I Am Hoping for NDP Voices in the NB Legislature to Help Families Advocate for An Adult Autism Care Facility

The picture above is from Conor's 2nd Birthday on February 2,  1998.  The next day we received his autism disorder diagnosis, described initially as Pervasive Developmental Disorder Not Otherwise Specified,  six months after various tests and six months after requesting medical attention because we did not understand his lack of development and we were concerned.  Shortly thereafter as his deficits became more obvious and pronounced the diagnois was changed to Autistic Disorder now part of the DSM-5 Autism Spectrum Disorder. An age 2 diagnosis was rare in those days.

Conor at 3.  Over the first year, post autism diagnosis, we had attended at the  very limited information sessions provided to families with autistic children by the Province of New Brunswick. We had also heard much rhetoric about just accepting your child as he is, accepting his autism, be happy.  Then I attended a parents group meeting (in the pre government funded Autism Community centre days)  At the meeting I found myself surprised to be lectured directly and sternly, by Dawn Bowie,  the mother of an autistic child who also happened to be a registered nurse). From those meetings and connections with other concerned parents in Moncton, Miramichi, Oromocto, Fredericton, and a Saint John family (Heather and Don Chamberlain) began a parent advocacy movement that resulted in an April 1, 2003 announcement of funding for unspecified autism services by then Health Minister Elvy Robichaud. By the end of the Lord government's term the UNB-CEL autism program had been established with early intervention centres. Autism training began for teacher aides and resource teachers and under the Graham government more were trained.  An ill considered decision to close the Stan Cassidy tertiary care team who worked with autistic children under the age of 16 was reversed ... again as a result of advocacy led by parents. 

Conor, still our happy boy, is now 18 and will require decent adult autism care 

 for the rest of his life once his parents grow old and pass  on. 

I am asking in this post for all families with autistic children and adults to consider voting tomorrow for the NDP.  I make this request in order to encourage you to vote for MLA's in the legislature who are committed to advocating for a badly needed adult autism care facility.  Beginning in 1999 parents advocated with some success for early autism intervention and autism trained teacher aides and resource teachers.  Progress in adult autism care has been virtually non existent with autistic adults shipped out of province in some cases, to the Regional Psychiatric Hospital in Campbellton and some have resided for periods of time at least on general hospital wards.  

The fight for adult autism care in NB will not become any easier with the election of one of the 2 parties, Red or Blue, that have governed NB during my entire life and during the last 15 years of autism advocacy.  But at least if some NDP voices are elected, unlike the Blues and Reds,  we will have voices from a party that has publicly committed in its election platform to an adult autism facility.   

If you are voting tomorrow, I respectfully ask you to  please consider voting NDP. 

Will New Brunswick Ever Act To Provide Adult Autism Residential Care?

The Campbellton Based Restigouche Psychiatric Hospital

 is the Only NB Based Residential Care Option for Severely 

Autistic Adults in New Brunswick

June 22, 2013

David Alward, Premier's Council on Status of Disabled Persons 
Hugh J Flemming, Minister of Health 
Madeline Dube, Minister of Social Development 
Dorothy Shephard, Minister of Healthy and Inclusive Communities 

Dear Premier Alward and Honourable Ministers:

Re: Residential Care and Treatment for NB`s Autistic Youth and Adults

I am the father of a 17 year old son with severe autism, developmental delays and epileptic seizures.  If his mother and I were to perish in an accident tomorrow my last thoughts would probably be filled with the knowledge that New Brunswick lacks anything resembling adequate residential care and treatment facilities for youths with severe autism and related disorders.  In that regard nothing has changed since the attached 2005 Toronto Star article, in which I am quoted,  concerning the youth who was housed on the grounds of the Miramichi youth correctional facility solely because he was severely autistic.  Shortly thereafter, in part at least because of Toronto media attention, he was moved to the Spurwink facility in Maine. 

As our son ages into adulthood we, his parents, will likely grow feebler and ultimately will die. No adult care facilities for severely autistic adults who require permanent residential care and treatment exist in New Brunswick.  I have worked on this issue over the past decade and met on several occasions during the Lord and Graham government eras with Ministers and even with former Premier Graham.  Even before the Miramichi youth situation arose I advocated with other parents to move an autistic adult out of the Saint John Centracare facility.  I have visited Centracare on more than one occasion and I have also been given a tour by the operators of the Campbellton psychiatric hospital where some autistic adults live out there lives.

With that lengthy advocacy involvement on adult autism care, and lack of government response,  I did not honestly expect this administration, which repeats community and inclusion cliches in many government and official statements, and even pays for a new "community" government department, to actually take action on the issue of adult autism care and treatment.  I say this in the interests of candor not confrontation.  

Despite my skepticism about your philosophically driven approach to government I still have to hope, in the best interests of my severely autistic son and others, that you will, as the Lord and Graham governments did on early autism intervention, autism trained education assistants and reversal of the decision to close the Stan Cassidy tertiary care autism team, look realistically at the issues of adult autism care.  I ask you to take an evidence based approach to adult autism care issues. I ask you to take action.  I ask you to do something about the problem.

In that regard I refer you, once again, to an interview with  New Brunswick autism expert Dr. Paul McDonnell, UNB professor emeritus (psychology) and clinical psychologist, in 2010 in which Dr. McDonnell commented on the need for an enhanced adult residential care network:

Autism services needed for N.B. adults

"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."

The professor, who has spent 20 years studying children who have autistic spectrum disorders, said New Brunswick could look to the programs being implemented in the United States where local governments have funded facilities that provide independent living options for people with disabilities. 

These facilities can be expensive, but McDonnell said the costs can be even higher in terms of the "human costs" if these reforms are not implemented. "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," he said. 

Enhanced network 

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."

The 2005 Toronto Star Article follows. It demonstrates clearly how long these autism youth and adult problems have been festering in New Brunswick. Please take steps now to address these issues that torment so many with autism and their families in New Brunswick.

Respectfully,


Harold L Doherty
Fredericton, New Brunswick

cc. Brian Gallant, Leader of the Official Opposition Liberal Party of NB
     Dominic Cardy, Leader, New Democratic Party of New Brunswick
     David Coon, Leader, Green Party of New Brunswick
     Facing Autism in New Brunswick
     Media

-----------------------------------------------------------------------------------------

Autistic boy kept in New Brunswick jail

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

The Toronto Star, KELLY TOUGHILL, ATLANTIC CANADA BUREAU, Oct. 19, 2005

HALIFAX—A 13-year-old autistic boy now living in a New Brunswick jail compound will be sent out of Canada because there is no home, hospital or institution that can handle him in his own province.

Provincial officials confirmed yesterday the boy is living in a visitor's apartment at the Miramichi Youth Centre and will be moved to a treatment centre in Maine by November.

They stressed he is not under lock and key, has no contact with other inmates and is living outside the high wire fence that surrounds the youth detention centre.

Nevertheless, the jailhouse placement and the transfer to Maine have outraged mental health advocates and opposition critics.

"They put this boy in a criminal facility because he is autistic," said Harold Doherty, a board member of the Autism Society of New Brunswick.

"Now we are exporting our children because we can't care for them. This is Canada, not a Third World country.

"We are supposed to have a decent standard of care for the sick and the vulnerable, but we don't."

Liberal MLA John Foran echoed his concern. "This boy has done nothing wrong, is not the subject of any court order, but is in a penal institution."

Provincial officials yesterday insisted critics are misrepresenting the nature of the boy's situation and that in fact the province has done everything it can to help him.

"This individual is not being held, and is not incarcerated," said Lori-Jean Johnson, spokeswoman for the family and community services department.

"He has housekeeping, bath and a separate entrance. We are just utilizing existing resources."

Privacy laws prevent officials from discussing anything that would reveal the boy's identity, including details of his previous living situation and the whereabouts of his parents.

This much is known: He suffers from a severe form of autism and is a ward of the state, under the guardianship of the minister of family and community services. He was living in a group home until recently, but became so violent that he was judged a danger to himself and others. At a psychologist's recommendation, he was moved to a three-bedroom apartment on the grounds of the Miramichi Youth Centre, a prison for about 50 young offenders. Two attendants from a private company watch the boy around the clock, at a cost to taxpayers of $700 a day.

Johnson said she does not know any details of his care.

Doherty said the jailhouse placement and move to Maine highlight the desperate need for better services for autistic children in New Brunswick and across Canada.

He said staff at most group homes in New Brunswick aren't trained to deal with autism and don't understand the disorder.

"If you don't understand autism, things can become very bad very quickly," said Doherty, who has a 9-year-old son with the disorder.

"We have been pushing for (better facilities) in New Brunswick for several years. This is not a crisis that has popped up in the last two days. Residential care is a critical element for these people and it is not being provided."

Johnson said the provincial system of group homes and institutions that care for children and adults with psychiatric disorders and mental disabilities works for most people.

"We do have existing resources, but once in a while, there will be an exception. Here, we are looking at a very extreme case."

The boy will be moved to an Augusta, Me., treatment centre at the end of the month, said Johnson.

The centre, run by a non-profit group called Spurwink, specializes in dealing with autistic adolescents.

A Spurwink representative did not return a phone call from the Toronto Star.

Provincial officials could not detail the cost to keep the child at Spurwink, nor did they have information about why he's being sent to Maine, rather than a Canadian facility in another province.``

Great Autism News in New Brunswick!

Great autism news in New Brunswick as the UNB-CEL Autism Intervention Training Program is being made available for the public.  (Applications available online.) The college program has previously been recommended by US autism experts Dr. Eric Larsson and Dr. David Celiberti. Dr. Celiberti in particular is very familiar with the program and had recommended the New Brunswick autism service delivery model which was based on the program  for consideration by other Canadian provinces.  Unfortunately for New Brunswick's autistic children, students and adults the successful UNB-CEL Autism Training Program, first utilized by the Premier Bernard Lord's Conservative government, and then by Liberal Premier Shawn Graham's government, has been abandoned by the David Alward government and its non evidence based, philosophically driven partners at the NBACL. 

The UNB-CEL Autism Intervention Training program was born in response to requests for tenders for autism training put out by the Lord government. That request resulted from intense and effective advocacy by many New Brunswick parents of autistic children led by the Autism Society of New Brunswick.  The actual program itself was first conceived at a meeting of a committee which was  meeting to establish an autism centre of excellence at UNB in Fredericton.  During a committee meeting a parent advocate member of the committee suggested that UNB should provide training in response to the government tenders. Dr. Paul McDonnell who was at the meeting confirmed that UNB had the professional resources to provide the training.  Anne Higgins, then with UNB-CEL, laid out a step by step process, including necessary time lines, that could be followed to meet the tender requirements. A pilot program was run and the UNB-CEL Autism Intervention Training was born!

Parent advocates, including yours truly, lobbied strenuously for the extension of the UNB training to our schools.  We met fierce opposition from some in the Department of Education who had their own agendas to pursue.  I was even subjected to threats from Department of Justice legal counsel, at the request of the then Director of Student Services, Robert Gerard, to keep me from participating in meetings between the Autism Society and Education department officials to discuss implementation of a commitment by Premier Shawn Graham to increase the numbers of UNB-CEL autism trained education assistants working with autistic students. 

We also met with fierce opposition from the New Brunswick Association for Community Living which included direct opposition from NBACL icon, then NB Human Rights chair, and now Alward transition team member Gordon Porter.  The current Education Minister's wife Krista Carr is an executive officer with NBACL and at the time she also opposed the Autism Society's position that alternative learning environments were necessary for some autistic students and in particular for those receiving ABA based instruction, provided by UNB-CEL autism trained aides, in quieter settings outside the regular classroom.  Danny Soucy is a current member of the Alward government, also affiliated with NBACL, and was also a  public opponent of Autism Society efforts to achieve the flexible inclusion necessary for many autistic children to be educated at all and in particular to receive ABA instruction from UNB-CEL Autism trained aides.

A third force opposing parents advocating for UNB-CEL training for our children was, and is, the union representing education aides, CUPE Local 2745 and its leader Sandy Harding. During the time I was ASNB President I had requested a meeting with Ms. Harding's predecessor to seek the CUPE Local 2745 support for autism trained education aides (TA's).  Ms Harding's predecessor was not interested and she herself upon taking office as Local 2745 president has been openly hostile to any serious training requirement for aides working with autistic students.  

CUPE Local 2745 has used its considerable clout to resist any training requirement and pushed hard for seniority as the only requirement for aides working with children with autistic disorders. As a labour lawyer with a quarter of a century experience, in New Brunswick and federally, I can say that such a lop sided approach to any job posting requirement is almost unheard of and, as the Alward government currently genuflects before CUPE Local 2745, constitutes an abandonment of management rights. Removal of the UNB autism training requirement in favor of pure seniority considerations and refusal to permit learning outside the classroom when necessary also constitute failure to accommodate the autistic disorders, the neurological based disabilities of children with autism contrary to Human Rights Act requirements.   Both the Alward government and CUPE Local 2745 are now discriminating against children with autism disorders by refusing to acknowledge the need for autism training for aides working with children with autism disorders which are in fact serious neurological disorders.

With these three major institutional forces aligned in lock step opposition to the accommodation of New Brunswick's autistic students comes a fourth factor - the current shaky state of the world economy. Economic factors currently provide perfect cover for the Alward government to abandon the quality and integrity of the UNB-CEL autism training for the sloppy in house training that was opposed by the Autism Society New Brunswick and for a surrender of our children's best interests in the face of the adult interests of untrained senior members of CUPE Local 2745.

In this perfect storm the revival for the public of the UNB-CEL Autism Intervention training program, and the quality and integrity it provides, is one bright light in the darkness.  It  is a beacon to guide us and provide hope that better days are ahead.

Thank You To All Who Were Involved With NB`s Incredible Autism Success Story: The UNB-CEL Autism Intervention Training Program

The foundation for the autism service gains that have been made in New Brunswick over the past several years has been dismantled and shut down for good. The screen image above is what I found when I did a search of the University of New Brunswick web site looking to see what, if any, course would still be offered by the UNB-CEL Autism Intervention Training program.  The content section of the screen, however, was literally blank. The UNB-CEL Autism Intervention Training Program is no more.

I was aware for some time that the Alward-Carr-Porter team would not continue to train education assistants and resource teachers through the program.  Autism training will be done "in house" by an education department hierarchy that resisted the program in the first place because it wasn't their project and because they thought it cost too much.  Now pre-school early intervention autism workers will no longer be trained at UNB-CEL either.  Apparently Minister Carr and his combined education-early childhood development team feels that it can do better by consulting experts to instruct our autism intervention agencies on how to provide their own versions of in house early autism intervention.  Minister Carr and Gordon Porter  will call the services they oversee evidence based but an evidence based autism intervention requires a level of quality and integrity that in house training subject to conflicting adult interests is unlikely to meet.

The UNB-CEL Autism program arose as a response to determined advocacy by parents of autistic children.  The program provided NB`s autistic children and students with quality and integrity in the intervention and instruction they received.  Former Premier Bernard Lord responded very personally, and very constructively,  despite the at times combative nature or our advocacy, to our requests.  His government looked for service providers that could provide the necessary early intervention services.  Rather than import and pay huge fees to import services from Ontario a steering committee of various autism professionals, academics and parents involved with autism issues thought it would be a good idea to develop a program using local expertise.  Premier Lord, and after him Premier Graham,  agreed and UNB-CEL provided the autism training for the services our children needed.

Anne Higgins, a brilliant administrator who at that time was with the University of New Brunswick was a key part of the group that founded the UNB-CEL Autism Intervention Training program.  She put a tight organizational plan together and implemented it  with incredible efficiency.  UNB Professor Emeritus (Psychology) and clinical psychologist Paul McDonnell and UNB Psychology professor Barb D'Entremont led the team at UNB that developed the content for the program.  Private autism agencies were established and the UNB-CEL Autism Intervention Training program was used to train early autism intervention and clinical supervisors for New Brunswick's two official language groups.

New Brunswick parents of autistic children advocated for an extension of the UNB autism training to the school system with requests that teacher assistants and resource teachers working with students with autism also receive the UNB autism training.  Both Premier Lord and Premier Graham, in direct discussions with representatives of New Brunswick's autism community, responded positively.  

The training of early intervention and education personnel working with autistic children and students met with fierce resistance, some of it from career bureaucrats in the higher echelons of the Department of Education and some of it from New Brunswick's inaccurately characterized "inclusion" and "community" movement.  Now with Minister Carr and NBACL inclusion icon Gordon Porter in charge of both early childhood development and schools the UNB-CEL autism training is no longer wanted.   The foundation of our autism gains in recent years has been abandoned. My comments are gloomy but they reflect current realities under this administration. 

I would like to end this comment on a positive note though by thanking all persons involved with the UNB-CEL Autism Intervention Training Program, particularly Anne Higgins, Paul McDonnell and Barb D`Entremont.  I would also like to thank all the parents whose efforts in advocating for early intervention and education assistance for our autistic children led to the establishment of the UNB-CEL autism training.  Without determined, focused autism parent advocacy there would have been no UNB-CEL autism program. Thank you all.

Former Premier Shawn Graham, A Strong Advocate for New Brunswick's Autistic Children, Expected to Resign Today

Shawn Graham & Andy Scott with autistic children and parents at the

autism intervention and community centres in Fredericton in 2007

Canada News Service reports that NB Liberal leader Shawn Graham will announce his resignation this morning.  As a father of a son with Autistic Disorder, and an autism advocate for over 10 years, I will regret his departure.  Shawn Graham while official leader of the opposition, and then as Premier of New Brunswick, helped New Brunswick become as stated by David Celiberti, president of the Association for Science in Autism Treatment, a leader in provision of autism services. Premier Lord had begun the early intervention program for delivery of evidence based autism treatment to NB preschoolers and had begun the training of teacher aides at the excellent UNB-CEL Autism Intervention Training program but Shawn Graham was active in pushing for these programs and in expanding them very significantly.  The people of NB said goodbye to him as Premier and today he is expected to leave.  

There are as yet no signs that Shawn Graham's commitment to evidence based intervention, treatment and education for autistic preschoolers and students in NB, in learning environments which accommodate their individual best interests,  will be carried on by  Premier Alward. To the contrary Premier Alward, and his cabinet ministers, are heavily influenced by the feel good philosophy of community living icon  Gordon Porter,  a member of Premier Alward's five man  transition advisory team, who has been openly hostile to autism representatives advocating modern evidence based approaches to educating autistic students.  Hopefully the gains made for autistic preschoolers and students during Shawn Graham's term as Premier will not be thrown away during the next four years.

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

New Alward Carr Government Will Roll Back Autism Progress in New Brunswick

Congratulations to New Brunswick's new Premier David Alward and all members of his team who were elected.  Congratulations also to those Liberals who were elected despite the obvious backlash against the Liberal government of Shawn Graham. I offer all these congratulations sincerely even though I know that the election of this government and the likely cabinet role to be played by Jody Carr and possibly his brother Jack Carr will spell the end of the progress that has been made in helping autistic preschoolers and students in New Brunswick over the past 4 years.  We live in a democracy and the people have spoken. Those elected, including the Carr brothers in their ridings, have received the endorsement of the people.  For this they deserve the hearty applause of all NBers including me.

Having offered these sincere congratulations  though I must also state that the Carr Family will exercise a profoundly  negative influence on the future of autistic preschoolers and students in New Brunswick. Their prominence will threaten existing programs of early autism intervention, autism trained Teacher Assistants and accommodation in alternative learning environments within neighborhood schools for autistic children and other children whose severe disability challenges make the mainstream classroom a negative, and in some cases, a harmful environment.  I know these things because I was actively involved, along with other well informed, determined parents of autistic children,  in the struggle to establish the preschool and school programs and policies that have made New Brunswick an autism leader in early intervention and education in Canada.  I know these things because throughout the years of struggle we were steadfastly opposed by the New Brunswick Association for Community Living to which both Jody and Jack Carr are intimately tied.

The NBACL has done much good in raising public awareness about disabilities generally, promoting acceptance of disabilities generally, and acceptance. The problem is that the "community" and "inclusion" principles of the Community Living organizations in Canada and in New Brunswick have hardened into resistance to accommodation of those with severe autism challenges and other individuals whose disabilities require accommodation and learning in different environments ... a separate quieter environment outside the mainstream classroom ... than that which NBACL and CACL insist upon for ALL students regardless of their specific disability and their specific challenges and needs. The fine principles of the NBACL have deteriorated into dogma and ideology and Jody Carr, his wife Krista Carr and Jack Carr have all , in the past, resisted  efforts of parents seeking to help their autistic children.  The Carr's have resisted evidence based approaches to early intervention and education of all children with disabilities, including autistic children, in favor of cliches. There is no room for compromise or accommodation in the Community Living based ideology which the Carrs  promote. For them It is the community cliche way or the highway.

Adult autism residential care is one of the areas in which little progress has been made in New Brunswick.  5 years ago the Bernard Lord Conservative government sent an autistic youth to the Miramichi Youth corrections facility for several months while he waited a place at the Spurwink residential treatment facility in Maine.    When Jody Carr vetoes efforts to create a professional, evidence based and compassionate residential care and treatment facility in New Brunswick he says that "we will not send them away" do not be fooled, do not believe him.   In 2005 the Lord  Conservative government sent them, autistic youths and adults,  away to Maine and to outmoded psychiatric facilities, even to hospital wards and Jody Carr, a Conservative MLA at the time,   said nothing .... absolutely nothing.  

For New Brunswick children and adults with autism the Alward Carr years will not be pretty. There is a rough trail ahead, a very rough trail.

.

Adult Autism Care in New Brunswick

Dear Honourable Elected Leaders, Representatives and Public Officials

I am writing to you as the father of a 14 year old son with severe Autistic Disorder and profound developmental delays, and within 48 hours of the deaths of severely autistic 22 year old Benjamin McLatchie, and his father Daniel McLatchie, in nearby Gray, Maine. The Maine state medical examiner’s office has ruled the case a murder-suicide, the father having shot and killed his son and himself. Reports describe the father as a caring stay at home father who despaired for his son’s future, in a state with inadequate residential care for autistic adults, after his own inevitable passing. There is speculation that the father’s fears and despair might have prompted this tragedy.

Many parents, including here in New Brunswick, including this father, fear what awaits our autistic children after our passing. In New Brunswick the governments of former Premier Bernard Lord and current Premier Shawn Graham have both been world leaders in helping our autistic children. The same can not be said with respect to autistic adults.

Autistic children aged 2-5 can receive government funded early intervention program from trained service providers. The Stan Cassidy Center’s autism pediatric tertiary care team is of great assistance to many autistic children. The UNB-CEL Autism Intervention Training program, has received expert recognition for its excellent program and has trained several years worth of early intervention workers, teacher assistants and resource teachers in autism specific interventions. Many autistic children have received the benefit of a flexible, student oriented approach to educating autistic children in neighbourhood schools where those autistic children who can learn in a regular classroom do so while those, like my son, who require more individualized curriculum and training methods and place of learning adaptations do so in environments structured for their specific needs and strengths.

In adult care however New Brunswick has been stalled as reflected in the 5 years without substantial progress that have passed since a youth was housed on the grounds of the Miramichi youth correctional facility while waiting transfer to the residential treatment facility in Spurwink Maine. We have not established a residential care and treatment system that would provide assurance of a decent, respectful future for those autistic adults who will live dependent on the care of others, adults like Benjamin McLatchie in Maine. Group homes are not adequate for all of New Brunswick’s autistic population. Right now many parents are struggling desperately, and facing severe challenges, while trying to care for their adult autistic children at home. The most severely, low functioning autistic adults live at the psychiatric hospital in Campbellton far from parents and loving family members.

I have been present at several meetings over the years where government has been asked to provide a decent residential care system here in New Brunswick. Autism representatives have asked for an enhanced group home system with community based locations in different areas of the province. Of urgent importance has been the need for a geographically centralized combined residential care and treatment facility for autistic adults in Fredericton, close to the resources and expertise of the Stan Cassidy Center, the UNB-CEL Autism Intervention Training program and the University of New Brunswick Department of Psychology.

On this last day of Autism Awareness Month around much of the world and with the reality of the tragedy from Gray Maine still fresh in our hearts I ask you all to move New Brunswick forward to establish the autistic adult care system that is badly needed in New Brunswick.

Respectfully,

Harold L Doherty

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.

autism

An Autism Honor I Truly Value

Last night I was honored with an award, for autism parent advocacy, as part of the Autism Connections Fredericton fundraiser and autism awareness event Oscars for Autism. I have in the past expressly avoided such recognition for fear it would be a distraction that would prevent me from doing what had to be done in advocating for autism services in New Brunswick. Last night's award though originated with people whom I have stood beside for many years in fighting for better lives for New Brunswick's autistic children and adults; people for whom I hold the highest regard and respect.... and it gave me a chance to take the stage and reinforce the reality that right now our priority should be in improving New Brunswick's youth and adult residential care system.

I enjoyed the opportunity to publicly thank Premier Shawn Graham for all that he has done for autistic children and students in New Brunswick. I was particularly pleased to thank former Premier Bernard Lord for everything his government did in laying the foundation for the progress that has been made in provision of autism services for New Brunswick children. In those first years when little in the way of services were available, and knowing the importance of time in obtaining intervention for autistic children as early as possible, things were at times a bit ... intense. Premier Lord left NB politics before being properly thanked for listening and responding in a considered, informed fashion ... despite the intensity. It was, and is, my pleasure to thank both of these leaders and the people in cabinet and the civil service who have made it happen.

"Oscars" were given out to persons with New Brunswick roots who have made outstanding community contributions including NB Premier Shawn Graham, former NB Premier Bernard Lord, Steve Murphy of CTV News, Bernard Richard, NB Child Advocate and Ombudsman, Reid Manorebusinessman (Tim Horton's), Fredericton Mayor Brad Woodside, Dr Eddy Campbell (President UNB) Cathy Hutch, musician and mother of a young autistic woman, the Lapointes (music group), Marc Roberts ( East Coast Music Show) and Sheree Fitch (Author).

Dr. Tara Kennedy was the keynote speaker and gave an excellent presentation providing a basic overview of autism disorders and interventions and commenting on New Brunswick's leadership role as a small province which has done very well in providing early intervention services for autistic children and autism trained teacher assistants for New Brunswick's autistic students.

Photo 1 - My buddy Conor, holding my award today, the reason I have been actively involved with autism advocacy in New Brunswick during the past decade.

Photo's 2,3,4 courtesy of Dawn Bowie:

Photo 2 - Me, posing with award recipient, and Atlantic Canada's prominent news anchor Steve Murphy of CTV/ATV news. It was a pleasure having the opportunity to meet and talk with Steve.


Photo 3 - I had the privilege of standing with some of the people who have contributed much in autism advocacy in New Brunswick: L to R - Paul McDonnell, Gil Blanchette, Nancy Blanchette, Albert Bowie, Dawn Bowie and me.

Photo 4 - Neil Lacroix of autism connections fredericton, Kim McKeigan Speech Language Pathologist, Stan Cassidy Centre, Dr. Tara Kennedy, developmental pediatrician, Stan Cassidy Centre, Kim Gahan, autism connections fredericton,Elizabeth McDonnell, B.Sc.,OT (C), Occupational Therapist and Paul McDonnell Ph. D. clinical psychologist, professor emeritus (psychology) and the "Godfather" of New Brunswick's autism advocacy movement.

Autistic Adult Care Improvements Long Overdue in New Brunswick

I have said often on this blog that I am very happy with the progress that has been made here in New Brunswick in addressing the needs for evidence based autism treatment and in ensuring that autistic children receive a real, quality education. There are still problems that have to be addressed concerning preschool interventions for and education of autistic children but the distance we have traveled in the six years since then Health Minister Elvy Robichaud announced in the New Brunswick legislature that the government was committing funds specifically to autism is remarkable. That progress has, for the most part though, been confined to autistic children. New Brunswick's adults with autism disorders are badly in need of improvements to the barely existent residential care system for autistic adults.

Despite the substantial, and increasing, numbers of autistic adults and the complexity of the challenges they face New Brunswick does not have a residential care system dedicated specifically to adults. New Brunswick adults with autism who require residential care currently live in group homes with persons with other challenges. The problem with a general residential care system is that the staff working in such places will not generally have autism specific training. Nor are the locations necessarily appropriate for persons with autism disorders.

The good will of New Brunswick's political leadership, from either of the two parties that have governed, is no longer a matter of debate in the mind of this autism dad. The path to progress began under the Conservative government of Premier Bernard Lord and has taken some major leaps forward under the Liberal government of Premier Shawn Graham. It would be dishonest for me not to acknowledge what both leaders and their parties have done for New Brunswick's autistic children. Far from slamming these leaders and their parties I personally thank them for what they have done to help our children with autism spectrum disorders.

The story is different though when it comes to New Brunswick's autistic adults where all aspects of autistic life have been largely neglected or mishandled. While there are many pressing needs at the adult level the fact is we have long been in desperate need of an autism specific residential care system with properly trained personnel. Such a system would require autism specific residences in each region of the province with autism trained staff.

There is also a need for a central adult autism treatment and residential care facility in Fredericton. That need is proven by the fact that New Brunswick has sent its more severely affected autistic youths and adults to facilities outside the province including to Maine in the United States. We currently have autistic adults living in the psychiatric facility in Campbellton. I know of at least one instance in Saint John where an autistic adult was living on a hospital ward. In the past an autistic youth, charged with no crime, convicted of no crime, was housed on the grounds of a youth correctional facility in Miramichi while awaiting a spot at the Maine facility.

The talent reservoir for the establishment of an adult care centre already exists in Fredericton which is centrally located providing relatively convenient access compared to more remote locations. The Stan Cassidy Centre which provides pediatric tertiary care services is located in Fredericton on the grounds of the Chalmers Hospital. The main campus of the University of New Brunswick and its excellent, community involved, psychology centre is located in Fredericton. The UNB-CEL Autism Intervention Training program is located in Fredericton and has already indicated that it foresees no problem in developing a training program for adult care workers. All of these resources could be drawn on to supplement and support a modern, secure community based and autism specific residential care and treatment facility.

New Brunswick needs a publicly operated, not for profit, community based residential care system for autistic adults with facilities in each region and a central facility in Fredericton capable of providing in house residential care and treatment for the more severely autistic adults for whom the group homes have already been proven not to be a solution. The political leadership of this province has shown a conscience, substantial good will, and determination in helping autistic children. The time to help autistic adults is overdue though ... long overdue.

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Autism and the Saskatchewan Party Government

The Saskatchewan Party will now form the government of Saskatchewan which, despite a booming economy, has done nothing of substance to help autistic children receive treatment. The defeated NDP government did nothing to address autism treatment issues and many Saskatchewan residents have moved next door to Alberta so their autistic children could receive treatment.

One thing that is abundantly clear in Canada over the past decade is that autism is not a partisan issue. Governments of all political stripes, including the just defeated NDP government of Saskatchewan, have been indifferent at times to the plight of autistic children and adults. Here in New Brunswick it was the previous Bernard Lord Conservative government that first began to take serious steps to help autistic children with pre-school funding for evidence based autism treatment, and that effort is being carried forward now by the Shawn Graham Liberal government in New Brunswick schools where Teacher Aides and Resource teachers are receiving quality autism training at the UNB-CEL Autism Intervention Training program.

Federally the Chretien-Martin Liberals did nothing to help autistic children or adults in Canada while in power. And the NDP did nothing to push a minority Liberal government to address autism issues. In opposition the Liberal Party led by Andy Scott and Shawn Murphy and the NDP led by Peter Stoffer have committed to implementing a National Autism Strategy. Now it is the current Conservative government and an obstructionist separatist party which has indicated they will do nothing of substance to help address autism issues.

Autism was not discussed by campaigning political candidates in the Saskatchewan election as it was in Ontario recently. The Saskatchewan Party is reported to be a right of center party. That may mean something, or it may mean nothing, in terms of its willingness to help the autistic population of Saskatchewan. The one lesson that is clear from history is that autism is NOT a partisan issue. All parties have ignored autism issues for years but change has begun for the better in several jurisdictions by governments bearing different political labels.

Hopefully autistic children and adults will be included in the Saskatchewan of the new Saskatchewan Party government of Premier-Elect Brad Wall.