Youth with special needs demand a say in decisions affecting their lives

Rana Nasrazadani loved her elementary years, but high school was “the first low point in my life.”

Teachers didn’t speak to her directly about her marks or assignments, recalls the 19-year-old. Instead they talked to the educational assistants she relied on because of her physical disability and special learning needs. When it came to accommodations she needed in the classroom, she was rarely asked her opinion.

The adults often wanted Nasrazadani, who has cerebral palsy, to use her power wheelchair because it was easier for them, she said, even when she preferred to walk because it was her only chance for exercise.

“At the age of 16, you should be able to manage your own stuff. But they took that away from me.”

In her final year, she tells of feeling unsupported in her decision to go directly to university.

“I felt like I was left to go through the transition on my own,” said Nasrazadani, who is heading into her third year at York University studying human rights and equity studies.

Her recollections are among 170 submissions at the heart of a groundbreaking new report released Tuesday that reveals the obstacles youth with disabilities face on a daily basis in schools and communities.

The report, titled “We Have Something to Say,” is the first of its kind to actually put youths’ voices front and centre, said Irwin Elman, Provincial Advocate for Children and Youth, whose office was behind the two-year project.

The document outlines problems and makes recommendations related to family and home life, schools, and supports and services, and transitions across the lifespan.

“Young people want greater ownership and personal control over the decisions that affect their lives and futures,” Nasrazadani told the audience of more than 200 who gathered in Toronto for the event.

“We need professionals to see us . . . as the experts on our own lives.”

Seventeen young people later sat down in a closed session with Tracy MacCharles, Minister of Children and Youth Services, and nine other delegates from government, education, health care and community agencies.

Report recommendations include:

• Making sure each young person is at the centre of all decisions affecting their lives and futures

• Setting up youth advisory panels in provincial ministries such as Education and Children and Youth Services so that people directly impacted by policies and services have input into their design

• Eliminating wait lists for services and funding

• Providing mandatory special ed training for student teachers and training all school personnel who work with students with disabilities

• Providing more supports for siblings and parents

But it’s the first-person excerpts that give the report its emotional punch. They come from youth with autism and fetal alcohol syndrome disorder. Others have learning disabilities, medical conditions, physical disabilities, mental health issues or a combination. They also come from their siblings, parents and other caregivers.

Those voices, also expressed through music, art, poetry and video, highlight cracks in a system that is frustrating to navigate and changes from one ministry to the next. They also reveal the heartbreak of being denied opportunities to socialize with peers, of being constantly underestimated or harshly treated by frustrated adults who don’t understand what’s behind an outburst or inattentive behaviour.

Many wrote about wanting to belong, and to be seen as a person rather than just defined by their disability.

Stories about the school system were particularly grim for students like Salvatore (Sammy) D’Agostino, one of two youths who spearheaded the report with the help of a 30-member advisory panel, ages 8 through 30.

As a kid who loved ancient history, D’Agostino dreamed of becoming an Egyptologist. Until, he recalls, a high school teacher told him to be “more realistic” and said university would be too hard for him.

“Because I have a special need, low expectations were put on me and for a long time I only lived up to those,” says D’Agostino, 28, of Vaughan, who was diagnosed with a learning disability in Grade 3.

Today, he’s studying for his Master’s in public policy administration and law at York University.

Educators need to consider “who the students actually are more than just their special need,” he said.

Written by Andrea Gordon, and retrieved from the Toronto Star