Wednesday, January 04, 2012

A Place for Conor? New Brunswick and Its Community Cliché Addicted Bureaucracy Have Failed Severely Autistic Adults

The Ombudsman and the community living bureaucracy in New Brunswick can Connect all The Dots and hold as many cheer leading sessions as they want but none of them have done anything to address the need for decent residential care and treatment facilities for severely autistic adults in New Brunswick. 

When it comes to the need for modern properly staffed residential care and treatment for New Brunswick adults with severe autism disorders our community living cliché addicted government institutions have prevented all progress.

In 2011 Karissa Donkin, a journalism student at St. Thomas University met with me and Conor before addressing these issues head on in a well written piece of journalism: A Place for Conor.  For me, and for my son Conor, this was the autism story of 2011.  It asks a question I asked at a meeting of the Autism Society New Brunswick last year. It asks a question I have raised, with other parents of autistic children, in several meetings with New Brunswick government officials over the past 10 years. It is a question I have asked of the community living bureaucracy that has dominated the New Brunswick Human Rights Commission, the Ombudsman's Office and the Departments of Education, Health and Social Development.  Last year I raised the issue of adult residential care and treatment during the Ombudsman's public consultations. I might as well have been singing to my self in the shower. 

I participated in the center of excellence consultations organized by the Ombudsman's Office  in connection with the  Connect the Dots campaign. It was an orchestrated charade with the same cliches about "community" and "inclusion" and expressed hostility towards "bricks and mortar" centers that have prevented progress on evidence based autism issues for decades in New Brunswick. It was clear from the comments of those at the head table as well as NBACL head Clarence Box who moved to the table I was seated at that there would be no real centers considered during the consultations.

As we move forward in 2012, the need for a decent residential care and treatment system for NB adults with autism disorders remains as it has over the past decades.  The past several decades have been dominated by a community living  bureaucracy  whose ideas were framed decades ago and which has not moved on to address the need for modern evidence based residential care and treatment needed by some people, including my 16 year old severely autistic son.  

With no disrespect intended the fact remains that the community living bureaucracy, including the current occupant of the Ombudsman's office, doesn't have a clue about what is required to move severely autistic adults out of psychiatric hospital and general hospital ward care and into modern residential care and treatment facilities.  They refuse to consider meaningfully any ideas which conflict with their tired community living ideology, an ideology which began around the time my childhood heroes Neil Armstrong and Buzz Aldrin walked on the moon. It is an ideology whose adherents have remained inflexible and dogmatic in their thinking. It is an ideology whose adherents have failed, despite years of the highest level of influence in our government institutions, to help the most severely disabled autistic adults.

New Brunswick has a need for autism specific residential care and treatment facility. Our province has answered the call in early intervention and to some extent in providing autism specific education services in our schools. It has been accomplished despite the determined opposition of those with a near religious belief in community living cliches.  UNB-CEL Autism Intervention and the Stan Cassidy Centre in Fredericton have developed some excellent early and school years intervention services. We have natural living environments in the capital area. There is no excuse for not beginning a serious effort to construct a professional modern living centre for autistic adults in our capital region. None at all.

Karissa Donkin's article, A Place for Conor:

"A Place for Conor

What resources are available when you’re growing up with autism?

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.”"


John Robison said...

As you point out, adults with autism and intellectual disability have always been with us. The difference is that today's young adults are coming of age at a time of rapidly increasing understanding of the different disorders that lead to adult disability, and with the pressure from parents like you, we can hope for better conditions for Conor and all like him.

I wrote a story on my own blog the other day stressing the need to ensure kids with greater disability are not forgotten as this AS umbrella expands. It's good to see parents like you out there advocating for improvements in adult care facilities.

There are some really good facilities out there - I see them when I travel. If you ever have an opportunity, check out the Women's League of Brooklyn. The organization is not what the name implies - they run a bunch of group homes for (mostly) Hasidic Jews w/ severe autism in New York.

Having been in quite a few group home environments I was struck by the sense of peace among the residents I met there. I wonder if the strong Jewish affiliation plays a part; whatever it is, those people have a true community that could be a model for NB or anywhere.

Unknown said...

I read your blog comment John. Thank you for speaking to these issues.

Cameron said...

What's going to be involved for us to push this forward Howard. As most parents of Autistic kids.(I have two...yikes), I'm scared to death for the future. I also have no resources and little time, as I'm sure is the same for most of us. Regardless this is something that makes sense. What is the best course of action?