A new video series launched this summer features frank advice for healthcare professionals, directly from adults with intellectual and developmental disabilities:
“I want them to talk directly to me, because I am not a kid,” Eva Reed says on the video.
“We know what our bodies need and how they respond,” says Kayte Barton.
“It’s hard when doctors just assume things about you,” says Olivia Thomas.
“I’ve never been able to find doctors who see past my disabilities,” says Nell Coonen-Kote.
“Sometimes when I speak up for myself, it’s a problem,” says Heidi Myhre. “They think I’m a troublemaker.”
The two-part series, In Our Own Words: Improving Care for People with Disabilities, focuses on communication tips and detailed suggestions for providing the most appropriate care settings for people with a variety of disabilities.
Anna Phearman of the Minnesota Disability Law Center got the idea for the project after experiencing suboptimal care herself as a person with multiple disabilities, she said.
“It was also through listening to clients reaching out with frustrations about their interactions with practitioners that weren’t to the level of engaging a lawyer, but were still presenting a consistent barrier to people having a higher quality of life in the community,” Phearman said.
Working with the communications team at the Institute on Community Integration, and with self advocates connected as health messengers to Special Olympics Minnesota to produce the videos, the MDLC is now working to build awareness about them with provider organizations.
“One of the barriers our athletes mention during our free health screenings is the lack of experienced providers who they feel comfortable with,” said Jeff Prendergast, health programs manager for Special Olympics Minnesota. “When we talked with Anna, this project fit right into our goals of improving the lives of all our athletes, and our athletes are very passionate about this.”
For the project, ICI’s Jerry Smith conducted the interviews with dozens of self advocates, along with Phearman. Pete McCauley and Skylar Mihajlov filmed the interviews.
The critical element was sharing the feedback directly from people with disabilities, Phearman said.
“It was an incredible experience for everyone to work with all the people willing to share their experiences firsthand on camera,” Phearman said. “It reinforced for me how important it is to hear from a community when you’re trying to resolve an issue in that community. I think practitioners mean well, but when you don’t have that awareness and education, and haven’t spoken to people within the community, being well-meaning alone might not be the care someone needs.”
