Youth Steering Committee member, Ren Koloni, recently graduated from the committee. At their graduation, Ren shared the following thoughts, which they gave us permission to share. Ren’s story reminds us of how important it is for youth to guide their transition to adult health care, and to have the tools they need to do it successfully.
Now that I am leaving the Youth Steering Committee, I will miss this community, but I know that each of you will continue to fight for people like us, to be treated equally and fairly when we need healthcare.I hope that this center will continue to get better at listening to young people with IDD, valuing what we say, and sharing in conversation with us. I want to leave you with my story. I did not know I was autistic until late in life. I have never gotten formal services, and I have no contact with my family members. After I went to college, I was in charge of my whole life, including my healthcare, without help or support. I didn’t have help from a mom, a dad, or a caregiver. I didn’t have any connections to service providers. I didn’t even know how to ask for help. My doctors didn’t help me through transition either. In fact, I had to fight to get my own medical records. Even now, I am fighting discrimination from doctors, because of my gender identity, my body size, the way I communicate, and my disabilities. I am telling you my story because I know there are other people like me. Not everyone has help to transition. Not everyone has family. Not everyone gets services. Now that I am leaving this group, I am asking each one of you to please remember to advocate for people like me. Remember that we can’t assume where people are coming from. We can’t assume that everyone has help. We have to be ready for people who are doing this on their own, and we should make this as easy as possible for them. Thank you all for sharing your time with me and with the Center. There are no voices in this conversation more important than ours. Nothing about us, without us.