Is 2015 The Year New Brunswick Finally Addresses Serious NB Adult Autism Residential Care and Treatment Needs?

During the  2010 New Brunswick election  Dr. McDonnell, as noted above, was interviewed by CBC on the subject of adult autism care. The interview and analysis posted on the site are no longer available online but he stated at that time (bold highlighting added by me):

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)

 The autism residential care and network system described by Dr. McDonnell was raised with the parties during the 2014 election.  The Green and NDP parties responded positively to the matter with mentions in their election platforms.  The Liberal and Conservative parties ignored autism issues entirely so there is no reason to assume that the currrent Liberal government will address the needs of  New Brunswick's autistic adults particularly those with severe autism disorders and co-morbid conditions like my son Conor who will probably be forced to live out his life in the Restigouche Psychiatric Hospital in Campbellton's in NB's northern border with Quebec.  All the community cliches in the world will be of no assistance to my son and other severely autistic adults most of whom will be living many hours drive from their families.

It is not clear for the reasons that follow why the government of New Brunswick has refused to addressed the serious health and residential care needs of autistic adults.  The usual suspects have been:

1. Costs

The network described above by Paul McDonnell could actually have resulted in government cost savings. Some of NB autistic adults have been sent to Spurwink Maine for many years at costs of several hundred thousand dollars per year per person.  With the current Liberal government dedicating millions to capital investment during its election term it would be a good opportunity to build the autism centre referenced by Paul McDonnell a centre which could provide quality residential care for those in need of such and professional expertise and oversight for community autism homes and assisted living environments around the province.  

2.  The Taboo Against "Institutions", "Centres", "Bricks and Mortar"

In New Brunswick various groups and individuals have persisted in  repeating community cliches like "no bricks and mortar" when various special care needs are raised. (To my knowledge ALL of these individuals live in bricks and mortar buildings). These same people simply ignore the evidence that their total faith in undefined community solutions has not addressed the needs of autistic adults in NB.

In the autism context a meeting was held several years ago with Ombudsman and Youth Advocate officials Bernard Richard and Christian Whalen.  I attended in the company of NB autism expert Paul McDonnell.  McDonnell's proposal for an autism center and network was raised with these gentleman, neither of whom has any known autism expertise, but was quickly dismissed, and not discussed in any meaningful way, by Mr. Richard or Mr. Whalen.  Mr Richard was interviewed recently on CBC when the government announced funding for a youth complex needs centre.  Mr Richard, of Moncton, once again, voiced the "no bricks and mortar" cliche before advocating for Moncton as the best location for a youth complex needs centre.

There are in today's world existing examples in other areas of mental health care which could be borrowed to develop the physical structure necessary to accommodate residential care and treatment needs of autistic adults in a way that would allow for a range of environments to accommodate those with greater liberty needs and those with greater security, assistance and health care needs. The Hogeway dementia care village facility is one such example which is receiving world wide recognition.

The costs and and community concerns would in fact be addressed by the autism network described by McDonnell.  Such a centre would see monies being spent constructively in New Brunswick which would save monies spent  outside New Brunswick and would provide New Brunswick autistic adults with residential care and treatment in their communities for those who are capable of living in a group home or assisted living environment and in a centre in Fredericton near the autism expertise of UNB, UNB-CEL and the Stan Cassidy Centre for those requiring permanent residential care and treatment.  Fredericton, an increasingly bi-lingual city, would also be able to provide centre services in French and English as demonstrated by the UNB-CEL autism intervention training program.  The UNB-CEL autism program has received international recognition as  a model early intervention program for training autism support workers and clinical supervisors and has done so in both French and English.  (The Universite de Moncton was asked to participate in the initial stages of developing the UNB-CEL autism program but for reasons unknown to me declined the opportunity to participate and has developed no similar program).

The need for an adult autism care network can not be denied in New Brunswick.  With an estimated  population of 11,000 New Brunswick'ers with autism many are also adults living in a hodge podge of arrangements without badly needed professional oversight or assistance.  Others have been  sent to a variety of institutional care settings.  Some well known cases are the autistic youth living on the grounds of the Miramichi  youth correctional centre (2005) before being sent to Spurwink Maine, the adult who lived at Centracare (2003) before being sent to Spurwink and those who have resided, and continue to reside, at the Restigouche Psychiatric Hospital on the Quebec border far from most families in southern-central NB. Unconfirmed reports indicate that some autistic adults have lived for periods of time on general hospital wards.

It is time to save money, provide assistance and positive, meaningful life development to those autistic adults who can not function independently in living accommodations near their home,  AND extend their life expectancies. 

It is time to walk away from the addiction to cliches while shipping autistic adults to locations far from families. 

It is time, it is long past time, since the events in 2003, 2005,  to seriously address NB adult autism residential care and treatment requirements and build the  autism network envisioned by NB autism expert Paul McDonnnell in 2010.

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)

Absurd Social Models of Autism Ignore Severe Autism Realities

Restigouche Regional Hospital, Campbellton New Brunswick

Centracare Long Term Mental Health Services Center, Saint John New Brunswick

As the father of a severely autistic boy I am repulsed by attempts to redefine autism from being a medical concept, a neurological disorder to a social model based on variations in personality and modes of thinking. At its most benign the social models of autism are inherently self contradictory. People who have received a medical diagnosis of autism wish to be thought of as autistic, they are proud of their autism, BUT they do not want "their" autism to be known as a medical condition. Autism, however, has no meaning other than as a medical disorder. A person acquires the label autistic because they have received a medical diagnosis. They received the diagnosis because of significant behavioral, communication and social deficits. At its worst though the social model of autism is a dangerous delusion.

The social model is dangerous because it requires that we close our eyes to the realities of autism, particularly the more severe manifestations of autism. There are many persons with high functioning autism and Aspergers for whom it is fine to ponder autism as a social construct. After all many can attend university, have careers, get married and otherwise function independently in society.

For many low functioning persons with autistic disorder life is quite different. For them the future is one of dependent living in group homes and institutional facilities. For some lower functioning autistic persons language is a severe deficit. Not just speech but understanding or using language by any mode. For some, intellectual deficits accompany their autistic disorder.

Here in New Brunswick I have been involved with autism advocacy since my son's diagnosis 11 years ago. With many other parents, I fought for pre-school autism intervention and autism trained teacher aides for autistic students. These resources have been helpful for many New Brunswick children with autism disorders including some with Aspergers. These special resources were dedicated to helping these children because they needed the extra resources, the specialized intervention. They needed these interventions because of the deficits which defined their medical disorders, their autism spectrum disorders.

I have also fought alongside other parents for the continuation of a tertiary care program for autistic children which had been threatened with termination. The plan to close the program arose not because it was unnecessary, quite the opposite. The autism pediatric tertiary care program was being closed because it was placing such demands on the resources of the facility which provided the program that it was threatening other programs. The announced closing prompted a strong reaction from parents of autistic children. The program, with the involvement of the facility's professional staff, and then Health Minister Brad Green, was saved.

I have also visited two mental health facilities where some autistic adults in New Brunswick live. New Brunswick has a privately operated group home system badly in need of many improvements. For some autistic adults though even a group home is not the reality. Some are too severely autistic, present too many complex challenges, to live in a group home. For some institutional care is the future.

I visited the Centracare facility in Saint John several years ago with a friend, a father whose adult autistic son was living in the facility. At the time my son Conor was only a child. Last week I visited the psychiatric building of the Restigouche Regional Hospital in Campbellton. I was particularly interested in the treatment of the autistic adults living there. The people from the hospital were competent and caring individuals. They do what they can for all their residents including the autistic adults. For me it was reassuring to meet such people but it was still disturbing to see what may be my son's future.

Conor is older now, he will turn 13 this Thursday. His future is much closer. His future may well mean life in a group home, or in an institution like Centrcare or the Restigouche Regional Hospital. For me it is impossible to cling to the outrageous idea that autism is not a medical condition. Reality is far too close at hand for such a dangerous delusion.

autism

An Autism Parent's Letter to Morton Ann Gernsbacher

Morton Ann Gernsbacher, Professor of Psychology, President Association for Psychological Science


Centracre mental health facility in Saint John New Brunswick Canada which houses patients with a variety of mental disorders including persons with severe autism. It is not known whether Ms. Gernsbacher has ever visited such a facility to consult with autistic residents of such facilities about meaningful participation in her research efforts.

"Listservs, Yahoo groups, and even Second Life are teeming with autistics’ informed and articulate discussions of autism research — from persuasive deconstructions of their putative lack of mirror neurons, empathy, and theory of mind, to provocative hypotheses about atypical minicolumns, Purkinje cells, and 2D:4D ratios, to book-club-like discussions of the classics. Press releases, conference presentations, and journal articles are devoured and digested, sometimes with burps as simple as “no sh*t, Sherlock” (in response to a Nature Neuroscience publication of mine).

However, autistics are almost never consulted by autism researchers (thereby violating the mantra of disability rights, “Nothing About Us, Without Us”), and often they are explicitly excluded. Ms. Dawson has documented Canadian research conferences that barred autistics from attending but curiously welcomed parents of autistic minors as expert contributors.

Why haven’t autistics’ own voices been heard? Why haven’t autistics been as actively recruited to participate in all aspects of the research process as they’ve been recruited to participate as research subjects (even posthumously by donating their brain tissue)?

Perhaps it’s assumed that autistics just wouldn’t be able to handle high-level research. If so, someone ought to tell Vernon Smith, who was awarded the 2002 Nobel Prize in Economics (alongside APS Fellow Daniel Kahneman) for pioneering the field of experimental economics. And somebody better alert Richard Borcherds, who was awarded the mathematics equivalent of the Nobel Prize — the Fields Medal — in 1998. Both academics are diagnosed autistics. "

- Morton Ann Gernsbacher,
The True Meaning of Research Participation
Observer, April 2007, Volume 20, Number 4

http://www.psychologicalscience.org/observer/getArticle.cfm?id=2147


Dear Dr. Gernsbacher:

Your paper The True Meaning of Research Participation is interesting and thought provoking. As the father of an 11 year old boy who is severely autistic I am somewhat disturbed though by your express identification of autistic persons with the high functioning persons mentioned in the article. Your basic point, that autistic persons should be consulted in research, assumes (1) that all autistic persons are capable of being consulted in a meaningful way or (2) that high functioning persons such as your colleague Ms Dawson, Amanda Baggs, or Jim Sinclair, are representative of the great number of autistic persons, including my son, who do not share their communication abilities. Your article also goes on in a very flimsy way to suggest that objectivity is not an issue when these persons are involved in research. I hope you will not be too offended that I, a mere parent, find your assumptions faulty and your argument flawed.

I will not insult someone of your academic standing in the discipline of psychology by citing studies and reports which indicate that many autistic children do in fact have serious cognitive and communication impairments which render meaningful consultation by such less fortunate autistic persons an impossibility. You know this already although you do not address this point in your article.

I am not as certain though about the second possibility. Your whole article seems to be premised on the belief that Ms Dawson, Ms Baggs, Mr Sinclair and other autistic persons with very substantial communication and comprehension abilities are somehow representative of autistic persons such as my son who have much lower abilities in these areas, who can barely communicate at all, and in many cases, can only do so after years of Applied Behavior Analysis intervention. If that is indeed your assumption then as a parent who has actually lived 24/7 with a severely autistic son for 11 years I have to say I find your assumption to be flawed and not based on any obvious understanding of the realities of autism for persons with more severe cases of autism.

I spoke twice by telephone with Ms. Dawson, albeit briefly, when I was president of the Autism Society New Brunswick. On those two occasions she contacted me seeking access to a copy of a document prepared at the request of ASNB for possible use in litigation. Ms Dawson as you know has very substantial comprehension and communication abilities. What she does not have is much in common with my son or the many low functioning autistic persons who lack basic communication and comprehension. These are two important areas of life. They can literally mean the difference between life and death if, by way of a personal example, a child does not realize that cars will hurt him upon contact.

These differences can mean that dialogue between parent and child, and other persons in the child's life, is extremely limited. These differences mean that many lower functioning autistic persons will live in institutional care for the rest of their lives. This is an existing reality not an academic theory or debate. As a lowly parent, concerned about my son's future, I do not accept your flawed premise that Ms Dawson and others with similar comprehension and communication are sufficiently representative of the autism spectrum of disorders to suggest that autistic person are included in research by virtue of THEIR inclusion.

Your comments about objectivity are disingenuous at best and misleading at worst. Your own colleague, Michelle Dawson, has been a fierce opponent of efforts by Canadian parents to obtain government funded Applied Behavior Analysis treatment for their children. To that end she has appeared as an intervener in the Supreme Court of Canada proceedings in the Auton case and she has appeared before the Canadian Senate Committee which examined autism treatment funding issues in Canada. Ms Dawson's lack of objectivity is documented by her well known comments about parents and organizations seeking treatment for their autistic children:

"“They want autism to be a sickness that needs to be cured,” she said. “They say horrible disgusting things so they can get more money for their lobby groups. They make me sick,” Ms. Dawson said."

- Andre Picard, Globe and Mail, February 20 2006

If you check the internet you can find many more instances of disparaging remarks made by your colleague about parents and politicians seeking ABA treatment for autistic children. I do not share your professional standing. I am simply a parent. And I am a lawyer. Objectivity is also evaluated in my profession. Ms Dawson's public views about autism, and her demonstrated public hostility to parents, professionals and politicians seeking to treat or cure autistic children is more than ample evidence of her lack of objectivity. With respect your homage to Ms Dawson and other agenda driven high profile high functioning autistic persons also demonstrates your own abandonment of professional objectivity.

Ms Dawson has participated in your research as your colleague. Conor Doherty, an 11 year old with Autism Disorder, with profound developmental delays, has not participated and has not been consulted. Michelle Dawson does not speak for my son. Perhaps you, Dr. Gupta, Ms Dawson and Ms Baggs can make a visit to some mental health institutions where they care for youth and adult lower functioning autistic persons less fortunate then your friends. And please, revisit the quaint notion of objectivity while you are there.

Respectfully,


Harold L Doherty
Fredericton New Brunswick
Canada