THE DISABILITY EXPERIENCE CONFERENCE

Lifespan Teens Twenties Thirties Medical Systems Pediatric Adult-Oriented Health Care Vocational Financial Independence? Housing Independent Living Education FAPE Public Benefits Medicaid/SSI/Title V TRANSITIONS DURING ADULTHOOD

Transition has been a source of frustration for parents, pediatric- and adult-oriented health care providers, health care administrators and advocates  Many transitions occurring simultaneously: medical, education, housing, employment/insurance  1/4 of families in Pennsylvania reported that transition discussion never happened* Poor transition → poor health outcomes, increased hospitalizations, and more complications ** Primary barrier: Lack of preparation of both patients and caregivers Pediatric culture does not prepare patients for the adult medicine experience. Each year, ~5% of patients at Children’s transition care, many to adult-oriented specialists of the Health System.. *National Survey of Children with Special Health Care Needs 2009/10, Child and Adolescent Health Measurement Initiative (CAHMI) **White, PH, et al. A Primary Care Quality Improvement Approach to Health Care Transition. Pediatric Annals. May BACKGROUND AND SITUATION

The Children’s Hospital Advisory Network for Guidance and Empowerment (CHANGE) is a youth led and driven initiative that advises consumers, families, and professionals about the transition process. It works to ensure successful transition to adult lives for individuals who have faced transitional barriers in healthcare. WHO WE ARE!

5 ESSENTIAL COMPONENTS OF CHANGE CHANGE Division of Adolescent Medicine Youth Leaders Adult Allies CHANGE Participants

Patient and family centered model of care Focus on the importance of peer mentoring Supportive leadership Transition is a process, not an outcome Holistic perspective of health and wellness Self-determination model PHILOSOPHY OF CHANGE

Self- Determination Autonomy Competence Connections SELF-DETERMINATION THEORY Deci and Vansteenkiste 2004

Awareness Acceptance Advocacy CHANGE’S APPLICATION OF SELF- DETERMINATION

Empower a new generation of youth leaders  Internships, mentoring, supportive leadership Provide a youth voice in the medical community to empower the youth perspective  Adult Allies, consultations Create and disseminate training materials  Transition GPS, Health Transition Conference Host trainings and events for, about, and by youth  Monthly Socials and Meet-Ups OBJECTIVES

THANKS FOR SUPPORTING CHANGE us at