Millions for Woodstock Civic Center But No Time to Answer a Simple Adult Autism Care Question

Second from Left, NB Premier and Woodstock MLA David Alward 
PHOTO BY MICHAEL MACDONALD/NBCC WOODSTOCK

On January 4 2012 I emailed New Brunswick Premier David Alward and relevant cabinet ministers the following inquiry which asked simply whether his government was considering helping autistic adults and is working on a modern, reality based model. I also asked if such an undertaking was not being considered to please say so straight up. 

Health Minister Madeleine Dubé's office was the only one to acknowledge receipt of my email.  I have received no substantive response to my question or concerns to date from Premier Alward or any of the relevant Ministers. The question itself requires no research, no public consultations.  It is a simple information request.  The question of adult autism residential care has haunted parents of severely autistic children in New Brunswick for many years. It was probably expecting too much to receive a prompt answer to a direct question. 

In the meantime though 8 million dollars of federal and provincial dollars are being poured into upgrading a civic center in the Town of Woodstock in Premier Alward's riding.  No time to answer a simple question about adult autism care in New Brunswick but lots of time and money for a civic center in Woodstock.  I absolutely do not begrudge the good people of Woodstock an upgrade to their recreational and community center but a few minutes to answer a simple question about adult autism care does not seem unreasonable either. Maybe I should have used an old fashioned letter for my inquiry and mailed it with a Woodstock P.O. Box return address? 

January 4 2012


Dear Honourable Premier, Honourable Ministers
and Respected Recipients


Re: Adult Autism Care And Treatment - NB Continues To Fail Autistic Adults In Need


I am the father of a 16 year old son with severe Autistic Disorder and "profound developmental" delays. He is now 6'1" with the strong, solid physique his father once had in younger days. At some point in the future I will be too frail to provide the care he requires and ultimately will of course no longer be available at all to help him. I began my involvement in autism advocacy in New Brunswick approximately 13 years ago. Along with other determined parents I fought hard, very hard, for early evidence based intervention for autistic preschoolers and for the means to deliver those interventions. I advocated strenuously for autism specific trained education assistants, teachers and resource teachers. Some success has been enjoyed because of the efforts of parents of autism in the area of preschool and school services. New Brunswick has even been cited as a model from which American authorities could learn by the Association for Science in Autism Treatment. The same can not be said, at all, when it comes to adult residential care and treatment


I also advocated for adjustments to the total inclusion education model in our schools. My son's self inflicted bite marks on his hands and wrists declined and disappeared entirely once removed from the mainstream classroom where he was overstimulated, overwhelmed, frustrated and learning nothing because of his serious autism deficits. I have been a determined opponent of the excessive dominance in our schools and facilities of rigid, ideologically based inclusion and community models. This mindset discriminates against severely autistic persons by failing to accommodate their real needs. Our children have, at times, been sacrificed to the vanity of a community movement which can not adjust to differing needs, experiences and expertise. I participated in regular disability committee meetings held by the Department of Education until they were disbanded, the MacKay review and the Ministerial Committe on Inclusive Education. Believe me or not but many teachers and teacher representatives have told me in confidence that they shared my aversion to the rigid inclusion model which has caused considerable suffering to some children and has disrupted the education of others unnecessarily. My son has been accommodated because of my advocacy and because educators who dealt directly with my son were conscientious, could see what he needed and acted in good faith to help him. I know that not all severely autistic children have been as fortunate.


Nowhere has the insistence on an inflexible and non evidence based inclusion model hurt autistic children and adults more though than in the area of residential care and treatment as they move from childhood to adolescence and ultimately adulthood. What awaits is a model which includes a belief in "community" backed up by group homes with untrained, underpaid staffers at one end of a spectrum of care. At the other end of that spectrum is the regional psychiatric care hospital in Campbellton. In between the two ends is a huge gap. What is need is at least one centrally located permanent residential care and treatment facility for severely autistic adults. Such a facility could be modernized and based on existing models in the world. It could include the professional assistance needed to provide care for severely autistic adults in a setting designed to provide them with a decent life, with continuing education and recreation opportunities. The facility should be based in Fredericton, not because I live here but because Fredericton is where our evidence based autism interventions and facilities began and grew. It is centrally located and it has a naturalistic environment with many woodlands, trails, parks and outdoor areas together with indoor recreational and entertainment facilities.


I realize the current economic realities in NB, in Canada and the world work against any consideration of the type of facility that is needed. But economic realities always weigh in and have done so over the last decade that I have been involved with trying to advocate for a reality based, evidence based residential facility for autistic adults in need of a permanent home when their parents age and pass on. Ever present too, and just as big an obstacle, is the belief that citing "community" cliches will actually help those who are most in need of help.


I have visited Centracare years ago with the father of a adult autistic son who resided there at the time. He told me of seeing his son dressed in a hospital "johnny shirt" in a room with a cement room and a liquid substance on the floor. I did not know whether to believe him or not until we arrived and again found him in the same room in the same condition. At least one autistic youth and one adult have been sent to a facility in Maine at considerable financial expense and considerable emotional stress for families living on the other side of an international border. I have had parents email me to tell me of their young adult autistic children hitting their head and having to wear self protective head gear at home while parents struggled to provide care. I was told of an autistic adult living on a general hospital ward for a time in Saint John. I am aware, as are we all, of the autistic youth who lived for a time on the grounds of the Miramichi youth correctional facility before being sent to the a Spurwink facility in Maine.


In early intervention and in school services both Liberal and Conservative governments have been of some assistance, have helped to provide needed, evidence based services to some extent. I ask that the same spirit be applied to developing a modern, decent residential and treatment facility for severely challenged autistic adults in New Brunswick. Nothing has been done for years. We have failed New Brunswick's severely challenged autistic adults. Community rhetoric has not helped. Autistic adults need a place to live. My son will need a place to live with access to professional autism care and autism trained staff, a place with educational and recreational dimensions to provide a decent life for him and others like him.


Please advise whether your government is considering helping autistic adults and is working on a modern, reality based model. If that is not in the works, please say so straight up.


Respectfully,


Harold L Doherty,
Conor's Dad


1. A Place for Conor What resources are available when you’re growing up with autism?
2. Autism services needed for N.B. adults
3. N.B. can be a leader in autism services
4. Autistic boy kept in New Brunswick jail, Toronto Star, October 19, 2005

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Autism Services in New Brunswick: We Lack Any Real Adult Autism Residential Care

The Restigouche Regional Hospital in northwestern New Brunswick

is home for some of our adults with autism disorders

In Autism resources in N.B. are a 'patchwork system' Jacques Gallant of the Times & Transcript has reported on the state of autism services here in New Brunswick (Canada, not New Jersey).  As Mr. Gallant reports, our early autism intervention services have received justified praise and our schools have made significant progress although much improvement is needed especially in rural schools. I am interviewed and discuss, in particular, my concerns about the wholly inadequate state of adult autism specific residential care facilities in New Brunswick.  We have group homes with untrained staff who can't accommodate the most severely challenged autistic adults and we have psychiatric hospital in northern New Brunswick far from most of our population.  Other than that we have resorted to temporary housing in hotels, general hospital wards, youth prison grounds and shipping our autistic population out of the province and even out of the country to nearby Maine.  New Brunswick needs an autism specific residential care facility, based in Fredericton, close to the autism expertise that has been developed at the UNB-CEL Autism Intervention Training program and the Stan Cassidy Centre Autism team.  The center should have a variety of configurations and buildings to accommodate the differing needs of the range of autistic adults on the spectrum.  It should have the trained staff and quick access to the autism professionals in Fredericton to help provide continued adult education, recreation and life enjoyment opportunities for autistic adults in New Brunswick.  

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A Place for Conor: Karissa Donkin of the Aquinian Examines Adult Autism Resources, or Lack Thereof, in New Brunswick

Karissa Donkin, a St. Thomas University journalism student, has produced an excellent article on adult autism services in New Brunswick.  The article includes an interview with me and reports on a meeting Ms Donkin had with me and Conor at the Second Cup outlet in Kings Place, Fredericton, New Brunswick. Her article presents both the joy of Conor and the challenges his Autistic Disorder presents as Conor approaches adulthood.  

Apart from our meeting Ms Donkin obtained information from New Brunswick's prominent autism expert Paul McDonnell, Ph.D, clinical psychologist and professor emeritus (psychology) about the need for autism services.  He comments in the article about the gap in residential care services for autistic adults in New Brunswick.

Ms Donkin's article completes the picture with some significant commentary by Department of Social Development spokesman Mark Barbour:

"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 comments from Mr. Barbour come as a pleasant surprise to me.  I have been involved in several meetings with representatives of government departments including Social Development over the years.  While they have always listened respectfully, and asked relevant questions, they have never really indicated an intention to take any serious action, in the form of an adult autism residential facility, to address the gap in adult autism residential care in New Brunswick.  Congratulations, and thank you, to Ms Donkin for her excellent journalism in reporting this information.

I hope the province is serious about their intentions to build a permanent care adult autism facility. I hope their intentions are not sabotaged by the austerity era in which we are now enmeshed or by the failed rhetoric of the community cliche movement which assures us, contrary to all facts, that the group home system will take care of all autistic adult needs.

I also hope that politics does not enter into the location of such a facility if it is in fact established.  Fredericton is  a central location,  is where New Brunswick's autism service delivery model was born, and is where resources such as the the University of New Brunswick psychology department, UNB-CEL Autism Intervention training program and the Stan Cassidy pediatric autism tertiary care team are located,  all of which have been crucial to New Brunswick becoming a recognized model for autism service delivery. The expertise available in Fredericton will be vital to providing the training and expertise needed for an adult autism residential care facility.  The Fredericton environment is also less urbanized than Moncton or Saint John and provides ample opportunities for everyone, including autistic persons and their family members, to enjoy a natural outdoor lifestyle.

Regardless, I thank Karissa Donkin, and the Aquinian,  for some excellent, informative journalism on a subject which is very close to my heart.

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New Brunswick Autism Services: Pre-School 2 Thumbs Up, School 1 Up & 1 Down, Adult Care 2 Thumbs Down

Harold L Doherty Speaking at the ASNB Meeting January 15,  2011 

The Daily Gleaner/James West Photo

We had a good turnout Saturday at the Wu Centre for a meeting to re-organize the Autism Society New Brunswick which has been dormant for 2 years after making huge gains in advocating for provision of pre-school and school autism services. The recent New Brunswick provincial election focused almost exclusively on financial and deficit issues with little discussion of social or health services. There will undoubtedly be pressure to cut the autism services currently provided. to pre-schoolers and students.  On the adult front it will be very difficult to begin the long overdue task of planning and building an adult autism residential care and treatment facility in New Brunswick.  Our group homes do not have autism trained staff or professional oversight.  After that it is life in a psychiatric hospital for many of the most severely affected by autism services.  In some cases we literally ship autistic adults out of the province, even out of the country to the facility in Spurwink Maine.

In The Daily Gleaner article Group vows to fight for services journalist Stephen Llewellyn, who was present throughout the meeting,  reported on our discussions and commitment to revitalize the Autism Society New Brunswick and protect and advance autism services in New Brunswick:

"New Brunswick went from having no treatment for autism in the early part of the 2000s to having the best pre-school program in North America, said Dr. Paul McDonnell, professor emeritus of psychology at the University of New Brunswick and a clinical child psychologist with a private practice. Starting in 2004, the provincial government also spent millions of dollars putting autism treatment resources in the public school system, he said. "We've accomplished a lot here," he told the meeting. "It's phenomenal." McDonnell said he has heard of cases of people with autistic children moving to New Brunswick because the system here is so good. There are 844 persons with special training to help children with autism in the preschool and school system and seven autism resource centres across the province.

Lila Berry of Miramichi attended Saturday's meeting and strongly supported the renewal of the autism society."We will lose what we have," she warned. "There will be cutbacks." "That will happen if there is no voice." But once a child with autism leaves school there is little assistance available to families.

"We have to address issues that just haven't been addressed, like the adult care issue," said Doherty.He said there was a case in 2005 in which a 13-year-old child with severe autism had to be placed in a visitor's apartment at the Miramichi Youth Centre, which is a correctional facility, because there was nowhere else to house the young person."We haven't done anything since 2005 since that story made us notorious across Canada," said Doherty. He said New Brunswick spends hundreds of thousands of dollars per person sending young people to a residential autism treatment facility in Maine. That money could be better spent on a residential treatment facility in this province, he said. But he also said he knows it will be a huge challenge to build an autism residential treatment facility during a time of budget restraint."

Dr. Tara Kennedy, the developmental pediatrician with the Stan Cassidy Centre for Rehabilitation autism team,  was present and was asked for her assessment of autism services in New Brunswick.  She concluded her assessment with the following rating: Pre-school autism services - 2 thumbs up, School services - 1 thumb up and 1 thumb down, Adult autism services - 2 thumbs down.  

Dr. Kennedy's assessment was, in the opinion of this autism dad and advocate, right on the money.  We need to work hard to protect our pre-school autism services in difficult financial times. We have to improve our school autism services and we have to begin to build our non-existent adult autism care services.

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Autism Society New Brunswick Meeting January 15, 2011

The Autism Society New Brunswick will be meeting Saturday, January 15 2011 beginning at 10 am at the Wu Centre, UNB Fredericton.  Everyone in NB affected by autism, whether you are autistic, have an autistic child, family member or friend is invited to attend.  The preschool autism intervention services now in place did not exist a decade ago. Teacher aides and resource teachers had not been trained at the UNB-CEL Autism Intervention Training Program. Individual learning environment accommodation did not exist to any extent. These services resulted from a  determined group of parents working through the Autism Society New Brunswick.  ASNB was unfunded by government and did not have paid staff.  We were conflict free and dedicated our energies toward making changes for the benefit of autistic children, youth and adults.  

More needs to be done.  Let's  get it done. Come to the ASNB meeting at the Wu Centre, UNB Fredericton on Saturday January 15 2011 beginning at 10 am and get started. 

See you there.

Harold L Doherty

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Adult Autism Residential Care and Treatment in New Brunswick 2000-2010 and Beyond; In 2011 Will Autistic Adults Remain Forgotten?

December 31 2010

The Honourable David Alward
Premier of New Brunswick and Minister
Responsible for the Premier's Council
on the Status of Disabled Persons

The Honourable Madeleine Dubé
Minister of Health

The Honourable Sue Stultz
Minister of Social Development

The Honourable Jody Carr
Minister Education and Early Childhood Development

Dear Honourable Premier and Honourable Ministers

Re: Adult Autism Residential Care and Treatment in New Brunswick 2000-2010 and Beyond; In 2011 Will Autistic Adults Remain Forgotten?

As this year draws to an end and a new year approaches I congratulate you on your victory in the recent election; on winning the trust of the people of New Brunswick. In facing up to the well known financial and economic challenges confronting New Brunswickers I hope, and trust, that this government will not neglect the eduction, health and social needs of New Brunswickers, of all New Brunswickers, including NB adults with autism disorders. In particular I hope, and ask in this open letter, that this government begin serious efforts in 2011 to address the residential care and treatment needs of New Brunswick adults with autism disorders.

I am the father of a 14 year old boy with Autistic Disorder, assessed with profound developmental delays. In plain language he is severely autistic. I have, because of his condition, been an active autism advocate in New Brunswick over the past 12 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. The success that has been enjoyed with autistic preschoolers and students stands in stark contrast, however, 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 10 years. During the recent 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 but no action has resulted. Today we still have autistic adults living in facilities outside New Brunswick and in a variety of ad hoc accommodations. The most seriously challenged persons live in the psychiatric hospital in Restigouche. The current group homes have untrained 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 10 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 planning, in 2011, to provide an evidence based system, as described by Dr. McDonnell, that will address these needs and provide a decent quality of life for our autistic youth and adult population.

Respectfully,

Harold L Doherty

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An Enhanced Autism Group Home System and Center is Needed to Fill the Gaping Gap in New Brunswick's Autism Service Model

In ASAT Responds to Canadian CBC's "N.B. Can Be a Leader in Autism Services" New Brunswick, Canada  was recently described by David Celiberti Ph.D., BCBA-D, President Association for Science in Autism Treatment as being a leader in the provision of autism services.

Responding to the referenced  title of a CBC article on the state of autism service delivery in NB Dr. Celiberti expressed the view, with which this humble father and autism advocate agrees, that  NB is a leader in providing evidence based effective preschool intervention and  education of autistic children.  Dr. Celiberti goes on, however, to point out correctly, as did the CBC article written by Paul McDonnell a leading New Brunswick autism expert, Professor Emeritus (Psychology) and clinical psychologist working with autistic children, that New Brunswick is still lacking in adult autism services. 

In fact New Brunswick has no autism specific youth and adult residential care system.  Instead NB autistic youth and adults who require residential care services are placed in general group homes with no autism specific staff and no professional autism specific expertise readily available.  For those who require autism specific treatment the situation becomes horrendous with some youth being placed on the grounds of correctional facilities, some youth and adults living in hotels, hospitals wards and psychiatric institutions. Some are exported out of the province and out of the country.  

In his CBC comments Dr. McDonnell provides clear direction on what is needed to fill the adult service gap in New Brunswick's autism service delivery model:

"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."

An enhanced autism specific group home system throughout the province with a major center, providing ongoing training, leadership and supervision, as recommended by Dr. McDonnell is exactly what is needed to fill the gaping gap in New Brunswick's autism service delivery.  Autism advocates, including me, have advocated for enhanced autism specific group homes and a center for several years but government has not responded.

In New Brunswick, parents, politicians and civil servants stepped up to the plate and became a leader in helping autistic children.  Surely we can do the same for our autistic youth and adults.  Surely we can provide decent, secure, modern living environments for our vulnerable autistic youth and adults in need.

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Autism Services in New Brunswick 2010 Update

I would like to thank Fredericton's Daily Gleaner for publishing my letter to the editor concerning the state of autism services in Canada, and more specifically in New Brunswick, in October 2010.


Many do not know that Autism Awareness Month is recognized in October in Canada not April as in the US.


I have been blogging about autism issues for four years and it is easy enough to publish my own comments on this humble blog. It is a big boost though when the assistance, and reach, of a long established local paper is provided.


As stated in the Daily Gleaner today:



Adults with autism need help


Re: Autism


October is Autism Awareness Month in Canada.


Autism is a disorder which is diagnosed based on communication, social and behavioral challenges.


Approximately 75-80 per cent of persons with the most severe form of autism, Autistic Disorder, also have intellectual disabilities.


When my son was diagnosed with Autistic Disorder 12 years ago, the Center for Disease Control in the U.S. estimated that 1 in 500 persons had an autism disorder. Today that CDC estimate has risen to 1 in 110.


Many autistic children and adults can't function on a level which would permit them to live independent lives.


Despite these realities, our federal government has done nothing to deal with Canada's growing autism crisis, preferring to leave autism as a provincial responsibility.


Across Canada provincial governments have provided varying levels of responses. Fortunately for my son, New Brunswick has actually been a leader in developing early intervention and school services for autistic children.


The government-funded early intervention services, provided by competent trained staff at the autism intervention centres, makes New Brunswick a leader in that area.


The UNB-CEL Autism Intervention Training Program, which has received high marks by the most expert professionals on external review, has provided training to staff at the early intervention centres and to approximately 500 teacher assistants and resource teachers in New Brunswick schools.


Severely challenged autistic children like my son are able to receive instruction in quieter environments within neighborhood schools, while visiting common areas of the schools like gyms, pools and kitchens for socializing purposes.


As a long time advocate for these evidence-based services for autistic children I thank former premiers Bernard Lord and Shawn Graham for their rich contributions to New Brunswick's autistic preschoolers and students.
And I thank the many parents who fought so hard to draw attention to the need for these services.


I also thank professionals who have led the way like Dr. Paul McDonnell, Dr. Annie Murphy, Dr. Tara Kennedy, all the directors and staff of the autism intervention centers and Ann Higgins of the UNB-CEL Autism Intervention Training Program.


We have all failed, however, to improve the living conditions of autistic youth and adults, some of whom live in desperate conditions on hospital wards, with over-challenged and increasingly elderly parents and in psychiatric hospitals.


Autistic adults, as Professor Emeritus Paul McDonnell has recently stated, are badly in need of a modernized residential care and treatment system. We must act now to help autistic adults in New Brunswick.


Harold L. Doherty
Fredericton

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Where's Alward on Autism Services?

The New Brunswick Liberal Association has a web site and a twitter account which mocks Conservative leader David Alward by portraying him as the comic fictional character Where's Waldo. The Where's Alward effort aims to prompt New Brunswickers, with a touch of comedy, to ask hard questions about David Alward's positions. Since the site and twitter effort though the Conservative Party has issued its platform and has made a number of other policy statements. 

I don't know if it is fair or accurate generally to say that David Alward is absent when it comes to making clear statements of position on various issues. I do know that David Alward has made no statements at all about the 1 in 110 New Brunswickers with an autism disorder or what they can expect from an Alward Conservative government.  Neither David Alward, nor any members of his party, have made public statements about what will happen to early autism intervention programs, Teacher Assistant autism training, or accommodation of autistic students's learning challenges with alternate learning environments ... all areas in which great progress has been during the first Shawn Graham Liberal government.

Would a David Alward government roll back some or all of this substantial progress? Would his government ensure that progress continues to be made in early intervention and education  for autistic children? No one knows because David Alward and his party are not saying.

In the last year of the Graham government discussions moved forward  on the serious issue of adult autism residential care and treatment.  The discussions, with Kelly Lamrock in his role as Social  Development  Minister, centered around the adult autism residential care and treatment  model described by autism expert Paul McDonnell, Ph.D., in the CBC site article Autism Services Needed for N.B. adults. It would be nice if the Alward Conservative Party would commit to the McDonnell model but that would be expecting much from a leader and a party which has no time to even mention the existence of a disorder which affects 1 in 110 New Brunswickers.

I don't know if the New Brunswick Liberal portrayal of David Alward as missing on policy directions is fair or accurate generally.  I do know that, with respect to autism disorders in New Brunswick, it is both fair and accurate to ask ... Where's Alward on Autism Services?

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New Brunswick Leads in Preschool & Student Autism Services But Adult Autism Needs Must Be Addressed

Autism expert Paul McDonnell Professor Emeritus (Psychology, UNB), Clinical Psychologist, and  a  major force behind the great progress that has been made in provision of preschool and school autism intervention and education services in New Brunswick,  has provided expert analysis of autism issues to the CBC. In two features, Paul's analysis, and his interview by CBC reporter Dan McHardie, Paul speaks about the leadership role New Brunswick has taken on in providing excellent preschool and school autism services but also points to  the need to address youth and adult autism needs including adult care residential needs as set out in the interview:

"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."

Read more »

Autism In The New Brunswick Provincial Election, September 27, 2010?

The New Brunswick provincial election is just underway with  Election Day set for September 27, 2010.    Unofficial campaigning has been under way for several months although the official campaign start date was earlier this week and resulted in several complaints that candidates had jumped the gun in erecting election signs.  (For those from outside New Brunswick, a few shots I took  of the New Brunswick legislature follow).  There are five parties contesting the election including the governing Liberals and official opposition Progressive Conservative Party who traditionally take turns forming the government and official opposition. They are joined by the New Democratic Party which has a strong political heritage elsewhere in Canada but not in New Brunswick, the relatively new Green Party and the brand spanking new People's Alliance of New Brunswick born out of the ashes of the NB Power political firestorm that threatened to derail the current Liberal government.

So far I have been unable to locate any mention by any of the parties of autism issues or commitments.  It is still very, very early, and perhaps we will hear something about autism services from the parties. I do not make these comments in a negative way.  Both former Conservative Premier Bernard Lord and current Liberal Premier Shawn Graham have made very substantial improvements to autism services for pre-schoolers and students.  Several Ministers from both of these governments have demonstrated sincere and conscientious commitment to helping autistic children and I single out in particular former Conservative Tony Huntjens and Liberal Kelly Lamrock.  

In New Brunswick autism has been dealt with in a very bi-partisan manner and I am genuinely proud of our political leaders in dealing with autism issues;  all the more so since I traveled to Ontario as part of the Medicare for Autism team led by Jean Lewis and David Marley from British Columbia.  In  Toronto where I used to work and in Oakville, next door to my son Conor's birthplace in Burlington Ontario,  I met Ontario autism advocates like Barry Hudson, Norrah Whitney,  Stefan Marinoiu and Jennifer O'Brien all of whom have been fighting hard against the bureaucratic stonewalling and  denial of autism services and treatment of  Ontario Liberal Premier Dalton McGuinty's government. 

Although I am proud of what New Brunswick governments have done for provision of autism services for pre-schoolers and students with autism disorders over the past 10 years I can not say the same about services for autistic adults. New Brunswick has long been in serious need of an autism specific residential care and treatment system for adults with autism. I have been part of several presentations that have been made in writing and in meetings at which concerns were pressed.  In particular the need for better regulated group homes with autism trained personnel and more attention to recreational and dietary needs has been expressed. Further it is clear that a center or village capable of serving the most severely affected by autism is needed in place of the psychiatric hospital in Campbellton.

I have met the professionals who operate the Campbellton hospital. They impressed me as dedicated and caring people who are doing the best they can to deal with a challenging situation and a questionable mandate of returning severely affected autistic adults to the community based group homes around the province. It is imperative that an autism specific facility be located in Fredericton, with its central location, and its proximity to the autism expertise available at UNB, UNB-CEL, the Stan Cassidy Center and the Board Certified Behavior Analysts that the Department of Education has brought in to replace the UNB-CEL as the primary training resource for teacher assistants working with autistic children. It makes no sense to locate an autism specific facility away from Fredericton and the autism expertise that has been built here over the past decade.  Fredericton also offers natural environments which could provide invaluable recreational opportunities for autistic adults including the incredible trails, O'Dell Park and Killarney Lake.

Whatever the next government decides to do with respect to provision of modernized autism residential care and treatment for adults the current situation will not suffice. At the start of this political campaign nothing has been said about such autism services. Hopefully that will change before September 27, 2010.

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Adult Autism Care in New Brunswick Is Our Top Autism Priority

The Daily Gleaner makes brief mention of the Oscars for Autism event held Saturday Night at the Delta Fredericton.

Neil Lacroix and Kim Gahan of Autism Connections Fredericton, and Brian Jones of TD Waterhouse, deserve applause for their hard work in making the Oscars for Autism event a huge success. Stan Cassidy Centre developmental pediatrician, Dr. Tara Kennedy, a great asset for New Brunswick's autistic children, gave an excellent overview of autism disorders. Psychologist Paul McDonnell was recognized for his outstanding contributions to autistic children in NB. Parents of autistic children who fought for autism services, the many civil servants and front line workers who provide them, and the leaders who responded, former Premier Lord and Premier Graham, were all saluted.

NB is literally a world leader in providing evidence based services to autistic children and the people of NB as a whole deserve credit. We must focus now on those autistic youths and adults who require what is currently lacking - a decent residential care system to provide for them when families no longer can.

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