Jan 29 2008

What’s New? Developmentally Disabled Children Grow Old

transitionsprogram.gifUnless you have a developmentally disabled child or adult in your life, this is something you may never have thought about before.

When I was a child, I knew of other kids who spent their lives in wheelchairs, or went to special schools. When I got to college, I used to volunteer in a state-run home for “special” children.

But these kids didn’t often make it to adulthood. Or if they did, we didn’t know about it.

The world has changed, along with the health and medical care these children receive. Now, many of them — probably most of them — make it to, and through, adulthood. They are mainstreamed into normal classrooms. They make the transition into their 20s, then 30s, 40s, 50s…. it’s tough to believe that babyboomers have a subset of developmentally disabled adults that were not expected to live so long.

When they were younger, they were cared for by their parents and their pediatricians. So what happens when their parents are gone, and they have graduated from pediatrician-aged care?

When I said this blog would address something you probably never thought about — that’s the question I meant. And I have an answer for you that is hopeful, heartwarming, and showcases the best humanity has to offer.

I was contacted last week by John Reiss, PhD, from the University of Florida, asking if I would share their health transitions program for DD adults with you, my blog readers. His program is the answer to the question. Dr. Reiss sent me a link to information about the program — and ding ding ding! What a bell it rang!

Several weeks ago, on my radio show, I interviewed Dr. Nienke Dosa, from SUNY Upstate Medical University’s Center for Neuro-developmental Pediatrics — and her program for health transitioning is very similar. And yes, it turns out Drs. Reiss and Dosa know each other professionally. (Of course I had to ask! If they didn’t, I would have made sure to introduce them.)

The bottom line is that their programs are targeted to these young people who now must transition to adulthood — they need training and jobs, they need life skills — and they need specialized healthcare. Whereas their parents have been the keepers of their health, now they must learn to take over their own healthcare and decision-making. These programs exist to help those who have in the past been considered helpless and unable to care for themselves. Now, instead, they are taught to thrive and take control of their lives themselves.

This is a feel good story for you, and I feel very good sharing it. It’s a story of challenges being overcome by education and guidance. My favorite kind.

Want more tools and commentary for sharp patients?Sign up for Every Patient’s Advocate email tips
– – – – – – – – – – –
Join Trisha in the Patient Empowerment Forum at About.com
– – – – – – – – – – –
Or link here to empower yourself at EveryPatientsAdvocate.com

%d bloggers like this: