The SEEDLING Family SHADE Newsletter Volume 2, Issue 1 Family SHADE: New Website to Launch Fall 2012 Family SHADE MISSION: Delaware’s Family SHADE is a collaborative alliance of family partners and organizations committed to improving the quality of life for children and youth with special healthcare needs by connecting families and providers to information, resources and services. VISION: Family SHADE will enable, empower and enrich families’ lives by connecting families to supports and services. In November 2011, Family SHADE launched a temporary website as a mechanism to connect member organizations to one another and to share resources. As part of our continuing efforts to connect families with resources, Family SHADE will launch a new website in the Fall of 2012 with an exciting array of new features. The new website will include: a roadmap to services for families, a member’s blog, a searchable database, member contacts and information, and a coordinated statewide events calendar. So be sure to visit www.familyshade.org. Family SHADE Database and Mobile App Family SHADE’s database is nearly complete. The database will be Delaware’s premier resource for families and for providers who serve children with special healthcare needs. This comprehensive database of services will be accessible on the Family SHADE website. In addition, a new Family SHADE mobile application will allow families to access the database from a smartphone. Member organizations will be able to add a web button to link their websites directly with the Family SHADE database. The goal is to provide families and providers access to the latest and most up-to-date information any where at any time! Attention Organizations! In order to include the most complete and accurate data WE NEED YOU! You will be contacted by Children and Families First to provide information about your organization’s services and programs. This will allow Family SHADE to provide the most accurate and up-to-date information to families. In addition, funding is available for Family SHADE member organizations to receive free training, certification and access to the comprehensive database. We will let you know of training opportunities in the future. Searchable, for everyone, from anywhere. Funding for Family SHADE Member Initiatives In June 2011, Delaware’s Division of Public Health was awarded a grant from the Health Resource and Services Administration (HRSA) to address the needs of children and youth with special healthcare needs. Family SHADE received $225,000 of these funds to award mini-grants and subcontracts to Family SHADE member organizations. The initiatives that have been funded to date are listed below: OUTREACH STRATEGIES TO UNDERSERVED POPULATIONS “Identify and address the unmet health-related and service needs of children and youth with chronic health conditions in Delaware.” “The mini-grant funding allows us to focus on specific issues of importance to the families we serve. The mini-grant for families of children with chronic health conditions will create tangible resources and supports for families and identify access points to services for children with chronic health conditions.” ……………………….. Ann Phillips Executive Director Delaware Family Voices Awarded to the Parent Information Center of Delaware, Inc. Collaborators: Child Development Watch, Caminos de Georgetown and others FAMILY SUPPORT FOR CHRONIC HEALTH CONDITIONS “Identify and address the unmet health-relates and service needs of children and youth with chronic health conditions in Delaware.” Awarded to Delaware Family Voices Collaborators: American Academy of Pediatrics and the Family Advisory Council at A.I. DuPont Hospital for Children ANNUAL HEALTH FAIR EVENT “Conduct an annual health and resource event to provide an opportunity for families of children and youth with special healthcare needs to learn about the state’s comprehensive and coordinated service system.” Awarded to United Cerebral Palsy Collaborator: The Brain Injury Association of Delaware. ELECTRONIC ROADMAP TO SERVICES (Award Pending) “Provide families of CYSHCN with an electronic and printed ‘roadmap’ that clarifies the relationships between various services, providers, funding streams and eligibility criteria.” Two additional initiatives will be funded in the upcoming year: Page 2  WEB-BASED TUTORIAL ON TRANSITION  YOUTH SELF-ADVOCACY TRAINING Spring Summit a HUGE Success! Advisory Board Members Marie Anne Aghazadian Parent Information Center of Delaware Chris Buker Parents as Teachers Esther Curtis Brain Injury Association of Delaware Bill Doolittle, Parent Staci Forrest, Self-Advocate Rev. Robert Hall Delaware Ecumenical Council on Children and Families Lisa Jubb Variety — The Children’s Charity Jane Miller Practice Without Pressure Heidi Mizell Autism Delaware Ann Phillips Delaware Family Voices Pam Reuther Coordinating Council for Children with Disabilities; Easter Seals Kristina Stroh All the Difference Lori Verlinghieri, Parent Family SHADE held its Spring Summit on June 13, 2012 at Buena Vista in New Castle. The Summit began with the election of Family SHADE’s first official Advisory Board! The Advisory Board includes a youth self-advocate, family members and representatives of organizations that serve children and youth with special healthcare needs. Board members have generously committed to attending quarterly Family SHADE meetings for a three-year term. Officers were elected by the Advisory Board members in September. Chair: Esther Curtis, Brain Injury Association of Delaware Vice-Chair: Bill Doolittle, Parent Secretary: Staci Forrest, Self-Advocate The election of the Advisory Board was followed by an information-packed presentation on Social Media and Marketing for Non-Profit Organizations. Kati Driscoll, Social Media Analyst for AAA Club Partners and teacher of Interactive and Social Media at the Delaware College of Art and Design, and Lisa Quinn, Social Media Community Lead for AAA Mid-Atlantic, engaged Summit attendees with a dynamic and humorous presentation that included tips on how to effectively use Facebook, Twitter, LinkedIn and other forms of social media to reach families. Families Know Best: Gaining the Family Perspective Family SHADE is continuing its efforts to gain input from families about their support and service needs through Families Know Best. This voluntary parent advisory group provides families of children with special healthcare needs with an opportunity to share their concerns with Family SHADE organizations, policy makers and agencies statewide. Families will receive a gift card to thank them for their participation! also provides an opportunity for YOU, the organizations that serve these families, to ask families for their input on topics of concern to your organization. Family SHADE organizations may submit survey questions through Family SHADE staff. The Family SHADE Advisory Board will review the questions and choose several each month to include on the survey. Surveys will be sent to parents who have signed up to participate. The survey data will be compiled by staff and posted on the Family SHADE website at www.familyshade.org. Families Know Best Help spread the word to the families you serve! brochures are available in English and Spanish. Contact Annalisa Ekbladh at 302-831-0626 or [email protected] Families Know Best Page 3 Phone: 302-831-0626 Fax: 302-831-4690 E-mail: [email protected] Center for Disabilities Studies University of Delaware 461 Wyoming Road Newark, DE 19716 Family SHADE Family SHADE News at a Glance Check out these upcoming Family SHADE events! Networking Breakfast Family SHADE will be hosting a Networking Breakfast for organizations in New Castle County. Each Networking Breakfast will feature a local organization who serves children with special healthcare needs. Attendees will have the opportunity to share events and make new contacts. Stay tuned for time and location! Technical Assistance Workshop: FAMILY SUPPORT,CULTURE & DISABILITY Family SHADE members are invited to a free 2-day workshop on Nov. 7 & 8 2012. Our guest speaker, Susan Yuan, will use interactive exercises to demonstrate how cultural issues can impact our interactions with families. Family SHADE member organizations are invited to bring their staff. To register visit www.familyshade.org. Become a MEMBER of Family SHADE! Interested in becoming a member of Family SHADE? Organizations serving children with special healthcare needs, family members and self-advocates may become members of Family SHADE. Visit Family SHADE’s website at www.familyshade.org for more information about how you can become a member!