Services Daylong Symposium: Collaborating Across Conditions and Communities
Collaborating Across Conditions and Communities
“Bringing it Closer to Home”
June 24, 2011
Bethesda North Marriott
This year, Genetic Alliance placed the family at the center of Services Day by integrating genetics into larger systems of care. We stepped into the shoes of the parents or individuals with a newly diagnosed child or family member. Then we walked with them through the experiences of not only responding and coping to the news of the diagnosis, but also navigating the complexities of healthcare, education, support, and advocacy within the context of the services and networks available in their communities. We built bridges between national policy, regional activities, and community-based programs and services to brainstorm ways in which the groups can learn from one another to make smart services more accessible and sustainable.
Services Day 2011 was framed by Healthy People 2020 and its science-based, 10-year national objectives for improving the health of all Americans. As we considered together the programs and services offered on a state and community level, this framework enabled us to weave high impact policy recommendations from a common language and shared goals. Participants came away from the event with concrete action items for how to collaborate and advocate across communities, conditions, and state lines, prepared to forge the future for services centered on the health and wellbeing of families.
Agenda
7:30 a.m. – 8:00 a.m.
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Welcome Breakfast
8:00 a.m. – 8:30 a.m.
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Opening Session: A Charge for Innovation
8:30 a.m.
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Welcome and Framework for the Day
Joe Valenzano, Exceptional Parent
Andria Cornell, Genetic Alliance
8:40 a.m.
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Healthy People 2020
Reem Ghandour, Maternal and Child Health Bureau, HRSA, HHS
9:00 a.m.
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The Significance of the Family Story
Moderator: Margaret Kruesi, American Folklife Center
A Parent’s Letter Project
Sarah Wagoner, Children’s National Medical Center
Putting Policy Issues on the Table
Ellen Ficklen, Narrative Matters - Health Affairs
The Healing Art of Storytelling
Andre Heuer - Performer and Instructor, The Art of Storytelling for The Loft Literary Center, and Facilitator/Coordinator/Host, Storyfront: A Place to Learn Storytelling
10:30 a.m.
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Break
11:00 a.m.
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Patient and Family Navigation: Sustainability and Outcomes
The Hali Project
Brad Thompson, Mountain States Regional Genetics Collaborative Center
NCI Patient Navigator Research Program
Martha Hare, Center to Reduce Cancer Health Disparities, National Cancer Institute
Individualized Education Program (IEP) Checklist iPhone app
Catherine Burzio, Parent Educational Advocacy Training Center (PEATC)
12:30 p.m.
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Lunch
1:30 p.m.
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Community Collaborations
Bringing Science Education into Neighborhoods
Vicki Park, University of Tennessee Health Science Center
Serving Those Who Have Served
Jessica McNurlen, Easter Seals Greater Washington – Baltimore Region (invited)
The Future of Disease Communities
Brian Loew, Inspire
Engaging Stakeholders in Outcomes-Based Collaboration
Sally Hiner, Region 4 Genetics Collaborative
3:15 p.m.
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Break
3:45 p.m.
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Best Outcomes Through the Lens of the Congenital Conditions Program
Alyson Krokosky, Genetic Alliance
4:05 p.m.
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Policy Outcomes: Incentivizing Communication and Support
Together, panelists shared communication and support successes on the state and community level and brainstormed ways these initiatives can be expanded in times of fiscal constraint.
Moderator: Jerry Hulick, General Agent Emeritus, The Washington Group Special Care Team
Panelists:
Karin Dent - NSGC 2011 President, Assistant Professor of Pediatrics, University of Utah Health Sciences Center
Christy Blakely - Executive Director, Family Voices Colorado
TJ Sutcliffe – Policy Advocate, The Arc
Gwendolyn Mason – Director, Department of Special Education Services, Montgomery County Public Schools (MD) (invited)
5:30 p.m.
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Outcomes of the Day & Maintaining the Momentum
