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 2012.

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 Participa

nts

• 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 Connectio

ns

SELF-DETERMINATION THEORY

Deci and Vansteenkiste 2004

AwarenessAcceptanc

e

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

Email us at chp.change@gmail.c

om