FCSN // Newsletter // 2013 // December 2013 // Joining Voices 2013
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Joining Voices 2013

Learning Together at Joining Voices

By Cathy Hickey, Project Coordinator
Massachusetts Family Voices and Family-to-Family Health Information Center

Rosalie Edes

Assistant Secretary
Rosalie Edes

On Wednesday, November 6, 2013 we held our yearly “Joining Voices” conference at the UCC Conference Center in Framingham. With over 70 people registered, the day was an intimate and energetic affair.

We began with a heart-felt farewell to our colleague Barbara Popper. Barbara passed away in early November after a long and hard-fought battle with cancer. More than a friend, Barbara mentored many of us and led the way for families for over 25 years. Conference attendee Christie White summed it up best, saying, “We can see more and farther because of you.”

Keynote speaker Rosalie Edes started off passionately, speaking about the important work we all do every day. As Assistant Secretary from the Office of Disability Policies & Programs, Executive Office for Health and Human Services, Edes reminded attendees: “Although we are grappling with many challenges as families and as a state, a certain amount of tension – between groups, agencies, politicians, and lawmakers – is not only tolerable but can actually help make things happen for children on a broader scale.” Edes went on to say, “As parents, we must take risks and continually challenge ourselves to find the highest and best vision for our children that we know they can be.”

Parents and professionals chose from workshops including SSI, Communication is Caring, Opportunities for Family, Youth and Patient Engagement in Medical Home and More, MassHealth, Children’s Behavioral Health Initiative, and Health Care Transition. Many attendees praised the intimate atmosphere and felt it gave them more time to engage with presenters. The overall feeling was one of people coming together to learn and collaborate, rather than just going to lectures.

The day brought many opportunities for parents of children with special healthcare needs to network, share stories, and learn. In the true spirit of our agency, planning has already begun to bring fresh ideas to the 2014 Joining Voices Conference. With your help, it will be an even bigger success.