Children and Youth with Special Health Care Needs (CYSHCN) are children and youth who have or are at increased risk for chronic, physical, developmental, behavioral, or emotional conditions and who also require health and related services beyond that required by children generally.

HOW PEOPLE WITH DISABILITIES AND THEIR FAMILIES CAN BE INVOLVED IN, LEAD, AND CHANGE SYSTEMS OF CARE

BY LAUREN AGORATUS, M.A.

WHY ENGAGE SELF-ADVOCATES AND FAMILIES?

Approximately 25% of households in the US have children and youth with special health care needs, who have (or are at risk for) chronic physical, developmental, behavioral, or emotional conditions. (mchb.hrsa.gov/programs-impact/focus-areas/children-youth-special-health- care-needs-cyshcn) The esearch is clear that engaging families of children with special healthcare needs in improving systems of care, leads to better outcomes for their children. That's why the US Department of Health and Human Services HRSA Maternal and Child Health Bureau funds a network of 59 Family to Family Health Information Centers (F2Fs) around the country to help individual

families navigate systems of care, and a national technical assistance center, Family Engagement and Leadership in Systems of Care (FELSC). There is a Family to Family Health Information Center in every state, plus in three Tribal Nations and five US territories.

Family Voices National, in collaboration with the SPAN Parent Advocacy Network, leads this important initiative intended to support F2Fs, state Title V Maternal and Child Health Programs, and others to be more effective in reaching and engaging diverse families of children with special health care needs at all levels. The technical assistance center elevates the experience and expertise of diverse parents and others with lived experience, to ensure that