So I sent out a bunch of emails looking for a user interview. Good news is that I got a response from a summer camp that works exclusively with children and adults with Down Syndrome. I was thinking that they would have an interesting view on the users experience.
This is the women who said she would talk to us:
Sandra Cushner Weinstein, PT, LICSW, LCSW-C
Director of Services and Camps, Department of Neurology,
Children's National Health Systems
Assistant Professor of Pediatrics and Neurology,
George Washington University School of Medicine