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Children and youth with special needs speak with Ontario leaders about their hardship, frustration and alienation Français


News provided by

Office of the Provincial Advocate for Children and Youth

May 10, 2016, 13:30 ET

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TORONTO, May 10, 2016 /CNW/ - Children and youth with special needs gathered to speak with government representatives, education leaders, health professionals and service providers about their lives, dreams, and changes they need to achieve their goals.

These youth represent the views of more than 170 submissions received by the Office of the Provincial Advocate for Children and Youth as part of the "I Have Something to Say" project. The lived experiences and ideas for change shared by young people – many of whom have numerous or complex special needs – their families and caregivers from across Ontario are captured in a new report, "We Have Something to Say: Young people and their families speak out about special needs and change."

An estimated 300,000 children under the age of 18, or one in nine children, have a special need in Ontario.  Special needs include behavioral issues, autism spectrum disorder, Down syndrome, mental health issues, and long-term medical conditions.

Irwin Elman, Ontario's Provincial Advocate for Children and Youth said, "Like you and I, young people with special needs have ideas, dreams and talents; yet many are kept on the sidelines of their own lives when it comes to decision-making, denied opportunities, and access to the critical supports and services they need. As a result, many children and their families find themselves struggling, alienated, and discouraged from achieving their goals."

The report captures the experiences of young people, their families and caregivers/care providers and the barriers they face because society often associates them with their special need. Many spoke of navigating multiple, confusing and fragmented systems of care tied to educational, health, financial and community services and supports. The Advocate's Office repeatedly heard stories of families feeling overwhelmed having to play the additional role of medical caregivers, which in turn put substantial emotional, physical and financial burden. These frustrations are exacerbated if families live in isolated or remote communities, or are newcomers to Canada where English or French is not their first language.

A consistent theme is that young people received limited access to critical supports in the classrooms and in their health care. They also felt left out of the decisions about their lives or were denied opportunities to socialize with their friends, other kids, because of the label of "special needs or disability."

"High school was the first low point in my life," said Rana Nasrazadani, a member of the youth advisory committee. The discouragement and lack of support was something that I had never experienced before and it strongly affected me. I was also left out of important discussions about my progress. It made me feel pretty bad. At the age of 16, you should be able to manage your own stuff. But they took that away from me."

The report outlines recommendations to bring multiple ministries together to address service gaps for children with special needs; involve young people in decision-making processes; change the way that young people are perceived by services providers, educators and government; and offer better supports for families. A copy of the report and the full list of recommendations are available at: www.provincialadvocate.on.ca

"Submissions by young people and their families or caregivers speak to the need for a paradigm shift in Ontario where their voices are heard and they are seen as individuals who are not limited by their special needs," said Elman. "We are asking decision-makers to listen to these lived experiences and partner with young people to help them achieve their goals."

Young people and their families are encouraged to join the "We Have Something to Say" movement by sharing their stories and ideas for change at: #wehavesomethingtosay

About the "I Have Something to Say" project
In early 2014, the Advocate's Office launched the I Have Something to Say project to elevate the voices of young people with disabilities in an effort to improve communication between children and youth with disabilities and those who are in a position to provide them services to fill the gap between policy and practice.

The Advocate's Office conducted one-on-one interviews with young people, and received approximately 170 submissions in the form of written work, art, songs, videos and other mediums from hundreds of youth representing a cross-section of many different ages and abilities on the unique barriers they face trying to find or access services. Over time, the voices represented in the submissions took form and shaped the We Have Something to Say movement. This represents a mobilization as a community of young people, families, caregivers, service providers and others seeking to be part of creating collective, transformative change – the first of its kind in Ontario.

The Advocate's Office has compiled their ideas in the report on what changes are needed in the system to ensure they receive the care and support they require in order to live healthily, thrive and succeed.

About the Office of the Provincial Advocate for Children and Youth
The Office of the Provincial Advocate reports directly to the Legislature and provides an independent voice for children and youth, including children with disabilities and First Nations children. The advocates receive and respond to concerns from children, youth and families who are seeking or receiving services under the Child and Family Services Act and the Education Act (Provincial and Demonstration Schools). The Office is guided by the principles of the UN Convention on the Rights of the Child and has a strong commitment to youth involvement. For more information, visit: www.provincialadvocate.on.ca.

For updates, read the Advocate's Blog and follow us on Twitter and Facebook.

SOURCE Office of the Provincial Advocate for Children and Youth

Image with caption: "Children and youth with special needs in Ontario, along with their parents and caregivers, often compare their experiences of attempting to access services to navigating a maze. The young people whose voices are represented in this report want to have the same opportunities that other children and youth have to learn, form meaningful relationships and pursue their own paths in life. (CNW Group/Office of the Provincial Advocate for Children and Youth)". Image available at: http://photos.newswire.ca/images/download/20160510_C5166_PHOTO_EN_685886.jpg

Video with caption: "Video - We have dreams, skills, abilities and the right to pursue them. ‪#‎wehavesomethingtosay‬. On May 10th, the Office of the Provincial Advocate for Children and Youth is launching a new movement called We Have Something to Say. It is time to begin the conversation regarding our children and youth with special needs.". Video available at: http://stream1.newswire.ca/cgi-bin/playback.cgi?file=20160510_C5166_VIDEO_EN_685887.mp4&posterurl=http%3a%2f%2fphotos.newswire.ca%2fimages%2f20160510_C5166_PHOTO_EN_685887.jpg&order=2&jdd=20160510&cnum=C5166

Media Contact: Akihiko Tse, Communications, Media Relations Coordinator, (416)-325-5994, [email protected], Office of the Provincial Advocate for Children and Youth

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