Photo of Dr. Allysa Ware, Executive Director of Family Voices. She is a Black woman with brown, curly hair and glasses. I hope June is off to a great start for you. Last month, we had the chance to send Nora Wells off with a celebration to honor all her contributions to Family Voices over the past 30 years. As we step into June and the rest of summer, we are working hard on new grants to support your work and improve access to services and health outcomes for children and youth with special health care needs and disabilities. We are hiring new staff for upcoming grant-funded projects. Additionally, we are working on our strategic plan, which is due to be completed in late fall. As we move through our strategic planning process, you can expect to hear from me and our staff, and we will invite your input along the way.

I am excited to share a few initiatives that we are working on at Family Voices:

Family Engagement and Leadership in Systems Change (FELSC)

The FELSC grant began officially on June 1. This grant, similar to LFPP, includes technical assistance to the F2Fs, but there are many differences this time around.

I am excited to partner with two dynamic organizations, SPAN and the National Institute for Children’s Health Quality (NICHQ), to implement this project. As you probably know already, Family Voices and SPAN are co-leading the TA to F2Fs to help improve data collection, outreach, and a focus on equity, as the grant requires. Later in the grant period, NICHQ, a national organization with expertise in maternal, infant and child health outcomes, will co-lead a Learning Collaborative with MCHB-funded entities such as Title V and MIECHV programs. This Learning Collaborative will include interdisciplinary teams that work to address the gaps in family engagement nationwide.

Another aspect of this project that excites me most is the broad partnership among multiple organizations that serve children with special health care needs and their families. We are convening Youth Engagement and Family Engagement Task Forces to complete an environmental scan on youth and family engagement, which will inform our work. These groups will comprise family and youth leaders from across the country that work with organizations such as Hands and Voices, Youth Move, Autism Self-Advocacy Network, Youth as Self-Advocates (YASA), Lend Family Network, Genetic Alliance, PFCC Partners, and CPIR.

Through the environmental scan, a Family Leadership Academy, and a Diversity, Equity, Inclusion and Accessibility Academy, we have a great opportunity with this new grant to change the landscape of family engagement and ensure that the work we do leads to equitable health outcomes for children and youth with special health care needs and disabilities. I am looking forward to collaborating with you in these efforts.

Support for the Unwinding

Family Voices was awarded funding from Lucile Packard Foundation for Children’s Health to support state-level work in educating families about the public health emergency unwinding. This funding will provide support to F2Fs and FVAOs to provide family education and support around the public health emergency unwinding to help meet the needs of your local communities as they navigate this complex shift in Medicaid policy.

Data Resources to Help You Succeed

We are thrilled to continue our long-standing relationship with CAHMI over the next five years. Through a new grant-funded project, CAHMI will provide training and guidance on utilizing the Data Resource Center to access and use data to support your programmatic and advocacy efforts. This can be especially important as the funding cycle for F2Fs comes up for renewal. The data from the Data Resource Center will help you to make the case for the value of the work you do at the state and local levels. Stay tuned for more information about this project and how you can connect to the Data Resource Center.

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Our Vision

With families at the center of health care, all children and youth reach their full potential and health disparities are eliminated.

Our Mission

Family Voices is a national organization and grassroots network of families and friends of children and youth with special health care needs and disabilities that promotes partnership with families—including those of cultural, linguistic and geographic diversity—in order to improve health care services and policies for children.

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