Tonie Sadler, a postdoctoral fellow at Shirley Ryan AbilityLab Center for Rehabilitation Outcomes Research, specializes in disability health policy, poverty, and disparities research. A former direct-support professional in residential programs, she also spent time working with students with intellectual and developmental disabilities in Japan as part of the Japanese Exchange and Teaching (JET) program. She says in order to make significant societal changes, the framing of the disability conversation needs to change.
“If we change to a mindset that every single human has these basic rights, then it’s just a no-brainer that you invest in appropriate supports so that people can live their best lives,” she says. She’s trying to find a balance in her work-life between community advocacy, research, and the area of service on which she built her academic career. This academic career was ignited when she managed an organization that assisted people with disabilities in obtaining home and community-based services (HCBS) as a residential program administrator.
During her time as a residential program administrator, chronic wait lists for services were a recurring problem, both in Illinois and nationwide. “I loved the advocacy part of it, just acting as a person who can help folks achieve what they want in life,” she says. But she started to question why the field was undervalued. “It’s horrible pay,” she says. As a manager of 30 to 40 people at a time, “I was constantly apologizing, saying, ‘I wish I could pay you the world.’”
If we change to a mindset that every single human has these basic rights, then it’s just a no-brainer that you invest in appropriate supports so that people can live their best lives.Tonie Sadler
These experiences led her to return to school to study disability policy and research. Sadler wrote her dissertation on people with disabilities as they transition out of high school and try to access home and community-based services. “Teens with disabilities who need services after high school have to jump through a million bureaucratic hoops to be able to access anything as adults,” she explains. Sadler shares that many of the people with whom she spoke didn’t know about wait lists for services until they were 21 years old. Placing people on a wait list for adult services at age 13 or 14 and eliminating the requirement to reregister for services annually are two succinct policy changes that would have a strong impact on the lives of teenagers in this category. “The solutions are very obvious, and the only reason they’re not getting done is because people don’t prioritize them,” she says.
Sadler was raised by a disabled mother. She says that growing up in a low-income background with a family member with disabilities gave her a front-row seat to the barriers and challenges in accessing services faced by the disability community and their family members. “I think everybody has disability integrated into their lives in some ways,” she says. “But trying to seek out streamlined ways to access services has been a real challenge since I was younger. It’s just been a part of life.”
I think everybody has disability integrated into their lives in some ways...But trying to seek out streamlined ways to access services has been a real challenge since I was younger. It’s just been a part of life.Tonie Sadler
Sadler is currently working on a project in which she has a lead role is assessing the success of HCBS services and person-centered care by conducting interviews with HCBS recipients. While she likes the fact that she can interview more individuals because of Zoom, she misses the social aspect of being in the same room as the people with whom she speaks. “If it weren’t for COVID, I’d be at these places hanging out and learning from folks,” she says. She prefers to take a backseat to self-advocates and says her long-term goal is to do more participatory-action research. “I’m seeing a lot more of the ‘Nothing about us without us’ framework in the medical communities, which is huge,” she says. “My responsibility is to make sure I’m not centered (in the work).” She says it’s important for people without disabilities to listen to self-advocates and follow their leads. “Whether we like it or not, we grew up in a culture that does not respect this community,” she says. Sadler is hopeful that with the groundswell of interest in person-centered supports, this will change in the next few decades, and she is excited that she can contribute to these changes through the research at CROR.