DDNJ Author Insights Podcast: Civic Engagement and Youth With Disabilities
The need for engaging youth with disabilities in making policy that affects their lives
was a recurring theme in the podcast.
In the latest DDNJ Author Insights podcast, researchers report on developing and evaluating a pilot program for civic engagement among youth with disabilities. Their scholarly article is in Volume 4, Issue 2 of the Developmental Disabilities Network Journal.
“So many of the policies that we have in place, especially for individuals with disabilities, have been put into place and written by people without disabilities,” said Megan Best, lead author and doctoral candidate from the University of Illinois Urbana-Champaign. “When we specifically think about when IDEA was reauthorized in 2004 … there’s a public comment opportunity where people can come in and give feedback. And out of that… only 1 percent was given by people with disabilities.”
That lack of input only underscores the need for people—and especially youth—with disabilities to be involved in making policy.
“A lot of times the lives of these students, these families, these adults with disabilities, are controlled and bounded by these laws,” said Matthew Wappett, podcast host and IDRPP executive director. “And as you pointed out, a lot of times, people with disabilities are not engaged in the making or the feedback or the advocacy for those laws and the changes that need to be made.”
The research team included co-researchers with disabilities. It also involved several federally-funded Parent Training Information centers, or PTIs. “PTIs … have this knowledge,” said Amanda Johnston, an author and doctoral candidate from Vanderbilt University. “They are supporting families, kind of on the ground.” The organizations helped inform the research and recruit participants, she said.
Involving students and researches with disabilities highlighted some barriers, the authors said.
Sarah Dimissie, a self-advocate and researcher working remotely with Vanderbilt University, highlighted some of them in the interview. “I would say, the challenge might be… the technical issues come up when facilitating a training, and then something goes wrong, and then you have to backtrack.” She also found it was important to take learning styles into account. “Being able to find out what learning style works for you and what might work for someone else would definitely be helpful to ask.”
Other barriers seemed built into the education system.
“One of the first barriers, I think, that we encountered was this piece that there was limited knowledge about civic engagement about your rights,” Johnston said, “and what IDEA was and how it impacts you, and knowing that you play a role in that as a youth with a disability…
“We have history classes, and we learn about the Civil Rights Movement, and we learn about all these different things across history, but we don’t often teach disability history and disability rights or even self-advocacy. …
“In thinking about IEP meetings themselves, are they accessible? Are the IEP documents accessible?”
One participant wanted to be a nurse, so she hoped to take a health occupations class within her district. She couldn’t because she didn’t have the right prerequisites. She wasn’t given access to them.
“Sometimes there’s some red tape around getting access to the courses that they’re interested in,” Best said, “based on district policy.”
Bullying was another common theme. Participants wished there were real consequences for bullies in the schools.
One result from the research that surprised the team: they were able to witness real mentorship. “There were two young adults who were in their early 20s, and one young adult who was kind of earlier in their career path,” Best said. “And that young adult was really going through some hard times in schooling and really struggling with issues of bullying and feeling very frustrated. … I’ll always be grateful that I was there to witness this, but the other two focus group participants really stepped into this mentorship space…
“The relationships that developed between the participants was not something that we could have planned for.”
To hear the entire conversation, click on the player above or subscribe to DDNJ Author Insights.