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The disability experience conference

The disability experience conference. Transitions During Adulthood. Education. FAPE. Teens Twenties Thirties. Lifespan. Medical Systems . Pediatric. Adult-Oriented Health Care. Independent Living. Housing. Public Benefits. Medicaid/SSI/Title V.

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The disability experience conference

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  1. The disability experience conference

  2. Transitions During Adulthood Education FAPE Teens Twenties Thirties Lifespan Medical Systems Pediatric Adult-Oriented Health Care Independent Living Housing Public Benefits Medicaid/SSI/Title V Financial Independence? Vocational

  3. Background and Situation • 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 2012.

  4. Who We Are! 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.

  5. Essential Components of CHANGE

  6. Philosophy of CHANGE • 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

  7. Self-Determination Theory Deci and Vansteenkiste 2004

  8. CHANGE’s Application OF Self-Determination • Advocacy • Awareness • Acceptance

  9. Objectives • 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

  10. Thanks for Supporting CHANGE Email us at chp.change@gmail.com

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