Friday, November 3, 2017

Still No NB Adult Autism Residential Care and Treatment 12 Years Later






October, which is officially Canada's autism awareness month, has passed with no real autism awareness being generated.  The public is no more informed than ever about the harsh realities endured by many with autism disorders.  For many autism is a tv series about a very intelligent person with high functioning autism/Aspergers.  Many are unaware of the intellectual disability, seizures and self injurious behaviours that restrict the lives of so many with autism disorders.  Many, in fact most, are unaware of the large Swedish study reported on by the UK Autistica charity which brought to public attention that persons with autism tend to die 16-30 years earlier than persons in the general population with depression and suicide being the primary cause at the higher functioning end of the autism spectrum and epileptic seizures at the lower functioning end of the spectrum.  Although the autism health care crisis is known to government no steps have been taken to move forward to address this crisis.

NB has developed international recognition for the early autism progress it developed and has most recently through the Fredericton based UNB-CEL Autism program entered into a contract with France to provide services.  Respected NB autism expert Paul McDonnell Ph.D. proposed an autism network 7 years ago in an interview with the CBC.  Two years ago Dr. McDonnell, autism advocate Cynthia Bartlett and I met with then Social Development Minister Cathy Rogers and presented an expanded paper setting out in more detail the principles articulated by Dr. McDonnell in his 2010 CBC interview. :


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 supervisionThat 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)

Despite the autism expertise developed in Fredericton at the UNB-CEL and at the Stan Cassidy autism team the PNB has not acted to expand the services available in early years to provide proper adult autism treatment and residential care for autistic adults in a centre for those with the most severe needs and in autism specific group homes in communities around the province. 

Instead NB STILL sends autistic adults in need of serious treatment and residential care to NB's northern border, far from most families, to the Restigouche Psychiatric Hospital, in the riding of soon to be former MLA/Lobbyiest  Donald Arsneneault.

The NB adult autism health care crisis has been very well known to NB governments for at least 12 years. The autism expertise has continued to develop, not in the Restigouche Psychiatric Hospital but in Fredericton where that expertise could be expanded to develop the center for the autism group home network envisioned and proposed by Paul McDonnell Ph.D. in 2010 and 2015.  Instead our adult autism family members have been treated as political chips and sent off far from families to Campbellton. The fully bilingual autism expertise developed in Fredericton is ignored for political purposes.  In the meantime NB's autistic adult care and treatment remains as it was in 2005:



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

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

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

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

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

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

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

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


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


``We are supposed to have a decent standard of care for the sick and the vulnerable, but we don't."


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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


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

Keep autistic children in the province

Daily Gleaner (Fredericton NB)

Published Wednesday May 23rd, 2007

Appeared on page C7


This is a letter to Premier Shawn Graham.

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


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


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


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


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


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


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


Stephen Robbins
Woodstock, N.B."

Wednesday, October 18, 2017

October - Autism Awareness Month in NB - Adult Autism Care is Long Overdue


In Canada October is Autism Awareness Month



New Brunswick Is An Internationally  Recognized 
Early Autism Treatment Leader: 
BUT Has Nothing For Adults with Severe Autism


October 18, 2017

Premier Brian Gallant
Families & Children Minister Stephen Horsman
Health Minister Benoît Bourque

Dear Premier Gallant and Ministers Horsman and Bourque:

Re: Autism Awareness Month: Adult Autism Treatment and Care

October is Autism Awareness Month in Canada although that is sometimes lost in the Blue Light  celebrations of April n the United States.

I am sure you are all aware that New Brunswick has an early autism intervention program for which we can all be proud.  The NB program resulted from determined parent autism advocacy. It was developed at the UNB-CEL in Fredericton which established a program in both official languages that has been used in Saskatchewan and more recently in France. Conservative and Liberal governments contributed to the implementation and delivery of the early autism services. The Association for Science in Autism Treatment recognized the program as a model for consideration by other provinces and some US states. 

Parent autism advocacy also resulted in the training of approximately 500+ teacher aides/ education aides and some accommodation of autistic students in learning environments appropriate for their severe autism challenges.  Parent autism advocacy also resulted in the reversal of the decision to close the Stan Cassidy Centre Autism Team which provides consultation up to age 16.    

Nothing meaningful has been done though to address the very serious issues facing adults with autism in NB.  …. NOTHING.   In 2010 Professor Emeritus (Psychology) Paul McDonnell articulated the need for an adult autism network comprised of autism specific group homes located in communities around the province and a centre to provide the training and oversight for staff in the group homes.  A further extremely important function would be to provide permanent residential care, treatment and continuing education in a modern setting for those with severe autism challenges.  In a meeting two years ago then Minister of Social Development Rogers in the presence of Department advisers appeared to give careful consideration to a detailed proposal presented by Paul McDonnell and parent autism advocates. 

Since the meeting with Minister Rogers nothing has been done to advance the development proposed.  I ask you again, and will keep asking you, to stop ignoring the needs of adults with autism who can not be provided for in the community facilities that now exist.

I have been a parent autism advocate for more than 18 years plus.  I was pleased with the early autism intervention program developed for autistic children even though the program arrived too late for my severely autistic now 21 year old son to be eligible. 

If your government does not intend to work on and develop the adult autism network please advise.

Sincerely,


Harold L Doherty
Conor’s Dad
Queen Elizabeth II Diamond Jubilee Medal Recipient (Autism Advocacy)

Saturday, October 7, 2017

Psychiatrist Keith Ablow MD Claims Las Vegas and Several Other US Shootings Implicate Autism Disorders



I never head of Doctor Keith Ablow until a few minutes ago. He is according to Wikipedia a Psychiatrist, television personality, author and contributor on psychiatric issues for FOX News channel and "The Blaze". The Wikipedia article points out that Ablow has been involved in several political controversies because of his expressed opinions.  Dr. Ablow has a blog called Res Publica in which he talks about the recent Las Vegas massacre and the possibility that the perpetrator of that massacre might have had Aspergers' Disorder.   


In Did Stephen Paddock Have Asperger’s Disorder? Does That Explain What He Did?  Dr. Ablow asserts that "The explanation for the carnage in Las Vegas may be as mundane as this: Stephen Paddock may have had Asperger’s Disorder—part of the spectrum of autistic disorders."  Dr. Ablow goes on to explain his speculation on various aspects of Paddock's life and connects them, in his opinion, to Aspergers' Disorders.  He also qualifies his speculation by pointing out that he had never met Paddock. He then goes on to state some very sweeping conclusions about persons with Aspergers' and other Autism Disorders:


"Many patients with Asperger’s Disorder become progressively more enraged as they note their tendency to fail in relationships, to lose employment and to lack the ability for joy.  And, sometimes, that feeling of being on the outside of everything makes them want to destroy everything.
I know this from my 25 years practicing forensic psychiatry, including my treating many people with Asperger’s. Some of these people shared with me thoughts of harming many others, and I took the proper precautions to prevent that.
Asperger’s Disorder or other disorders on the autism spectrum have, in  have, in fact, clearly been implicated in mass murders such as Sandy Hook, Virginia Tech and Aurora, Colorado.
I don't know if Dr. Ablow's claim that it is a FACT that autism spectrum disorders have clearly been implicated in other mass murders is correct. I am the father of an adult son with severe autism, intellectual disability and epilepsy.  My son is not even remotely capable of engaging in such planned activities as the Las Vegas massacre but I am concerned that Dr. Ablow has painted autism disorders as factually connected to several massacres.  
If Dr. Ablow's claim is accurate then so be it but I have never heard it before. I hope that other medical professionals either confirm, qualify or contradict his assertion. 

Sunday, October 1, 2017

UNB Fredericton's Internationally Recognized Autism Expertise



UNB Fredericton, and NB, have enjoyed international recognition for its developing autism intervention expertise since the mid 2000's, The early intervention training program UNB developed was used to implement a provincial early intervention program that was soon recognized by the Association for Science in Autism Treatement in the US. UNB Fredericton has also achieved recognition in Europe.


Recently UNB-CEL Fredericton in partnership with Autism Connections Fredericton brought Princeton adult autism expert Dr. Greg MacDuff to Fredericton to speak for 2 days about adult autism care and treatment models he developed, evidence based autism treatment and adult autism principles generally. I was pleasantly surprised to learn that the PNB had also helped bring Dr. MacDuff to Fredericton and to see Families and Children Minister Stephen Horsman as the introductory speaker. In addition there were a number of senior NB government employees in attendance at the event. 

During the 2 day session I also learned that UNB was now involved in the provision of autism intervention programming in France. I checked on the UNB-CEL web site and found the following information ... another testament to the internationally recognized autism expertise which UNB Fredericton is continuing to develop:

April 5, 2016

UNB partners with Université Blaise Pascale to license the autism intervention-programming curriculum


UNB has partnered with Université Blaise Pascale to license the autism intervention-programming curriculum, which will be re-designed for target employment in France. All developed curriculum will be co-shared for future opportunities of both institutions.
“We are very proud of the reputation UNB has and continues to build and expand upon on the autism and behaviour intervention front,” said Trisha Fournier-Hoyt, director, Autism and ABA training at UNB College of Extended Learning (CEL). “We continue to refresh and repurpose our programming to meet the needs of training partners across the world.”
Université Blaise Pascale has been charged with the development of a countrywide education strategy to provide an online autism intervention program for existing licensed psychology professionals in France. 
UNB has also achieved licensing recognition as a post secondary institution in France allowing UNB to provide education to students sponsored directly. This license was fostered through the partnership between UNB-CEL, l’Association Actions pour l’Autisme Aspergers France and the UNB-IRO.

Thursday, September 28, 2017

Autism and Conor's ABA Based, Outside the Mainstream Classroom, Inclusion



These pictures were taken 7 years ago, September 28, 2010. Conor had been receiving evidence based ABA education OUTSIDE the Classroom. He did engage in activities involving other students such as apple picking. 

As the pictures indicate Conor was very happy as he is to this day. He did not become a robot because he received evidence based ABA instruction as some ill informed critics of ABA allege. Conor's autism and learning challenges were accommodated OUTSIDE Gordon Porter's "everyone in the mainstream classroom" inclusion philosophy. Individualised instruction outside the mainstream classroom plus activities with other students that Conor could enjoy. Worked for Conor!




Tuesday, September 19, 2017

NB Adult Autism Care - Autism Spectrum Village Proposal

UPDATE:  Dr. Gregory MacDuff 
 Adult Life With Autism Spectrum Disorder
UNB Fredericton Wu Centre

Dr. Greg MacDuff presentation on Adult Life With Autism took place yesterday and it was  excellent.  This parent learned a lot yesterday including many points I plan to use in caring for my adult son with severe autism disorder.  

I know from discussion that many other parents and professionals were also very happy with the days events and the excellent presentation by Dr. MacDuff.  I did note there were a handful of people who promote non evidence based approaches to educating and caring for autistic children and adults and I hope they learned enough to open their minds.  

The excellent presentation by Dr MacDuff continues today with 3 question sessions organized around government, professional service providers and parents.  

The Adult Life With Autism Spectrum Disorder is an excellent example of why UNB-CEL and Fredericton itself have so much to offer in the establishment of an adult autism centre to provide training and oversight of a network of autism group homes around the Province of New Brunswick.  

NB achieved international recognition when it established the early autism intervention program. It is time, it is past time to take that accomplishment to the adult autism level.



UNB Psychology Professor Emeritus Paul McDonnell, clinical psychologist, and mentor to many autism parents in NB is the intellect that triggered the creation of the internationally recognized early autism program in NB. 
    
In a 2010 CBC interview McDonnell drew the attention of the NB public to the need for autism specific adult services.  McDonnell proposed an autism network with group homes in communities around the province organized around an autism centre:

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 supervisionThat 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)


McDonnell repeated the principles of his 2010 CBC interview and elaborated on them in The Proposal for An Autism Spectrum Village, May 14, 2015.  The proposal again reiterated the need for an enhance group home autism network with a centre in Fredericton near the autism expertise that has been developing here:

It is therefore imperative that New Brunswick establishes an Autism Treatment and Residential Centre. The centre should be situated in Fredericton so that it is physically close to regional autism expertise at the UNB-CEL autism program and the Stan Cassidy Centre. The Centre would provide treatment for all autistic adults who are too old for treatment at the Stan Cassidy program and permanent residential care for the most severely autistic some of whom have been sent to the Spurwink Facility in the State of Maine and to the Restigouche Regional Psychiatric Hospital in Campbellton. Autism specific group homes around the province are required with autism trained staff and oversight from the Centre.

 In this sense, the model proposed could be characterized as a “satellite” model in which the centre in Fredericton would be linked directly to a number of satellite homes around the province. Medical issues commonly associated with autism disorders including epilepsy and depression would also be treated in the context of persons suffering from autism and the extra challenges it presents to treating those common co-morbid conditions.

 McDonnell, autism parent advocate Cynthia Bartlett and I all met July 14, 2015 in a meeting with then Social Development Minister Cathy Rogers.  Minister Rogers seemed genuinely interested in the Autism Spectrum proposal and was assisted by several advisers. 

 The optimism faded though when Minister Rogers was replaced by Minister Stephen Horsman who is also the MLA in my home riding of Fredericton North. I requested a meeting with my MLA but he seemed disinterested in any autism proposal and made it clear that he was OK with sending severely autistic adults to the Registigouce Regional Psychiatic in the City of Campbellton a city which is literally on the Northern NB border with Quebec.  In Minister Horsman's "reasoning" (and that of Restigouche MLA Don Arseneault) it was fine to send severely autistic adults to Campbellton far from the large bulk of NB families because some from the North have had to travel south for services.  This mentality was identified by former Liberal Health Minister Mike Murphy in the context of the youth mental health fiasco which was located in Campellton as being a political decision by MLA Donald Arseneault who weilded considerable influence in the Gallant Liberal government. Jobs in Campbellton trumps health and well being of autistic adults including my son Conor who like me is represented by Minister Horsman as our Fredericton North MLA.

Tomorrow will see a full day presentation on adult autism by a distinguished expert from Princeton Dr. Gregory MacDuff. 

Hopefully exposure to intelligent and principled expert information will encourage the Liberal government to establish a network of autism specific group homes with a centre in Fredericton, one which would be both centrally located, reducing to the maximum extent possible travel distance for families and be in close proximity to Fredericton's autism expertise.  

Hopefully. 

 I am not holding my breath but I have to continue to hold out hope for my son Conor and his future well being.


Some Adult Severe Autism Reality for NB Politicians


Autism mother and advocate Cynthia Bartlett - R
Ernie Steeves, PC Party MLA - L


Cynthia Bartlett, autism mother and advocate, and Ernies Steeves, a PC MLA who has shown a sincere interest in autism including adult autism residential care issues' are shown above at the NB Legislature the day of an autism protest.  

Yesterday Cynthia Bartlett, who knows what she is talking about, who has lived the challenges of providing care for an adult autistic loved one, posted a message on Facebook which was compelling and on point.  It is a message that government officials attempting to address autism issues in NB should read and not, as they often do, dismiss as irrelevant because it does not suit various political agendas:

Cynthia Bartlett
Saint Stephen, NB ·
Nothing has happened at all for the whole of my time in Canada since 2000 for long term, appropriate, therapeutic, professionally supported long term care for severely affected autistic adults who can also have comorbid conditions such as epilepsy. 
Care becomes very difficult for aging parents and there is evidence that the parents health due to the intense care is affected, full employment becomes very difficult and finances become stressful. These parents are devoted, but exhausted and very worried about the family's future, mostly their adult child's should the parents become too weak or in fact pass away themselves. 
So millions gets spent without a thought on restoration of historical buildings, "infrastructure " and additions to city hospitals at the expense of full services at rural hospitals (also needed for those with emergency needs such as epilepsy and self harm). But the vulnerable amongst us are compromised despite several attempts by advocating parents and MLAs. This is not constitutional, flat out, and not acceptable from any government.