Sunday, January 15, 2012

NB Ombudsman's Centre of Excellence is a Fantasy That Will Not Fill Residential Care and Treatment Needs of Severely Autistic Adults

The Bricks and Mortar Office of the Ombudsman 548 York Street,
Fredericton,New Brunswick, at the Staying Connected consultations,
in which I participated, Ombudsman Bernard Richard and NBACL
President Clarence Box both dismissed Long Term Residential
Care and Treatment Facilities for Autistic Youth and Adults as "Bricks and
Mortar Solutions" The Centre of Excellence which the Ombudsman's
office has promoted so heavily is not an actual center, it is a
bureaucratic fantasy which will not provide a place to live and receive 
treatment for severely autistic youth and adults.

As a former Autism Society New Brunswick representative I  met with government officials on several occasions to stress the need for evidence based, secure, autism specific residential care and treatment facilities for New Brunswick adults with severe autism disorders.  Invariably government officials in both Liberal and Conservative administrations have declared that they were studying the issue but they have never taken concrete action to establish a modern, decent, facility with autism trained staff or with access to ongoing autism treatment.  I have on this site  posted several times over the past 6 years about the lack of adult residential care and treatment facilities for autistic adults.  

Still nothing happens. Part of the problem lies with government and part of the problem lies with the community living ideology which governs education, health and social development departments and institutions like the NB Human Rights Commission and the NB Ombudsman's Office under its various names.  All of these institutions talk about providing care in the community and talk about temporary care for the more severely autistic in more institutional settings. But they have no grasp of the realities facing severely autistic adults, none whatsoever, and NB youth and adults with autism pay the price for their autism ignorance.

Since my last post and email on this subject CBC New Brunswick reported the situation of an 18 year old New Brunswick autistic man who checked himself out of Centracare in Saint John in winter weather wearing only a hospital johnny shirt:

"The family of an 18-year-old with autism, who's currently being housed at the Salvation Army hostel in Saint John, is calling on the province to do more to help people in his situation.
The young man, whom CBC News has chosen not to name, has mood swings and behavioural issues, including violent outbursts.
He has been unable to remain in a group home and last Sunday, he checked himself out of the long-term mental health facility Centracare, wearing only a Johnny shirt in the subzero temperatures."
This 18 year old autistic man unfortunately falls squarely in the middle of the gap that exists in New Brunswick between group homes and psychiatric hospital care. CBC News deserves some credit for reporting this story but in their report they asked for feedback from former Ombudsman Bernard Richard. Mr. Richard is a very courteous and gentlemanly career politician and bureaucrat but he is also a person who lacks any obvious understanding of the realities faced by youth and adults with severe autism disorders.  In his comments on this Saint John "johnny shirt" incident Mr. Richard talked about the alleged "centre" recommended by the Complex Needs process which he oversaw:
""I've been generally encouraged," he told CBC on Wednesday."They are feeling that they need to do something and I am hopeful that they will."

In 2008, in his report called Connecting the Dots, Richard recommended a centre of excellence be dedicated to research and the provision of services to children with very complex needs, including the establishment of community-based residential capacity for them.
The centre was one of 48 recommendations in the report, which was a two-year undertaking and included a review of seven individual complaint files relating to youth with very complex needs.
Richard called for a centre of excellence again last year in report called Staying Connected, which he co-authored as co-chair of a task force on a centre of excellence for children and youth for complex needs.
"When a placement outside of the home is required for assessment or step-up intervention purposes, the centre of excellence will help ensure that clinicians, educators, social workers and all interveners work together and from the same page in meeting the child’s needs," the report said.
"The millions expended to date for step-up interventions abroad could benefit many more children if they were spent here in New Brunswick; those expenditures could develop expertise, services and employment in communities around our province."
The first point to note is that Mr. Richard is talking about children not older youths and adults.  The second is that he is talking about community based residential capacity for these children.  Mr. Richard's comments, to the extent that they are referring to autism disorders, do not demonstrate any understanding of the very serious, long term, and in some cases, permanent challenges facing many adults living with severe autism disorders.  For such adults assessment is not an issue. Nor is a hospital in patient out patient model the answer. Many severely autistic adults need facilities in which to live permanently with autism trained staff and access to expert autism therapeutic and medical care on an ongoing basis.  
I was involved with the Staying Connected review process and I spoke about the need for permanent residential care and treatment placement facilities with autism trained expert staff. My comments carried no weight with the Staying Connected process panel which was ideologically opposed to any attempt to establish centres. The Ombudsman's office has never been a strong advocate for autistic children and adults in New Brunswick.  Positive improvement in early intervention and school services were obtained by committed parents fighting on behalf of their children. The Staying Connected consultations actively discouraged discussion of actual facilities, or "bricks and mortar" solutions for the serious challenges facing New Brunswick adults with complex needs including the very complex needs of severely autistic NB youth and adults.
Unfortunately, when it comes to adult autism care, the Ombudsman's office is not just  an irrelevant bystander as it was for preschool and school autism services.  It has become part of the opposition to providing decent modern and adequate residential care and treatment facilities.
The Ombudsman's office is not part of the solution when it comes to adult autism residential care and treatment in New Brunswick. As a bureaucracy closely tied to  the community living leadership which has such great influence with New Brunswick governments, and which vigorously opposes residential care and treatment facilities for autistic adults, it is part of the problem, a very big part of the problem. 


farmwifetwo said...

In my CL there are a variety of longterm care options and I plan to join the board when my son reaches 13 and we switch from school to real life. I firmly believe that changes are made from within... not griping from the outside.

Also, has anyone approached the not-for-profits?? Here they are building seniors facilities using Provincial monies + NFP monies and the NFP run the facilities.

Lastly, if there are that many out there can the parents form a NFP to leverage monies and care of their own?

Being part of the solution... not expecting it done for them. Bottom line is there is only X number of funds and in today's society of "I expect someone to hold my hand and do it for me".... there's even less.

Unknown said...

FW2 I hope that, as a matter of principle, you have refused to accept any government funded medicare assistance for you or members of your family. I also hope that you refuse any public funded education and other services. I would hate to think that you are such a screaming hypocrite that you would accept a government hand out.

I worked hard with other parents advocating for early intervention here in New Brunswick and I know we have a much better early autism intervention program available here than in Ontario. My son did not benefit from those programs but it was the right thing to do.

I have also advocated for autism trained assistants to work with autistic children and for place of learning accommodations depending on the autistic child's individual needs. As a lawyer I have provided free legal assistance to some autistic youths on criminal cases and under the Education Act.

Given your comments here over the years I doubt very much that you have done anything for anyone else.

Please feel free to post here. I have not censored your posting despite the reaction your posts always provoke.

I have been to psychiatric hospitals to visit adult autistics and their family members and to discuss residential treatment options for autistics in New Brunswick. I have seen autistic children charged with criminal offences for offering resistance to untrained workers in group homes and schools.

If you don't believe that government should be involved in providing for autistic adults who can not provide for themselves I have to question why you even visit this site. Your lack of compassion is difficult to comprehend.

Anonymous said...

She is an extremely bitter person. Either that or she is just plain crazy!

Cameron said...

Howard, would'nt the logical first step be to guage the level of need in NB. A poll of Parents of school age kids and post teen adults. Who may be at the level of care needing such a facility? How many are there or are potentially liable to be in this circumstance. With concrete numbers there would be a footing by which to petition Social Dev/Ombudsman for some action. Where Autism is still such a dirty word for even the parent of one how the hell do we get this info. Faceboooook......nooooooo. Maybe?

Unknown said...

Cameron the Autism Society of New Brunswick conducted a survey a number of years ago. There have also been a number of high profile cases. We met with government officials. The big problem on the adult issue in government is that nobody in the provincial government comes out with any substantive comment. Our government doesn't even discuss adult autism care issues in New Brunswick.

Cameron said...

I'd be curious to know exactly how many cases we are paying for out of province care for? Also what section of the Gov is responsible for this? Thanks Howard. Cam.

Anonymous said...

I disagree with Farmwifetwo; it is our society's responsibility (including government) to also take care of the most fragile individuals, regardless of their needs. I am a parent of a severely autistic child and I can tell you it can be difficult taking care of him, with limited resources and services. As other parents, I am worried of who will take care of my son when I no longer can. We desperately need residential care for autistic adults in New Brunswick.