Two heads are better than one for CHILD-BRIGHT’s National Youth Advisory Panel

In a first for our network, not one but two of our youth members are taking the helm of the CHILD-BRIGHT National Youth Advisory Panel (NYAP). Current chairperson Logan Wong will be joined by long-time NYAP member Hans Dupuis as co-chair for the panel’s next term, which runs from 2022 to 2024. 

In addition to his work as NYAP co-chair, Logan Wong is a social worker with a particular interest in health care policy, working with youth and within the equity, anti-oppression, and anti-racism sector.

The past two years have been a whirlwind for the NYAP, and especially so for Logan: “As chairperson, I have been able to represent the NYAP on more projects than ever, including as part of the network's steering committee and at a collaboration with Autism Canada, formally the Canadian Autism Spectrum Disorder Alliance,” he shared. Early in his mandate, the NYAP launched its consultation service, in which the youth members provide advice to Canadian researchers working on childhood disability research projects. 

At the same time, our youth members were contending with the many impacts of the COVID-19 pandemic. “The pandemic taught us all how to adapt to the adversity that comes with uncertainty,” Logan said.  “That’s the lesson I will bring with me into this next mandate as co-chair. I am incredibly proud of the panel for how they adjusted to a new way of working and a new way of life, all while remaining passionate about advocating for people like ourselves with brain-based developmental disabilities.” 

NYAP Co-Chair Hans Dupuis, who lives in Montreal, has worked for Air Canada since 2017. He is an avid manga and graphic novel reader and enjoys live-action role playing.

This shift in the NYAP governance structure will allow the co-chairs to share responsibilities and workload and provide a second perspective to decision-making within the panel. “After over four years as part of the NYAP, I’m excited to take on a more active role and do my part in the network to help others with brain-based developmental disabilities or autism,” explained Hans. “As co-chair, I will be able to better guide our monthly meetings and support Logan during this mandate.” As a bilingual francophone youth member, Hans will also bring some linguistic diversity to this new role as co-chair. 

Together, Hans and Logan will guide the NYAP and its members as the network moves into its Phase 2. The panel will retain its focus of advising CHILD-BRIGHT’s research teams on how to optimize youth engagement. With this in mind, the youth members have started developing a toolkit on best practices in patient engagement and patient-oriented research for teams to incorporate at the start of their implementation science research projects.  

“I am proud of the work we have done so far within the network and beyond and I look forward to sharing this role with Hans for the next two years to see how much more we can accomplish as a panel in the future!” Logan concluded. 

Are you a Canadian youth with a brain-based developmental disability? The NYAP is recruiting!

CHILD-BRIGHT youth helps make Project 2050 accessible for all

In November 2021, we announced that our Jooay App research project had teamed up with the Earth Rangers organization to launch Project 2050: Climate-friendly habits to change the world!

Jooay and Earth Rangers reached out to CHILD-BRIGHT’s National Youth Advisory Panel (NYAP), which offers an innovative consultation service to Canadian researchers working on childhood disability research projects, to help ensure Project 2050 is accessible to, and inclusive of, children with disabilities. NYAP member Gillian Backlin worked with the team to provide an accessibility review of the Project 2050 website.

A national movement powered by Earth Rangers in partnership with Jooay, Project 2050 empowers children with the knowledge and skills needed to tackle climate change. It teaches children and youth that our habits can have a big impact on the planet, and that by working together, we can build a more climate-resilient future. It was therefore important to the project team that its website be accessible to all children and youth, including those with disabilities.

Gillian, who has completed a previous NYAP consultation, was a natural fit for this particular project. “I’m trained in technical writing and therefore have knowledge in information architecture and how things might make more sense to the end user,” she explained.

The nature of each NYAP consultation can vary depending on specific research project needs. For Project 2050, Gillian met with the team via Zoom, where they requested she review a list of items on the website. She went through them with CHILD-BRIGHT Citizen Engagement Coordinator Corinne Lalonde and submitted their feedback. They then had a follow-up meeting with the project team to discuss their findings. “It was a great experience!” Gillian shared. “I felt that my feedback was valued and incorporated into the results.”

Corinne also had the opportunity to explore the website with her son: “My almost six-year-old was delighted to receive his very own official Earth Rangers card in the mail! We looked at the website and he was immediately drawn in by the challenges and rewards. He found them fun and learned a lot about healthy habits (which made his mom very happy too!).” 

“It was a really great experience working with Gillian and the team on this project,” Corinne added. “It was interactive and interesting, and we felt that we were well supported throughout.”

The Jooay team couldn’t have agreed more: “Gillian provided valuable feedback on our accessibility project,” they emphasized.

“We’re partnering with Earth Rangers to advise on accessibility and the inclusion of children with disabilities in Project 2050, and to make sure that their website is accessible for children with disabilities. Project 2050 encourages kids across Canada to make climate-friendly habits part of their life,” the team wrote to us. “With her professional and lived experiences, Gillian assessed the Earth Rangers website carefully and sent us her detailed feedback.”

You (and your kids!) are invited to check out the results of the NYAP consultation by viewing the Project 2050 website.

How the NYAP shaped a study about youth mental health during COVID-19

In October 2020, CHILD-BRIGHT’s National Youth Advisory Panel (NYAP) launched an innovative youth consultation service, offered to Canadian researchers working on childhood disability research projects. NYAP members Gillian Backlin, Claire Dawe-McCord, Logan Wong and Hans Dupuis consulted with the “Nothing without us: COVID-19 policy responses to improve mental health of youth with disabilities and their families” study team between March and December 2021. Gillian Backlin served on the project’s advisory council as a youth representative.

Download the infographic

The “Nothing without us” project, co-led by CHILD-BRIGHT members Keiko Shikako and Jennifer Zwicker, and affiliated with the University of Calgary, was designed to identify COVID-19 policy responses that are inclusive, equitable, and evidence-informed to meet the mental health needs and promote well-being for Canadian youth with disabilities and their families.

To do so, the study team conducted interviews with youth with neurodevelopmental disabilities to understand how the COVID-19 pandemic has impacted their mental health and their experiences accessing services during the pandemic. After filling out a short online screening questionnaire, youth had the option to participate in a follow up phone/Zoom interview or another online survey.

The research team approached the NYAP to consult in this project in two ways: an individual consultation with Gillian, who was on the study’s advisory council, and a group consultation with Logan, Claire, and Hans, who all reviewed the survey.

“I was interested in participating in this project because I believe the COVID-19 pandemic has had serious impacts on youth mental health and that this is an important area of research to develop further,” Claire shared. “Furthermore, I believe that youth involvement in tools for peers is extremely impactful.”

NYAP members gave feedback on a range of survey elements, including the content of the questions, accommodation and accessibility considerations for youth participants, the survey length and design, and the mode of distribution. Gillian participated in a video story about her experiences during the pandemic. And Claire took part in an advisory council workshop in April 2022 to provide feedback on the study findings. 

“The consultation enabled us to get practical feedback on improving the plain language version of the COVID-19 survey and interview guide aimed at determining the experiences of youth with neurodevelopmental disabilities and their families in accessing services and their mental health needs during the COVID-19 pandemic,” the “Nothing without us” team reported. “The NYAP also provided feedback to help us ensure that our survey was as accessible as possible.”

“We’d recommend the NYAP’s consultation service to researchers, given the ease of the consultation process and the members’ helpful advice that reflected the needs and lived experiences of youth with neurodevelopmental disabilities.” 

Visit the project website to learn more about the “Nothing without us” study.

Getting to know our Phase 2 Programs: Citizen Engagement

As recently announced, the next phase of the CHILD-BRIGHT Network is being made possible thanks to a grant from the Canadian Institutes of Health Research (CIHR) under Canada’s Strategy for Patient-Oriented Research (SPOR), as well as matching funds from our generous partners. This support will allow us to grow from Network to Movement as we realize our mission for 2022-2026: moving our patient-oriented research into action through insight and methods grounded in implementation science and knowledge mobilization that embed the principles of equity, diversity, inclusion, decolonization and Indigenization. 

In order to achieve this vision and become a movement for change for children and youth with brain-based developmental disabilities and their families, we have brought together experts from across Canada to lead our five patient-oriented programs.  

For the past six years, our Citizen Engagement (CE) Program has monitored and enhanced citizen partnerships. In Phase 2, the CE team will continue to do so while assuming leadership nationally in promoting patient-oriented research in child health research and working closely with the EDI-DI Program to engage people who are underrepresented in the network. This important work will ensure that the rights of children with disabilities of diverse backgrounds and abilities are respected. Leading this work is Sharon McCarry, CHILD-BRIGHT’s Director of Citizen Engagement and Chair of the Citizen Engagement Council. 

Sharon McCarry
CHILD-BRIGHT Director of Citizen Engagement
Chair, Citizen Engagement Council

We sat down with Sharon to learn more about the CE Program’s plans for Phase 2: 

WHAT IS YOUR PROGRAM’S MANDATE? 

Sharon McCarry: Citizens—children and youth, patients, parents, family members, caregivers, and health professionals—are at the heart of CHILD-BRIGHT. Our program aims to meaningfully engage people touched by brain-based developmental disabilities to guide the ongoing work of the network.  

Since CHILD-BRIGHT’s beginnings, we have fostered meaningful engagement with youth and families, notably through the creation of our Citizen Engagement Council (CEC), composed of youth and young adults with brain-based developmental disabilities, parents of children with brain-based developmental disabilities, and other members, including researchers and health professionals. The CEC launched multiple measurement strategies to understand the engagement and partnership experiences of our network members. We created a Parent Liaison role to guide and support our parent-partners and spaces co-designed by and for youth with lived experience of brain-based developmental disabilities to be heard in research by developing our National Youth Advisory Panel.  

HOW DO YOU PLAN TO ACCOMPLISH THIS? WHAT ARE THE MAIN TOOLS (CONCEPTS, FRAMEWORKS) THAT WILL BE USED TO FURTHER THIS MANDATE?  

SM: As we build on our successes from the past six years, a big priority for CE will be engaging citizens from equity-deserving communities. We recently recruited new youth and we are also planning on leveraging current relationships with our members and the EDI-DI team to form new connections and build relationships with new organizations, community groups, and people living in rural environments. 

In Phase 1, we developed several resources from lessons learned to enhance patient-oriented research.  We will work with our project teams so they can incorporate these lessons at the start of their implementation science research projects, such as the tips that were developed out of responses to our stakeholder engagement study. These resources will also become part of a toolkit to support capacity building for investigators in child health research institutes and centres across Canada. 

We’ll also collaborate with the Training & Capacity Building Program to train our members in new concepts that are key to our Phase 2 work, including implementation science, knowledge mobilization, and equity, diversity, inclusion, decolonization and Indigenization, so they can fully and confidently engage with our network. 

TELL US MORE ABOUT YOU. WHAT MOTIVATED YOU TO TAKE ON THIS LEADERSHIP ROLE WITH CHILD-BRIGHT? 

SM: I’ve been a passionate community advocate for families living with autism spectrum disorder and brain-based developmental disabilities since 2007 and I am committed to making meaningful and significant change in policies and services for the disability community. I initially joined CHILD-BRIGHT in 2018 as a parent-partner and member of the Strongest Families ND Parent Advisory Committee. Then, in 2021 I took on the role of Director of Citizen Engagement and Chair of the Citizen Engagement Council. I’m excited to be at the helm of the CE Program, working with our amazing CEC at such a pivotal time for the network, as focus turns to becoming a movement for change for children, youth and families.  

WHY IS AUTHENTIC PATIENT-PARTNERSHIP SO IMPORTANT FOR RESEARCH?  

SM: As a network falling under Canada’s Strategy for Patient-Oriented Research (SPOR), CHILD-BRIGHT has been at the forefront of a shift in health research. We are conducting research ‘with’ or ‘by’ patient, youth and family partners, as well as other network members, instead of ‘for’ them. This approach is intended to promote a better health system and better health outcomes.  

In order to fully realize our mandate, and as we strive to align with the disability community’s mandate of “nothing about us without us”, it’s crucial that we create and maintain ever stronger connections with patients, youth, families, caregivers, and the community at large.   

WHAT LEARNINGS FROM PHASE 1 WILL YOU BE LEVERAGING IN PHASE 2? 

SM: We can learn a lot from our first round of onboarding network members. In Phase 2, we’ll be especially focused on clarifying roles and expectations for our patient-partners involved at the project, committee and network levels. We hope this will ensure early engagement of all our members in the research process. In Phase 1, we also developed compensation guidelines, which we will provide to patient, youth and family members involved in our research and network efforts right from the get-go.   

Thanks to the three-part stakeholder engagement study conducted in Phase 1, we were able to gather a lot of valuable information that we can act on to enhance the engagement experience of our network.   

For example, we learned about the need to develop relationships among patient, youth and family representatives and research team members in informal ways. Closed or smaller group conversations and coffee chats are great for this!  

We’ll also emphasize effective and ongoing communication to clarify project goals and allow network members to stay actively involved. Regular check-ins with members during each phase of the research process will be a big part of that communication, as will offering accommodations and flexibility around people’s schedules and methods of participation in committee or project activities. 

WHAT ARE YOU MOST EXCITED TO SEE IN PHASE 2?  

SM: I’m most excited to see research culminate in changes to policy and practice for children, youth, and families with brain-based developmental disabilities! For the CE Program specifically, I’m looking forward to increased cross-collaboration between programs, looking at the terminology we use to ensure our language truly represents all our members, updating our compensation guidelines, and more. I’m optimistic about what our network can accomplish when we work together to bring about real change. 

Thank you, Sharon, for this insight into the Citizen Engagement Program!  

Consult the list of current opportunities to get involved with our network here. If you’re interested in participating in the Citizen Engagement Program, reach out to Citizen Engagement Coordinator/Project Manager Corinne Lalonde. 

Learn more about our other Phase 2 programs: 

Get to know our Implementation Science (IS) Research Program 

Get to know our Training & Capacity Building (T&CB) Program 

Get to know our Knowledge Mobilization (KM) Program 

Get to know our Equity, Diversity, Inclusion, Decolonization and Indigenization (EDI-DI) Program 

CHILD-BRIGHT members lead submission of report to UN Committee on the Rights of the Child on children with disabilities in Canada

Children with disabilities are often overlooked when discussing disability rights and children’s rights. Having research-based data to inform the gaps and services needs for these children in Canada and having them represented and engaged in the international children’s rights context is a unique chance to raise awareness about the specific needs of children. 

The Participation and Knowledge Translation in Childhood Disability (PAR-KT ) Lab, led by Canada Research Chair in Childhood Disability: Participation and Knowledge Translation and CHILD-BRIGHT KT Co-Lead Keiko Shikako, led the submission of a parallel report and subsequent update on children with disabilities in Canada during COVID to the United Nations Committee on the Rights of the Child (UN CRC Committee).

The report, initially published in 2020, outlines issues faced by children with disabilities in Canada based on research evidence and the lived experiences of parents and youth, areas of opportunity in relation to these issues, and recommendations that can begin to address these problems. It also presents testimonials provided by parents of children with disabilities that highlight positive developments as well as areas of opportunity. Learn more about the reporting process below.

Key dates in the reporting timeline

October 2020

Youth from the CHILD-BRIGHT community participate in the UN CRC Committee pre-session where they speak on topics of importance for children with disabilities in the context of children’s rights.

2021

 A UN CRC Committee meeting with the Government of Canada (called a “constructive dialogue”) is planned but is postponed due to the pandemic.

March 2022

Colm and Sharon McCarry in front of Parliament Hill in Ottawa

The Canadian Civil Society Organizations, led by the Canadian Coalition on the Rights of Children, ask several partners to suggest groups of children and youth who should be engaged in a constructive dialogue with the Government of Canada. Youth from the CHILD-BRIGHT community also participate in these consultations with the Civil Society Organizations, including Colm McCarry.

Colm is 18 years old and identifies as an Autistic person with low vision in one eye and ADHD.  He is a full-time student at the Ontario Virtual School completing grade 12, although he lives in Montreal, Quebec. He said:

“This was a very cool experience to be included in a group of young Canadians that were sharing their experiences and I felt heard. I felt we were all listening and so were the organizers. We weren’t just people with a diagnosis being asked to show up as a token group being scrutinized. I felt that there was hope that something positive will come out of our participation and maybe real changes will happen to consider the realness of mental health being an important part of everyone’s overall well-being. Mental health is health care, period.”

— Colm McCarry

May 6, 2022

Download the plain-language infographic

Keiko Shikako takes part in a meeting of a group of Canadian Civil Society Organizations and the UN CRC Committee. “In this meeting we impressed upon the committee that children with disabilities in Canada continue to face discrimination,” Keiko shared. “Data being collected at the federal level only reflects a small part of the reality of children, such as the number of children who have functional limitations, but not the impacts of these limitations on their ability to participate in school, play, and other fundamental areas of development.”

“During the pandemic, these inequalities were highlighted. For instance, in many of our research studies we saw that children with disabilities who receive all their health and rehabilitation services through schools were left with little or no accommodations and services. Considerations were also not taken in the return to school, leaving families and children without essential supports they needed. Mental health services for children with disabilities were also compromised. Families described how the pandemic impacted their child’s levels of anxiety and, in some cases, augmented behaviour issues.”

“Emergency responses should consider the specific needs of children with disabilities and their families. The Government of Canada should take advantage of the efforts being put towards the implementation and monitoring of the Convention on the Rights of Persons with Disabilities along with the Convention on the Rights of Children to maximize opportunities and not duplicate efforts.”

May 17-18, 2022

The UN CRC Committee constructive dialogue with the Government of Canada, which had been postponed due to the pandemic, finally takes place. In this session, the Government of Canada meets with the UN CRC Committee and is asked about concrete actions that they have taken since the last report in 2020. These questions are important, as they will guide the development of a set of “Concluding Observations” for Canada, a document which then comes the reference point for another cycle of implementation of the rights of children. Some of the questions that are presented to the committee members through the PAR-KT lab report and during the session with the committee are asked by committee members to the Canadian government delegation.

How you can engage in the CRC reporting process

As a part of the childhood disability community, here are some steps you can take to engage in the CRC monitoring and reporting process:

• Watch the Canada review session here;

• If you hear anything that you think the PAR-KT lab should follow up on, or that misrepresents the particular needs of children and youth with disabilities, you can write to Keiko Shikako, who will be following up with the UN CRC Committee along with the Canadian Coalition for the Rights of Children to address issues that come up during the review session;

• Commit to reading the Concluding Observations that the UN CRC Committee will make to the Government of Canada after the review. This document can be used as a tool to keep the government accountable to policies that should be implemented to respond to the needs identified. It can also help guide research to respond to the human rights of children with disabilities and can inform clinical practice and community action towards creating a society that respects, promotes, and facilitates the fundamental rights of children with disabilities and their families to live happy, health, playful lives.

How you can learn more about the reporting process and Canada’s contribution

Download the CHILD-BRIGHT Policy Hub infographic

• Read the full parallel report and consult the plain-language infographic summarizing the key points from the report.

• Watch PAR-KT lab member and CHILD-BRIGHT patient-partner Rachel Marten’s TikTok about the May 17-18 meetings

• For more on Canada’s contribution, you can view the List of issues in relation to the combined fifth and sixth reports of Canada, published by the UN Committee on the Rights of the Child, as well as the Consideration of State Reports and List of Issues Prior to Reporting (LOIPR) of all participating countries.

• For more information on how the report process works and how to get involved, you can consult the CHILD-BRIGHT Policy Hub Infographic.