Image description: Head shot of white female with brown hair.
WITH is pleased to present Expert Conversations, an ongoing series that features conversations with experts in the fields of healthcare, disability, digital health, and philanthropy.
Today’s Expert Conversation is Judy Mark, the parent of a 23-year old son with autism and the Co-Founder and President of Disability Voices United (DVU). Judy leads DVU’s advocacy and programmatic efforts. DVU is a grantee of WITH.
Judy was instrumental in the passage of the Self-Determination Law and has been active in the implementation as a member of the DDS workgroup, Chair of Westside Regional Center’s local advisory committee, and a member of the Statewide Advisory Committee. Judy has written and edited two books on the Self-Determination Program and has spoken extensively throughout California and trained thousands of individuals and families.
Judy is a faculty member at UCLA where she teaches undergraduate courses in the Disability Studies Program. She recently led the Autism Media Lab which produced seven short documentaries on the inclusion of people with non-speaking autism. Her past professional experience includes over 30 years with national policy organizations, most extensively focusing on immigrant and refugee rights.
Judy has a BA from UCLA in Communications Studies and a Masters in Politics and Public Policy from the Eagleton Institute of Politics at Rutgers University with coursework at the Woodrow Wilson School at Princeton University. Judy lives in L.A. with her husband, attorney Allen Erenbaum, and son, Joshua, and a daughter, Emma, a student at Barnard College at Columbia University in New York.
1) Can you provide a brief history of Disability Voices United and about the work you are focused on today?
Disability Voices United was founded in 2017 by a group of people with developmental disabilities and their families to advocate for choice and control, better outcomes that matter to us, and systems that are equitable and accountable to us. We are leaders of the self-determination movement in California and advocate for supported decision-making and the rights of people with communication disabilities. We have produced reports on the profound racial and ethnic disparities in services and the limited safety net that exists for people with developmental disabilities who are in crisis. We have also been leaders in educating and fighting for the rights of people with disabilities during the COVID-19 crisis. In 2020, we also created and led a coalition of disability organizations called Disability Vote California that educated our community about voting.
2) Describe the Parent-to-Parent Supported Decision-Making Message and Training Development Project.
This project conducted six focus groups of parents of teenagers with intellectual and developmental disabilities (I/DD) in California to test salient messages and materials to encourage supported-decision making (SDM) in health care and other areas. The focus groups informed the development of materials and presentations, including a parent handbook called, “With Support and Without the Court”. The project also focused on Spanish-speaking parents who lack documentation and face significant risks in the conservatorship process. Six diverse community-based organizations were selected to provide training to their communities based on the handbook and materials developed in order to leverage the project to a greater number of parents.
3) Did you experience any challenges while developing the project? We know that COVID-19 added to the challenges people are facing.
Yes, the pandemic didn’t help at all. We had to hold three of our focus groups by Zoom instead of in person. But, in some ways, that enabled us to recruit parents from throughout California. We also had to hold our train-the-trainer program virtually. But ultimately, we got more done with the project than we had planned, so it all worked out.
4) Can you share a story of how the project impacted participants?
During one of the focus groups, one of the parents told us that they had a scheduled court date to conserve their child because they were told to by their school, regional center, and other parents. They had never even heard of supported decision-making. But after learning about it, they told us that they were going to cancel the application for conservatorship and try SDM. One parent at a time!
5) Is there anything else you’d like to add?
DVU also developed an internal publication and presentation about what we learned from the focus groups and presented this information to state and national organizations who advocate for guardianship reform and SDM. We are hoping that sharing the most persuasive messages to parents will help these leaders with their advocacy. Many of these advocates were surprised at some of the results but seem open to using them.
Thank you, Judy, for the work that you do!