Mike Lake's Canadian Autism Partnership Motion Defeated And That's A Good Thing

Long time "autism parent" and autism advocate Andrew Kavchak has fought for real treatment for autism as shown in this picture with the late Andy Scott the former MP and highly respected disability advocate from Fredericton, NB.  Kavchak has criticized Mike Lake's motion for a Canadian Autism Partnership as a bureaucracy which would provide no meaningful results to address autism challenges in Canada.

As the information from the Canadian House of Commons Agenda and Decisions website page set out below indicates the opposition motion of  MP Mike Lake was defeated today by a vote of 167 to 130 and this "autism" dad and long time autism advocate is happy.  Sure the motion talks about an autism partnership and requests $19 million but there is no credible way of maintaining that the $19 million dollars would do anything more than create a new quasi governmental bureaucracy one which would not  involve any of the Canadian autism advocates in BC, Ontario or NB whose efforts led to the establishment across Canada of early autism intervention services.  For an excellent analysis of the lack of merit of the motion see the commentary More bureaucracy not the solution for autism treatment by long time, and credible,  autism advocate Andrew Kavchak 

The Motion sponsor, Mr. Lake, has  himself  not been supportive during his years in the Harper government of any meaningful federal role in ensuring that autistic persons across Canada have their complex health and life challenges addressed.  Anyone interested in Mike Lake's non support for autism initiatives while part of the Harper government can enter his name in the search bar of Facing Autism in New Brunswick.  You will find several articles on the subject. 

I did attend a meeting of the CAPP team held in Fredericton and I was not impressed.  I saw nothing beyond the usual divide everyone into tables then shuffle them around to make sure that  no meaningful discussion could take place and no meaningful goals identified and advanced. My perception was that the CAPP organizers were more focused on establishing their organization than in advancing much needed autism services. 

Autism advocates have achieved some success in parts of Canada, including here in NB, in early autism intervention and the NB model has been recommended for consideration by other provinces.  We have also through parent advocacy achieved some progress in educating autistic children.  Adult autism treatment and residential care is non existent and we need to focus on getting results for autistic adults and improving school services not building a new self serving bureaucracy that will assist governments in refusing to focus on providing badly needed autism services.

3:26 p.m.

Opposition Motion

Autism Spectrum Disorder

Negatived

Yeas 130 | Nays 167

Autism Spectrum Disorder

Text of the Motion

That, given that: (a) Autism Spectrum Disorder (“autism”) is widely considered the fastest growing neurological disorder in Canada, impacting an estimated 1 in 68 children; (b) it is a lifelong diagnosis that manifests itself in a wide-range of symptoms, including difficulty communicating, social impairments, and restricted and repetitive behaviour; (c) individuals with autism and their families face unique challenges over their lifespan, often leading to families in crisis situations; and (d) Autism Spectrum Disorder is not just a health issue — it has overarching implications for Canadian society as a whole; accordingly, the House call on the government to grant the $19 million over 5 years requested by the Canadian Autism Partnership working group, Self-Advocates advisory group, and the Canadian Autism Spectrum Disorders Alliance, in order to establish a Canadian Autism Partnership that would support families and address key issues such as information sharing and research, early detection, diagnosis and treatment.

Sponsor

Mike Lake

Latest Activity

Debated (5/18/2017)

NB MP Andy Scott, FEAT-BC, Medicare for Autism NOW!'s Jean Lewis

National Autism Rally, Halifax, May 26 2007,photo by Harold L Doherty

I did not realize until this morning that the late Andy Scott has been honored,  justly honored, for his long time contributions and support to disability issues by the creation of an award in his name to be awarded to persons or organizations who have made contributions to disability issues in NB. Anyone who wishes to nominate anyone for the award can do so at The Honorable Andy Scott Award page.

One of the disability issues that Andy Scott worked on was autism. The picture above shows Andy with Jean Lewis on  at the FEAT-BC, Medicare for Autism NOW!'s National Autism Rally, Halifax, May 26 2007. Andy advocated in Parliament for a real National Autism Strategy with other strong advocates Shawn Murphy MP from  PEI and Peter Stoffer MP from Nova Scotia.

The Honorable Andy Scott Award

Robert Andrew "Andy" Keith Scott (March 16, 1955 – June 24, 2013) was a Member of Parliament representing Fredericton, New Brunswick from 1993 to 2007.  Over the course of his career in Federal politics, Scott served as Solicitor General; Minister of State for Infrastructure and Minister of Indian Affairs and Northern Development. He did not seek federal reelection in 2008 and assumed a research post in social policy at the University of New Brunswick. Scott was a steadfast champion for education and literacy causes.

In the late 1970s as a University student, Andy became one of the drivers for the Venture Van program operated by CRCD (now Easter Seals New Brunswick) which provided accessible transportation to students with disabilities attending public schools before districts took on this responsibility. Andy touched the lives of many people living with a disability and their families in New Brunswick through his volunteer roles with Easter Seals, the New Brunswick Association for Community Living, Camp Rotary, and Disability Awareness Week.

In June 1996, the Government of Canada established the Federal Task Force on Disability Issues, which was chaired by Andy Scott resulting in a major report, Equal Citizenship for Canadians with Disabilities: The Will to Act.  In particular, the task force affirmed a federal role with regard to disability issues and the need for a disability policy framework that would ensure the full inclusion and participation of people with disabilities in Canadian society. 

In 2007 Andy was recognized for his long term support of disability issues through a provincial award as part of New Brunswick Disability Awareness Week.  He is described as a tireless community builder and as a leader and politician with a strong social conscience.  After a courageous battle with cancer, Andy passed away in 2013 at the age of 58.  While Andy may no longer be with us, his life’s work promoting inclusion and human rights for persons with disabilities and others will leave a lasting legacy as someone who truly made a difference.  Scott was the husband of Denise Cameron Scott and the father of three sons, Nathan, Nicholas and Noah.

Autistic Adults Die Young, 16-30 Years Before Others, But Gallant Government Continues to Ignore the Need for an Adult Autism Center/Network

My 21 year old son Conor is a joy in the lives of his  family , friends and those who have met him in NB schools, Fredericton stores and generally. Conor is severely autistic with intellectual disability and epilepsy (frequent tonic clonic seizures).  This places him squarely in the midst of the subgroup on the Autism Spectrum Disorder whose life expectancy is shorter by 30 years than the general population. 

The NB government has ignored those realities for decades and has refused, since 2010, expert advice to build a centralized expert autism center AND network which would address increase the chance for autistic adults to live longer, happier lives.

People with autism tend to die decades younger than the rest of the population, and more needs doing to understand the problem’s causes and to find potential solutions, says a new report from the charity Autistica.

Autistica’s report,1 drawing on recently published research in Sweden, said that people with autism die 16 years sooner on average than they otherwise would, and those whose autism is combined with intellectual disability die 30 years sooner.

Death comes earlier to autistic people, whatever the proximate cause. But epilepsy, which is diagnosed in 20-40% of autistic people, is a major cause of death, especially in those whose autism is severe and combined with learning difficulties.

(Bold Highlighting Added - HLD)

People with autism die 16 years earlier on average, says charity BMJ 2016;352:i1615

Paul McDonnell, September, 2010

"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 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.

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."  

(Bold highlighting added - HLD)

Paul McDonnell Ph.D. is NB's foremost autism expert.  His recommendations via the CBC in 2010 were repeated during a meeting with Minister of Family and Community Services/Social Development Cathy Rogers not long after the Gallant government dame to power.  Dr. McDonnell enlarged on his media comments with a written presentation and was accompanied by parent advocates, including me.  Minister Rogers brought some key advisers with her and I was personally optimistic.  Unfortunately Minister Rogers was moved in a cabinet shuffle and Minister Horsman transferred from Justice.  Minister Horsman has shown no inclination to take adult autism issues seriously and is content with exiling NB autistic adults to the Restigouche Regional Psychiatric Hospital on our northern border far from most families and far from the autism expertise developed in Fredericton a central location closer to most families.

As stated above Social Development Minister Horsman is happy with autistic adults being sent to the Restigouche Hospital on NB's Northern Border far from most families in southern and central NB.  Campbellton itself is a small city with a shrinking population.   When prominent Liberal Bernard Richard completed his mental health review he expressed thinly veiled anger at the current Gallant Liberal government for its decision to place a mental health center in the Restigouche Hospital in Campbellton. He was joined in criticizing that decision by fellow prominent Liberal and former cabinet minister Michael Murphy QC:  

Bernard Richard slams choice of location for youth facility

Putting mental health unit in Campbellton is 'worst' decision former youth advocate has seen in a while

By Matthew Bingley, CBC News Posted: May 11, 2015 7:50 AM AT Last Updated: May 11, 2015 12:26 PM AT

"In January, Richard and a colleague canvassed mental health professionals to see what they wanted for a new facility.They made recommendations to the government to build the facility in Moncton where access to two hospitals, in both languages would be available.They also argued that an urban location would have more luck producing specialized services and luring doctors.

Michael Murphy also chides choice

Former Liberal health minister Michael Murphy took to Twitter Monday to join those panning the choice of Campbellton. After Richard went public with his concerns about the choice, Murphy joined in the chorus of opposition.A mental health treatment centre for youth has been discussed in New Brunswick for more than a decade and in a rare Saturday news conference, the province announced the project would proceed adjacent to the Campbellton Regional Hospital.

"Bernard Richard...appalled by location of new centre.  I agree," tweeted Murphy.

Murphy blamed the decision on Liberal party politics and pointed to his former cabinet colleague Donald Arseneault as the likely source of the decision. Arseneault is the current minister of energy and mines and represents the riding of Campbellton-Dalhousie in the legislature. Arseneault made the actual announcement in Campbellton on Saturday, rather than Health Minister Victor Boudreau.

"Power of Donald Arseneault is evident by this," tweeted Murphy. "The location away from family for most young patients may only aggravate the condition.  But this government is intensely political."

(Highlighting added - HLD)

Autistic adults have drastically shortened life expectancy - 16 to 30 years shorter depending on their location on the autism spectrum.  Those expectations and the quality of their lives could be expanded dramatically if an autism center based in Fredericton near the autism expertise developed over the last 15-20 years could be built as a center for an autism network of group homes which together could provide the long term residential care and treatment needed for persons with moderate to severe autism disorders and related disorders.   Unfortunately as prominent Liberals Bernard Richard and Mike Murphy have pointed out the current Gallant government is motivated by politics not by concerns for people like NB's adult autistic population with their shortened life expectancy.

I have to continue to hope, and to advocate, for a different approach to adult autism care in NB. My son has a shortened life expectancy because of his condition and because our government ignores his reality a reality shared by many NBers with autism disorders. It doesn't have to be this way. Professor McDonnell has the professional expertise to point to a better future and he has done so.  

I also rely on my  expertise as a dedicated father who has seen my son, as his mother and I raised him,  struggle with his serious challenges: severe autism, intellectual disability, seizures, self injurious behaviours.  I have also  though seen the joy he has experienced in life; a joy which he shares with all who know him.  I post pictures of my wonderful son again following this commentary and hope that before too long NB governments start to address the challenges my son will face when I can no longer, through age or death, provide the care he needs; the care that will not permit his life, and his joy, to be drastically shortened. I know my son can have a happy life, a healthy life. I have helped him and experienced his successes and joys.  I will continue to do so and will continue to hope for a responsible government to take charge and develop the adult autism center and network that has been needed for so long.

Another Conor Seizure This Morning, Another Reminder of His Shortened Life Expectancy

People with autism die 16 years sooner on average than they otherwise would, and those whose autism is combined with intellectual disability die 30 years sooner.  Death comes earlier to autistic people, whatever the proximate cause. But epilepsy, which is diagnosed in 20-40% of autistic people, is a major cause of death, especially in those whose autism is severe and combined with learning difficulties. Among those who are autistic but with less severe symptoms, suicide is a common cause of death, especially among women. 

People with autism die 16 years earlier on average,says charity, Hawkes, Nigel. BMJ : British Medical Journal (Online); London352 (Mar 17, 2016)

I was reminded, yet again, of my son Conor's shortened life expectancy as summarized in the BMJ article above, when he suffered a tonic clonic, "grand mal" seizure shortly after 5:30 am. I sleep on a couch in the living room, which is near Conor's room, in the hope that if he suffers a seizure during the night I will hear him and can go to his aid. This morning I was up at 4:45 when he went to the washroom before going back to bed. He was smiling, in great spirits. 45 minutes later I heard what I first thought were laughing noises but quickly thought they seemed odd and I jumped up and went to his room where he was sitting up in a soft backed chair (where he often sits when waking before his 6:01 time for coming out of his room). He was in full convulsions with saliva coming out of his mouth and was not conscious. I was able to pull him up straight so he could clear his throat more easily and tilted is head a bit to his side It took awhile before he could respond to me verbally. He is still a bit tired but has had his meds, breakfast, time on "red computer" and is lying on the cozy couch watching Winnie the Pooh's Grand Adventure.

There is More to Real Autism Awareness than Pretty Blue Lights - 4 Years Ago We Almost Lost Our Buddy, Our Autistic Son Conor

Conor at the Intensive Care Unit of the Doctor Everett Chalmers 

Hospital, Fredericton, April 2013 when his life was at serious risk

from an adverse reaction, Rhabdomyolisis, to his seizure meds.

April, Autism Awareness Month has come and gone and to my knowledge little to no real awareness has yet been raised about the serious risks faced by those with autism spectrum disorder particularly those with intellectual disability and in much higher rates than among the general population ... seizures and the medications to treat seizures.  4 years ago as I was reminded by a Facebook reminder notice we almost lost our autistic son Conor to an adverse reaction ( a condition which was diagnosed by the treating hospital ICU team as Rhabdomyolisis)  to his seizure medication.  Conor's conidtion fits the model described in the following BMJ article.  Severely autistic, combined with learning difficulties which also fits him with the very high 20-40% of persons with autism who also suffer fro epilepsy.  The harsh reality staring Conor and all of us who love him is that persons in that group severe autism, learning difficulties and epilepsy die as much as 30 years sooner.   Not the type of autism awareness you generally hear about in the blue light autism is beautiful blend of autism "awareness".

People with autism die 16 years sooner on average than they otherwise would, and those whose autism is combined with intellectual disability die 30 years sooner.  Death comes earlier to autistic people, whatever the proximate cause. But epilepsy, which is diagnosed in 20-40% of autistic people, is a major cause of death, especially in those whose autism is severe and combined with learning difficulties. Among those who are autistic but with less severe symptoms, suicide is a common cause of death, especially among women. 

People with autism die 16 years earlier on average,says charity, Hawkes, Nigel. BMJ : British Medical Journal (Online); London352 (Mar 17, 2016)

"Conor Is Safe Now But We Almost Lost Our Buddy: THANK YOU To ALL Who Saved Him!

 http://autisminnb.blogspot.ca/…/conor-is-safe-now-but-we-al… In mid-April, pursuant to a neurologist's advice, we started Conor on Lamotrogine, an anti-eleptic drug which is reputed to have benefited many people suffering from seizure activity. Hours after receiving his third dosage Conor suffered his second Grand Mal seizure, that we know of, since his first in November 2012. Last week he became extremely drowsy and last Friday April 26, 2013, our family doctor recommended we reduce the dosage (the neurologist is out of town until May 13, 2013). Later, early Friday evening Conor's condition worsened noticeably and a rash had developed. Rash development is a known warning sign of a negative Lamotrogine reaction and Conor was taken to the DECH (Doctor Everett Chalmers Hospital) emergency where he received immediate attention and transferred to the Intensive Care Unit, the ICU. Conor's reactions have been very serious with risks in several key categories including risk to his kidneys and liver. Thanks to our family doctor and the excellent care and attention of the Emergency and ICU personnel our Buddy is still with us. Without their help he probably would not be. Conor is still in the ICU but is expected to transfer to pediatrics in the next day or two. He has improved dramatically.

To everyone involved with protecting and saving our buddy Conor his Mom and Day say THANK YOU VERY MUCH, THANK YOU!

PS. We can hardly wait for the phsyio and other necessary recovery interventions to give us back our Run, Jump, Fly Boy"

Autism awareness should create awareness of the serious, life threatening conditions commonly associated with autism disorders and limiting life expectancy by 16 to 30 years

We were fortunate to have access to excellent medical care and attention from the ICU and Emergency teams, their supporting staff and our family doctor,  To all of them I say once again THANK YOU FOR SAVING OUR SON's LIFE. 

To everyone involved with "Autism Awareness" events though I say start teaching the public about all aspects of autism disorders including some of the most frightening realities.