2017 CASDA Leadership Summit – Minutes

Day One – Tuesday, April 4, 2017

Algonquin First Nations Welcome

Karen Bopp, from the Ministry of Children and Family Development of British Colombia introduced Verna McGregor from Algonquin First Nations to provide the Welcome.

Verna talked about how the Algonquin’s clan system was based on the watershed, and how in Ottawa the Algonquin people would do ceremonies at the confluence of the Ottawa, Gatineau and Rideau rivers.  She also explained that in her culture, the birch bark canoe is an important symbol as it teaches about balance, and honours everybody’s journey. One of the elders’ teachings is that we all come here with our own learnings and special gifts. She closed by saying a prayer of thankfulness in the Algonquin language.

Summit Opening

Debbie Irish, Vice-Chair of the CASDA Board of Directors welcomed everyone to the 3rd Annual Autism Leadership Summit and provided an overview of some of the agenda changes from previous years including the poster networking session on Day One, and the four breakout panel discussions on Day Two. She also thanked the Summit Planning Committee for putting the event together, and asked the Committee members and CASDA Board members to stand and be recognized.

Opening Remarks

Debbie then called up Cynthia Carroll, CASDA Chair and Executive Director of Autism Nova Scotia who introduced Joël Lightbound, M.P., the Parliamentary Secretary to the Minister of Health. Mr. Lightbound, has a background in law and community involvement and since his election in 2015 he assumed the position of Vice-Chair of the Standing Committee on Access to Information, Privacy and Ethics as well as the President of Canadian Section of the Assembly of Parliamentaires de la Francophonie. Last January he was appointed Parliamentary Secretary to the Minister of Health.

Mr. Lightbound welcomed everyone, noting that M.P. Lake and Senator Jim Munson were in attendance and thanked them for all their hard work, as well as those in the dedicated organizations who serve the autism community. He highlighted the growing number of autism cases in Canada and the reasons why the federal government is working to improve the quality of life for individuals and families impacted by autism through investments in research, data improvement and vocational training. He highlighted how through the Canadian Institutes for Health Research (CIHR), the government has invested  $39 million in the last 5 years for autism research, specifically in the area of genomics, mental heath and novel treatment strategies. He also explained how the federal government is investing in a national surveillance system for autism that will improve data and statistics. He also noted that under the leadership of the Minister of Sport and Persons with Disabilities, the government is developing federal accessibility legislation in partnership with the Canadian Association for Community Living and the Canadian ASD Alliance, and that the government is also supporting the Ready, Willing and Able employment initiative.

Mr. Lightbound thanked CASDA and all stakeholders for all their hard work and shared that on World Autism Day, he was in his riding supporting an event for a school that presently has forty-nine children diagnosed with autism spectrum disorder (ASD).

Debbie Irish then introduced Senator Jim Munson and provided a brief biography – Senator Munson was known as a trusted foreign affairs journalist for over 30 years and was twice nominated for a Gemini award for Excellence in Journalism. In 2001, he joined the Prime Minister’s Office as a Communications Advisor and was made Director of Communications in 2002. He was then called to the Senate in 2003 to represent the Province of Ontario and served as Whip of the Senate Liberal Caucus from 2008-2016. He is Chair of the Standing Senate Committee on Human Rights and a vocal advocate for individuals with an autism spectrum disorder. His leadership in Parliament led to the adoption of an act respecting World Autism Awareness Day and the landmark Senate report “Pay Now or Pay Later: Autism Families in Crisis”.

Senator Munson welcomed Parliamentary Secretary Lightbound and M.P. Lake and his son, Jayden to this great “family”. His dream is one where a child with special needs develops into a young adult with special talents that fit into our labour market, and one where that young Canadian is gradually immersed in building our society – a diverse, inclusive society.  He shared that he is sensing a greater acceptance and evolving view of people with disabilities, or “special abilities”.

Senator Munson reflected that it has been 10 years since the “Pay Now, Pay Later” report began to change the landscape for those affected by autism spectrum disorder, and he is filled with wonder at how extraordinary and powerful the autism community is when comes together to affect change. He explained how CASDA was born as one strong voice to represent shared leadership of autism organizations in Canada and has developed into a strong partnerships with Health Canada, the Public Health Agency of Canada (PHAC) and CIHR as well as leading scientific and academic researchers.

He pointed out that now the movement is ready for action. Through the Canadian Autism Partnership Project (CAPP), it has a plan to work with the federal government to bring about systemic change that will result in support for families, as well as a national platform for collaboration, a source of data to inform policy and funding decisions, a link to the research agenda, and the development of a unique indigenous engagement strategy.
Senator Munson shared that he is deeply supportive of the human rights principles of CAPP, in that all Canadians living with autism have a right to inclusion, understanding, acceptance, respect, and dignity, full citizenship, equitable opportunities and access, personal autonomy and decision-making. He also feels that our society is beginning to see autism in a new way as finally listening to the voice of self-advocates.
He also told the story of emerging self-advocates and how he spoke to a group of students at the Roberta Bondar elementary school on World Autism Awareness Day, an event organized by an 11- year old self-advocate.

Senator Munson finished by stating that today there are still too many families affected by autism struggling without proper resources, but that the conceptual framework of CAPP opens the door to innovation and a partnership with the federal government, and he feels even stronger than 10 years ago about the ability to change our society.

Canadian Autism Partnership Project (CAPP)

Cynthia thanked Senator Munson and his wife, Ginette for their passion and amazing work for families on the autism spectrum.  She explained that 2007 was a historic year for the autism community after the release of the “Pay Now Pay Later” report and that CASDA was founded due to need to speak with a united voice on autism issues across the country and the lifespan. CASDA now has just over 100 members and has made many important contributions including:

  • ongoing work with PHAC on surveillance;
  • continuous work to engage and consult with members of Parliament;
  • the development of position papers in 2012 and 2016;
  • a national needs assessment conducted in partnership with Dr. Weiss;
  • the implementation of Ready, Willing and Able in partnership with Canadian Association of Community Living;
  • work on issues with accessibility and disability including inputting to federal accessibility legislation and working on shadow report to the United Nations Convention on the Rights of Persons with Disabilities; and
  • the development of a comprehensive business plan for CAPP.

Cynthia then introduced Margaret Whelan to roll out results from the Canadian Autism Partnership Project (CAPP).

Margaret explained that in 2015, CASDA was given the contract for CAPP and was tasked with taking on a national stakeholder engagement process. She reminded the group that at the first Leadership Summit in 2015 they set out the parameters for CAPP, and at the 2016 Summit, they collected feedback on the framework and used as a basis for community consultations. Since the last Summit, they have made 38 modifications to the CAP Collective Impact Process modelCAPP.

Margaret explained that CAPP had an extensive project team to ensure that there was transparency and accountability including the CASDA BOD, the National ASD Working Group, the PHAC Advisory Team, and the Self-Advocates Advisory Group, which was chosen to represent the geographic nature of the country.  She showed a video highlighting the views and experiences of the self-advocates and then each member of the group spoke about their own personal experiences with the project:

Patricia George-Zwicker (Nova Scotia) – is an artist, author, and poet. Patricia shared her excitement to share the story of CAPP and how important the partnership part had been to her as for too long people have been working in own silos. She also stated that autistic adults are the single largest untapped resource when it comes to solving so many of the issues surrounding autism, and that the project has had a huge impact on her personally, provided her with relatable trustworthy peers for first time.

Trudy Goold (Newfoundland) – is a writer, and author. Trudy explained that for her personally, working on CAPP has taught her a lot about self-advocacy, and provided the opportunity to make good friends. She was very disappointed to find out the CAP didn’t get funded in federal budget this year but remembered that even if didn’t get it, work still done and we still have time to get the funding done. Encouraged everyone to keep CAPP out there and speak to their Members of Parliament.

Kristian Hooker (Manitoba) – is an entrepreneur (HALE – Helping Autism Live Everywhere) who also works with indigenous communities. He reminded the audience that he had given a presentation at the inaugural autism summit and how he knew back then many other great autism advocates out there, and that imperative that have a partnership plan with effective strategies, especially in the areas of education and employment. He shared how he thinks of kids on the autism spectrum that are provided with limited expectations and that CAPP is crucial as emphasizes the potential for all individuals on the spectrum.

Georges Huard (Québec) – currently works at the University of Québec and Montreal (UQAM). He has Aspergers and has travelled and given talks since 1995 on ASD with his brother (who has more severe autism with developmental delays). He felt was a pleasure being part of a wonderful team of self-advocates and to have a say in determining best practices for people with autism. His hope is that CAPP helps people with autism spectrum disorder have improved quality of life throughout all stages of life.

Jackie McMillan (Ontario) – is an entrepreneur (Thrive with Autism) and stated that the three words would like to focus on as think of CAPP are “responsive, collaborative, and creative”. She shared her earlier challenges with advocacy and how the CAPP process has finally provided a feeling of being recognized. She also encouraged everyone to build bridges in their communities to seek funding, and to tap in to the creativity around them.

Corey Walker (British Colombia) – works with Autism British Columbia and was grateful for opportunity CAPP provided to engage with others like him on a national scale. He highlighted that there is almost no government support for individuals with autism and their families and almost nothing for adults unless very severe. He also thought that CAPP important as in Canada have lacked our own statistics on autism and he hopes that CAPP will bring better services and quality of life and equal opportunities to all Canadians affected by autism.

Jessica Pigeau (Alberta) –is a post-secondary student from the University of Alberta who spoke about what it meant to be a member of a community, a citizen with rights, duties and belonging and that we owe people with autism a plan, and a way forward. She emphasized that there is a cost to doing something but there is also a cost to doing nothing (financial and human).

Cynthia thanked the self-advocates and then explained that the CAPP stakeholder engagement process involved extensive government outreach in all 13 provinces and territories (101 representatives); community forums (494 participants); an on-line survey (more than 4300 responses); meetings with PHAC; working group meetings and the Self -Advocates Advisory Group meetings.

As a result of the stakeholder engagement process, priorities and gaps were then grouped into five main categories:

  • Early identification and early intervention;
  • Employment;
  • Interventions and service to improve quality of life at all ages;
  • Specialized medical care;
  • Education: including transitions to employment, post-secondary and independent life.

Through the stakeholder engagement process, it also became apparent that issues for the indigenous population were entirely different from traditional issues so as a result a separate section was included in the business plan for First Nations communities.

Cynthia reminded everyone that last year they introduced the concept of collective impact, but really CAPP is more about shared leadership, leveraging current interventions and reaching priorities by consensus. There is a need for a national platform to keep the momentum going. Partnerships, innovations, and efficiency are all essential.

Cynthia explained that they presented the business plan to Minister Philpott, and that she was very receptive to the concepts and very grateful for all the work that had been done. They had hoped that CAPP would be in the federal budget for this year, and it was not but we are not done. She also pointed out that the investment in CAPP has provided us with a number of other collateral benefits (i.e. just under 4300 innovations identified across the country, and the development of a well grounded research based model).

Margaret then asked Summit participants for feedback. Comments:

  • “Disappointed not funding for CAPP. How do we talk to those policy makers in government about moving this forward?”
  • “Priority for continued action for self advocates, felt an important piece to leverage and hopefully CASDA can work to facilitate that connection.”
  • “Are there other informative pathways from other jurisdictions?” Answer: very few – they are actually looking to Canada and CAPP as example.
  • “Self advocates as members of the community can hold us accountable and because no funding perhaps one creative way to create these partnerships is a Facebook page.”
  • “We know that each province has certain amount of funding set aside for child and youth and education –what are the possibilities to see if there is a way can adapt your local project so that have small amount of extra funding that is specifically labeled as helping to move ahead national initiatives?”
  • “Good idea to have a common voice but also look for health funding from provinces so can have common voice but also provincial chapters for CASDA.”

Mike Lake, M.P. also spoke about he was very disappointed no funding for CAPP, and had really thought would get it as even half of the liberal caucus had written support letters. He encouraged everyone not to make advocacy efforts overly political, but that need to stand up as a community and demand that decision be changed.

Margaret then reminded everyone that the Summit is not just a conference but also an opportunity to come together and pool our resources and re-commit ourselves to leadership role across Canada. Cynthia ended the update by showing a video summarizing CAPP’s countrywide stakeholder engagement process.

CASDA AGM
Insert link to AGM minutes

Poster Session and Networking

http://www.casda.ca/poster-sessions/

ASD Research Chair Stakeholder Update

Esther Rhee from Autism Speaks introduced Dr. Jonathan Weiss from York University, an Associate Professor in the Department of Psychology and a Clinical Psychologist whose research focuses on the prevention and treatment of mental health problems in people with Autism Spectrum Disorders and/or intellectually disabilities. Dr. Weiss currently holds the CHIR Chair in ASD Treatment and Care Research as well as operating funds from the CIHR and Social Sciences and Communities Research Council.

Dr. Weiss provided background on the ASD Research Chair that was announced in 2012 for a five year non-renewable term, designed for new investigations and to work with families, service providers and government organizations around three major pillars: making research more accessible for stakeholders around mental health and autism; studying ways of addressing mental health of people with autism; and training a new generation of clinicians and researchers around autism.

The Chair is funded by CHIR, in partnership with a number of stakeholders including Autism Speaks Canada, CASDA, Health Canada, the Kids Brain Health Network (formerly NeuroDevNet) and the Sinneave Family Foundation.

Dr. Weiss showed a slide presentation summarizing the associated projects and their outcomes over time. Many of the projects were focussed on interventions (i.e. sport as an intervention, Secret Agent Society – Operation Regulation, MyMind – Mindfulness Training for Teens and Young Adults). Another set of projects focused on looking at predictors and outcomes (i.e. Experiences of interpersonal violence in adults with ASD, Risk factors of peer victimization in children with ASD), and another looked at analyzing services (i.e. the National Needs Assessment Survey).

Dr. Weiss provided updates on a couple of the interventions projects:

Secret Agent Society – Operation Regulation: This project was focussed on providing cognitive behaviour therapy (CBT) to 8-12 year olds with a variety of mental health challenges including anxiety, anger and depression to help regulate their emotions using innovative and fun tools based on a spy theme. As a result of the project, 21 graduate students now trained in providing CBT to kids on the spectrum, and 111 kids with ASD were assessed, with 68 receiving treatment. After treatment, parents of the children reported seeing an improvement in socialization and adaptive behaviour and have now received funding from CIHR to do another trial with a more diverse range of youth.

“MYMind – Mindfulness based intervention for adolescents and young adults with ASD and their parents”:  MYMind came out of the Netherlands starting with treatment of children with ADHD and their parents, where kids and parents would both come in for therapy and do their own meditation, deep breathing and mindfulness activities concurrently. As part of this study, had teens and young adults with autism and their parents go in to their own group interventions.  Kids Brain Health Network provided some additional funding to support this project (also showed video).

Dr. Weiss also shared some of the Knowledge Mobilization Activities carried out as part of the Chair:

  • YorkSpace (http://yorkspace.library.yorku.ca/) – where research results are free to download and share;
  • ASD mental health blog (asdmentalhealth.blog.yorku.ca) where created over 80 research snapshots available for download;
  • social media (i.e. twitter account -@asdmental health);
  • numerous presentations (Canada and internationally);
  • hosted a TEDx event last year focussed on sharing innovations (with the second one planned for April 22, 2017).

Ready, Willing and Able

Debbie Irish introduced Radha MacCulloch, National Resource Coordinator for Ready Willing and Able (RWA) to provide an update on the project. The RWA is a national partnership initiative between CASDA and the Canadian Association for Community Living, and is being delivered in each of the 13 provinces and territories. The vision for the program is a world where the employment rate for persons with an intellectual disability or ASD is on par with the national average (currently only 1 in 4 of people with intellectual disability is employed). To participate in the program, participants need to self identify as having ASD or an intellectual disability.

To date, the project has been focussed in 20 primary communities, and is employer focused with the idea to create demand based on a business need, and to create connections between employers and employment agencies, facilitate the hiring process and provide support. As well, have created a database for job seekers called The Compass which is currently offered in three pilot communities: Vancouver, Toronto and Halifax, and is helping to develop a more robust talent pipeline between candidates with ASD and employers working with RWA.

So far, results have been very encouraging. Have seen significant positive impacts at the employer, job seeker and community capacity level. Approximately 25% of employers that have been engaged have made a commitment to hire through the RWA program. From September 2014 to December 2016, 6,400 businesses were engaged, 2000 businesses actively involved, with 1,253 employment opportunities filled and 78 post-secondary students supported. Employees are paid at industry-standard wages with the same benefits and protections available to the general workforce.

Feedback from employers has been very positive. RWA employees were rated as well as or better than average on issues such as employee loyalty, employee attitude, employee contribution, and employer satisfaction. There are still ongoing gaps and challenges in supporting job seekers and employees with ASD including: needing enhanced access to and availability of on-the-job supports; needing more robust, coordinated pathways between pre-employment supports and on-the-job supports; and addressing unique needs of job seekers/employees with ASD (e.g. mental health services, supports for executive functioning). The plan is to find and build solutions to these challenges within existing employment services and partners.

Radha thanked all the partners at the Summit and the many people and organizations involved in the RWA project.

Closing Remarks – Autism Speaks Canada
Debbie Irish introduced Esther Rhee, National Program Director with Autism Speaks to provide an update on the Family Services Community Grants program.

Esther explained that Autism Speaks focuses on four key areas: increasing research, collaboration, building awareness, and family services. This is the third year that Autism Speaks has aligned the announcement of the family services community grants with the Summit.  To date, the program has provided over $3.5 million in grants to over 200 organizations across Canada. The grants that were chosen for funding this year:

  • Autism Services of Saskatoon/Saskatoon Health Region – Collaborating on Mental Health – $40,000 – to provide cognitive behavior therapy to youth and children experiencing co-morbid mental health conditions;
  • IFPDP for Ineligible Adults with ASD – (Waterloo/Ottawa regions)$60,000– extend independent planning and person directed planning and independent planning to individuals not eligible for provincial program;
  • Fort McMurray Ambassador Program – $40,000 – to increase advocacy and access to ASD services to an area plagued by under developed services;
  • Effective Personal Support and Training (Yukon) – $40,000 – to develop a curriculum to support ASD intervention workers to effectively support children with ASD and their families;
  • Outdoor Recreation and Family Events (Vancouver) -$18,000 – provide supported and adapted outdoor recreation programs for teens and young adults;
  • Virtual Mindfulness Groups for Adults with ASD and Families – $40,000  – to adapt a mindfulness based group intervention for adults with ASD and family caregivers to be offered virtually across Canada;
  • Community Outreach Among Faith Communities – $40,000 – to build autism support capacity among faith communities, which in turn can serve as neighbourhood-based resources for individuals and families;
  • The Art of Being Unique (Quebec) – $25,000 – Montreal’s largest museum will hire individuals with ASD, showcase exhibits of art from teens and young adults with ASD and provide training to all staff on ASD;
  • Potential Programme Nova Scotia – $40,000 – collaboration between Autism Nova Scotia and Autism Ontario to replicate a successful family navigation and support program from Ontario in another jurisdiction;
  • St. Michaels Pediatric Passport Program helping families find pathways to care (Toronto) – $30,000 – to develop an innovative interactive mobile application designed to assist families access resources for children with ASD;
  • Health He-ARTS (Surrey, BC) – $27,000 – will provide recreation. and social programming after school, combining music and physical activity.

 

This year received the most applications ever, but unfortunately not enough funding for all. Next year, the focus of the grants will continue to:

  • promote autism services that enhance the lives of individuals with ASD and their families;
  • expand the capacity of service providers;
  • establish promising practices and encourage evidence-based service delivery;
  • foster collaborative approaches to service delivery;
  • reflect current needs and service gaps.

The grants will also continue to be collaborative (need partners to submit) and maximum award will once again be $40,000 with two streams: Innovation (Trailblazer Pilot Program Advancement) and Replication (Site Expansion Program Adoption Hub & Spoke). She also explained that there is a strong evaluation component to the grants as well so can replicate and show promising practices.  She encouraged Summit participants to apply for a grant.

Cynthia thanked Esther and Autism Speaks for providing a perfect example of collective impact and how information is made available to the greater autism community.

Before closing for the day, Cynthia also encouraged everyone to take advantage of opportunities over next couple of days to continue to push for funding for CAPP, and to continue to share information and videos provided by CASDA through social media.

Debbie Irish thanked Margaret and Cynthia, the self-advocates, the poster presenters, Dr. Jonathon Weiss, Rhada (Ready Willing and Able), and other presenters.

The first day of the Summit ended with a Reception hosted on Parliament Hill.

Day Two – Wednesday, April 5, 2017

Welcome and Opening Remarks

Debbie Irish introduced Mike Lake, P.C., M.P from Edmonton-Wetaskiwin and his son, Jaden, who is on the autism spectrum. Mike currently serves as the Conservative party critic for Global Maternal, Newborn and Child Health.

Jaden said “hi” and Mike showed a couple of videos that highlight Jaden’s connectedness and courage. Mike provided a broader view of what he is personally working on now: in his current role as critic for Maternal, Newborn and Child Health he works with international organizations such as UNICEF and the World Health Organization to help save lives of kid under the age of five, as well as to promote the human rights of women and girls. He is also speaking with various international stakeholders including Bono’s One Foundation and the Gates Foundation about the importance of a global autism partnership. Mike shared his view that working to help the most vulnerable in our communities will provide benefits for everyone including those on the autism spectrum.

Break Out Groups – Promising Practices

Karen Boppthanked Debbie Irish for her work in organizing the Summit. Karen then introduced the Break Out Groups and explained that participants have the choice to attend two of four sessions:

Group A: Employment Readiness and Transition:

Facilitators: Amy Lonsberry – The Sinneave Family Foundation, and Joy Hewitt – Meticulon

Discussion Panellists: Breanna Hayes – Autism Resource Centre, Wendy Mitchell –The Sinneave Family Foundation, Jackie Ryan, M.A., CPA, CMA – Centre for Autism Services, Kate Blasetti – New Heights School, Maureen Barnes B. Ed., M.A. – York University and Tara Connolly B.Ed., M.A. – Algonquin College

Group B: Family Supports and Navigation:

Facilitator: Karen Bopp, Ministry of Children and Family Development, British Columbia

Discussion Panellists: Stelios Georgiades – McMaster University, Umberto Cellupica – Pivotal Minds ASD Treatment Centre, Brittany Rappaport – McGill University, Dr. Mayada Elsabbagh – Department of Psychiatry, Faculty of Medicine, McGill University, Nadia Abouzeid, PhD. – See Things My Way Centre for Innovation in Autism and Intellectual Disability

Group C: Building Community Capacity:

Facilitators: Esther Rhee, Autism Speaks Canada and Dr. David Nicholas, University of Calgary, Faculty of Social Work

Discussion Panellists: Dr. Katelyn Lowe – The Sinneave Family Foundation, Jacqueline Chan – St. Michael’s Hospital, Dr. Terri Barriault – Child and Community Resources, Kirsti Mardell – Autism Society of the Regional Municipality of Wood Buffalo, Mike Barrett, MC, R.Psych. – The Sinneave Family Foundation

Group D: Community Engagement and Quality of Life:

Facilitators: Debbie Irish and Dr. Jonathon Lai, York University

Discussion Panellists: Theresa Laurenti – Edge of the Box Theatre, Laura Burdon, BSc., MSc. – Student, Werklund School of Education, University of Calgary, Karen Unger – New Heights School and Learning Services

Break-Out Groups Debrief

Debbie Irish introduced the facilitators from each break-out group to provide a recap.

Group A:  Employment Readiness and Transition:

Joy Hewitt shared that all panellists shared a number of common themes and views:

  • Need for individualized paths that include skill assessment, guidance job fit analysis and support on an individualized basis;
  • Necessity of motivation and self-determination, especially at an earlier age;
  • Importance of collaboration, community involvement and creating awareness;
  • Open source sharing (between employers and agencies);
  • Need for ongoing support in employment (job coaching);
  • Importance of feedback – to enhance skills, but also develop strategies to enhance the work experience and build self esteem, and to solicit employer experience;
  • Importance of trust (individual, employer, community and support network), and
  • Exploring opportunities like coop placements, internships and volunteer opportunities to identify individual skillsets and likes/dislikes.

Group B: Family Supports and Navigation:

Karen Bopp reported that the break-out group had a lively discussion on the topic and raised as many questions as solutions. Some of the key points that came up included:

  • Need for a coordinated approach;
  • Make sure engaging self advocates in developmental stage;
  • Where to start with navigation, support, and training?
  • When are navigators needed (know there are key times, especially around time of diagnosis and other life transitions)?
  • What about times when families are in crisis?
  • Need to know what services look like in each province and leverage the successes and find scalable solutions;
  • Families have right to be informed about all service options (public and private);
  • How do we ensure consistent access to information that is grounded in research?
  • What is relationship between navigation and advocacy?
  • Parent to parent supports facilitated by either knowledge brokers or navigators;
  • Need to provide service early and to leverage existing systems (i.e. education).

Group C: Building Community Capacity:

Dr. David Nicholas provided the update and described how the panel represented diverse programs in terms of content, but also their developmental trajectory. Important to understand the breadth of what is needed in our communities and the balance between need for specialization and focus versus broad based access. Spoke about various challenges with capacity and understanding what are the needs versus what are the resources. The prevailing theme of the group was ‘connection and partnership’, and leveraging great work and finding ways to fit into communities based on need. Also, spoke about the notion of  ‘belonging’ and thinking about some of the marginalizing elements of autism and mental health, and ensuring we are building bridges towards a stronger and more welcoming community. Also talked about multidirectional roles of education and change, and not just building pockets of programming when we build capacity, but also creating pervasive welcoming communities.

Group D: Community Engagement and Quality of Life:

Dr. Jonathan Lai explained that this group started talking about a framework for how looked at quality of life and community engagement and that there are different dimensions (i.e. what people do during the day, and then recreation and leisure activities), and then shifted to talking about how to get to that state of full citizenship and belonging. Some of those components include having a certain standard of living, having a meaningful contribution to society, and building and sustaining quality relationships.

Participants brought up a number of best practices in successful programs including being relationship based, involving mentorship, finding individuals’ passion, and flexibility and creativity. The group also discussed what the pathways are to community participation and the challenge of reintegrating isolated adults and supporting families and caregivers.  They also, spoke about the important of having peers and networks for teens and adults and allowing for continuity across different communities and spheres of life.

Debbie Irish thanked all the panellists and groups for such robust dialogue. She also explained that some of the CASDA Board of Directors group are at the House of Commons for the afternoon to support Mike Lake, M.P as he makes a statement in the house related to the Canadian Autism Partnership Program.

Neurowrx – a new global autism employment initiative

Debbie Irish introduced Garth Johnson.

Garth provided some background on the Neurowrx project: In February, 2016 AT&T in Dallas invited a number of social enterprises and businesses engaged in employment of people on the spectrum to come together to brainstorm best practices.  As a result, the group set a goal of creating up to 5000 STEM (science, technology, engineering and math) jobs employing people with ASD by 2020. After that initial meeting, AT&T continued to fund a dialogue and out of that came Neurowrx. Neurowrx was recently incorporated with just over fifteen founding companies.

The goal of Neurowrx is to create an open network. Credo: “Our goal is to accelerate the employment of people with ASD in the fields of STEM”.  They are targeting three groups of people: self-advocates who want to work in STEM, employers (i.e. Meticulon, Mindspark) who are employing people with ASD in STEM related work, and large employers who want to learn how to do this directly themselves. There will be a membership fee for employers, and a website is being built (currently an existence on Facebook – https://www.facebook.com/neurowrx).

The idea is to foster equal pay for equal work, and to open source all practices and learnings. On the public side of the website, they will promote success stories of people working in STEM, share testimonials from employers to highlight the business case and overcome barriers to employing people with ASD in STEM. Neurowrx will also publicly work with University of Calgary to quantify “the return on disability” of employing people with ASD.

Garth re-iterated that Neurowrx’s key goal is to promote the autism advantage for business, and to open doors for people with autism to employment – “they don’t need help, they need opportunity”.  He also mentioned that they will be planning a summit.

Vocation and ASD

Dr. David Nicholas explained that on the Monday before the CASDA Summit, a pre-meeting was held to focus on advancing vocational opportunities for people with autism spectrum disorder – “Fulfilling Lives at Work”. Since 2012, a couple of conferences have been held on the subject, but still a long way to go: currently only 22% of working age adults with ASD are employed, and only 13.2% of service agency personnel felt their region sufficiently addressed the needs of people with ASD.

At the meeting, they broke out into groups and looked at key areas of advancement:

  • Job readiness to employment;
  • Post-secondary support;
  • Job coaching;
  • Employer capacity;
  • Family/circle of support;
  • Ancillary services (i.e. mental health services, transportation);
  • Community knowledge development.

They also discussed need for intentional change for specific segments of society that are often ignored, as well as the need to partner better with the unlikely allies in our communities.  Also highlighted the need to intentionally include First Nations, Inuit and Metis communities, and build out to the breadth of our communities. Encouraged to think about job seeker, employer and coworkers – an ecosystem that needs to work together well as a community, and a networked policy that works for Canadians with autism and their families. Again, hearing the perspectives of self-advocates is paramount.

Dr. Nicholas explained that some strategies to deal with challenges will be put together in a report, but most importantly need to continue to move the agenda forward in each of our communities. He also invited participants to think about one or two things that can take back to their communities and discuss amongst people at their table.

Facilitated Discussion – Theme: Membership Engagement in CASDA

Debbie Irish invited each table to take 20 minutes and provide feedback on CASDA and the Leadership Summit.

Closing Activity – Spectrum Productions

Debbie Irish called Liam O’Rourke and Dan VenTeen from Spectrum Productions to the stage. Spectrum Productions is a social enterprise organization based in Quebec that provides opportunities for those with autism spectrum disorder to gain experience in video development and animation. They provide multiple training and social/creative programming opportunities including summer camps and after school and weekend programs.

Liam and Dan then showcased some of the videos made by their participants (also available on YouTube), and explained that they are growing the video production side of their business. Also thanked CAPP and CASDA for promoting and supporting their organization, and shared that always looking to try and expand their services and model and to create pathways to have individuals with ASD recognised as artists. Also, looking to promote an autism film festival.

Closing Remarks – The Sinneave Family Foundation

Debbie Irish introduced Dr. Katelyn Lowe from the Sinneave Family Foundation, one of the Platinum Sponsors of the Summit.

Dr. Lowe, on behalf of the Foundation thanked CASDA for being allowed to be part of the event for the last few years. She personally has really appreciated hearing the points of view and especially this time to hear from self-advocates.

Dr. Lowe remarked that as Summit closes, can choose to take away negative or positive messages. If focus on the negative, then might emphasize the fact that CAPP not funded in the 2017 budget, we do not have enough data, there are not enough support and services, many people with autism feel hopeless, depressed and even suicidal, and that the Chair in ASD at York University is done and will not be renewed.

However, if choose to focus on the positive then can look at messages such as “CAPP is not dead” and “there is a team of dedicated individuals refusing to give up, and that will keep advocating for a national autism strategy that ensure that all Canadians living with autism are able to live full and rewarding lives and access the necessary supports and services in a welcoming and understanding society”, and “Autism Speaks will continue their community grant program that values collaboration and recognizes need for innovative new programs but also replication”.

Dr. Lowe closed by remarking how she personally reallysees the benefit of coming together annually face to face at these Summits.

Closing Remarks

Debbie Irish wrapped up the event by thanking all the Summit sponsors:

Platinum: Autism Speaks Canada, The Sinneave Family Foundation, Surrey Place Centre

Silver: Geneva Centre for Autism

Friends of CASDA: MacART, Autism Canada

Debbie thanked the colleagues that worked with her on planning the event (Amy, Esther, Karen, Keely, and Suzanne). She also mentioned that all participants will receive an email with an evaluation survey. She encouraged everyone to provide feedback and also to enter into discussion with their local MPs to continue to push the agenda for a national autism strategy and support for CAPP. She invited everyone to come again next year and bring their friends and colleagues.