de la familiarité, » a ajouté M. Collins.  « Ces changements causeront un stress et une incertitude excessive pour ces enfants et leurs parents. »

M. Collins a dit que la politique est trop vague, et n’offre pas de détails pour indiquer s’il y aura des exceptions pour les journées manquées.  Par exemple, M. Collins veut savoir si une journée manquée s’appliquera à un enfant malade, ou à un enfant qui a passé la journée avec ses grands-parents.

« À la fin de la journée, les parents doivent être impliqués dans les décisions qui auront un impact sur leurs enfants, » a dit M. Collins.  « Voilà un autre exemple d’une décision rapide prise par ce gouvernement Alward, sans aucune considération pour l’impact qu’elle aura sur les Néo-Brunswickois. »

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Personne ressource : Jennifer Gillespie, Bureau de l’opposition officielle, 506-453-2548, jennifer.gillespie@gnb.ca

US CDC Autism Prevalence Estimates Challenged

I didn't see this autism "controversy" brewing. The authors of an article published  in the Sage Autism journal have challenged the credibility of the US CDC autism prevalence figures. The full article is on line and free for viewing (PDF also available free) at:

Should we believe the Centers for Disease Control and Prevention’s autism spectrum disorder prevalence estimates?

David Mandell

Luc Lecavalier

"In March 2014, the Centers for Disease Control and Prevention (CDC) released their most recent estimate of the prevalence of autism spectrum disorder (ASD) among children aged 8 years (CDC, 2014). Their startling finding was that 1 in 68 children met criteria for ASD in 2010, compared with 1 in 88 in 2008 (CDC, 2012), 1 in 110 using combined data from 2006 and 2004 (CDC, 2009), and 1 in 150 in 2002 (CDC, 2007). This dramatic increase has raised many concerns regarding possible causes, with much attention given to toxic exposure in the perinatal period (Rodier, 2011) and broadening of the diagnostic criteria (Newschaffer et al., 2007). While these and other hypotheses certainly are worthy of further exploration, we believe that this apparent increase should raise as many concerns about the study methods themselves as it does about other reasons for the observed change in prevalence. ........."

JAMA Study: $2.4 Milliion (US) Lifetime Cost of Care for Person with Autism and Intellectual Disability

JAMA study points out US lifetime costs of care for a person with autism disorder and intellectual disability will approximate $2.4 million US (ASD W/Out ID #1.4 million). For children special education and parental productivity loss were largest cost components. For adults residential care, supportive living accommodation individual productivity loss and much higher productivity costs contributed to the highest costs.

Costs of Autism Spectrum Disorders in the United Kingdom and the United States

Results  The cost of supporting an individual with an ASD and intellectual disability during his or her lifespan was $2.4 million in the United States and £1.5 million (US $2.2 million) in the United Kingdom. The cost of supporting an individual with an ASD without intellectual disability was $1.4 million in the United States and £0.92 million (US $1.4 million) in the United Kingdom. The largest cost components for children were special education services and parental productivity loss. During adulthood, residential care or supportive living accommodation and individual productivity loss contributed the highest costs. Medical costs were much higher for adults than for children.

Conclusions and Relevance  The substantial direct and indirect economic effect of ASDs emphasizes the need to continue to search for effective interventions that make best use of scarce societal resources. The distribution of economic effect across many different service systems raises questions about coordination of services and sectors. The enormous effect on families also warrants policy attention.

NDP Calls for Restored Funding for Autism Early Intervention Centres

Many thanks to Dominic Cardy, Kelly Lamrock, Amanda Diggins and the NDP who understand the essential point of any early autism intervention policy - ensuring that autistic preschoolers receive proper evidence based early intervention from properly trained staff providing well planned intervention.  Punishing the kids by reducing or eliminating their treatment  because agencies and/or parents experience problems  IS short sighted or as I would say ... makes no sense at all.

FREDERICTON – New Brunswick New Democratic Party Leader Dominic Cardy is calling for the restoration of funding to government-contracted agencies that provide pre-school children with autism early intervention programs across New Brunswick. Cardy believes the cuts, effective June 1st, are short sighted and will cost the province more in the long run.

“Autism interventions before age five are most effective, save money long term and most importantly give kids the best chance at a full and rewarding life,” Cardy said. “This is short-sighted and shows why we need NDP MLAs to stop these backroom decisions.”

The changes that took effect this month include cuts to funding for training new agency employees, human resources services, instructors teaching group classes, and staff preparation time.

NDP Oromocto-Lincoln candidate Amanda Diggins is an early childhood educator who believes this funding is crucial for the future development of these children.

“Eliminating funding for staff training and planning is wrong,” Diggins said. “The hours a worker spends with children aren't just supervision, it is therapy and like any educational service needs to be planned. Parents of kids with autism are already working hard and often stressed. This is unacceptable.”

Cardy said it is especially disappointing that these cuts occurred during National Disabilities Week.

“We supported Kelly Lamrock's decision to train and hire 400 more Applied Behaviour Analysis (ABA) trained workers when he was Education Minister in 2006,” Cardy said. “New Brunswick has made progress in helping children with autism and we cannot just throw that aside now because governments don't want to make tough decisions on corporate welfare and patronage.”

What an Autism Training Commitment Actually Looks Like

Above former Premier Shawn Graham, a true friend of autistic kids in NB,  and the late Fredericton MP Andy Scott a tenacious advocate for autistic children in Ottawa enjoying some time with the kids at Autism Intervention Services Fredericton

Some parents of autistic children in the Fredericton area are satisfied with statements from some EECD civil servants that commitments for funding autism training for autism intervention centres in NB will take place in Phase 2 of the new autism intervention centre requirements.  ASNB parent advocates never relied on such vague, low level assurances in advocating for the autism intervention services enjoyed by autistic kids in NB today.   

Above former Premier Shawn Graham and the late Andy Scott, former Fredericton autism advocate in Ottawa and Fredericton MP spend some fun time with kids at the Fredericton Autism Intervention Services Centre and Autism Connections Frederictoon community centre.  Below is the commitment made by then Liberal Opposition Leader Shawn Graham with respect to autism services, particularly UNB-CEL Autism Intervention Training for TA's and Resource teachers in NB schools.   Shawn Graham, a true friend of NB's autistic children honored the autism commitments he made ... to the letter.

See paragraph 2, this is what an autism training commitment actually looks like:

Graham, Shawn (LEG) <Shawn.Graham@gnb.ca> 9/6/06 to HAROLD	9/6/06

Dear Harold:

Thank you for your letter and for sharing your concerns with me.  In our
Liberal election platform that will be released later this week, we are
committing to the implementation of the recommendations of the
Interdepartmental Committee on Autism released in November 2001.
Although we realize this document is now nearly five years old, it does
provide a basis on which to develop, in partnership with the
stakeholders, a strategy that will assist children with autism from
early childhood and into adulthood.

As well, we will take two concrete steps to address the immediate needs
of children with autism in two areas:  a case management process and
UNB-CEL autism training.

A new Liberal government will:

1.                  Integrate services for young children and their
families by enhancing and expanding the Early Childhood Initiatives
Program to ensure a smooth transition into public school for children
identified as at risk or those with special needs, such as autism.

2.                  Provide UNB-CEL autism training for 100 additional
teaching assistants and Methods and Resource teachers each year for four
years.

I commend you and the members of the Autism Society of New Brunswick on
your tireless advocacy on behalf of children with autism.  You are truly
making a difference in many lives.  Please feel free to contact me at
any time.

Yours truly,


Shawn Graham

Leader of the Official Opposition

Ignoring Training Requirements and Realities Will Undermine NB Autism Intervention Services

A Fredericton mother was heard on CBC info am a short while ago, once again expressing her opinion that overall the new NB  Autism intervention policy is good. She basically stated that 20 hours of treatment should mean 20 hours of treatment. Everybody agrees with that statement. Unfortunately the problem with the new policy isn't the 20 hour accountability policy. The underlying problem is the lack of anything in the policy to provide for properly trained personnel to provide the 20 hours in agencies around the PNB. Without proper training the treatment quality will diminish substantially and may even be counter productive.

The other problem with the policy is the lack of notice that was given to the agencies some of whom have indicated it will be very difficult and perhaps impossible to meet the new standards. Some agency employees have stated publicly that they will probably not be able to continue. The impact if agencies can't deliver under these conditions will be felt by children with autism disorders.

A parent has already commented on this blog that their child's appointment for intervention assessment has been postponed as a result of the changes and lack of notice. Everyone agrees that 20 hours should mean 20 hours but it will not be done by ignoring training requirements OR proper notice requirements for adjustments to be made.

Is that Dentist Sticking The Needle in Your Mouth Properly Trained? How About the Therapist Working with Your Autistic Child?

NB Premier David Alward whose government has Produced a New Autism 

Intervention Policy with No Provision for Funding Training of Autism Support

 Workers treating New Brunswick's autistic pre-schoolers. 

The next time you sit in a dentist's chair will you have to wonder whether the dental assistant or even the dentist is properly trained?  Will you have to ask whether your child's teacher has a university education? The answer to both of these questions is obviously no.  Medical and education workers generally are required to be properly trained. Nor do we want untrained "mechanics" servicing our cars.  In New Brunswick though our current government has produced a new policy which does not provide for training of Autism Support Workers providing intervention to autistic children.

I was, as some people have pointed out, consulted as part of the process leading up to this new policy.   I agree with ensuring that 20 hours for intervention results in 20 hours for intervention.    But in order for those hours to be effective they have to be provided by properly trained Autism Support Workers.   I communicated the need for properly trained autism workers to the EECD and again yesterday when I returned a call from an individual in that department. I was told that training would be addressed in the next phase, "Phase 2".  That statement confirmed my interpretation of the new Autism Intervention policy, that training is not addressed in "Phase 1".

Will there be a Phase 2 someday?  With current cost cutting by this provincial government that is unlikely, very unlikely.  The more likely scenario is that this government is just putting off autism intervention training issues until after the provincial election this year.  With no real, specific commitment to provide autism intervention like that offered by the internationally recognized UNB-CEL autism training program the Alward government .. if re-elected won't have to worry about breaking an election promise to NB families with autistic children.  They haven't promised, they haven't even mentioned training publicly, so there will be no Phase 2 autism training promise to break.

Well played Premier Alward, well played.