Wow! Federal NDP Replies to My Inquiry This Morning Re Negotiations to Include ABA for Autism under Medicare

I confess I was surprised  to get a same day response this evening from the federal NDP to my question this morning addressed to party leader Thomas Mulcair.  The federal NDP committed to continuing the efforts which they have in fact made over the years in Parliament towards creation of an EFFECTIVE national autism strategy.   

To Canada's  federal NDP and leader Thomas Mulcair I say thank you.

8:20 PM (9 minutes ago)

to me

Dear Mr. Doherty:

Thank you for providing such a helpful summary of your discussions with us on this important issue.

New Democrats have a proven record of working with the autism activist community toward increasing awareness and supports for those living with autism spectrum disorders. NDP MPs have, over many years, proposed bills and motions in Parliament toward the creation of an effective national autism strategy. We are committed to continuing that effort as government.

The success of any national autism strategy that includes medically recognized treatments such as Applied Behavioural Analysis and Intensive Behavioural Intervention, depends on the commitment and involvement of provincial and territorial, as well as federal governments. At the moment, for lack of federal leadership, the levels of support vary widely across the country.

Over the past decade, the Harper government has consciously chosen to abandon its leadership role in Canada’s health system and has turned its back on the federal-provincial-territorial cooperation necessary to maintain and improve our public system – including measures to better address autism needs. Stephen Harper has not only refused to renew the national health accord but has unilaterally cut billions of dollars from future provincial/territorial health transfers.

Under Tom Mulcair, an NDP government will live up to its national leadership role and move quickly to re-establish a collaborative working relationship with provincial and territorial governments. A New Democratic autism strategy would be forged within this renewed negotiation and would establish, with provincial and territorial cooperation, access to treatment across Canada.

Canada’s New Democrats | Le NPD du Canada

Ready for change | Ensemble pour le changement

www.ndp.ca

Mr. Mulcair Will the NDP Negotiate A New Health Accord to Include ABA for Autism Under Medicare?

September 30, 2015

Thomas Mulcair 

Leader of the Official Opposition

Dear Mr Mulcair

The Federal NDP has in the past been very helpful in addressing autism on a national level including efforts by Nova Scotia MP Peter Stoffer who worked with the late Fredericton Liberal MP Andy Scott to effect passage of a National Autism Strategy motion in the House of Commons albeit one  which did not address autism treatment coverage under Medicare.  In July 2014 I asked if the NDP would support a real National Autism Stragegy.  I receivd the following positive response from your office:

Dear Mr. Doherty,

Thank you for writing. We appreciate hearing of your advocacy work on behalf of your son and all individuals living with autism spectrum disorders.

Please be assured that New Democrats are determined to help put the needs of Autistic children on the political map. The NDP supports the continuing efforts to create a National Autism Strategy, therefore ensuring that individuals would receive the highest level of care, regardless of which region of Canada they live in.

As you mentioned, NDP MP Glenn Thibeault is helping to provide leadership on this matter along with working to have the Canada Health Act amended to include Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) as medically recognized treatments for individuals living with autism spectrum disorders. (http://glennthibeault.ndp.ca/post/thibeault-re-introduces-autism-legislation) 

Going forward you can count on our team of New Democrat MPs to continue to speak out on this matter. It’s time for leadership that will move Canada forward.

Again, thank you for taking the time to be in touch.

All the best,

Office of Thomas Mulcair, MP (Outremont)

Leader of the Official Opposition

New Democratic Party of Canada

Here in Fredericton I asked candidates in the current election the following question  as part of the Medicare for Autism Now!'s 1 in 68 campaign:

I was very pleased to receive the following excellent response to the One in 68 question from the Fredericton NDP candidate Sharon Scott-Levesque:

Hello Harold,

I wish to thank you for your message regarding the inclusion of Applied Behaviour Analysis in Medicare. As you have noted, this is an issue affecting a growing number of Canadian families, and I understand the high costs of treatment are of great concern.

As you know the Canada Health Act requires provinces to cover medically necessary services without naming any particular procedure.  This means that the decision on what to cover has been left up to the provinces, creating a patchwork system where some provinces provide coverage for Applied Behavioural Analysis and others do not.

-

I recognize that this disparity creates a hardship for families and myself and the NDP are interested in working with the provinces to see this disparity eliminated. This is definitely a subject we will raise with the provinces when we negotiate a new Health Accord.

I do support this change and hope we can work together in the future.

Regards,

Sharon Scott- Levesque RN

Fredericton NDP Candidate

Mr Mulcair, past NDP contributions have been helpful but the failure by the federal government to see that science based ABA/IBI treatment for autism is included under Medicare means that many autistid children have not received the training which could have helped improve the core deficits of their autism disorders.

NDP candidate Sharon Scott-Levesque's statement of her support is much appreciated. 

Mr. Mulcair, can you confirm that the NDP will commit to  negotiating a new  Health Accord with the provinces which will include science based ABA/IBI  treatment for autism spectrum disorder uner Medicare?

Respectfully,

Harold Doherty

Fredericton, NB

Join Fredericton Green Candidate Mary Lou Babineau In Signing the Medicare for Autism Now! Petition

                          https://www.change.org/p/government-of-canada-medicare-for-autism-now

Statement on Medicare for Autism now!

While it is true that the tremendous advancements in medicine and technology have granted us longer lives, there are still distressing developments: for instance, the increasing number of illnesses and syndromes appearing and affecting our children. The rates of attention deficit disorder, autism and others are on the rise.

The Canada Health Act has five general principles – public administration, comprehensiveness, universality, portability, and accessibility, but the federal government has not been applying them to support greater national consistency and equal quality of services from coast to coast. In addition, the federal government has failed to develop a national strategy to address such challenges as autism and dementia.

I recognize that it is vital to ensure that the federal government provides funding as necessary and I also think that this funding needs to be accompanied by strong federal government leadership. I pledge to follow through on our commitment to a science-based national Mental Health Strategy and this is something I will advocate for in the amendment process for a new and improved Canada Health Act. 

Sincerely,

Mary Lou Babineau
Green Party Candidate for Fredericton

Join Mary Lou Babineau in signing the Medicare for Autism Now! petition 

here: https://www.change.org/p/government-of-canada-medicare-for-autism-now

Fredericton NDP Sharon Scott-Levesque Supports ABA Coverage For Autism Under A New Canada Health Act Accord

Hello Harold,

I wish to thank you for your message regarding the inclusion of Applied Behaviour Analysis in Medicare. As you have noted, this is an issue affecting a growing number of Canadian families, and I understand the high costs of treatment are of great concern.

As you know the Canada Health Act requires provinces to cover medically necessary services without naming any particular procedure.  This means that the decision on what to cover has been left up to the provinces, creating a patchwork system where some provinces provide coverage for Applied Behavioural Analysis and others do not.

-

I recognize that this disparity creates a hardship for families and myself and the NDP are interested in working with the provinces to see this disparity eliminated. This is definitely a subject we will raise with the provinces when we negotiate a new Health Accord.

I do support this change and hope we can work together in the future.

Regards,

Sharon Scott- Levesque RN

Fredericton NDP Candidate

Thank you Sharon Scott-Levesque for supporting the inclusion of ABA for autism treatment in a new Canada Health Act accord.  Harold Doherty

The Environment Is Of Vital Importance - Next Time Include Elizabeth May

This blog is focused on autism disorders, very closely related conditions including intellectual disability and epilepsy.  It is about my son and the joy he brings me each day despite his serious disorders and challenges.  Occasionally it is just a celebration via pictures of the pleasure I experience each day that I live in Canada's Green City .... Fredericton.  Fredericton has been called the Green City, not because of any political party dominance under the green banner although Mr David Coon shook 'the traditional voting patterns one year ago when he was elected as an MLA in Fredericton , but because of its abundant natural growth and wildlife.  It is a beautiful green city and I love Fredericton.  Beyond these topics I don't usually touch directly on politics unless it involves advocating for autism services in  New Brunswick and federally.

I am making an exception today though.  I am asking whoever organizes future debates in this election period to include Elizabeth May in those debates. I am seriously disappointed with the "masterminds", the old boys, who decided to exclude Green Party leader Elizabeth May from the debate last night.  Obviously elections are about electing representatives including a party to form our government.  But elections are also about discussing important public issues and few public issues are as important as our environment.  The wizards that organized yesterday's leaders debate, hiding it so it could barely be found and excluding Elizabeth May did a disservice to all Canadians.  Regardless of the party affiliation for the person we vote for as MP this country can use Elizabeth May.

Elizabeth May can discuss all issues with her very sharp  and well informed mind.  But she brings an exceptionally important perspective  and presence to the discussion of our environment ... the most important issue, in my humble opinion, facing all Canadians. 

Research Review: Autism Spectrum Disorder and Epilepsy: Two Sides of the Same Coin?

My son Conor, now 19 1/2 years old, stimming, a recognized feature 

of autism spectrum disorder, in this older picture.

Conor, a couple of years ago, at the Chalmers Hospital 

intensive care unit, where he was being treated for  rhabdomyolisis, 

a serious adverse  reaction to his epilepsy seizure meds at that time. 

As the father of a son with autism spectrum disorder, intellectuall disability and epilepsy I have asked myself if these conditions are in fact related. It has been my non evidence based belief, based solely on observing, caring for and loving my son for almost 20 years that he has one condtion that affects him and causes his deficits.

I have attached a copy of the abstract of the reseach review Autism Spectrum Disorder and Epilepsy: Two Sides of the Same Coin?  I  hope to obtain a copy of the study itself and more importantly I hope that the study encourages more study and discussion by neurological researchers and professionals of this subject.

Autism Spectrum Disorder and Epilepsy: Two Sides of the Same Coin?

Abstract

Autism spectrum disorders and epilepsy commonly co-occur. In this review, we consider some unresolved questions regarding the temporal relationship, causal mechanisms, and clinical stratification of this comorbidity, highlighting throughout the interplay between autism spectrum disorder, epilepsy, and intellectual disability. We present data on the clinical characterization of children with autism spectrum disorder and epilepsy, discussing distinctive phenotypes in children with this comorbidity. Although some distinctive clinical features emerge, this comorbidity also informs convergent pathways in genetic variants that cause synaptic dysfunction. We then move beyond diagnostic categorization and consider the extent to which electrophysiology as a quantitative biomarker may help guide efforts in clinical stratification and outcome prediction. Epilepsy, and atypical electrophysiological patterns, in autism spectrum disorder may inform the definition of biologically meaningful subgroups within the spectrum that, in turn, can shed light on potential targets for intervention.
© The Author(s) 2015.

KEYWORDS:
autism spectrum disorder; biomarkers; electroencephalography; epilepsy; intellectual disability

http://www.ncbi.nlm.nih.gov/pubmed/26374786

Jeste SS1, Tuchman R2. J Child Neurol. 2015 Sep 14. pii: 0883073815601501. [Epub ahead of print]

Fredericton Green Mary Lou Babineau: A Resounding YES!!! to Including Science Based ABA/IBI Autism Treatment Under Medicare

"Dear Harold,

It was wonderful to speak with you, too! This is an issue that is so critical to me and to my family.

Please post my response as a resounding YES!!!

Hope to see you again soon,

Mary Lou"

The One in 68 campaign of Medicare for Autism Now! is well under way.  Candidates in various ridings are being asked to provide clear answers to the "One in 68 QUESTION": "As a member of parliament, will you introduce or support legislation amending the Canada Health Act to include science-based autism treatment (ABA/IBI) under Medicare"?  The One in 68 refers to autism rates as estimated by credible US authorities.  Our federal government has been made aware over the past decade and more of the need to include science based ABA/IBI under medicare.  Some Canadian provinces including New Brunswick have provided ABA treatment for autism in various degrees,  Others including neighboring Nova Scotia have provided minimal services for autism. 

I hope to speak with all candidates in the Fredericton riding to discuss autism generally and to ask their response to the One in 68 Question.  It was a plesasure to meet with Mary Lou Babineau of the Green Party.  As her answer above indicates she has a real, family based interest in the One in 68 question.  We had a great discussion about autism generally and  how it has affected those close to us. and the need for assistance for those affected by autism. Her very sincere interest in autism is reflected in her answer:

Thank you Mary Lou Babineau for your  resounding YES!!! to inclusion of science-based autism treatment (ABA/IBI) under Medicare.

Conor's Superstore Seizure

Yesterday Conor, his mother and I went to the Superstore on Main Street in Fredericton. As we moved to the express cash to pay for our purchases Conor began convulsing and a full scale tonic clonic or grand mal seizure was underway.  I was able to hold him carefully as he fell to the floor to prevent head injury, placing him on his side so he would not choke.  A shopper, who happened as it tourned out to be a paramedic, came by and provided assistance, including timing the convusions which lasted approximately 3 minutes. and providing assessment commentary as Conor recovered.  The 3 minutes of convulsions and subsequent recovery time may not seem like much but if you are holding your son's head up off the floor while he convulses on the floor of a busy grocery store it can seem much longer. 

Three well trained employees of the Superstore also provided assistance directing shoppers away from our immediate area towards a different cash, forming a line between us and other shoppers, getting a thick blanket for under Conor's head, offering moral support and suggestions, making   a wheelchair available for when Conor was ready to be moved to my car, and actually accompanying us to our car in the parking lot.

Thank you to the Superstore who had trained staff on site to assist in seizure situations, thank you to the 3 employees who provided assistance and support and thank you to the paramedic who happened to be shopping in our immediate vicinity as Conor begain convulsing.

Thank you everyone.

Canada's REAL National Autism Strategy - Shawn Murphy's Bill C-304

There is currently a group receiving money from the Harper government, purportedly to develop a "National Autism Strategy". It is an election year handout from a government which has consistently opposed a meaningful role for the federal government in ensuring that autistic children and adults in Canada receive the treatment and services they need to live meaningful, healthy lives.  

Parents in Canada have fought for many years with varying levels of success for government coverage of evidence based ABA treatment for autism disorders.  In 2006 former Charlottetown MP Shawn Murphy articulated a REAL National Autism Strategy when he introduced Bill C-304 which was defeated by a Harper Conservative-Bloc Quebecois coalition vote.   

L: Former Charlottetown MP Shawn Murphy 

C: NB Senator Jim Munson 

R: Late Fredericton MP Andy Scott

3 Strong Advocates for a National Autism Strategy

Federal politiicans and subservient autism charities should stop pretending and stop yakking about a National Autism Strategy if they do not intend to adopt the REAL National Autism Strategy proposed in 2006 in Shawn Murhpy's Bill C-304:

C-304

First Session, Thirty-ninth Parliament,
55 Elizabeth II, 2006

HOUSE OF COMMONS OF CANADA

BILL C-304

_____________________________________________

FIRST READING, MAY 17, 2006

_____________________________________________

MR. MURPHY (Charlottetown)

1st Session, 39th Parliament,
55 Elizabeth II, 2006

HOUSE OF COMMONS OF CANADA

BILL C-304

An Act to provide for the development of a
national strategy for the treatment of
autism and to amend the Canada Health
Act

Her Majesty, by and with the advice and
consent of the Senate and House of Commons
of Canada, enacts as follows:

SHORT TITLE

1. This Act may be cited as the National
Strategy for the Treatment of Autism Act.


NATIONAL CONFERENCE

2. The Minister of Health shall, before
December 31, 2006, convene a conference of
all provincial and territorial ministers responsible
for health for the purpose of working
together to develop a national strategy for the
treatment of autism. The Minister shall, before
December 31, 2007, table a report in both
Houses of Parliament specifying a plan of action
developed in collaboration with the provincial
and territorial ministers for the purpose of
implementing that strategy.

AMENDMENTS TO THE CANADA
HEALTH ACT

3. Section 2 of the Canada Health Act is
renumbered as subsection 2(1) and is
amended by adding the following:

(2) For the purposes of this Act, services
that are medically necessary or required under
this Act include Applied Behavioural Analysis
(ABA) and Intensive Behavioural Intervention
(IBI) for persons suffering from Autism Spectrum
Disorder.

Autism Disorder AND Epilepsy (But NO SUDEP!!!) at 6:05 AM

I was awake at 5:30 this morning, had some breakfast, and was enjoying a mug (not a cup, a mug) of coffee when I noticed that the time was 6:05 am.  Startled I jumped up to see if everything was OK with my son Conor.  Conor suffers from severe autism disorder and epileptic seizures, including half a dozen grand mal or tonic clonic seizures, since last Christmas. One feature of Conor's autism disorder is that he gets up at precisely 6:01 a.m. every morning.  He often wakes up before 6:01 but stays in bed until that time and then gets up.  Until this morning I can not recall the last time he might have slept in past 6:01.  I was worried when he had not come out of his room by 6:05. 

I worried because of the epileptic seizures from which he suffers. (My fear was brief; gone as soon as I ran into his room and saw him stirring)  Some who suffer from such seizures have been known to die in their sleep with no clear explanation, a condition called SUDEP, sudden unexpected death in epilepsy.  A special program  called The Center for SUDEP Research which will be a "Center Without Walls for Collaborative Research in the Epilepsies" has been  established in the US by the National Institute for Neurological Disorders and Stroke (NINDS)  to tackle SUDEP.

 A NINDS press release provides an overview of SUDEP and a brief description of the plan of action:

"While the causes of SUDEP are currently unclear, mounting evidence points to seizures that induce structural defects and/or brain circuit malfunction in areas that control cardiovascular and/or respiratory functions. Using a multidisciplinary approach, scientists and clinicians participating in the new center without walls hope to understand what causes SUDEP and how can it be prevented.

One team of researchers will identify genes, predisposition to neurochemical imbalances, and structural irregularities in the brain that may increase the risk of cardiac arrhythmias and respiratory disruptions in epilepsy. In parallel, another team will develop a sophisticated repository for storing and sharing genetic, tissue and clinical data samples collected from 400 study participants with epilepsy per year for three years at each of 10 clinical sites across the country. This team will also analyze the collected samples to identify risk factors for SUDEP."

Some may question why I would have been apprehensive about the possibility of SUDEP when my son did not come out of his room at 6:01 am.  The primary reason is that his adherence to the 6:01 routine was until this morning  almost without exception, a feature of his severe autism disorder.  The second reason is that a good friend who was, and is, very active in autism advocacy in New Brunswick lost her adult son to SUDEP. In that case her son appeared to be sleeping in past his usual time just as my son did this morning ordinarily a blessing for both parent and son. Her son, like mine, suffered from both autism and seizures, and was not sleeping in, tragically he had passed in his sleep.

As the parent of a son with severe autism who suffers from epileptic seizures I can not take any break from routine for granted, even very thankfully as it turned out this morning, one resulting from a few minutes of extra sleep. 

Surprise! A Meaningful Autism Disorder Study Provides Evidence of Autism's Harsh Realities

Autism is a disorder which, far beyond its core diagnostic criteria, brings with it higher than average medical conditions and psychiatric illnesses.   The health status of adults on the autism spectrum study confirms the harsh realities of autism disorders and should not be ignored or lightly dismissed by academics, mainstream media or professional "self" advocates who, despite their very high functioning levels, insist on burying the harsh realities of the severely autistic, like my son, in the mounds of autism ignorance they dump on the public landscape. As the study indicates autism disorders mean significantly higher than average psychiatric illnesses and medical conditions.  Not much joy to be found in those realities.This study though should be helpful in bringing a much needed dose of autism realities to the  public understanding of autism disorders and the harsh realities that accompany them.

The health status of adults on the autism spectrum

1. Lisa A Croen1
2. Ousseny Zerbo1
3. Yinge Qian1
4. Maria L Massolo1
5. Steve Rich2
6. Stephen Sidney1
7. Clarissa Kripke3

1. ¹Kaiser Permanente Northern California—Oakland, USA
2. ²Kaiser Permanente Northern California—Santa Rosa, USA
3. ³University of California, San Francisco, USA

1. Lisa A Croen, Division of Research, Kaiser Permanente Northern California—Oakland, 2000 Broadway, Oakland, CA 94612, USA. Email: Lisa.A.Croen@kp.org

Abstract

Compared to the general pediatric population, children with autism have higher rates of co-occurring medical and psychiatric illnesses, yet very little is known about the general health status of adults with autism. The objective of this study was to describe the frequency of psychiatric and medical conditions among a large, diverse, insured population of adults with autism in the United States. Participants were adult members of Kaiser Permanente Northern California enrolled from 2008 to 2012. Autism spectrum disorder cases (N = 1507) were adults with autism spectrum disorder diagnoses (International Classification of Diseases-9-Clinical Modification codes 299.0, 299.8, 299.9) recorded in medical records on at least two separate occasions. Controls (N = 15,070) were adults without any autism spectrum disorder diagnoses sampled at a 10:1 ratio and frequency matched to cases on sex and age. Adults with autism had significantly increased rates of all major psychiatric disorders including depression, anxiety, bipolar disorder, obsessive–compulsive disorder, schizophrenia, and suicide attempts. Nearly all medical conditions were significantly more common in adults with autism, including immune conditions, gastrointestinal and sleep disorders, seizure, obesity, dyslipidemia, hypertension, and diabetes. Rarer conditions, such as stroke and Parkinson’s disease, were also significantly more common among adults with autism. Future research is needed to understand the social, healthcare access, and biological factors underlying these observations.

A Positive Adult Autism Meeting with Social Development Minister Cathy Rogers

Minister of Social Development Cathy Rogers

Photo Source: NB Liberal Site 

July 14, 2015 Meeting with Social Development Minister Cathy Rogers
at 551 King Street, Photo by Harold L Doherty

On July 14, together with autism advocate Cynthia Bartlett and Clinical Psychologist and Professor Emeritus (Psychology) Paul McDonnell I met with Social Development Minister Cathy Rogers and 3 of her advisers.  The meeting had been requested by Minister Rogers when it became clear in the Legislature gallery that I, and presumably some others in the gallery, were unhappy with the government’s response to opposition MLA Ernie Steeves motion on adult autism care.  Bathurst MLA Brian Kenny, with whom I had spoken during our small demonstration outside the Legislature earlier that day was talking to Minister Rogers and pointing up at me.  A short time later Mr. Kenny came up to the visitors’ gallery and asked me to come out to the hall where Minister Rogers asked me if we could schedule a meeting to which I agreed.  I was thankful for the opportunity to address the adult autism care issues which have never been addressed in any coherent, systematic and well informed manner.  I was very pleased that Cynthia and Paul were available to attend at the meeting and share their experience and expertise.

The principle around which our discussion took place was the same principle on which those of us who advocated as parents for early autism intervention in NB  relied on in our successful advocacy efforts – the need for an evidence based approach. Fortunately the Minister and her advisers seemed to be in agreement with this principle at outset and needed no convincing.  That may not sound like much today but it was not always an easy sell in our early advocacy efforts in a province where clichés about community and inclusion are often sold as solutions to the most challenging disorders and deficits.

The evidence with respect to adult autism care in NB is clear: we do not have a plan to address in a humane, professional, reliant manner the needs of autistic adults, particularly those at the severe end of the spectrum, in New Brunswick.  We have housed New Brunswick ‘s autistic adults in a variety of hospital settings from general hospital wards to the Restigouche  Regional Psychiatric Hospital in Campbellton far from the bulk of NB’s population, far from most families.  We have housed a NB autistic youth on the grounds of the Miramichi Correctional Facility only because no other location had the resources to provide proper care and safety.  That youth and at least one young man were sent to the Spurwink facility in Maine for several years at a cost to the Province of approximately $300,000 per year per person.

What we discussed was the proposal developed largely by Paul McDonnel with input from parent advocates including Dawn Bowie, Lila Barry, Cynthia Bartlett and me and enunciated in principle in his 2010 CBC internet interview and analysis:

September 2010, CBC, N.B. can be a leader in autism services (Analysis, Paul McDonnell)

"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. The costs of not providing such services can be high financially and in terms of human costs. As a psychologist in private practice I know there are large numbers of older individuals who are diagnosed later in life with Asperger's Syndrome that have no access to professional services of any kind.

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 resident 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."

There was also discussion of some of the serious issues that often accompany autism including intellectual disability, seizures, self injury, wandering and the need for surveillance of some autistic adults to ensure their safety.

The Minister did not make any clear commitments, at least as far as I understood our discussion.  She did say that other departments would have to included in the discussion, a point on which we agreed.

My assessment is that the meeting was positive and that the Minister sees autism care as a need that really has to be addressed in New Brunswick.

It is up to parents though, as it always has been, to keep these needs in the forefront if we want decent places for our children to live as adult; places where they can live  happy lives, according to their level of need,  with proper health care, education and security.

6 Years Later New Brunswick STILL Hasn't Addressed Adult Autism Care

Years have passed, governments have come and gone, but still the elected  members of 

the New Brunswick legislative assembly, despite international recognition for its parent

 advocacy driven early intervention and school autism services, have not seen fit to provide

 a systemic adult care autism system in New Brunswick.

The following blog commentary is a re-post, word for word, of a commentary I posted on May 5, 2009: Autistic Adult Care Improvements Long Overdue in New Brunswick.  Since then one group home has received some training for staff from UNB via the Department of Social development. Beyond that though there has been very little progress. As I said in concluding 6 years ago:"The time to help autistic adults is overdue though ... long overdue"  Today, over 6 years later, that statement is truer, and sadder, than ever:

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.