After receiving significant feedback and concerns from stakeholders in the disabilities sector, the Manitoba Advocate for Children and Youth (MACY) is embarking on her first major child death investigation and research project into the provincial disabilities system, which requires input from parents and caregivers of children and youth with disabilities.

Manitoba Advocate Daphne Penrose is inviting parents and guardians to participate in a new survey launched today. Responses will be collected online until November 8, 2020 and will be used to inform policy recommendations made to government in the year ahead.

Since her mandate legally expanded to cover multiple child- and youth-serving provincial services in 2018, Penrose has heard several stories from families who are unsatisfied with both the quantity and quality of disability services available in Manitoba. Many have experienced lengthy wait times to access services and diagnoses.

The broad systemic investigation and research project will highlight the specific stories of youth with disabilities, including one youth who was caught between the CFS and disabilities systems at the time of their death. In addition, the report will highlight experiences of other youth currently entitled to disability services as well as children and youth with disabilities who have died in Manitoba. From these stories and the lessons they offer, Penrose felt it was in the public interest to investigate why Manitoba’s disability services are not working for all families. She plans to release a special report on the topic next year.

“No child should die due to service inequity. All children and youth in Manitoba deserve the highest quality of public services possible,” Penrose said.

Penrose wants to hear from families who have lived experiences supporting a child or youth with disabilities and their experiences accessing, or trying to access public services.

“For many children with disabilities, their parents and caregivers are their most active and vocal advocates and many have tried relentlessly and with much creativity to pull in services that will meet their child’s needs,” Penrose said. “I’m inviting all parents and caregivers to share their stories with me about what is working well and what must be changed so we can see systems improve and all children supported and flourishing.”

The Advocate has also been examining how the COVID-19 pandemic has affected accessibility of public services for children and youth and some of those findings will inform her upcoming report.

With the proclamation of The Advocate for Children and Youth Act in March 2018, MACY can now publicize any child death investigations, systemic research and recommendations made to government.

To read all of MACY’s past special reports, visit our website: https://manitobaadvocate.ca/adult/reports-publications/public-reports/

If you are a parent or caregiver of a child or youth with a disability and you would like to fill out the survey, click here: https://www.surveymonkey.com/r/FMVCTZ2

If you need assistance completing the survey or if you would like to tell us your story directly, please call us – our staff are here to help you! We can be reached by phone at 204-988-7440 or toll-free at 1-800-263-7146 (within Manitoba only).