Empowered to speak up: The value of childhood self-advocacy

Learning to self-advocate early in life is an important part of a child’s health care journey. Through self-advocacy, a child learns how to become an active participant in their own care. This means learning how to ask questions and communicating their health needs to their care providers. The parent’s advocacy journey evolves alongside their child’s – from advocating on behalf of the child, to supporting their self-advocacy journey, to stepping aside entirely when the child becomes their own advocate.

Self-advocacy is a priority area of focus for UnitedHealthcare’s National Advisory Board (NAB) members. All people should be empowered to make their voice heard regarding their health care, especially people living with disabilities or other complex health care needs. In this video, we have an important conversation about what self-advocacy looks like for children with disabilities and their parents. I am joined by three parents who have lived experience:

• Angela Lello is the parent of two teen sons, Isaiah and Simon. Angela serves as Regional Policy Director at UnitedHealthcare Community & State and supports the UnitedHealthcare NAB.
• Patrice A. Heinz is the parent of Ashley, serves as Chief Operating Officer at the National Alliance for Caregiving, and is a member of UnitedHealthcare’s NAB.
• Debbie Wiederhold is the parent of Daniel, serves as Executive Director at United Partners in Pflugerville, and is a member of the UnitedHealthcare NAB.

This video’s topics include:

• What self-advocacy looked like for their children early in life, and how it evolved in teen years and adulthood.
• The evolution of their own advocacy as a parent.
• How care models have evolved in the health care system.
• Tools and supports for transition planning.