St. Mary’s Healthcare System for Children received a grant from the New York State Developmental Disabilities Planning Council (NYS DDPC) in 2007 to implement training for families of children who are medically fragile. For the purposes of this initiative, medically fragile was defined as “a group of children and adults who have profound disabilities resulting in dependency on long-term care, respiratory support, increased usage of medical supports and services and, caregiver supports.”
Originally, St. Mary’s created formal training that focused on advocacy skills for families. The training was designed to serve ten families per session and provide information and skills that families needed in order to advocate successfully for their child. While more than 180 families and providers received training over a 14 month timeframe, evaluations identified a need for a different approach to share information and resources.
Evaluations showed that families needed more immediate access to information. A forum was held with families to explore what types of information and resources they needed the most. A wide range of topics were identified including:
- Future Care Planning (Financial Planning, Guardianship, End of Life)
- Transition from Pediatric to Adult Medical Care and various transitions from school to independent living
- End of Life and Palliative Care
- Resources to provide access to up-to-date information and services
Based upon the training evaluations and forum feedback, St. Mary’s Healthcare System for Children, with its collaborators, the NYS Disabilities Advocacy Association and Network (NYS DAAN) and the New York State Institute for Health Transition Training of SUNY Upstate Medical University, developed this e-Toolkit.