Annual Report 2022
Our former Executive Director, Nora Wells, retired in March 2023 after nearly nine years in her role and more than 30 years dedicated to the work of family engagement. I am proud to step into her shoes and usher Family Voices into its next stage of growth and transformation. Family Voices remains committed to our mission of family engagement for children and youth with special health care needs. Our staff, who are experts in many areas of public health, health care transformation, and family engagement, are proud and privileged to keep the work of Family Voices moving forward, and our Board remains focused on strategy. Together, we are continuing to build the legacy of Family Voices. I am excited to lead Family Voices in this time of growth.
In the following pages, you will learn more about our work from 2022 – the projects, partnerships, and impact of our work on children and families nationwide. I hope you agree that Family Voices remains relevant and influential in the essential work of bringing the voices of those with lived experience to the forefront as we transform health care for children and youth. Thank you for being a friend and partner in the work we do.
Allysa Ware, PhD, MSW
About Family Voices: Who we are
Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities.
More than one-third of our staff and a majority of our Board members have lived experience as family members of CYSHCN, and more than one-third of our staff and Board members are from communities that have been under-served in health care.
Family Voices’ staff and Board, working together
A core team of six staff worked with Sputnik Moment to implement Salesforce at Family Voices. The implementation provided a user-friendly, central location to manage contact information, donation tracking, and project and activity tracking. All project staff members learned to enter and track project information in Salesforce.
Our staff completed the development of our organization’s diversity, equity, inclusion and belonging framework, which summarizes the values and commitment that guide our work on behalf of CYSHCN and their families.
Staff members and Board members began working together on several Board committees to better communicate and integrate our ideas and planning.
About Family Voices: What we do
- We promote partnership with families at all levels of health care—individual and policy decision-making levels—in order to improve health care services and policies for children.
- We connect a network of family organizations across the United States that provide support to families of CYSHCN.
- Our vision is that with families at the center of health care, all children and youth reach their full potential and health disparities are eliminated.
In 2022, we completed 18 grant-funded projects in different areas of child health, including early childhood, adolescent health, health equity, research, and policy.
- Family Voices partnered with the ACL Center for Dignity in Healthcare for People with Disabilities to identify and address healthcare inequities experienced by people with intellectual and developmental disabilities (I/DD) in medical settings.
- United Healthcare Group partnered with Family Voices to provide ongoing support for their Complex Health Solutions Initiative and ensure that families of children with special health care needs can easily navigate systems of care.
- We expanded our work in health equity for CYSHCN through four grant-funded projects, working to include and connect underserved families who represent the cultural, linguistic, and geographic diversity of the population.
- Family leaders within the Family Voices network created Families United to End Racism against CYSHCN and their Families (FamU) to address deep concerns with the systemic racial inequities faced by African American families and CYSHCN throughout our country.
- We extended our work to engage families in research, including the Children and Youth with Special Health Care Needs Research Network and the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (COIIN), both funded by HRSA MCHB.
- Family Voices was a partner with CYSHCNet in the development of a Family Partnerships Guide for engaging families in CYSHCN research, in a project funded by the Lucile Packard Foundation for Children’s Health.
- We continued our focus on family engagement at the systems level, including policy issues that affect the health of children and expanded the engagement of patients and families in telehealth policies in partnership with the National Academy for State Health Policy, in a project funded by PCORI.
New projects and proposals
Pediatrics Supporting Parents Phase IIB – New
At the request of the funders, we submitted a proposal for additional funding to engage families in every aspect of the initiative; contract is for $343,050 of which $200,000 will be subcontracted to participating F2Fs in up to 5 states.
AAP Bright Futures Family Pocket Guide – New
AAP requested that we take on a $25,000 4 month contract (through April 2022) to help disseminate information about the pocket guide.
AAP COVID Vaccine Project – New
AAP requested that we take on a $20,500 short term contract to host focus groups on family and youth experiences with COVID.
United Healthcare Group Consulting Project – New
UHG set up a new contract for $125,000 to continue our work with their special needs initiative team. $25,000 of the contract designates UGH as a lead sponsor of the Family Voices National Leadership Conference.
CYSHCNet – Proposal in process
We worked with University of Colorado School of Medicine on a second round proposal to HRSA. Family Voices will lead a Core Team to support family engagement in all aspects of the Research Network at $65,000/year for 5 years.
Family Engagement at the Systems Level (FESAT) – Proposal submitted
We submitted a proposal to LPFCH for further activities to promote the use of the FESAT tools, and we received and responded to reviewer comments. The funding decision is expected in mid-March 2023.
Highlights from 2022
The Family Voices leadership team and staff published a framework to address diversity, equity, inclusion and belonging (DEIB) in both our work and our workplace. Through conversations, collaboration and deep listening over a two-year period, we agreed on how we define, approach and work toward diversity, equity, inclusion and belonging. The outcomes of this work have been published on our website (familyvoices.org/DEIB) and shared with our network.
Family Voices was awarded new grants related to health equity in the areas of language access and health care transition.
- Language Access. Office of Minority Health (Health and Human Services) awarded Family Voices a grant for $375,000 per year for three years to address Promoting Equitable Access to Language Services for children and youth with special health care needs. This project will improve the quality and use of language access services in the healthcare setting for families with limited English proficiency. Family Voices and our partners at the American Academy of Pediatrics (AAP), National Association of Community Health Workers (NACHW) and Children’s Hospital Association (CHA) will work alongside families with lived experience to develop educational tools and strategies for families, community health workers, and healthcare providers to improve the way they use language-access services.
- Why is this work important? CYSHCN in homes with a primary language other than English are less likely to receive preventive care, have easy access to needed medical care, engage in shared decision making with their provider, and have a medical home or primary medical provider (Ghandour et al., 2022). Many care settings lack skilled medical interpreters (Flores, 2005), adequate cultural competency of health care providers (Chin et al., 2009), and have limited understanding of how to best serve families with limited heath literacy (Chin et al., 2009). It is uncommon for translated medication instructions to be provided in writing, especially in low-frequency languages (Sezgin et a., 2020). Public health information is often shared without language support or translations for individuals with non-English language preference, leading to inequitable and inadequate care (Cowley & Houston, 2003; Rao et al., 2006).
- Health Care Transition. WITH Foundation funded a $50,000 grant to extend the work of Family Voices’ project with Administration for Community Living (ACL) to develop a health care transition resource center for youth and young adults with intellectual and developmental disabilities. The grant from WITH Foundation will support the development of health care transition tools for youth with intellectual and developmental disabilities who have been involved in the criminal justice system.
- Why is this work important? Research indicates that ~33% of youth and young adults (Y/YA) who have been in detention facilities have an intellectual or developmental disability (ID/DD) (Quinn et al., 2005). While they are in detention, these youth face barriers to adequate health care, including inadequate health histories, lack of subspecialty care, and an insufficient number of providers (Perry & Morris, 2014). After release, they often don’t receive follow-up care (Society for Adolescent Medicine, 2000) due to lack of access to health insurance (Golzari & Kuo, 2013) and lack of primary care in their community (Feinstein et al., 1998). For these reasons, youth with ID/DD who have been in detention are at increased risk of poor health outcomes, including shorter life expectancy and worse social functioning (Massoglia, 2008). Appropriate health care transition can close these gaps and support better outcomes for these youth.
October 2022, Family Voices, the Center for Parent Information and Resources, and the Regional Parent TA Centers co-hosted a national family leadership conference with the theme of Moving Forward: Embracing Change and Transformation. The conference brought together a diverse community of family and youth leaders, representatives from Parent Centers, Family-to-Family Health Information Centers, Family Voices Affiliate Organizations, and other professional partners and stakeholders from across the country.
- Conference Sponsors included: Optum (Platinum Sponsor); Lucile Packard Foundation for Children’s Health, Elevance Health and The Annie Casey Foundation (Silver Sponsors); Children’s Hospital Association (Bronze Sponsor)
- Of the over 400 attendees, more than 95% agreed that the conference sessions were inspiring to them in their work or personal experience. More than 93% agreed that conference sessions increased their knowledge of relevant issues. Over 92% agreed that conference sessions gave them tools to do their work more effectively.
Building a Virtual Organization
- While our staff has always been spread across the country, the pandemic forced a permanent shift in how we do business. In 2022, Family Voices took the final steps in becoming a virtual organization. We no longer hold office space in New Mexico, and our location in Massachusetts office is primarily for storage of materials.
- Our staff uses technology to stay connected and engaged, and the organization provides laptops, monitors, and other accommodations for home offices.
Website resource page redesign
- The redesign of the Family Voices website is a collaborative project that involves our Digital Operations, Communications and Project teams. While much of the work will unfold as we develop our new strategic plan, you can expect to see some early changes to the content and structure of the site.
- The resource library section of the Family Voices website has a new look and new functionality. The library has free, downloadable resources on many health-related topics that are relevant both to professionals and to the families they serve.
- We are working to improve our family-facing resources to ensure that they are:
- Co-designed with families
- Evaluated by families for cultural responsiveness
- Often available in multiple languages and translated for meaning, rather than word for word
- Created with the needs of family-serving organizations in mind
- Focused on youth and family engagement
- Searchable by language, topic and type of resource
Family Engagement in Research Networks
- While family engagement in health care has long been discussed as necessary for health care transformation, family engagement in research is a newer concept. Families can inform the work of researchers and serve vital roles on research teams. Family Voices is highly engaged with multiple research networks, facilitating family engagement by training and supporting families and researchers on how to collaborate to develop research questions, study designs, and information that meet the needs of the scientific community and the families impacted by research.
Ways to support our mission
- Sign up for our mailing list to learn more about what is happening nationally for family-led organizations and how Family Voices is leading the way.
- Include Family Voices in your estate planning.
- Follow us on social media. We share information about issues that are important to children and youth with special health care needs on Facebook, Instagram, Twitter and LinkedIn.
- Download and share family resources from our website to support families you know and help them improve their ability to advocate for children’s health at the individual and systems levels.