UCSF’s 16th Annual Developmental Disabilities Conference, presented by the UCSF School of Medicine and the UCSF School of Nursing took place last week. As always, the conference provided updates to the medical community from experts in the care and the future of individuals with disabilities.
It was a tremendous conference.
The Special Hope Foundation provided a grant for the educational content of the conference, along with Alta California, Far Northern, Golden Gate, North Bay and Redwood Coast Regional Centers.
What struck me about this year’s conference was the level of engagement between the presenters and the attendees. A few examples:
- Ruti Regan gave a heartfelt talk about how to communicate with people with disabilities, which included tips on how to listen, a skill that under the simplest of circumstances is hard to master. Ruti’s talk was so full of insight that we’ll be interviewing her on the topic for the Special Hope Blog. Stay tuned.
- Susan Mizner, Disability Counsel for the ACLU, talked about Supported Decision Making (see our video that describes this topic) and about alternatives to guardianship. We’ll be interviewing Susan as well.
- Ari Ne’eman outlined how to use Home & Community-Based Services(HCBS) quality measures to support community living.
- Amy Westling, the Director of Policy for the Association of Regional Center Agencies (ARCA) provided a straightforward overview of the California’s Regional Center Services, including the challenges to the system that lurk on the horizon.
- Cathleen Small gave a talk, which to me, was at the heart of the UCSF Developmental Disability Conference. She is the parent of a youngster with Down Syndrome and also the Medical Outreach Alliance Coordinator for the Down Syndrome Connection of the Bay Area, one of the Special Hope Foundation’s grantees. Cathleen is passionate about helping new families have a better introduction to the Down syndrome world than she did when her son was born. She shared ways for the medical community about how share the news of a Down syndrome diagnosis in a supportive manner.
- The emerging topic of the Zika virus infection and associated intellectual and developmental disabilities was discussed with subspecialists from infectious disease, developmental pediatrics, obstetrics, and environmental health.
But perhaps the most uplifting presentation of the conference was from our friend and grantee Rick Guidotti of Positive Exposures and the FRAME Project. In addition to telling the story of Positive Exposures, Rick premiered his latest video about Fragile X Syndrome (funded by the Special Hope Foundation) . The final cut of the video will be released soon and added to the FRAME Project’s library of videos.
Laura Shumaker is the Communication Director for the Special Hope Foundation.