Background

1. Empowering Individuals and Families as Advocates: The Advocacy ATLASSharon Romelczyk, MPA, James O’Leary, MBA, Genetic AllianceKathy Brill, MEd, Parent to Parent USABev Baker, Family Voices “When faced with barriers, challenges, or even new experiences, individuals may have to speak up to have their voices and needs heard. The Advocacy ATLAS includes over 240 resources to empower individuals and their families to advocate and take steps to get what they want and need.” ATLAS: Accessible Tools for Leadership and Advocacy Success Background Results Advocacy is an important part of life for individuals with genetic conditions, disabilities, and/or special healthcare needs and their families. Individuals advocate on behalf of themselves or others every day to communicate needs, share experiences, and take steps to get what they want and need. It can be a challenge for both new and experienced advocates to locate quality resources that will help them get the services, support and access they need. • The ATLAS launched in October 2013, featuring over 240 tools for leadership and advocacy in ten different topic areas. As part of the launch, a three-part webinar series was used to highlight resources from the ATLAS and advocacy stories from family and self advocates. • Preliminary Results: • Disseminated to over 800 support and advocacy organizations including 700 disease-specific organizations, 39 Parent to Parent programs and 36 Family Voices state affiliate programs • Trained 130 individuals on how to access advocacy and leadership tools (Sept.-Oct. 2013) • Nearly 2,000 page views in the month following the launch (Oct.-Nov. 2013) • Future targeted outreach efforts will continue to reach support and advocacy organizations that serve individuals and families www.geneticalliance.org/advocacy-atlas Methodology Genetic Alliance (GA), Parent to Parent USA (P2P), and Family Voices (FV) collected tools and resources from their combined networks of parents, parent advocacy groups, disease-specific advocacy groups, disability groups and other partners. Leaders from GA, P2P, and FV developed criteria for inclusion, resource categories, and an easy-to-use format for the toolkit. Prior to being included, all resources were carefully vetted using standardized criteria to ensure quality and relevance. Conclusion: Empowering Indviduals • Self and family advocates provided important feedback on: • The types of resources to be included • The site design and function • The name of the site • Families submitted their pictures and personal stories on advocacy to be included on the site. • The ATLAS empowers individuals and families through: • Easily accessible, quality resources on advocating in ten life areas • Resources focused on improving access to needed services and supports • New partnerships that encourage collaboration and sharing of resources Criteria for Inclusion Advocacy ATLAS was developed by Genetic Alliance in partnership with Parent to Parent USA and Family Voices with support from the Health Resources and Services Administration (HRSA), Grant No. U22MC04100, National Coordinating Center for the Regional Genetic Services Collaboratives. This project was funded in part by the Maternal and Child Health Bureau, Health Resources and Services Administration (HRSA) Grant No. U35MC16451, Congenital Conditions Program, in partnership with The Arc and Family Voices.