NB Adult Autism Residential Center – Information Protest at the Legislature – Weather & Autism Related Circumstances Permitting Thursday, June 30, 2016

My son Conor and I will, weather and autism circumstances permitting, be conducting an adult autism center information protest this Thursday June 30 at the Legislature. 

New Brunswick has received world recognition for it’s bilingual early autism intervention programs and families have moved to NB from elsewhere in Canada to obtain early autism  intervention services for their autistic children.  We have also made very significant gains in education with hundreds of autism trained education assistants and BCBA qualified resource teachers and assistants.  Despite the expertise developed in autism services successive governments have refused to develop the autism center and network recommended by NB autism expert Paul McDonnell in a 2010 CBC interview even though Department of  Social Development Media Representative Mark Barbour in a 2011 interview with then Aquinian journalist/student, now CBC journalist Karissa Donkin stated that the PNB wanted to develop an adult autism residential center to provide care for those with severe autism:

“There is a need for more specialized services for autistic youth and adults, whose behaviours or conditions are severely impaired.

“These individuals require services and supports designed to specifically meet their high care needs.”

The province wants to build an autism residential facility, which would provide permanent care for severely autistic adults who can’t live on their own, Barbour said.”

                                                                                                                                               

The expertise to provide the specialized services for autistic youth and adults exists in Fredericton where the early intervention programs were developed with UNB-CEL autism intervention programs, assistance from UNB Psychology were available and willing. The bilingual training has proven very effective.  But autistic adults have been sent far from the largest segment of the NB population at the Campbellton Regional Psychiatric Hospital on our Northern border with Quebec and in Spurwink, Maine in the United States.  Such separation from families can be harmful as discussed by NB autism expert Paul McDonnell in a 2010 CBC interview

“Autistic adults are often sent to privately run group homes or in extreme cases, sent to psychiatric care in Campbellton or  out of province.

“It’s fairly expensive to put people in group homes and if you have to send people out of the province then it’s much, much more expensive,” McDonnell said.

“If they’re placed far away from their families,  that creates a lot of hardship as well. A lot of people aren’t functioning at the level they could. They’re simply not having the quality of life they should be having.”

McDonnell thinks the province needs to train people to be prepared to deal with adults with severe behavioural challenges.

“They should have stimulating recreational, educational programs. That is absolutely essential.

“That’s what we need to aim towards is setting up a system where we have some really well-trained people.”

Harold L Doherty

Conor’s Dad

hldoherty5463@gmail.com

506 447-1592

NB Has Gone Backwards In Understanding and Commitment to Meeting Adult Autism Needs Since 2011

The province wants to build an autism residential facility, which would provide 

permanent care for severely autistic adults who can’t live on their own.

Mark Barbour, NB Department of Social Development spokesperson,

A Place for Conor, The Aquinian, by Karissa Donkin, March 24, 2011

Many politicians love to participate in Superhero Walks for Autism.  They get to actually have fun, along with the children on the walk, and then pose for publicity photos which imply that they are knowledgeable about autism and are working on the behalf of persons with autism.  Unfortunately such walks do not create any real autism awareness, or lead to needs being met; particularly needs of autistic adults.

In meetings with the Gallant Government's 2 Ministers of Social Development to date, including one held with Minister Stephen Horsman yesterday, there was civility and apparent understanding of the need to address adult autism needs.  It was clear yesterday though that no steps had been taken in addressing adult autism needs in the past year since I, along with NB autism expert Paul McDonnell and fellow autism parent advocate Cynthia Bartlett, met with then Minister of SD Cathy Rogers.  Minister Horsman yesterday actually made statements endorsing the role of the Regional Psychiatric Hopital in Campbellton and asked whether autism specific services were needed. An indication of the extent to which those statements indicate a regression in understanding of, and commitment to providing services to meet the needs of, autistic adults can be gleaned by reading information in a March 2011 article by Karissa Donkin then a journalist with the Aquinian.

On March 24 2011 an excellent article written in the Aquinian by then student Karissa Donkin (now a journalist with CBC after a tour with the Brunswick News papers) detailed the need for adult autism services in NB.  The following excerpt is from that article.  In the article Mark Barbour, then a Department of Social Developent spokesperson, stated very clearly that more had to be done to help autistic adults  including provisio of autism specific  services.  He also stated that the Province of NB wanted to build an autistic adult residential facility to provide permanent care for severely autistic adults who can't live on their own:

"Autism is a developmental disorder that affects a person’s communication and social skills. The severity of the disorder ranges from the severe form that Conor has to Asperger’s, a more mild form depicted in movies like Rainman. The Centre for Disease Control and Prevention says one in 110 children have autism. [The CDC now estimates 1 in 68 - HLD]

New Brunswick provides care both in a patient’s home and in residential facilities for more than 6,250 adults under 65 with disabilities, including autism, says Department of Social Development spokesman Mark Barbour.

But Barbour admits the province needs to do more to help autistic adults.

“There is a need for more specialized services for autistic youth and adults, whose behaviours or conditions are severely impaired.

“These individuals require services and supports designed to specifically meet their high care needs.”

The province wants to build an autism residential facility, which would provide permanent care for severely autistic adults who can’t live on their own, Barbour said.

Not only is the current system not comprehensive enough for adults with varying degrees of autism, but it’s also expensive, says child psychologist and autism expert Dr. Paul McDonnell.

Autistic adults are often sent to privately run group homes or in extreme cases, sent to psychiatric care in Campbellton or out of province.

“It’s fairly expensive to put people in group homes and if you have to send people out of the province then it’s much, much more expensive,” McDonnell said.

“If they’re placed far away from their families, that creates a lot of hardship as well. A lot of people aren’t functioning at the level they could. They’re simply not having the quality of life they should be having.”

McDonnell thinks the province needs to train people to be prepared to deal with adults with severe behavioural challenges.

“They should have stimulating recreational, educational programs. That is absolutely essential.

“That’s what we need to aim towards is setting up a system where we have some really well-trained people.”

Ernie Steeves MLA Moncton Northwest To Bring A New Motion for Adult Autism Care

Last year I spoke on the needed care for adults with Autism. It was turned down by the government. I have made a new motion that I hope will be debated in the next few weeks. This is the speech from last year. – Ernie Steeves, MLA, Moncton Northwest

The fight for needed services for adults with autism has been very difficult.  We have fno meaningful success in that fight in stark contrast to the gains made on behalf of early intervention and school services for NB autistic children and youth.  There have been few allies in the fight for adult autism services.  Dominc Cardy of the NDP has been a strong supporter of adults with autism outside the legislature.  In the legislature support for adults with autism has been sparse.  In the past year two strong advocates emerged from the Conservative Party - Jake Stewart who fought successfully for a young autistic man who was on the verge of being removed from his residential facility because he was about to hit an arbitrary age limit for remaining in the facility and Ernie Steeves who brought the motion in 2015 shown in the video above.  It is very encouraging to learn that Ernie Steeves will continue with a motion for adult autism care in the next sitting of the legislature. 

Below - Ernie Steeves at the Legislature, May 2015, with Cynthia Bartlett, Parent Autism Advocate

People Have Moved TO NB? Seriously? Yes! For Early Autism Intervention Services for their CHILDREN! We Can Do It For Autistic ADULTS Too!!

Unlike adult autism services where New Brunswick has failed to take comprehensive action  to provide professional, accessible adult autism treatment and services the PNB has received recognition for its early intervention services developed to the point that familes from elsewere have moved to New Brunswick so their children with autism disorders can receive evidence based early intervention. NB has developed early intervention and school based services for young persons with autism. Given the developed autism expertise why has NB refused to take action to develop adult autism care and treatment, particularly for those most severely impaired by their autism and related disorders?

Early intervention services in NB were featured in a Toronto Star interview with the Forsyth family who moved here from Toronto so their children could access New Brunswick's early intensive behavioural intervention.  

"It had taken months of referrals, paperwork and lineups just to get the boys assessed. Then came worse news: they would have to wait at least two years for provincially-funded treatment in Toronto.

Private therapy, which would cost tens of thousands of dollars a year, was out of the question for Forsyth and her husband Erik, a steelworker in the highrise building industry.

So they opted for a radical solution. Last winter, they packed up their three preschoolers and moved to New Brunswick after Forsyth learned the wait times there would be a couple of months.

A year later, Forsyth, 29, is homesick, but not sorry.

“It was either that or keep waiting in Toronto,” she says over the phone from the family’s rented duplex south of Moncton. “I couldn’t do that, it was too hard.”

Since last May, her 3-year-old sons have each been receiving 20 hours a week of intensive behavioural intervention delivered by two therapists in their home and funded by New Brunswick."

There have been informal reports of other families with autistic children moving to New Brunswick including some military families who sought postings to Base Gagetown so their children could access autism services. Further NB autism expert Paul McDonnell  noted years ago in a 2010 CBC analysis   that New Brunswick can be a leader in autism services (September 24, 2010)  David Celiberti of the Association for Science in Autism Treatement responded to the title in his commentary on the NB autism intervention model: ASAT Responds to Canadian CBC’s “N.B. Can Be a Leader in Autism Services (October 23, 2010)”.  In that article Dr. Celiberti stated:

"I read with great interest your recent article about the state of services in New Brunswick (“N.B. Can Be a Leader in Autism Services,” September 14, 2010). I do beg to differ about the title of the piece. New Brunswick is already a leader. To have amassed 800 trained agents of change in six years is nothing short of incredible and inspiring, particularly given the diversity of your province with respect to geography and language. Other Canadian provinces can look to New Brunswick for an exemplary model of how things could and should be for children with autism and their families."

New Brunswick has achieved acclaim for its early intervention and school autism services.  As one of the parents involved in advocating for those services I am very pleased but I am extremely disappointed with the lack of effort by our provincial governments with respect to providing the necessary adult autism care and treatment. In his September 24, 2010 article Professor Emeritus (Psychology) and Clinical Psychologist Paul McDonnell stated:

"What remains to be done? 

While we need to celebrate the achievements to date, we need to make a commitment to the needs of all families and all age groups. 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 behaviorally trained supervisors and therapists. Some jurisdictions in the United States have outstanding facilities that are in part funded by the state and provide a range of opportunities for supervised and independent living for individuals with various disabilities. 

The costs of not providing such services can be high financially and in terms of human costs. As a psychologist in private practice I know there are large numbers of older individuals who are diagnosed later in life with Asperger’s Syndrome that have no access to professional services of any kind. 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 can do much, much better. 

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. 

In conclusion, New Brunswick has one of the most advanced intervention programs in Canada for children who are on the autism spectrum and the benfits for the children and their families are exceptional. 

Many families have moved to New Brunswick for services and, as well, many professionals have moved here because of the opportunities provided by this program."

(Bold highlighting added - HLD)

New Brunswick established itself as a leader in early intervention and school autism services in Canada.  NB governments since then though have refused to develop the adult autism center and group home system as recommended by NB autism expert Paul McDonnell in his 2010 CBC analysis.  Money is not really the issue in my humble opinion.  Some costs can be recovered by inefficient and inadequate ad hoc services currently provided.  Hospitals, schools and other facilities scheduled for closing could be used to build the center and group homes.  Everyone except the most unfortunate lives in buildings. It is not generally the structure that makes a building undesirable it is how it is used and what kinds of services are provided in the building and with what kind of oversight that could be adapted to provide autism treatment and for those most in need long term, permanent in some cases, residential care for those most in need.  Properly trained professionals and staff could make it happen by providing security, education, recreation and positive living experiences based on the inviduals living there and  incorporated in the community.

It is long past time to make it happen. We have proven we can do it for early intervention and school services. We can do it for our autistic adults too, autistic adults like my son Conor.

The Long Struggle for An Autism Center and Facilities in New Brunswick

The struggle for a youth and adult residential center capable of dealing with all levels of autism severity and providing the expert treatment and care required has been going on for a long time as illustrated in this October 19, 2005, (As I stated in the article we had been advocating for better autism facilities in NB for several years before 2005) Toronto Star article about the youth who resided at the Miramich Youth correctional facility (in a visitor's apartment) until he was sent to Spurwink, Maine, USA.  

Given the costs of attendance at that location $2-300,000 per year per person it is difficult to understand why the inclusive, community focused Province of New Brunswick does not expand the acclaimed autism resources it has developed for children and students to severely affected autistic youth and adults.

Autistic boy kept in New Brunswick jail

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

Dear Premier Gallant: Will Your Government Finally Develop An Adult Autism Care Network In New Brunswick?

Photo of the New Brunswick Legislature by Harold L Doherty 2012

L: Brian Kenny, NB's New Education Minister
R: Harold L Doherty, Parent, Autism Advocate 
Adult Autism Center Advocacy Protest, NB Legislature, May 2015

Dear Honourable Premier Gallant, Honourable Ministers and other respected recipients:

I have been active for over 16 years in autism advocacy in New Brunswick for the simple reason that I have a son Conor, now 20, who is severely autistic with profound developmental delays and like many with his condition he also suffers from seizures including grand mal or tonic clonic seizures.   In adult autism care no significant system  gains have been made over the past 16 years. Group homes with untrained staff are still the norm along with temporary apartment settings, again with untrained persons providing oversight. The alternative, for more severely affected autistic adults, people with conditions very similar to my son, is a life spent in psychiatric care at the Restigouche Pyschiatric hospital in Campbellton.

My son currently resides with me and when I can no longer provide the care he needs he will in all likelihood be sent to the Restigouche Psychiatric Hospital in Campbellton on NBs northern border,  a 5 1/2 hour drive,  each way, from our home in Fredericton.  I am asking you and your ministers of health, social development, education and post secondary education to take action to provide the autism long term care network described by Professor Emeritus and Clinical Psychologist Paul McDonnell in a 2010 CBC interview.

Autism is shorthand for Autism Spectrum Disorder.  The Centers for Disease Control in the US, a highly respected authority, estimates that the numbers of persons with ASD is now approximately 1 in 68. The World Health Organization and another recent study estimate that 50% of those with autism also have intellectual disabilitiies.  Studies estimate 25-40% of persons on the autism spectrum also suffer from seizures.  A number of serious behavioral challenges often accompany the autism disorder diagnosis while anxiety and depression are also present in significant numbers. 

 On the CBC website in September 2010 Paul McDonnell offered a proposal to improve NB's adult autism care and treatment needs:

"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."

Paul McDonnell, CBC Analysis, September 2010

I would add that if this government will consider the model he proposes including the secure centre for the long term care of the severely autistic and for a source of expertise for the community based homes for less severely impaired autistic adults then Fredericton is the only viable location for the center. 

The Autism Society NB considered the location of such a centre many years ago and conducted a survey picking Fredericton for the following reasons:

1. Access to NB's autism expertise which is primarily located in Fredericton.

2. Fredericton can provide bilingual service as shown by the UNB-CEL Autism Intervention Training Program itself which provides instruction in both official languages. 

3. Central location.  Sending autistic adults to a general psychiatric hosptial on our norther border  does not assist families around the province in visiting with autistic family members receiving temporary care or residing in a professional autism center.

To those features I would also add cost savings.  Money has been sent in the amount of $200-300,000. per year, per person, to send a few autistic adults to Spurwink, Maine. I have no figures to provide for the variety of ad hoc solutions which currently exist but do not provide a solution for many adults with severe autism and autism related challenges but I understand as much as $50,000 per year may be required. Many more families would be able to afford the expense and time to visit their adult autistic children in a central location in Fredericton then if they have to travel a further 5-6 hours to visita at the general Restigouche Psychiatric Hospital in Campbellton.

As the father of a son with severe ASD, I ask that this government begin work as soon as possible to provide a center with professional expertise for treatment and long term residential care as described by Professor Emeritus (Psychology) and Clinical Psychologist Paul McDonnell, one that can provide expert assistance to the community based group homes around the province.  It could also result in cost savings for the PNB in providing effective, evidence based long term care to many live in a variety of settings and to parents who have to travel long distances to our northern border to see their adult children who reside their. 

The need for an adult autism treatment and long term care network  has been discussed for over a decade.  1 in 68 New Brunswick adults with autism can not afford to wait another decade before action begins to be taken. 

My son can not afford to wait any longer. 

Please take action now.

Respectfully,

Harold L Doherty 
63 Alder Avenue

Fredericton NB