TAKING CHARGE OF MY HEALTH: Partners in Health TransitionA New Website for Teens & Young Adults with I/DD, Families and Caregivers

Marilyn Vitale MA, Mitchell Levitz, Barbara Levitz MS Ed, Katie Borras MS, Karen Edwards MD MPHWestchester Institute for Human Development University Center for Excellence in Developmental Disabilities

Background

Methods

• Youth with disabilities and parents/caregivers consistently report that neither schools nor their pediatricians adequately focus on activities that promote a smooth transition to adult health care or other services • Despite the availability of health planning resources, few guides are

specifically for teens and young adults with developmental disabilities, their families and caregivers to help in achieving successful transition from pediatric to adult health care• Self-advocacy skills and self-determination are an essential framework

for health self-management

To develop and disseminate a website providing information and resources designed to guide teens and young adults with intellectual and developmental disabilities (I/DD), family members and caregivers to achieve successful transition from pediatric to adult health care

• Reviewed literature and on-line resources• Conducted two focus groups with parents and young adults with I/DD• Extensive review of resources in the National Gateway to Self-

Determination publication: Research to Practice Guide: Self-Determination and Health• Reviewed WIHD’s My Health, My Choice, My Responsibility curriculum

and iPad App

Goals

• Nine self-paced and parallel learning modules that can be used in total or as independent “stand-alone” topics• One set specifically designed for families/caregivers and one parallel

set for teens & young adults with I/DD particularly interested in leading more independent lives. Easy to navigate back and forth between these two sets• Provides information, tools and guidance based on transition

experiences of other teens & young adults, families/caregivers and health providers

Design

InformationMarilyn Vitale, MA mvitale@wihd.orgKatie Borras, MS kborras@wihd.org

Explore the development of other application formats and guides for use of the website within classroom instructional setting for middle & high school health curriculum and post-secondary programs and in community-based health and disability settings

Topics Include: 1. Getting Started: Transition Plans, Timelines and Check-lists2. Health Goals in Individual & Community Plans 3. Health Records & Summaries4. Health Insurance5. Health Choices and Medical Decision-Making 6. Moving from Pediatrics to Adult health Care 7. Health Self-Management & Self-Advocacy 8. Staying Healthy9. Changing Roles: Letting Go/Taking Charge

Presentations:• Self Advocacy Association of New York State (SANYS), Albany, NY• Family Medicine residents at St. Joseph’s Medical Center, Yonkers, NY• Self Advocates Becoming Empowered (SABE) National Conference,

Oklahoma• WIHD UCEDD Community Advisory Committee, Valhalla, NY• WIHD LEND trainees, Valhalla, NY

Visit our website by scanning the QR code with your smart phone or device!

http://www.takingchargeofmyhealth.org/

Dissemination

Next Steps

Presented at 2014 AUCD Meeting and Conference, Washington D.C.Development of this resource was supported, in part, by the Special Hope Foundationhttp://specialhope.org/