Cross-country consultations 

for an accessible Canada 

By Randy Pinsky

Recently, Montrealers packed the Palais des Congrès to discuss gaps in the system for those with a disability as part of a cross-country consultation for a national law of accessibility. Stakeholders with physical, hearing, visual, as well as intellectual disabilities, reinforced the need to be considered in all aspects of this planned legislation in order to have a truly ‘inclusive’ Canada.

Armed with powerful testimonies, individuals representing various interest groups expressed concerns and suggested areas requiring attention. From the need for more accessible housing and equal employment opportunities, to services for people with special needs and signing interpreters at health centers, this truly was an active community coming together, determined to be heard.

And heard they were! Stéphane Lauzon, Parliamentary Secretary for Sport and Persons with Disabilities, introduced the parameters of the consultation for this historical law of accessibility, ending with, “à vous, la parole!”

But how did this whole discussion come about? The Honourable Carla Qualtrough, Minister of Sport and Persons with Disabilities (Canada’s first minister for this clientele) and a former Paralympian, was charged with the task of creating a law of accessibility with nation-wide applicability. (See our feature article about The Honourable Qualtrough in the Fall 2016 / Winter 2017 edition of Inspirations.) How ‘accessibility’ was to be defined and implemented necessitated public input and contributions.  

A cross-Canada public consultation tour was launched in September 2016, and will continue until February 2017. Its mission is to identify challenges in daily life and areas in need of improvement, as well as contest misconceptions about disability (and ability!). According to the official website, “the government of Canada is committed to eliminating systemic barriers and delivering equality of opportunity to all Canadians” in order to create a inclusive society.

The Honorable Carla Qualtrough, Minister of Sport and Persons with Disabilities.

Source: http://accessnow.me/blog/canadian-government-consultations-begin-establish-accessibility-legislation/

While a number of motions for accessibility exist (such as wheelchair-accessible buses), these are often viewed as mere tokens as opposed to truly meaningful actions. Participants argued that the system is slow to change, and operates in a reactive manner with the onus being on the individual with disability; a process Qualtrough terms as “exhausting, expansive and unfairly burdensome”. She continued: “When systems and spaces are accessible, every Canadian wins. Barriers are bad for business”.

As reinforced in the consultation, change is long overdue. Our neighbours to the South have had the Americans with Disabilities Act since 1990, and while some provinces have accessibility legislation, they are recent or still in the process of adoption.

For an accessibility legislation to be truly effective, those directly impacted must be involved at all aspects of the decision-making process. Such a sentiment was echoed in the Montreal consultation by a community leader for the hearing-impaired who stated: “We talk about accessibility and equality but when decisions are made, they are made by hearing people, not us. We are only consulted after they have been agreed upon”. Other speakers with physical challenges reinforced the irony of being expected to approve resolutions made by able-bodied individuals. 

Over 150 individuals representing various interest groups attended the Montreal public consultation on the planned law for accessibility at Palais des Congrès, November 16, 2016. 
Photo credit: Government of Canada Source: http://www.quebec-accessible.ca/

In order for adaptations to occur and for difference to be celebrated, the public needs to be sensitized to the daily reality of those with alternative abilities. Disability activist Aimee Louw (representing Paul Tshuma, an accessibility consultant) expressed the need for those with disabilities to be central to such public education campaigns. Stereotypes and misconceptions can only be contested if the public mindset is challenged; something she feels must be “led by us, ourselves”.

All of these sentiments reiterate the fact that accessibility must be viewed differently; “not [merely] as a series of boxes to check off to show we’ve done the minimum required, but an integral part of everything we do”, as stated in the official discussion guide.

No longer can accommodations be elective and upon demand. Accessibility and access to needed services blends into the realm of human rights, as powerfully described by the mother of a boy with autism.

Often described as an ‘invisible disability’, early intervention for autism is critical to have the best possible chance of a fulfilling life, yet diagnosis in the public system can take up to two years. The lack of resources and services is encumbered by the fact that there is no federally mandated protection. As the mother expressed, “If this is not done at the federal level, what impetus is there to have anything at the provincial?” The recently launched Center for Innovation in Autism, See Things My Way, directly combats these diagnostic delays, and has made significant inroads in reducing wait time.

So what does an ‘accessible Canada’ mean to You? Legislators would do well to heed one participant’s comment; “We talk about dying with dignity, but what about living with it?” In order for this federally mandated legislation to lead to truly inclusive societies, the stakeholders present at the consultations must be placed at the centre of this historical move.

Expert talk demystifies ADHD

By Jonathan Wexler

If you think that ADHD (Attention Deficit Hyperactivity Disorder) is becoming more prevalent, you are not wrong. It is certainly being diagnosed more often, and affects up to 10 percent of children in our classrooms. 

ADHD is a psychiatric condition affecting a child's self-control, leading to impulsive behavior, trouble in school and with relationships, and with performing tasks in general. While ADHD also affects adults, it is mostly diagnosed in children and is often first noticed by teachers. 

Dr. Emmett Francoeur spoke at the Eleanor London
Côte Saint-Luc Public Library

ADHD also happens to be a specialty of recognized pediatrician Dr. Emmett Francoeur, developmental physician with the Montreal Children’s Hospital, who spoke on the subject to a crowd of mostly teachers and parents at the Eleanor London Côte Saint-Luc Public Library on September 14, 2016.

Dr. Francoeur, suffering from laryngitis, but in good spirits, started his presentation ADHD, TED talk style by making it clear that ADHD is a neurobiological condition and that "it is not the invention of teachers or parents who are at their wits end." In fact, Dr. Francoeur clarified that there are anatomical differences in the brains of ADHD sufferers that can be seen in MRI tests.

He explained that ADHD affects the executive functions of the brain. He listed a variety of technical terms for these, such as the "mental energy controller", "the processing control part", and "saliency determination", which boil down to the brain being able to understand, organize, and prioritize the information it takes in and act accordingly. "Someone with severe ADHD can walk into a classroom like it is their first time, even when it is November or December," said Dr. Francoeur. "Executive functions don't work efficiently for people with ADHD."

Dr. Francoeur emphasized that diagnosing a child with ADHD is not straightforward. "There has to be due diligence as to whether a child has ADHD," he said, adding that there are 2,000 faces of ADHD. Other conditions and medical reasons have to be ruled out. There is no substitute for, what he says, are "asking the questions".

These questions are actually the diagnostic criteria for ADHD in the psychiatric manual DSM-V, which describes three variants of the condition: the inattentive type, the hyperactive compulsive type, and the most common which combines symptoms of the first two.

Dr. Francoeur suggested various classroom accommodations, such as smaller classes, frequent recess periods, and flexibility of due dates for the ADHD student. His four-pronged approach to helping children with ADHD includes medication, parent training, interpersonal training for children, and study skills. 

Jonathan Wexler is a Montreal area writer with extensive experience in the technical communications field.

Israeli researchers works to 

crack the autism puzzle

By Jonathan Wexler

On September 25, the Canadian Friends of Ben-Gurion University of the Negev welcomed Dr. Ilan Dinstein to the Shaar Zion Synagogue as part of their fifth annual Kindle Your Imagination Lecture Series.

Dr. Ilan Dinstein is a member of Ben-Gurion University's Department of Psychology and the Zlotowski Center for Neuroscience. He has established Israel's first major autism research center with the help of additional scientists at the university and physicians in the neighboring Soroka Medical Center. The goals of the research center are to reveal what causes different types of autism and to develop new interventions for the disorder through a better understanding of the genetics, metabolism, brain function, and behavior of one to four-year old toddlers who develop autism.

Larry Nachshen, president of the Quebec Division of the Canadian Association of Ben-Gurion University, Dr. Ilan Dinstein, Mark Mendelson, chief executive officer of the National Office, and
Ellayne Kaplan, executive director of the Montreal office

 In his presentation, titled Cracking the Autism Puzzle, Dinstein explained that he sees autism as a puzzle involving different sub-groups of people with varying symptoms, and as such, is moving away from the idea of an autism as a spectrum.

Dr. Dinstein and his dynamic team are creating a unique autism database in Israel, and are using a variety of technical methods to gather information, such as genetic testing, EEG testing, and soon, even using fMRI. Like in some other cutting edge centers around the world, they also use eye tracking and even XBOX Kinnect cameras which are able to track up to three people in the room for the repetitive and restricted movements typically seen in children with autism.

The location of Ben-Gurion University, situated across the street from the Soroka Medical Center, provides an ideal site for this research. The Negev comprises 70 percent of the country's territory and is home to about one million people, mostly a heterogeneous Jewish mixture and a sizable population of 200,000 to 300,000 Bedouins.

Dr. Dinstein stressed a number of things which distinguish this Israeli effort,  from the Bedouin component which provides some unique genetics in their high rate of inter-familial marriage, to the fact that most kids being tested were actually born at the same Soroka hospital where the tests are taking place. "It is a win-win situation," he said, explaining the close relationship many of the parents develop with the clinical team and stressing the wealth of maternity ward information this bring to the study. Dr. Dinstein also stressed the emphasis the lab places on the brain as oppose to behavioral testing. 

"Autism is probably many different things," said Dr. Dinstein. “It is actually quite tricky to define." It was once thought that a single gene could be the cause, but now researchers are looking at a pool of 300 to 400 genes that could be involved. "Knowing about the genes would help to identify these subgroups," he added.

Dr. Dinstein identified one subgroup of children in particular. "Up to 30 percent of those with autism develop epilepsy," said Dr. Dinstein. "This is the most important project I am involved in because there are tools to deal with epilepsy."

Dr. Dinstein takes much stock in what he learns from parents whose children have autism. "Parents are doing their own clinical trials everyday, everywhere in the world. We are listening to them," concluded Dr. Dinstein.

With that in mind, he hopes that some of the novel testing methods the lab is using could lead to earlier diagnosis and therefore a better chance for intervention. He listed several possible intervention methods to explore, including Cannabinoids (elements of cannabis), Hyperbaric Medicine, and Transcranial Magnetic Stimulation.

  

The Canadian Associates of Ben-Gurion University of the Negev have raised significant funds from individual donors to support Dr. Dinstein’s research.

Jonathan Wexler is a Montreal area writer with extensive experience in the technical communications field.

3rd Annual Salon de L'Autisme TSA du Québec

The 3rd Annual Salon de L'Autisme TSA Du Québec

Three years ago, two mothers decided to take matters into their own hands and make things happen to help people with autism and their families. Johanne Leduc, president of the Salon and author of the book La sufferance des envahis, has two children that have autism. Sylvie Le Guerrier, vice-president, is a mother to two children, and is highly invested in helping families that have children with autism to more easily access resources.

Johanne Leduc, Anne-Marie Le Gouill, and Sylvie Le Guerrier.

These mothers didn't know what they were going to achieve when they set out to host their first Salon in 2013, but the results are clear. They organize important events, both in Laval and in Levis (March 31 and April 1, 2017), where parents, families, friends, professionals, people with autism, therapist, and the public-at-large can come to celebrate autism, learn about it, and find the resources they have been looking for and perhaps didn't even know existed.

At a press conference at Place Forzani in Laval on September 27, Leduc and Le Guerrier told the media that this year's Salon welcomes 115 exhibitors and 25 presenters (including Inspirations contributor Emmanuelle Assor). It will include features for everyone, and as Le Guerrier explained, "You don't have to have autism to attend. There is something for everyone."

Other features of the Salon will include a 'Play Corner' furnished by Kit Planete, a 'Halte Repos' where quiet and sensory tools to aid relaxation can be found, an artists section where attendees can meet artists with autism, admire and purchase the extraordinary creations. Some of our favourites - Remrov and The Big Blue Hug, will be there. In fact, Remrov is the Salon's Honorary Artist. Congratulation, Remrov! This year's art expo features an artist who is only six years old.

MNA Francine Charbonneau, a cut out of Laurent Ciman, and Jean-François Lisée.

Quebec government representatives Lucie Charlebois, Member for Soulanges and Minister for Rehabilitation, Youth Protection, Public Health and Healthy Living, Francine Charbonneau, Member for Mille-Îles and Minister responsible for Seniors and Anti-Bullying, and Jean-François Lisée, Member for Rosemount, were in attendance to support the work of Leduc and Le Guerrier. Charlebois spoke about the importance of providing access to diagnosis, improved access to services for both children and adults, and increased quality of services.

Participants at the Salon D'Autisme press conference at Place Forzani.

There is a tremendous team behind the Salon, including spokesperson Frédérique Dufort who is a comedian,writer, and sibling to a brother with autism. Honorary President Laurent Ciman, Montreal Impact star, was not able to attend the press conference. The organizers wanted his presence to be felt, so brought along a life-size cut out of him! His wife Diana spoke on his behalf. The event runs smoothly with the help of over 75 volunteers.

Leduc and Le Guerrier are doing tremendous work. But they did not feel they were doing quite enough. The press conference was a perfect opportunity to introduce their fundraising initiative: La foundation un pas à la fois pour l'autisme. Funds raised through the foundation will help non-profit organizations with special projects, help families with a child or adult with autism. Projects to be awarded will selected by a committee. The first recipient is parent and '2016 Salon Personality' Anne-Marie Le Gouill.

The Salon takes place at Place Forzani in Laval on September 30 and October 1 from 9:00 am to 6:00 pm, 4855, Louis-B. Mayer, Laval, Quebec. For information visit www.salondelautismetsa.com.

Beating the “Back to School Blues”

We welcome everyone back after what we hope was a good summer. As we get ready for the start of the 2016-17 school year, we thought it would be timely to share some sound back to school routine advice from Laura Caprini, who is an expert in this department. She is a mother AND a teacher. Thanks, Laura!

By Laura Caprini

Here we are once again, getting the kids ready for yet another school year. Sitting outside the other day, I noticed glimpses of yellow and orange already tingeing the leaves on our maples, an early reminder of what’s coming. To confirm this, I let out a series of loud, wet sneezes, a definite trademark reminder of the season-my allergies were kicking in. Exit summer, enter autumn.  

If you’re like me, it’s likely that you are beginning to get the kids back into “school mode.”  I’ve been pretty slack on bed-time enforcement, and sleeping-in has become customary in our home. But alas, all good things must come to an end. This week we actually set our alarm clocks -Yikes!

My daughter and son begin school at the end of August, and so part of my job as Mom is to get these two psyched for a brand new school year. This is not an easy feat where kids are concerned, but there are a few simple steps a family can take to make getting back to school as painless as possible. Easing back into the daily routine will be all that more smoother with a little advanced preparation and organization. 

The first thing I did this week was to re-instate the “chore chart” on the fridge. I sheepishly admit to being a little slack in this department, too. I’m home with the kids all summer (I’m a teacher), and as a result,  I tend to do many of the chores myself rather than watch both of them get into a heated argument about who empties which rack in the dishwasher. 

Next, I create the weekly “breakfast” menu. This is a list of quick and easy to make morning meals that my kids choose from the night before.  This eliminates wasting time in the morning as each of them stare into the great refrigerator “abyss” while trying to decide what to eat. 

Bath and showers happen the night prior, outfits are carefully selected before we go to bed (I have a teenage daughter, so I’ll say no more), and bedtime routines are slowly re-established so that nobody goes into shock-mode the night before the first day of school begins.

Of course, where would I be if I didn’t end this piece by reminding parents to make reading a part of your child’s daily routine: Be sure to get bedtime book-reading rituals back into full swing. This may be easier for some kids and a little more challenging with other kids not so keen on books. My son, for example, needs a significant amount of coaxing to settle in with a book before lights out. Not so with my daughter:  an avid reader who’ll read just about anything from “War and Peace” (her current novel) to the instructions on the back of a shampoo bottle!   

Good luck to all you families out there.  Have a great school year.  It’ll be over before you know it!

Laura Caprini is co-director, with Sandra Weir, of The Hudson Literacy Clinic www.HudsonLiteracyClinic.ca

 

Life after 18 seminar

Life after 18: 

 Transition planning for youth with disabilities

On June 8, we were delighted to welcome over 70 guests to the EMSB to address the concerns that parents, teachers and caregivers are facing when it comes time for their children with special needs to transition from the support of the education sector into adult life. 

This free seminar aimed to redefine what is possible for people with disabilities, providing educational support and resources for families of children with special needs between the ages of 12 to 22 and beyond. 

Nathan Liebowitz

The seminar included a presentation by Nathan Leibowitz, senior investment advisor with Manulife Securities, who informed about financial, legal matters, and government benefits that are available to families.

Leibowitz provided a wealth of information, such as answers to questions such as who will take care of my child after I am gone, and what money will be available for my child to live, public curatorship, and disability tax credits.

Linda Mastroianni, Life Coach and founder of Speaking Autism spoke about the importance of transition planning. "Young adults with special needs require different support and resources than their neurotypical peers. Securing the righ support for them requires proper planning," she shared. "A transition plan will also help prepare the 
youth for the changes and opportunities that lie ahead."

A transition plan will include: helping the youth identify their likes, skills and develop these abilities during their school years; help identify opportunities while setting short and long term goals; detailing and implementing strategies to achieve these goals; and ensuring the individual secures the right support. Transition planning should begin a few years prior to the individual leaving school, usually between the ages of 14 and 15. 

Linda Mastroianni

Key individuals that Mastroianni recommends be involved in the planning are teachers, principals, resource teacher, child care worker, therapists such as speech language, occupational or psychotherapists, etc., parents and caregivers, and their health and community workers such as CLSC, CRDI, CSSS, rehab centres. The plan will integrate everything from transportation to self-care, socializing, sports and leisure, and housing.

Jacques Monfette

Jacques Monfette, principal of Marymount Adult Education Centre in Cote Saint-Luc, spoke about the programs that are available for adult students with special needs at the centre, including Social Integration Services (SIS) and the Social Vocational Integration Services (SVIS) programs. In addition, the school houses a collaborative program between the EMSB and Giant Steps School for students with autism, and the C.A.R.E. Centre for people with physical disabilities.

Monfette stated: "In education we tend to forget something very important. It's called happiness. Many of our students have gone from failure to failure to failure. We try to find something that will make them happy and change this cycle." Galileo Adult Centre also has SIS and SVIS programs, as will John F. Kennedy 
in the coming school year. Consult the EMSB website to see more adult and vocational centre 
options.

To round off a most informative evening, social workers Natalie Correia and Alexandra Leblanc Etienne, from CSSS de la Pointe-de-l'Ile, Equipe DI-TED, spoke about the multitude of resources available to families to access through their CSSS, CLSC or CRDI, to help navigate through the transition years. 

Natalie Correia and Alexandra Leblanc Etienne

Special thanks to Marla Vineberg for bringing this seminar to Inspirations and the EMSB and organizing the seminar, and Pina Evangelista, TEVA (Transition école vie active) Consultant, Student Services Department, EMSB for her support in planning the event. 

Guests had the opportunity to visit exhibitors prior to the seminar including representatives from Action Main-D'oeuvre, I Can Dream Theatre, The Big Blue Hug, and Inspirations.

  It is safe to say that seminar attendees left with a great deal of information in hand. What was clear is that the discussion has only just begun, and must be continued. Stay tuned for a feature article about TEVA in our Fall 2016/Winter 2017 edition.

Read our Spring / Summer 2016 print edition at http://www.inspirationsnews.com/pdf/Editions/Inspirations_summer-160418.pdf