At CHILD-BRIGHT, our work revolves around research, but today, we say 'thanks' to our many patient-partners who are engaging in distinct work outside our network also, to help youth with brain-based disabilities in their communities. Meet Carrie & Emma:
Carrie Costello with her three daughters.
In 2019, Carrie Costello, one of our BRIGHT Coaching parent-partners and a mother of three daughters, stepped into the role of CHILD-BRIGHT’s Parent Mentor. Since then, she has connected and collaborated with parents from all over Canada to learn more about their life and experience with disability in their home provinces and about their needs and experiences as research partners.
Carrie and her family recently made headlines for reasons other than her role as a Parent Mentor, however. Carrie’s middle daughter, Alejandra, has a profound intellectual disability and a seizure disorder with Todd’s paresis. She receives occupational therapy, physiotherapy, and speech pathology support at her school in Winnipeg. When the Winnipeg School Division published its proposed budget for 2021-2022 earlier this year, it indicated its intention to cut these services, arguing the services should be funded by Manitoba Health. However, the School District had not spoken to Manitoba Health about this proposition. This change would also profoundly impact the team approach to supporting children with additional needs.
When this news hit, the family did not stay still for long. Elder daughter Emma, in particular, leapt into action, mobilizing to start a petition to stop the cut to services.
The petition, and Emma and her family’s advocacy, quickly gained traction, garnering over 4,400 signatures. Emma, along with parents Carrie and Pablo, was interviewed on CityNews, speaking eloquently to the impact that such cuts would have for her sister.
A couple of weeks later, the good news arrived: the 2012-2022 Winnipeg School Division budget would not cut physiotherapy and occupational therapy for students with disabilities.
“I am so happy that it worked!” Emma shared with us. “Not only was it the petition that helped, but it was also the work of many people who stood up against this. I hope that this will help those in power realize the impact of removing occupational and physio therapists.”
Carrie expressed immense pride at seeing her eldest daughter taking a stand: “Watching Emma advocating for her sister means so much to me. When she is passionate about an issue, she throws herself in and makes a difference. It gives me great hope for the future.”
Emma Felices-Costello with sisters Alejandra (right) and Isabel (bottom left)
This does not mark the first time Emma has spoken up as a sibling. In October 2020, she was one of three youth who addressed the United Nations Committee on the Rights of the Child (CRC) during the children’s meeting for Canada, as part of the 87th pre-session of the United Nations (UN) Committee on the Rights of the Child. At the meeting, Emma spoke up on behalf of ‘glass’ children—siblings of a child with special needs, who are often overlooked by the higher needs of their sibling, and who must also often help to support them later in life. Read her full testimony to the committee here.
We’re heartened to see such strong and heartfelt youth advocacy in action! It’s proof that making your voice heard in support of a cause that matters to you can yield great results.