The system that provides care to special needs children in California has evolved over the past 80 years to meet the changing needs of this rapidly growing state. Today, about 10% of California’s children suffer from special health care needs. Consequently, the system faces many challenges, and as part of its ongoing efforts to address those challenges, the Lucile Packard Foundation for Children’s Health convened a gathering of experts in the field to discuss ways that the system might be improved.
The 50 workshop participants represented many different roles working in the system, including many with extensive expertise as scholars, practitioners, and advocates. Together, they engaged in two very focused days of exploration, discussing the strengths and weaknesses of the existing system, the challenges of the present and the future, and the nature and composition of an ideal future system.
The workshop was structured as a series of activities, beginning with a series of open-ended questions that framed the issues, and then identifying the key problems that the system faces, and developing possible solutions.
We discussed success stories from the direct personal experience of the participants, and considered the common elements that these stories shared. We reviewed ethnographic research on special needs children that the Foundation has recently commissioned from Point Forward, a firm of ethnographic research specialists, and discussed some broader conceptual models derived from the research.
We then examined the viewpoints of four major system constituents, those of patients and their families, care providers, the insurers, and family support organizations, looking at how these players support the broader process of providing care.
We then developed conceptual models of the ideal care system, and also developed specific solutions to key problems with the existing system.
The last major activity of the workshop focused on defining specific interventions that could significantly improve the performance of the system.
On behalf of the Foundation we would like to extend our thanks to all participants for their enthusiasm and engagement in all of the activities, and for allocating two days of their time to this effort.
This work will continue, with a follow-up workshop in October, and a subsequent convening with the Foundation Board in November. Participants may return to this web site for updates on those events.
Real Time Record
This web site is a record of the event in San Francisco as it happened - captured in real time and presented here in this web site. The documentation of the session includes the assignments each group was asked to work on and the results they produced. The large group conversations were documented in text and images as well. The documenation was captured throughout the course of each day of the session and is chronological (in the order that things happened). The text is not a transcription of the large group conversations. Rather, it represents the documentor's synthesis of what was being discussed.
This record is intended to be a reminder to the participants of the conversations that took place during the Workshop, to serve as a stimulus for further conversation and to serve as an artifact of the group's work.
For anyone who was not present at the event reading this, you may lose some of the energy and creativity the participants expressed - and some of the ideas may not translate completely without that context.
Photographs of participants and their work are included throughout the Real Time Record. To view a larger version of a marker board or poster, please click on the thumbnail image. The larger image will open in a new window. Close that window to return to where you were.