It’s been a busy time for us at Ken’s Place! From the CDSS Annual conference in Hamilton ON May 18-20, to Access Awareness Day June 3rd back home at the Shoal Centre in beautiful Sidney BC, I am reflecting on just how special it was to be part of it all. I met so many amazing people and was surrounded by more love, laughter and enthusiasm than I have been in a long while. At the conference, we participated in numerous sessions where speakers with Down Syndrome were presenting alongside speakers with Ph.D.’s. From opening Keynotes to the closing Endnote and everything in between I learned interesting up to date facts, listened to other’s stories, heard about the efforts for inclusion and advocacy that others are promoting in all areas and for all ages of people with Down Syndrome. I was encouraged by the research, education, awareness and support for DS that is happening today compared to when Ken was growing up 30, 40 years ago. So much for new families, children, teens and young adults for sure, and what looks like a good start to information coming for older adults with DS and the needs there. And yes, there is still much work to do to keep the inclusion conversation going, not only between family members, professionals and agencies but including the voices of self-advocates themselves, who communicate it better than anyone.
I also chatted with various organizations that exist to offer services and support for people needing assistance, usually at later stages in life, and had the opportunity to ask what their views were, or understanding was for including adults with DS, to get a sense of where Kens Place Foundation could fit in and fill a niche and learn how to structure the non-profit best to serve the needs of those aging with DS. There were a couple speakers from the US, one in particular, Dr. Brian Chicione, the Medical Director from the Adult Down Syndrome Centre in Chicago, that I felt could offer helpful resources for others to learn from and possibly get the support they need. They do quite a bit of research at this end of the life cycle for people with Downs and have been around for over 25 years, compiling significant amounts of data that are available in formats that can be easily understood. I had a chance to chat with Dr. Chicoine to see how we can offer some of these resources on our website for others to access. Stay tuned!
It was encouraging to have so many people at both events come by our booth set up for “Hello My Name is Ken”, and Ken’s Place Foundation, to chat with us about our story and how it may impact their family eventually. I was truly honoured to be asked by Beacon Community Services and Shoal Centre, to give the keynote address at Access awareness Day and share with others not only our story, but what we are working towards as a solution for access to qualified, appropriate, knowledgeable care for adults with DS heading into their 40’s, 50’s and even 60’s on average today. Check out the video of my talk https://youtu.be/qz_ceFDdLlQ also included on the “Events” tab of our website.
For now, we will rest and stay home for a bit and continue to build on all the amazing relationships and friendships we started, to see where this journey takes us next. It’s very exciting indeed, emotional at times as well, but mostly so encouraging to see the interest, hear other stories and be part of something to honor Ken’s legacy and help those coming after him so they can have access to qualified care without labels or prejudice. In referencing the work of Daniel Pink and his theory of a society operating with, “A whole new mind”, I believe access to this type of care already exists, if we could just get the agencies, public and private, to communicate and work in symphony with each other.