Premier Gallant Will This Government Address the Needs of Autistic Adults for Residential Care and Treatment in 2017?

The Daily Gleaner article set out above, from January 17, 2011. indicates that autism advocates would fight to get a new treatment centre built.  So far the PNB continues to ignore the need for an autism treatment and residential centre and group home network. 

December 31, 2016

Premier Brian Gallant
Premier of New Brunswick and Minister
Responsible for the Premier's Council
on the Status of Disabled Persons


Re: Adult Autism Residential Care and Treatment in New Brunswick ; In 2017 Will Autistic Adults Remain Forgotten?

As this year draws to an end and a new year approaches  I hope  that this government will not neglect the  education, residential care and treatment needs of New Brunswick adults with autism disorders including and particularly those with severe autism and related disorders. 

I am the father of a 20  year old man with Autistic Disorder, assessed with profound developmental delays who, like many with autism disorders also suffers from epileptic seizures. .  I have, because of his condition, been an active autism advocate in New Brunswick over the past 18 years. New Brunswick has enjoyed much success in addressing preschool and education needs of autistic children and youth in recent years taking an evidence based approach and we have done it in both of our official languages. These advances began under the government of Premier Bernard Lord and grew during Premier Shawn Graham's term in office. 

I am pleased to see that this government is working to improve the early autism intervention program that has already garnered international recognition.  I can speculate but not truly understand though why successive governments have seen fit to disregard the interests of adults with severe autism disorder by housing them on the grounds of a youth correctional centre and general hospitals, sending them to a centre in the Maine, USA  and by sending them to the Restigouche Psychiatric Hospital in Campbellton  far from most of their families and the autism expertise that has been developed, and continues to develop,  in Fredericton.  

The success that has been enjoyed with autistic preschoolers and students stands in stark contrast,  to the lack of progress in helping NB's autistic youth and adults who are severely disabled by their disorders and who have need of residential care and treatment which have not been provided in any meaningful sense in New Brunswick.

In 2005 the national media reported that an autistic New Brunswick youth was being held on the grounds of the Miramichi youth correctional facility. At that time NB autism advocates had already been advocating for several years for a modernized residential care and treatment system for NB youth and adults. No significant progress has been made over the past 15 years. 

During the 2010 election campaign Professor Emeritus (Psychology) and Clinical Psychologist Paul McDonnell was interviewed by CBC and described a comprehensive modernized approach to autism residential care and treatment:

"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."

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."

The model described by Paul McDonnell has been described and advocated for in meetings with senior civil servants over the past decade and a half but no action has resulted. Today we still have autistic adults living in  in a variety of ad hoc accommodations. The most seriously challenged persons live in the psychiatric hospital in Restigouche far from families and from the Fredericton based autism expertise.  The current group homes lack autism trained staff . 

We need a modernized, centrally located facility that could provide treatment and permanent residential care for those most severely disabled by autism disorders and community based residential facilities around the province with properly trained staff. In 15 years there has been no progress in addressing the residential care and treatment needs of autistic youth and adults. 

I respectfully ask that your government begin efforts, in 2017, to provide an evidence based system, comprised of a central autism facility and a group home network, as described by Dr. McDonnell, that will address these needs and provide a decent and humane quality of life for our autistic youth and adult population.

Mr. Premier please reply directly, not through communications staff, and advise whether your government will take action to begin addressing the needs of adults with autism including those with severe autism and related conditions in 2017.

Respectfully,



Harold L Doherty
Fredericton, New Brunswick
hldoherty5463@gmail.com

Prime Minister Trudeau and Premier Gallant: Autism Is a Complex Health Issue For Consideration in Your Negotiations

NB Premier Brian Gallant Campaigning with Prime Minister Justin Trudeau During the 2014 NB Election;  Photo by Harold L Doherty

 Dear Prime Minister Trudeau and NB Premier Gallant:

Autism Is a Complex Health Issue For  Consideration in Your Negotiations

Media reports indicate that the Province of NB and the Government of Canada are "going it alone" on negotiation of health care funding. I have been advocating in NB, along with other parents and concerned academics and professionals,  for evidence based autism treatment and services for persons with autism disorders and I urge you to specifically consider negotiating both funding of medicare for evidence based autism services and an adult group home network with a center in Fredericton for permanent care of those with severe autism disorders so that they can live near their families in facilities with autism and related disorders expertise. 

 Here in NB the government has responded well, to parent advocacy,  at the early intervention level with its internationally recognized early program established by former Premiers Lord and Graham. Premiers Lord and Graham also initiated the training of education aides and resource teachers. Consultation for evidence based applied behaviour analysis has also been provided up to age 16. Given that autism disorders are complex life long neurological disorders often accompanied by intellectual disability and epilepsy it is very unfortunate that in NB the Department of Health has not worked with Child and Family/Social Development to establish a group home  network around the province, close to families and specific to autism with a center in Fredericton to provide training, oversight to the group homes and for those severely affected by autism and related disorders, including my son, a permanent residence.  

Provision of medicare funding of ABA coverage for autism should be a component of the autism group home network and center and should be considered in your negotiations.  The Liberal Party of Canada passed a resolution supporting full funding for medicare coverage of applied behaviour analysis (ABA) for autism spectrum disorders by amendment of the Canada Health Act at its Winnipeg Convention 2016. It is my understanding that support for the resolution was very strong including prominent Liberal Bob Rae who I know first hand from discussions in the kitchen of the late Andy Scott and in a Toronto meeting with Medicare for Autism Representatives, has long had a strong interest in autism issues.

Image from Bob Rae, MP! 

@BobRaeMP on Twitter

Please negotiate full funding for applied behaviour analysis for autism in NB for autistic persons throughout the lifespan.  The availability of ABA training at the adult level would be a major component of a serious, humane attempt to address the life time challenges facing adults with complex autism disorders.

Respectfully,

Harold L Doherty

Conor's Dad

Queen Elizabeth II  Diamond  Jubilee Medal Recipient (Autism Advocacy)

Member of the Board of Directors of Medicare for Autism NOW!

New Brunswick Preschool Autism Intervention Program Receives Boost - Adults with Autism? Still Invisible

Left: My son Conor As I See Him

Right: My son Conor as the PNB Sees Him

I am happy to see the news release posted below outlining the boosts to NB's early intervention program.  The original early intervention program was provided by UNB-CEL when the Lord and Graham governments responded to persistent parent autism advocacy.  As advocates we knew early intervention was the important place to start even though our autistic children would be too old for the early program by the time it could be established. We were also able to get some progress in the school system.  Adult autism care and treatment, particularly adults with severe autism related challenges,  has been largely ignored by the PNB which has preferred to send severely autistic adults to our northern border to the psychiatric hospital in MLA Donald Arseneault's riding.  Their distance from families and lack of autism expertise are of no import as autistic adults like my son above remain largely invisible to our NB government. 

I am posting below the Education and Early Childhood Development Preschool autism intervention program notice in full.  Hopefully someday the PNB will start providing humane care and treatment to autistic adults particularly those with severe challenges.

.....

News Releasey 

Education and Early Childhood Development
Preschool autism intervention program improved and funding increased
20 December 2016

FREDERICTON (GNB) – The Department of Education and Early Childhood Development is introducing an enhanced model for the Preschool Autism Intervention Program and increasing funding.

“In New Brunswick, we are fortunate to have an intervention program that has been recognized nationally and that makes a real difference in the lives of children with autism spectrum disorder,” said Education and Early Childhood Development Minister Brian Kenny. “There are no waiting lists and every child with autism begins receiving services as soon as they are diagnosed. We know that we can make this program even better through these improvements which will increase funding and standardize services across the province while incorporating new evidence-based practices.”

Improvements include:

Providing additional funding per child for services each year, increasing the average funding from $27,500 to almost $33,000 per child.
Providing training for parents to increase their involvement.
Aligning the new model with the school districts to ensure that children are served equally throughout the province and have an easier transition to school. This means that children will receive services by the agency in their school district.
Increasing wages and travel reimbursement for intervention staff, aimed at reducing turnover and improving services.

Increasing the quality of service to children through a pod staffing model that serves 25 children with set ratios of professional to paraprofessional staff to ensure sufficient clinical supervision.

Using the Comprehensive Assessment for Learning and Independence and the Comprehensive Curriculum for Learning and Independence as assessment and intervention tools. These were developed by the Department of Education and Early Childhood Development and the Lovaas Institute in Minnesota and are currently being used for children in New Brunswick schools.

Providing training to all agency staff in new intervention strategies and tools to increase the rate of learning for children and help reduce staff turnover.
The province has also developed preschool autism online training which is available to personnel working with children with autism. This training will align with the online training for school professionals and is available across the Atlantic Provinces. It is provided through an interprovincial partnership as part of the Council of Atlantic Ministers of Education and Training. The development of the online training is a key element in the positive transition to school for children with autism.

“As part of our efforts to improve this service, we asked families currently using the program, experts, and service providers for their input to better understand the needs of parents and their satisfaction level with the program,” said Kenny. “These improvements are a direct result of the information gathered during those sessions.”

In conjunction with these improvements and to increase transparency and accountability, a request for proposals was issued for the delivery of the enhanced model for the Preschool Autism Intervention Program. The successful proponent, Danielle Pelletier Speech-language Pathologist Corp. DBA Autism Intervention Services, will begin offering services in February. In the meantime, children will continue to receive services from their current agency.

“I am very pleased to have this opportunity to provide preschool autism intervention services to children around the province,” said Danielle Pelletier. “I am looking forward to reaching out to staff in the existing centres to ensure a smooth transition, and look forward to sharing my passion and expertise with families participating in the program.”

Autism spectrum disorder is recognized as one of the most common developmental disorders affecting children in Canada and around the world. The Preschool Autism Program provides 20 hours of intensive behaviour intervention to preschool children with a diagnosis of autism. In 2015-16, this program served 816 children. The goal is to provide early intensive behavior intervention that reduces the features of autism for children. Intervention is most effective in reducing the need for future support when it is carried out intensively during a child’s preschool years.

In the 2016-17 provincial budget, funding to the pre-school autism program was increased by $1.3 million, for a total program budget of $17.2 million.

More information on autism services is available on the Department of Education and Early Childhood Development website.

Why Did New Brunswick Abandon Its Severe Autism Adult Residential Care Commitment to My Son and Other Severely Autistic Adults?

1.The PNB Commitment to Severely Autistic Adults

Mark Barbour, then a Department of Social Development spokesperson   stated in a 2011 Aquinian article by Karissa Donkin then a St. Thomas University journalism student, now a CBC journalist "What resources are available when you’re growing up with autism?":

"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."

[The Full article by K. Donkin follows this commentary as Exhibit A]

Above My Son  Conor 2011, 2015, 2016

No Progress has been made, no action taken, on the NB Department of Social Development statement that it wished  to build an autism residential facility for severely autistic adults who can not live on their own. 

In fact the Department now called the Department of Families and Children has taken no action to recognize the importance of Family by locating a youth with complex needs centre in Campbellton far from most families.   

Department of Families and Children Minister Stephen Horsman actually informed me in a meeting this year that Campbellton was not too far for families in Fredericton (and by implication SJ, Moncton, St. Stephen etc) to drive to Campbellton each time they wished to be with their autistic family member. 

Not a big deal.  He himself had driven there once. 

2. Families ARE actually important for severely autistic adults, as is Expertise and therefore - A Central Location in Fredericton

Families are actually important.  The government has changed the name of the social services department yet again and included reference to families in the new title, so one would think the understood that fact.  They don't seem to realize though that an intellectually challenged, severely autistic adult would benefit from frequent family contact and interaction, the more frequent the better.  Centralization helps increase family contact just as it was once viewed as important to the location of a legislature. Centralization, placement of an adult autism centre in Fredericton also makes sense because autism expertise has been developing in Fredericton.  The autism group homes could be placed around the province to be close to families and could receive training, oversight and treatment on a temporary basis who would not require permanent care and residency at the Centre in Fredericton.

3. So Why Hasn't NB Acted to Develop An Autism Facility for Severely Autistic Adults?

In a previous comment I pointed out the role politics played, according to 2 prominent NB liberals, Bernard Richard and Mike Murphy in the government decision to locate a youth with complex needs centre far from most families in Campbellton.  I expressed my opinion that politics has also prevented the  development of the facility referenced by Spokesperson Mark Barbour above or the autism centre and network advocated by NB autism expert Paul McDonnell and myself and other experienced parent autism advocates in NB.  

An initial meeting with then Social Development Minister Cathy Rogers in 2015 left me feeling optimistic about the possibility of progress on adult autism issues. She came to our meeting with senior aides in attendance, asked serious questions, made no negative, dismissive remarks and in fact made suggestions about what might be needed to move forward. A year later in my meeting with Minister Horsman none of those factors were present and there is no evidence that the current Gallant government is taking adult autism issues seriously.  

Whether it is politics, ignorance or both there is no legitimate explanation of which I am aware for abandonment of NB adults, particularly those with severe autism, by the Gallant government. 

Exhibit A 

What resources are available when you’re growing up with autism?                                                        By Karissa Donkin, The Aquinian 

Fredericton’s Second Cup is loud and busy on a Tuesday afternoon and Conor doesn’t like it.

Conor is 15 years old and looks the part of a boy becoming a man. He’s nearly six-feet tall and growing sideburns. His blue eyes are staring out of the coffee shop’s window, where he’s watching a raging snowstorm blanket the downtown streets.

Every few minutes, when the noise gets to be too much to handle, Conor lets out a small scream and bats his ears with his hands.

The only person who can hold Conor’s attention is the man sitting across from him with the same blue eyes.

Since Conor was diagnosed as severely autistic and intellectually disabled 13 years ago, Harold Doherty has worked tirelessly to lobby the government to better support autistic children like his son. For the past five years, he’s operated a blog called Facing Autism in New Brunswick.

“There were no services here in New Brunswick … People had to stay active. There was a group of parents who did and I was one of them.”

But Doherty, a lawyer, is now in the fight of his life. As Conor nears adulthood, Doherty’s greatest worry is that the province doesn’t have the proper services for someone like Conor to maintain a high quality of life when they leave the public school system. He’s afraid Conor will fall through the cracks.

“My big fear is that he will simply be put into a room in Campbellton in the psychiatric hospital without any real life to live once I’m too old or deceased.

“On the other hand, I don’t want him dumped into one of the group homes they have.

“They don’t have staff trained to help him and they don’t have enough programs to really work with someone like my son.”

***

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.

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.”

***

Every school night before Conor goes to bed, he packs his lunch and puts it by the door.

Conor is in Grade 9 at Leo Hayes High School and loves getting up and going to school every day.

In elementary school, Conor used to come home with bite marks, a sign of frustration from being placed in a regular classroom. Now, Conor studies in a resource room at the high school.

A severely autistic teenager like Conor thrives on the structure of the school day and he struggles when he doesn’t have that structure.

“When school days are missed for different reasons, it’s challenging for him,” Doherty said.

Doherty worries about how to manage Conor’s behaviour when he’s finished with the public school system.

“It’s difficult as parents to give him the structure that he gets at school.”

Many members of the Autism Society of New Brunswick are parents who share similar worries. Doherty organized the society’s first meeting in two years in January.

The parents have been lobbying the government to reform autism services for years. They started out lobbying for services for the youngest kids and saw an autism intervention training program developed at the University of New Brunswick’s College of Extended Learning in 2004.

“We know that wasn’t going to help our children. My son never got the benefit of those (pre-school) services. But it was the right thing to do,” Doherty said.

The parents moved on to advocating for better services at the grade school level and have spent the last couple of years focusing on adult services.

“It’s tougher to get that same emotional response when you’re talking about adults.”

Many of those same parents got burnt out trying to manage careers, autism advocacy work and their families, Doherty said, and the society was disbanded for two years.

But with the clock ticking and Conor approaching adulthood, Doherty knew it would be necessary to have a society to communicate with government.

“Because we don’t look for compensation, we’re not in a conflict of interest. We can’t be pressured into representing our children to the fullest of our ability.

“That’s why we were able to keep pushing ahead when other people pulled back. We know how important it is.”

McDonnell, who has worked with parents to help them understand autism, knows how important it is for parents to be advocates.

“If you don’t (advocate), you simply won’t get the services.”

***

Six weeks ago, Conor had a meltdown in the middle of the night.

Around 2:30 a.m., Doherty woke up to find his son harming himself. Clearly frustrated, Conor was slapping himself in the face and head.

“I tried to talk him out of it and manage his behaviour and it didn’t work this time.

“I tried to grab his arms to restrain him from hurting himself … he lunged forward and gave a good bite on my bicep.”

This is a rare example of a time when communication broke down between Doherty and his son, making it hard for him to manage his son’s behaviour.

Doherty suspects Conor’s frustration that night came from not understanding the teenage changes going on in his body.

The incident serves as a reminder of Doherty’s race against the clock to ensure his son will be able to live his adult life with dignity.

While Doherty is worried about the future, he maintains he isn’t going anywhere soon. Spending time outdoors and running around with Conor, who has a lot of energy, is keeping him healthy and young in body and spirit.

“(Conor) has his frustrated moments but those are far outweighed by the moments he’s just happy and smiling a lot.”

No Adult Autism Centre & Network in NB Where Politics Trumps Health & Well Being - Part I

Campbellton-Dalhouse MLA Donald Arseneault, shown in the CBC photo above, and his political influence in the NB Liberal Party, was fingered by his former Liberal party colleagues Bernard Richard and Michael Murphy as the the force behind the Liberal government's decision to build a complex needs youth facility in Campbellton, far from most families in the province, particularly those in Fredericton, Saint John and Moncton.  It is my own personal belief that Arseneault is behind the refusal of the Liberal government to establish an adult autism centre in Fredericton the home of NB autism expertise and close to many families in NB unlike Campbellton-Dalhouse, where severely autistic adults are sent to live their lives far from families in a location on NB's Northern Border. 

Campbellton sits on NB's northern border in the riding of Liberal cabinet minister Donald Arseneault. Adults with severe autism and related conditions will, because of Arseneault's influence, be sent to live in the Regional Psychiatric Hospital in Campbellton far from most families in the south and far from the autism expertise developed in Fredericton. 

Former Liberal cabinet colleague Michael Murphy pulled no punches in identifying Arseneault as the source of the bad decision to place the youth centre in Arsenault's riding:

"As a former minister of health I can tell you how hard it is to get specialists to go to our urban centres versus Toronto — let alone Campbellton," wrote Murphy in one of a series of tweets that suggested the Gallant government was putting "politics first, kids second" with the decision. ....  Murphy blamed the decision on Liberal party politics and pointed to his former cabinet colleague Donald Arseneault as the likely source of the decision. Arseneault is the current minister of energy and mines and represents the riding of Campbellton-Dalhousie in the legislature. Arseneault made the actual announcement in Campbellton on Saturday, rather than Health Minister Victor Boudreau. "Power of Donald Arseneault is evident by this," tweeted Murphy. "The location away from family for most young patients may only aggravate the condition.  But this government is intensely political."

Michael Murphy Q.C., former Minister of Health,  in "Bernard Richard slams choice of location for youth facility Putting mental health unit in Campbellton is 'worst' decision former youth advocate has seen in a while"

I added for emphasis the last section of the Murphy comments where he spoke a plain truth long stated by autism parent advocates on behalf of our autistic adult children ... Campbellton is a location far from family and from the internationally recognized autism expertise developed in Fredericton yet the Liberal government, instead of establishing the proposal for an autism centre in Fredericton as the centre for a network of autism specific homes around the province and near families, the government shovels our severely autistic adults into Arseneault's Campbellton riding Pyschiatric Hospital far from the families who are so important for their health and well being. 

In New Brunswick we became a Canadian leader in the delivery of early autism intervention services. We also made substantial progress in provision of autism training for education aides and resource teachers. Parent advocacy played a very significant role in both of those achievements as well as in pushing successfully to have the government reverse its decision to close the Stan Cassidy Centre autism team which provides consultation for autistic children and youth to age 16.  

In adult autism care despite our successes in early intervention and despite a well considered proposal by NB autism expert Paul McDonnell we have made no progress in establishing an adult autism centre in Fredericton where we have developed autism expertise as the basis for a network of autism specific group homes clearly advocated publicly by Professor Emeritus, Clinical Psychologist and autism expert McDonnell in a 2010 interview with CBC's Dan McHardie: 

"Our greatest need at present is to develop services for adolescents and adults," McDonnell writes.

"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

Among the reforms that the UNB professor is calling for is an enhanced group home system where homes would be connected to a major centre that would develop ongoing training and leadership.

The larger centre could also offer services for people who have mild conditions. But, he said, it could also be used to offer permanent residential care for individuals with more severe diagnoses.

"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," he writes.

"The focus must be on education, positive living experiences and individualized curricula. The key to success is properly trained professionals and staff."

- Paul McDonnell, Professor Emeritus (Psychology), Clinical Psychologist, Autism Expert

Why have we made no progress towards establishing the adult autism centre-network proposed by McDonnell in 2010? ? The answer is simple - politics - specifically NB politics which has been proven to put political considerations ahead of the health and well being of vulnerable New Brunswickers.  Politics, specifically the political influence of  Campbellton-Dalhouse MLA Donald Arseneault trumps the health and well being of severely autistic adults like my son Conor.