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

From: luigi.rocca

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

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

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

Subject: Stan Cassidy Centre for Rehabilitation

 Dear Minister Robichaud:

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

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

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

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

Your prompt attention to this issue would be greatly appreciated.

Sincerely,

Luigi Rocca President
Autism Society of New Brunswick

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

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

Will it happen? 

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

Health

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

NB 1149

Aug. 17, 2006

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

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

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

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

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

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

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

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

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

06/08/17

Time To Divide The Heterogeneous DSM-5 Autism Spectrum Disorder and Free the Invisible, Severely Autistic From Oppression

Associated Morbidity and Mortality

Health care utilization and costs are substantially higher for children and adolescents with ASDs compared with children without ASDs,^89–91 and available data suggest that mortality is increased as well (standardized mortality ratio: 2.4–2.6).^92,93 The increased mortality in ASDs is thought to be largely, but not completely, accounted for by the increased mortality associated with mental retardation and epilepsy.

The above information from the American Academy of Pediatrics, Management of Children With Autism Spectrum Disorders,  autism policy statement 2007, reaffirmed 2010, makes it clear that the challenges facing those with severe autism and their families includes substantially higher costs and increased mortality.  Some  very, very high functioning autistic persons like Ari Ne'eman, John Elder Robison and others make careers lecturing government, media, professionals, even institutions of higher learning, about autism and dictating how society should see and deal with all autistic persons, including the severely autistic with whom they have so very, very little in common. The result is a lack of attention to, and provision of services to, meet the  short and long term needs of those who suffer from,  severe autism disorders.

 For many high functioning  autism self advocates, having received an Autism Spectrum Disorder diagnosis, they no longer consider autism to be a disorder.  They are reinforced in their irrational denial by mainstream media who love to publish autism feel good stories. References to Einstein, Van Gogh and every historical talent and genius you can think of routinely include mentions of suspicions that they were autsitic although they lived before autism was recognized to exist.  Charities seeking to maintain their charitable tax status and otherwise ingratiate themselves to governments and donors like to emphasize the "positive" and in some cases actually attack parents who speak honestly about their own children's severe autism disorders.  In all these cases those like my son who live on the severe end of the autism spectrum of disorders are invisible.  For the invisible severely autistic  the only times they are even mentioned in the media is when tragedy strikes, when a child wanders from home to nearby swimming pools, lakes or busy roadways.  Otherwise, they might as well be literally invisible. Their needs will not be addressed. Even mention of their severity, even the concept of severity will remain verboten.

One necessary first step is to reverse the serious DSM5 mistake of combining, with no evidence basis, the various pervasive developmental disorders into 1 Autism Spectrum Disorder so heterogeneous in nature it makes the new ASD a useful tool for continuing the historical trend  of   "autism" studies of high functioning autistic subjects that at the same time exclude the severely autistic.  The new ASD  also gives legitimacy to the very, very high functioning career autistics who, with the mainstream media and money seeking charities, suppress knowledge of severe autism realities and with that suppression contribute to societal oppression, by ignorance, of the severely autistic.

I will speak out and condemn, as long as I am alive, the suppression of the truth about the realities faced by those with severe autism disorders and their  families.  It may not make a difference in the upside down, distorted world of  autism "awareness" but I will try  anyway.  I owe it to my severely autistic son to do so.

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)

Severe Autism Reality: Desperate BC Mother of a Severely Autistic Son Ends His Life and Her Own

Photo and caption from The Province, April 23, 2014 

Photo and caption from the Province, April 23, 2014 

As reported by Sam Cooper in The Province April 23, 2014 a small and desperate Prince Rupert, British Columbia mother has killed her large. powerful, self aggressive, autistic son and then killed herself.  Members of her family shared their story with The Province hoping to increase support for autistic children in northern BC. The article indicates that the son, Robert,  weighed approximately 270 pounds.  His mother Angie Robinson weighed 100 pounds.  

Angie Robinson's son Robert engaged in very severe self injury including smashing his head through the rear window of Angie's pick up truck and getting worse afterward until he had to be taken to a hospital and sedated with heavy doses of Ativan.  It is believed that Angie Robinson killed her son with a lethal dose of Ativan. The mother had gown desperate from a lack of support and no longer believed she could care for her son. 

According to The Province article the mother, Angie Robinson, left a final Facebook post before ending her life:

"On 11:56 a.m. on April 2, Angie Robinson wrote a last Facebook post: “More, more, more needs to be done for our teens with special needs, they are neglected … Canada needs more residential and respite care for families hoping to keep their children at home.”"

News of this tragedy will provoke more outrageous, ridiculous attacks blaming deaths like those of this desperate mother and her son on parents and organizations who provide honest descriptions of severe autism disorders.   Those who believe that autism is just a different way of being, a joy, even a blessing, will simply ignore the hard evidence, the hard reality, that parents of severely autistic children actually live first hand. 

Sadly, this is not the first such incident in Canada or the US. The inadequate group home networks can not provide the necessary long term professional care for challenging, severely autistic adults like Angie Robinson's son Robert.  A decent modern professionally run and staffed permanent residential care system is needed in BC and elsewhere in Canada ... including New Brunswick. 

Conor's Severe Autism Disorder Challenges: Expectations

Conor and Dad are "Buddies Forever" but when he didn't expect Dad 

to be home last night he literally refused to look at me when events

 caused me to change my plans and stay home.  He did not expect me 

to be around last night so ... in his way ... I wasn't. 

Conor, as I have written many times, is severely autistic.  That doesn't stop him from being a happy boy, now a young man, who brings tremendous joy to his Mom and Dad every day. His autism disorder though does not just go away.  It is very much present when Conor's expectations are disrupted.

Conor is my "Buddy Forever" and when I am going to be away from home on business as I expected to be last night we prepare him in advance.  He didn't expect to see Dad last night.  Events intervened though that caused me to stay home for the night. While waiting on the ramp for an opportunity to access Fredericton's Westmorland Street Bridge I got rear ended by a truck that did a pretty good number on the rear bumper and trunk lid and on the driver's side lights of my Toyota Camry.  Between waiting for the police to arrive and process the accident, attending at an auto body shop, calling in my insurance claim, waiting for a drive, and tending to some other business, I was beat and decided not to leave town last night.  

Conor, who was not expecting to see me, did NOT engage in a tantrum, or meltdown, and he gave me high fives when I asked for them BUT he refused to look at me ... keeping his eyes shut to avoid seeing me at all times. Not a big deal in the scheme of things but given the fun we usually have it was a reminder that Conor's autism disorder is what it is ... a disorder. One that is still very much with him. 

10 Years of NB Government Inaction On Adult Autism Care: Is It Possible Our Elected Leaders Just Don't Care?

It is increasingly difficult to be polite when discussing the lack of compassion demonstrated by NB governments towards New Brunswick's adult autism population. As the letter from Gary Mayes to the Telegraph Journal in 2005 demonstrates, after two years, at that time, of flat refusals to act, the refusal of our governments to address adult autism care in a systemic, conscientious fashion over the last decade is fixed in stone: 

Today New Brunswick still needs appropriate residential facilities to meet the individual needs of NB adults with autism, particularly those with severe symptoms including sensory challenges, obsessive routines and self injurious behaviors.  An adult autism care network with a center for permanent care and treatment for those most severely affected by autism disorders and expertise available for autism group home care around the province was proposed by UNB Professor Emeritus (Psychology), clinical psychologist and autism expert Paul McDonnell in 2010.  That proposal would also build on the success enjoyed by New Brunswick in early intervention and school services; areas which also need improvement but have been recognized as models worthy of emulation.

The McDonnell  proposal has received no serious consideration from NB's current government. That was made clear to me in a pre-Christmas 2012 chat at Kings Place with Ken Ross, Assistant Deputy Minister of Health.  When I raised autism issues for discussion with Mr. Ross and indicated ASNB's interest in adult autism care with him he diverted the discussion by asking questions about ASNB's organizational status even though ASNB is the most transparent disability advocacy group in NB, is totally conflict of interest free in that it receives no financial subsidy from the government, and operates, unlike another major community organization, at arms length from government.  While not being financially indebted to the government ASNB has consistently invited government and party leaders to ASNB meetings, an offer which has been recently been taken up by EECD Minister Jody Carr and NDP Party Leader Dominic Cardy.

Mr. Ross's attempt to change the conversation was exactly the same tack he took over a decade ago when ASNB was advocating for evidence based early intervention for New Brunswick's autistic children.  Ultimately the Department of Health transferred responsibility for providing early intervention to the Department of Family and Community Services as it was then called even though autism disorders are, and were, recognized as mental health disorders by the Diagnostic and Statistical Manual of Mental Health Disorders versions, IV and 5.  We did ultimately get back to adult care in our pre-Christmas discussion but there was no indication from Mr. Ross that he was even aware of the network proposal  suggested by Dr. McDonnell, a proposal which was consistent with positions taken over the past 10 years in meetings with and submissions to the Province of New Brunswick.  Ken Ross is not an elected official but he is a key autism adviser to New Brunswick ministers of health over more than a decade.   His lack of professed awareness of the ASNB or McDonnell positions is a strong indication that our elected officials have either ignored or outright rejected the proposed modern autism adult care network whether they were, or were not, acting on Mr. Ross's advice in doing so.

While NB has done much to help autistic children and students our governments  simply refuse to seriously address the needs of  autistic adults particularly those with severe challenges who must live out their adult lives in the psychiatric hospital in Campbellton.   It is difficult to avoid the conclusion that, when it comes to autistic adults in need of residential care and treatment, our governments, and/or some of their key advisers,  simply do not care.