Stories from the Field: Building a Transformative Partnership with Families and Clinicians

Elaine has spent more than 25 years uniting partners in public health policy efforts and is the parent of two young adult children with special health care needs and disabilities. She has worked with families, professionals, agencies, and decision makers to engage communities, promote awareness, and increase access to care. Elaine oversees the Family Voices of California’s Project Leadership advocacy training program, which educates, supports, and engages families to lead and advocate for health systems improvements for children with special health care needs. She conducts training of trainer workshops and is a liaison with policy organizations and agencies. Elaine serves on the California State Council on Developmental Disabilities Sacramento Advisory Committee, the UC Davis MIND Institute UCEDD Community Advisory Committee, the California Nurse Led Discharge Learning (CANDLE) Collaborative, and the National Down Syndrome Advocacy Coalition.

Alison is a mother of two children; one with complex medical needs.  She is a graduate of Family Voices of California’s Project Leadership; currently employed as a special needs advocate with Autism Society of Los Angeles. Alison has been a member of the UCLA Mattel Children’s Hospital Parent Advisory Council since 2012 – serving as chair of the council for two of those years.

Jennifer’s research focuses on the development of strategies to enhance the family-centeredness of the care environment, to promote the safe transfer of patients from the hospital to home, and to support children with medical complexity in the home environment. She is the Principal Investigator of the CANDLE Collaborative, a nurse-led discharge learning collaborative that is working to improve the quality of discharge at hospitals across California.

Allison leads the foundation’s efforts in family engagement and family-centered care. She serves on the Advisory Committee for the Funders’ Group on Parent Organizing, Family Engagement, and Leadership Development and is the chair of the Family and Youth Leadership Committee for the Association of Maternal and Child Health Programs. Allison is the parent of a child with special health care needs and is dedicated to ensuring the family perspective is valued at all levels of the health care system.