C-RAIND working to improve quality of life for people with neurodevelopmental disabilities
C-RAIND is Michigan State University's Center for Research in Autism, Intellectual, and Other Neurodevelopmental disabilities. The center serves as a coalition of scholars and researchers from throughout Michigan State University focused on meeting the needs of communities through research, training, outreach, and service.
Mike Leahy is a university distinguished professor and he's C-RAIND's co-director. He opens the conversation by talking about the history and mission of C-RAIND.
“One of the things we did initially that was thoughtful is we listened to people,” Leahy says. “We listened to families and consumers and to people with those impairments. We've now organized our work into four transitions. We're very keen to look at issues related to conception and birth as the first transition. The second transition being preschool to school, and the third transition being high school to adulthood. And the fourth transition, which we added recently, is aging and mental health. So we are really looking at the kind of lifelong spectrum of needs and critical issues that we need to handle.”
“As we see the kids grow up and how they can be contributing members of society, we started to work very closely with the schools and local vocational rehab agencies,” adds Connie Sung, associate professor of counseling, education psychology, and special education. “What can we do to help these kids as they grow up and become more engaged and included in the society? We thought because of MSU's mission, we want to do more outreach and engage with the community and also provide education training and research in this area. So we thought this a very natural collaboration that we bring in high school students with disabilities on to campus to work alongside various employees and staff on campus in the department and units. At the same time, we want to interact with all the 40,000 undergraduate students who may not have prior experience with disabilities. This approach provides many opportunities for both the students with disabilities to learn from them and also for our staff, employees, and students to learn from individuals with disabilities, to know the talents, the potential, and the contribution that they can make to society.
“We also have a peer mentoring program. We have over 20 undergraduate students all over the campus in different majors involved in the program who are working and interacting with our students with disabilities. And we got a lot of positive feedback from the students that they are not only providing the support to our students with disabilities, but that they learn a lot from them. And some of them even change their major and career path because of these interactions. And we have been conducting research on the program’s impact on the climate and culture on campus. And because of the nature of the program, we provide different kinds of disability awareness training to our staff and employees that change a lot of the attitudes and perceptions of what a person with disabilities can do.”
Sarah Douglas is an assistant professor in human development & family studies. She says C-RAIND is one of the main reasons she was attracted to MSU.
“The thing that really drew me to MSU was the ability to collaborate with different individuals across campus in different disciplines. I really wanted a position in which I could grow professionally that would allow me to learn from a variety of different individuals who work with and support individuals with disabilities.
“My area of research really focuses on the youngest children. Primarily my research focuses on children ages two to eight. As part of what I've done here on campus, I developed a research lab that really focuses on supporting children with disabilities, especially those with autism and other developmental disabilities, their families, and their educational teams.
“I'm in schools and in homes with families. I'm working side by side to try to help create the best outcomes for these children. It's also provided many opportunities for me to not just collaborate with others at MSU, but people elsewhere for my students to really get excellent training and support.
“The things that I've been able to accomplish here have really been very much a part of the culture that C-RAIND has developed here on campus. There are people who are searching to come to MSU in a variety of different programs, not just your typical kind of disability-focused programs, but really trying to come here and learn everything that they can to impact families and children with disabilities in a variety of different ways.”
C-RAIND is working to become better known in the community.
“One of our real challenges is to get the word out in terms of what we're doing and to bring input into our programs from the community,” adds Leahy. “We're working on it very hard, but we've got a long way to go until we're really known as the place to go in relation to neurodevelopmental disabilities. One of the things that we're trying to do at the present time is use our MSU Extension program to really take research that is already shown to be highly promising as evidence-based practices and move those out into the community through MSU Extension. We reach many, many people all over the state and have an impact right away.
“One of the things that C-RAIND is designed to do is bring people together, support research, change attitudes, and promote understanding and empower individuals with these impairments for careers and life beyond school.”
What does success look like? How do you know if RAIND is having impact?
“One of the problems that all programs similar to ours encounter is the distance or the gap between research and practice,” Leahy says. “These are things that we want to take on very seriously, and many of our researchers really try to do that, to get right into the community, to display their interventions, to get their interventions accepted and utilized. But one of the issues I've argued quite a bit about this gap that we see between research and practice is that there's been all sorts of ways that have been devised to try to minimize that gap. But the real gap is that researchers need to be in the community doing research where people need it. And that's been something that we've been very strong on in terms of doing our research in natural settings so it really has that ability to be utilized and tested out in real settings, in real lives. It really makes a difference to us. Do we really have impact or not? We've been looking at that from the very beginning as the sole thing that we should be evaluated on.”
So what's ahead? Where do you hope to be in three, four, five, 10 years?
“We want to expand the community interaction with our programs. We'd like to move to an institute status where we can have more resources. The MSU family here has been extremely generous in supporting our programs all the way along. Most programs like our own were established through donor support. Ours wasn't. Administrators at MSU believed in what we were doing, thought it was the right thing to do, and have supported us to a certain point. We've now reached a level where our dreams and aspirations ahead of us are beyond what MSU can support. We're really going to be working to get donor support for real important things that will further give us the ability to reach this mission that we've got.”
“Some of the things that we've seen happen because of the momentum that C-RAIND has created around campus is we've already seen a huge outpouring from the community to create a lot of opportunities for inclusive programming,” Douglas says. “So instead of having programming that is fine for most families but doesn't really work for families with disabilities, we've started to see things like sensory friendly performances at the Wharton Center. We've seen other events pop up in the community through places like Impression Five. All of that has really come as part of the momentum that C-RAIND has started in this community.”
“That is a big deal for a lot of the families because when they did the survey after the performance of Lion King at Wharton Center, a lot of the families expressed their gratitude. They never thought they would be able to bring their kids to shows to enjoy family time,” Sung adds. “But this makes it possible for these families to watch and enjoy the show, not being judged, and be part of the community. They appreciate C-RAIND and Wharton Center and other community partners who make this all possible for the families and make the community more inclusive.
“Everybody has their strengths and weaknesses, including people with and without disabilities. If we can make the society more inclusive and universal for everybody, we don't need to even care about whether the person has disability or not. We just look at everybody. They are different, and they can contribute in their own ways.”
“I would emphasize our need to have the community interact with us and really be part of this,” Leahy says. “Our aspirational goal is to be the place to go for information and services and new research. But we need our community. I would ask that people who are interested in participating with us, whether they want to be a donor or whether they just want to be a supporter, to get involved and contact us.”
‘And I would just emphasize that we're doing some really amazing things here, and in part that's because we have this mechanism C-RAIND,” says Douglas. “We have a lot of faculty who are really doing work that impacts the lives of families with disabilities and making our community better. I think that those who don't know much about C-RAIND should look into it and find out what things we're doing that might have a direct impact on their world as well.”
MSU Today airs Sunday afternoons at 4:00 on 105.1 FM and AM 870.