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.

Learn more about how the CRC applies to children with disabilities


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.

Read our blog post: Celebrating Youth Voices at the United Nations’ Committee on the Rights of the Child


March 2022

Photo of Colm and Sharon McCarry in front of Parliament Hill in Ottawa, Canada

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

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

Former CHILD-BRIGHT research assistant headed to World Para Swimming Championships in Madeira

Jessica Tinney swimming at the Canadian Swimming Trials in April 2022.

Jessica Tinney at the Canadian Swimming Trials in April 2022. Photo credit: Scott Grant

We’re proud to share that former CHILD-BRIGHT Research Assistant Jessica Tinney will be representing Canada at the World Para Swimming Championships in Madeira in June!

Jessica qualified for the World Championships following the 2022 Canadian Swimming Trials from April 5 to 10 in Victoria, British Columbia, where she received a bronze medal in the 200m Freestyle and broke a Canadian record in the 200m Individual Medley.

A soon-to-be graduate of the kinesiology program at Queen’s University, Jessica joined our Knowledge Translation (KT) Program team in the summer of 2021 to put together our new KT Library, which is an evolving repository for the wide range of KT products created by our network since its inception in 2016.  The library houses many scientific and plain language publications, books and book chapters, reports, webinars, infographics and much more.

The library was created to further the KT Program’s goal of facilitating exchange and promoting the uptake and dissemination of existing and new knowledge relevant to children with brain-based developmental disabilities and their families—a mission that was a direct inspiration for Jessica when applying to work with CHILD-BRIGHT.

“The [job] description was about disseminating articles to make it so people who the research is actually meant for can read them. I thought that was interesting, based on my background and having a disability and not being able to read or understand the information before I went to school. I thought that'd be really cool,” she said. As part of the KT Library team, Jessica wrote plain language versions of some of the scientific journal articles published by network members and added the various resources and outputs to the library on the CHILD-BRIGHT website.

As a person with cerebral palsy, Jessica’s experiences with medical care have also driven home for her the importance of communicating knowledge in an accessible way to patients. She described going to doctor’s appointments and grappling with complicated explanations provided to her: “I never understood how any of it like related to me or what I needed to get from what they were saying, so I think to have like a resource, something like what we're doing here, would be really helpful to people.”

The time she spent in and out of physiotherapist offices as a youth, in particular, is also how she first found her way to swimming.

“I first started [swimming] because I really, really hated physiotherapy!” Jessica admitted, to the point that as a child she “would refuse to go” to her appointments.

Headshot of Jessica Tinney

Jessica Tinney

“I was originally in swimming lessons and my mom put me on a team. Then, when I went to my doctor’s appointments, they asked if I did physio, and I said no, I swim this many times a week. They said, ‘Great! Keep doing that and then you don’t have to go to physio.’”

She would begin her competitive swimming career in earnest as a teenager, but “my love for the sport grew from there. That's how I first got into it,” she shared.

After graduating from Queen’s this June, Jessica will be taking a year off school, but is actually considering a return to school the following year to study physiotherapy, equipped with her newfound experience in patient-oriented research.

We’re grateful to Jessica for her contributions to our Knowledge Translation team and wish her the best of luck in Madeira. We’ll be rooting for her and we’re excited to see what comes next!

2022 Training Innovation Fund

CHILD-BRIGHT is proud to launch its 2022 Training Innovation Fund!

The Training Innovation Fund will provide a maximum of $10,000 in funds to facilitate innovative training initiatives that will complement ongoing Patient-Oriented Research activities that focus on childhood brain-based developmental disabilities.

With this opportunity we intend to support the development of innovative tools and resources that develop capacity in the areas of Knowledge Mobilization, Implementation Science, or Equity, Diversity, Inclusion, Decolonization & Indigenization.

Applications are due July 15, 2022


Visit our grant competition page for details, eligibility requirements, and application procedure. Good luck!

2022 Training Innovation Fund Details

Meet 2021 Summer Student: Chloe Janse van Rensburg

This summer, CHILD-BRIGHT also welcomed student Chloe Janse van Rensburg. Chloe participated in the studentship training sessions while working with CHILD-BRIGHT Parent Peer Mentor Carrie Costello and PIUO Family Liaison Laesa Kim on their project, which was funded by a CHILD-BRIGHT Collaborative Mentorship Grant. Their project examines the benefits and drawbacks of asking parents to use their personal networks (such as social media, email, and other connections) to recruit for research.

Here’s what Chloe had to say about the experience:

“I had a wonderful experience working on a CHILD-BRIGHT project this summer. Not only has my knowledge about the research process increased, but my eyes have also been opened to the worth of patient engagement in research.

Prior to working on this project, I did not have any research experience, so having the chance to see the ways in which a project progresses, as well as being able to work with an amazing team, was such a great opportunity. I learned many things, including how to thematically code data, how to identify important things to consider when conducting focus groups, and to value the importance of authentic engagement.

I hadn’t really considered a career in research previously, but after this experience it is definitely on my list of potential career goals. If not a career in research, I will most definitely be able to use some of the things that I’ve learned this summer in other careers! ”

Read testimonials from the other 2021 CHILD-BRIGHT summer students

Meet 2021 Summer Studentship Recipient: Claire Dawe-McCord

Working with our READYorNot project as part of the 2021 CHILD-BRIGHT Summer Studentship Program, Claire Dawe-McCord conducted a review to identify key issues and policies that need to be improved relative to the health care transition of youth from the pediatric to adult care settings. She also worked with the project team’s Patient and Family Advisory Group (PFAC) to develop skills in patient-oriented research. She took on a leadership role within this group, co-facilitating meetings, preparing materials, consolidating discussion questions, and incorporating feedback from the PFAC into the team’s work.

Here’s what Claire had to say about the summer student experience:

“The CHILD-BRIGHT Summer Studentship taught me many things. As someone who has previously worked as a youth patient-partner, I have experienced many different kinds of patient engagement, including patient and family engagement in research, but I had yet to be on the other side of the equation. This summer I came to appreciate just how much work goes into creating meaningful engagement. I have come to realize how easy it is, even for researchers with the right intentions, to quickly slip back into the habit of consulting with patients instead of truly engaging.

This summer, I learned that to have “good” patient engagement in research, it is vital to keep open lines of communication between the research team and the patients, families, and caregivers involved. With proper communication, you can ensure that research priorities are set together and that everyone at the table is clear about what is expected of them, whose voice they are representing, and how they should engage with each other moving forwards. I also realized how engagement and partnership cannot be a last-minute thought; it has to be at the heart of your planning from the very first day.

As someone who is hoping to pursue a career in medicine and will likely have to do much more research throughout my life, I am hoping to incorporate my learnings into the care I provide, the research I conduct, and the way that I interact with others.”

Read testimonials from the other 2021 CHILD-BRIGHT summer students