I sat in a child-size chair and watched as my two-year-old son, Matthew, dressed in his green Gymboree shorts and a blue-striped polo shirt, stacked small multi-colored blocks. “See how he is drooling a little?” asked the child psychologist, “That means he is working hard.” She would later use the word “developmentally delayed” to describe my first-born son. I was devastated and read everything I could to educate myself (back in the encyclopedia/library days, before the Internet was invented.)
The Co-Chairs of UCSF’s Developmental Disabilities: Update for Health Professionals Conference, a conference that the Special Hope Foundation is proud to support, have responded to parents like me with a mini-medical school on developmental disabilities for the public. Read more about the course here.
Fast forward 26 years…
Matthew is now 28, and is on the autism spectrum. He assures me that I am going to live to be at least 100.
“There are some things parents can’t do,” says Special Hope Grantee Dr. Clarissa Kripke, “such as care for our kids forever. But we can make sure the people who we entrust to take over when we are gone share our values and our vision. We can also leave them the infrastructure they need to deliver high quality services.”
Dr. Kripke, Director of Developmental Primary Care at UCSF, will be discussing successful community living models for people with developmental disabilities this coming Thursday, Nov. 13 at 7pm as part of UCSF’s Mini-Medical School for the Public.
Some of Dr. Kripke’s ideas:
- Instead of fixed programs, an array of modular services and activities that people with developmental disabilities can pick and choose from as their needs and interests evolve.
- Choosing models of excellence that are cost effective, and can be scaled or expanded.
- Spending based on what we know from 35 years of experience supporting people with disabilities in the community.
Including healthcare. Dr. Kripke is well known for developing, with other healthcare partners, the CART Model, a new way of delivering health care services to people with developmental disabilities.
“Successful community living means full access to the community. Inclusion builds public support. When we get to know and understand people, we care about them more. We vote for better policies. This strengthens the sustainability of good service models that benefit both individuals and society.”