FCSN // Newsletter // 2016 // Fall 2016 // Ninth Annual Joining Voices Conference

Ninth Annual Joining Voices Conference

Terri Farrel. Autism Resource CenterOn November 3, Mass Family Voices brought together more than 60 parents and professionals for the 9th annual Joining Voices Conference at the Edwards Conference Center in Framingham. Joining Voices is an annual opportunity for families of Children and Youth with Special Health Care Needs (CYSHCN) and their professional partners to learn specific skills to advocate effectively for their children and make informed decisions about healthcare services and supports, ultimately becoming better partners in decision-making. A huge thank you goes out to our sponsors Exceptional Lives, Franciscans School and Boston Medical Center Autism Program.

The morning started with keynote speakers Kitty O’Hare, MD, Director for Transition Medicine at Boston Children’s Hospital and Ziva Mann, parent, and Lead Patient Partner, Cambridge health Alliance sharing their “Secret Sauce: Creating effective partnerships between families and healthcare providers”, offering tools to build skills and communication strategies for coordinating a child’s healthcare from clinic settings back to primary care, from hospitals to home and school.

Workshop sessions were offered throughout the day. Beth Dworetzky, Project Director of the Catalyst Center held an interactive session on Payment Reform and Health Care Access, helping decode the “alphabet soup” of payment reform strategies (e.g., ACOs, MCOs, VBP, VBID, PCMH, FFS). Attendees learned about supply-side and demand reforms, including how these reforms might affect health care costs and impact access for children with special health care needs.

A presentation by Terri Farrell, Project Director, Autism Resource Center highlighted the process for accessing ABA coverage through private or public insurance (MassHealth). Darla Gundler, Director of the Early Intervention Parent Leadership Project helped parents explore the variety of roles families can play as an advisor/partner with healthcare professionals. At another popular session, Sabrina Feliciano, Public Affairs Specialist, Social Security Administration, spoke about Supplemental Security Income (SSI) fundamentals for children and adults.

As the afternoon wound down, parents participated in a conversation with Norianne Browder, Parent and Business Coach for Women, about best practices of self-care for the caregiver. Both parents and professionals left with increased knowledge and confidence. Participants stated that all of the presenters were “very knowledgeable” and offered “hands on practical applications”. One participant stated: “This is information I can use for myself and the families I help.”

For more information about Mass Family Voices, please contact Cathy Hickey, chickey@fcsn.org, Project Coordinator for Mass Family Voices and the Family to Family Health Information Center at the Federation for Children with Special Needs or visit https://fcsn.org/mfv.