Health and wellbeing – Access and equality for all on the occasion of World Down Syndrome Day
For those of us on The Road, WDSD was… hectic to say the least. Hectic in a GOOD way! I didn’t want the month to end without talking a little bit about the UN panel discussion on health.
If you missed the presentation, you can watch it via download. It’s four hours of great speakers talking about – as you would expect, health care and access around the world.
I was personally excited to see that one of Josh’s doctors from when we lived in Maryland was speaking. Dr. George Capone from the Kennedy Kreiger Institute Down syndrome Clinic in Baltimore, MD is one of my personal heroes.
He talked about guidelines that exist for newborns, and for children. These guidelines are published by the American Academy of Pediatrics. Dr. Capone mentioned that they were developed in 1994 and revised in 2001 and 2011. They apparently try to update them regularly.
The only thing is – they stop at age 21.
Add to this the fact that adults with Down syndrome age faster than “typical” adults and the issue becomes even more complicated.
“age related issues are accelerated in this population” “when aging actually begins is a good question”… - Dr. George Capone
It was an emotional presentation for me to watch. For one, here’s a man that literally saved my sanity when Josh was a baby – talking about things that applied to us NOW as adults. (More about that on my Walkersvillemom blog
– which is being moved/updated as we speak).
Also – I’ve started worrying about how we’ll address the medical issues of aging without having access to any specialists where we are. I never really took the time to think about “aging” as another phase in our lives where we would need to seek out specialists……
I’m hoping that this means Dr. Capone and his fabulous clinic will extend their services to older adults!
Four full hours of information
If you don’t have time to listen to the whole recording – Dr. Capone was just one of MANY informative speeches given that day – his 15 minutes starts at 1:45 on the “tape.” He also had hand-outs that you can access here.
To the great self-advocates that spoke – THANK YOU! It was fabulous to see young adults actively involved in such an important presentation on an important day!