TAKING CHARGE OF MY HEALTH: Partners in Health Transition

1. TAKING CHARGE OF MY HEALTH: Partners in Health Transition • A 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 MPH • Westchester Institute for Human Development University Center for Excellence in Developmental Disabilities Background Design • 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 • 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 Goals http://www.takingchargeofmyhealth.org/ 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 Dissemination Topics Include: 1. Getting Started: Transition Plans, Timelines and Check-lists 2. Health Goals in Individual & Community Plans 3. Health Records & Summaries 4. Health Insurance 5. Health Choices and Medical Decision-Making 6. Moving from Pediatrics to Adult health Care 7. Health Self-Management & Self-Advocacy 8. Staying Healthy 9. 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 Methods • 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 Next Steps 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 Visit our website by scanning the QR code with your smart phone or device! Information Marilyn Vitale, MA mvitale@wihd.org Katie Borras, MS kborras@wihd.org Development of this resource was supported, in part, by the Special Hope Foundationhttp://specialhope.org/ Presented at 2014 AUCD Meeting and Conference, Washington D.C.