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The New York State Institute for Health Transition Training was created at the Center for Development, Behavior, and Genetics at Golisano Children’s Hospital/SUNY Upstate Medical University in 2006 with funding from the New York State Developmental Disabilities Planning Council.

The Institute is a collaboration among pediatricians and family practitioners at SUNY Upstate Medical University, the NYS Area Health Education Center System, Syracuse University’s School of Information Studies, Central New York Developmental Disabilities Services Office, Parent to Parent of NYS, and Self-Advocates of NYS. The Burton Blatt Institute at Syracuse University is also a founding partner.
The Institute is governed by an interdisciplinary group of youths, parents, service providers, and health care professionals.
During Year 1 of the Healthy Transition project we conducted a series focus groups with youths who have developmental disabilities, with families, and with health care providers in order to prioritize content and to develop an appropriate and accessible format for the Healthy Transitions curriculum and tools.
With direct input from youths, parents and healthcare providers, we identified the ten health transition skills for our curriculum. Materials for each of these skills were developed in several formats in order to accommodate a variety of learning styles:
  • Webbook chapter with self assessment quiz
  • Power point presentation with or without audio
  • Video vignettes with moderator discussion guide
  • Interactive tools that promote collaboration
Our video vignettes were developed collaboratively with young adults who have developmental disabilities. The video vignettes promote “social learning” of skills and attitudes, and foster self-determination, a basic tenet of successful transition.The Health Transition Training Institute gratefully acknowledges the Burton Blatt Institute for funding of the video vignettes (Burton Blatt Innovation Award).
Year 1 was also devoted to benchmarking of innovative transition programs in Florida, North Carolina, and Pennsylvania. We gratefully acknowldege the guidance of:
  • John Reiss, PhD, Institute for Child Health Policy, University of Florida, Gainesville, Fla.
  • Dr David Wood and Deborah Ducett, LMSW from Jacksonville Health and Transition Services (Jaxhats) in Jacksonville, Florida.
  • Dr. Bruce Kelly and Irene Jurczyk at the Mountain Area Health Education Center (MAHEC) in Asheville, North Carolina.
  • Dr. Sweety Jain, Faculty Associate, Lehigh Valley Hospital Family Medicine Residency, Assistant Clinical Professor of Family and Community Medicine, Penn State College of Medicine, and Dana Boyd, Project Coordinator, Pennsylvania Academy of Family Physicians, Harrisburg, Pa.
In addition, we had the opportunity to learn about innovative transition programs at the Spina Bifida Association of America’s Transition Summit at the Centers for Disease Control in Atlanta, Ga in September 2007, and at the Bloorview Transition Conference in Toronto in May 2008, where we learned about transition initiatives led by Dr. M.E. Roebroeck’s research group at Erasmus University in Rotterdam, the Netherlands.
Benchmarking during Year 1 of the Institute has evolved into collaborations to improve resident training and to develop continuing education programs on transition care for youth who have developmental disabilities. In January 2009 we joined transition groups from Florida, Pennsylvania, and North Carolina for a panel discussion on resident education at the Society for Teachers of Family Medicine Annual Conference, Interstate Symposia, in Savannah, GA.
During Year 2 of the Institute we developed our website in collaboration with Tom Hardy and Data Momentum Inc. We then conducted beta testing of our curriculum and tools with the Center for Digital Literacy at the Syracuse University i-School. The Institute received funding from the New York State Department of Health Youth Advisory Council to link the Healthy Transitions project with social networking software. We developed a secure “virtual private network” of individually-owned websites that link youths to one another for informal support and mentoring. Each website offers secure archiving of our tools, including the transition information form. Websites also feature private messaging options that link youths to a personal transition team and shared calendar. The goal is to facilitate communication with providers in education, medicine, employment, and other systems of care, in order to improve the independence, health, and well being of adolescents with developmental disabilities. Usability testing was conducted with the NYS Department of Health Youth Advisory Council, in collaboration with the Center for Digital Literacy at Syracuse University.
With guidance from our advisory board, we identified several dissemination strategies for our curriculum and tools. Venues include Self Advocates of New York State, Parent to Parent of New York State, NYS Department of Health, Medicaid Service Coordinators with the OMRDD-DDSO, Model High School Transition Programs, Parent Partners in Health Education residency training programs, Article 28 and Article 16 clinics, and primary care practice sites affiliated with Family Medicine Practice Based Research Networks and Area Health Education Centers. In 2008 the SUNY Upstate Department of Family Medicine received major funding from HRSA to develop a Center for Excellence in Primary Care. This Center supports development of an “academic detailing” model for dissemination of the Institute’s curriculum and toolkit to rural family medicine practice sites. Finally, in 2008 we received a grant from the Institute for Innovative Transition (A Golisano Foundation and University of Rochester collaboration) to populate the resource directory for the Finger Lakes region on our website.
Established series of joint workshops on health care transition in collaboration with Parent to Parent of New York State. Please see Workshops for a complete listing. Introduced MY PLACE personal health record and social networking sites to service coordinators and at the Spina Bifida Center of Central New York. Received additional funding from the DDPC to disseminate the curriculum and tools in Spanish translation and to add resources and tools relevant to youth who have dual diagnosis (developmental disability and mental health/behavioral disability).

Published Handbook, Terms of Use, and Privacy Policy for My Place at My Place is a personal health record that links youths to a personal transition team. Team members are designated by the youth and have access to a shared calendar with email reminders, a goal setting tool, a discussion area, and the Transition Information Form, which can be used as a transition planner as well as a summary health record. The Transition Information Form includes patient-specific information for emergency planning and health care supervision.

We received funding to disseminate the Healthy Transitions currciulum to medical students at medical schools in states that are affiliated with the Northeast-Mid-Atlantic Consortium for Genetic Disorders (NYMAC).