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“Using the Power of your Story for Positive Change”

11:00am – 12:30pm: Workshop Session 1

1. Telling Your Story: Finding Your Voice
Presenter: Leslie M. Leslie, Project Director, MassPAC, Federation for Children with Special Needs
Family stories help connect us to each other and find our common concerns. Your personal story details the impact of systems on the lives of your children and your whole family. Learn practical tips to tell your story effectively for use at team meetings, in community forums, with health care providers and policy makers to raise awareness and understanding. Your story needs to be told.

2. Making Sense of Health Care Financing
Presenter: Cathy Hickey, M. Ed., Family Navigator
Navigating health care financing for a child with special health needs is often challenging. What is available? What is my child’s eligibility? Are there premiums? This presentation consists of an overview of the Affordable Care Act and Masshealth/Commonhealth, an explanation of pathways to eligibility, how to access benefits and services, and the associated costs. Learn how your family story can make a difference in accessing benefits!

3. Emergencies Happen! What’s Your Plan?
Presenter: Mariann Manno, M.D., Professor, Pediatrics and Emergency Medicine; Associate Dean, School of Medicine for Admissions
This session will explore issues children with special health needs and their families commonly face in a large emergency department. Different types of EDs will be discussed (those with and without a Pediatric ED; those with and without subpseicalists). Strategies that parents can use before and during the visit to effectively share their story will also be discussed.

1:30 – 3:00pm: Workshop Session 2

4. Do You Know What You Don’t Know About Health Care Transition?
Presenter: Nancy Mader, MA,CRC, Director of Transition Projects, Federation for Children with Special Needs
Join a panel of parents, young adults, and professionals to discuss the who, what, when, why, and how of health care transition. The panel will discuss the challenges and consequences of overlooking this process as well as the successes and benefits of transitioning to adult healthcare services.

5. The Individualized Health Care Plan: Collaborating with School Nurses.
Presenter: Mary Ann Gapinsky, MSN, RN, NCSN Director of School Health Services, MDPH
The Individualized Health Care Plan (IHCP) is a dynamic tool for planning the care of students with special health care needs at school.  The iniatition of the process for assessing and planning the care of the student should begin as soon as the student begins transition to the school.  During the first contact with the family, the school nurse should begin to establish a trusting relationship with the family by listening  and planning to make sure the child’s health needs are met in school and safe care is provided.  It is important that parents share information and their understanding of the student’s health, needs and strengths throughout their child’s educational experience.

6. Positive Change Can Happen with Effective Storytelling!
Presenter: Bonnie Thompson, Family-Centered Child Health Care Advocate and Laurie Meade, Parent, Mass Families Organizing for Change
Learn from parents with lived experience that your story matters and needs to be heard.  This panel will discuss how families can use the power of their story to impact all levels of healthcare access, services and policy for children with disabilities.

Funding provided by the U.S. Department of Health & Human Services Health Resources & Services Administration Grant # H84MC08005