Strategic Framework 2024-2029

Introduction

In the United States, 18.8% of children and youth have special health care needs. The terminology for children and youth with special health care needs (CYSHCN) has evolved over the last 80 years. Health Resources and Services Administration (HRSA) defines children and youth with special health care needs as children who have, or are at increased risk for, chronic physical, developmental, behavioral, or emotional conditions and who also require health and related services of a type or amount beyond that required by children generally.

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Problem Statement

Children and youth with special health care needs and disabilities, and their families, face systemic barriers and biases that impede their ability to experience their best possible lives. Systems of care do not respond to their needs holistically or facilitate access to supports that enhance their quality of life.

Factors that undermine self-determination and result in the development of policies that do not make meaningful improvements in the lives of children and youth with special health care needs and disabilities include:

  • A failure to center the voices of children, youth, and families in decision making.
  • A lack of collaboration among people with lived experience, health care professionals, and policymakers.
  • A health care system that does not prioritize prevention, innovation, partnership, and overall quality of life.

Program Focus

With the inclusion of at-risk children and youth as part of the definition of CYSHCN, 100% of Family Voices programmatic work focuses on CYSHCN and children with disabilities. Our work to meet the needs of CYSHCN and their families includes:

  • Increasing access to resources and information
  • Connecting families to Family to Family Health Information Centers (F2Fs)
  • Building the capacity of family-serving organizations
  • Supporting and transforming systems that serve families (upstream work)
  • Training family leaders and engaging them in systems transformation
  • Creating opportunities for families to feel heard and connect to services and systems
  • Training professionals/partners to engage with families
  • Sharing effective models and strategies for engaging and supporting families

While we have the skills and desire to address the needs of CYSHCN, we have limited funding and staffing to meet the demands and needs of the CYSHCN population.

Partnerships

In addition to the need for stable financial support to carry out our mission, Family Voices needs effective, committed partners in order to live out our mission and reach our goals and vision. Partnerships with key stakeholders have helped Family Voices reach our outlined mission and vision over the years. Family Voices has worked with our partners to improve family engagement, partnerships, family-centered care, and health equity for CYSHCN. We have held long-standing partnerships with influential organizations such as the American Academy of Pediatrics and Maternal and Child Health Bureau. Furthermore, we have built partnerships with other entities including F2Fs, FVAOs, Title V agencies, health systems, hospitals, private funders, non-profit organizations, government funders, provider organizations, legislators, academic institutions, research networks, and policy-related entities.

A critical element of our partnerships has been the network of Family Voices’ Affiliate Organizations (AOs). The AO network is the bedrock of Family Voices, as they align with our mission and values, and they strengthen our reputation and reach. Historically, AOs received priority preference for funding opportunities from Family Voices. Additionally, Family Voices provided policy support to AOs to help build state advocacy for policy changes impacting CYSHCN. Family Voices is working to expand and enrich the special activities offered to AOs in order to increase their return on investment.

Policy

Federal policy and funding have a tremendous impact on the work of Family Voices and our ability to achieve our vision and mission. Many federal policies such as the Affordable Care Act, Medicaid Act, Olmsted, and Americans with Disabilities Act, support our work. However, the political landscape, political will, administration priorities, and political dynamics all affect the support for, and funding of, the work we carry out. Political dynamics and legislative policies pose a threat to the continuation of our efforts in the face of administrations with varying priorities on children’s health, mental health, and early childhood, which may not align with Family Voices’ mission. This reality impacts the individual, community, and systems-level services that CYSHCN receive across the country, including support from the Family-to-Family Health Information Centers (F2Fs) and Family Voices Affiliate Organizations.

Funding

Considering the challenges with the political landscape, Family Voices must consider other funding mechanisms, partnerships, and champions to carry our work forward and ensure our survival. Family Voices has longstanding relationships with the Maternal and Child Health Bureau (MCHB) but must consider the other federal funders that can be linked to our work. While we have intentionally expanded our funding partners and sources, we are still largely dependent on federal grants. With very little unrestricted operating funding, our funding is at continual risk due to the effects of changes in administration, legislative priorities, or realignment. In addition to federal partners, Family Voices is pursuing grants and partnerships with private funders to fill the gaps that exist due to political changes. Additionally, it is important to seek unrestricted funds to provide a stable infrastructure for Family Voices’ work.

Looking Ahead

Three key strategies that we must employ to reach our desired goals are building capacity, widening our circle of influence, and facilitating family-led transformation. Building the knowledge, skills, and resources of our staff, network, and partners to meet the needs of families and prioritize the expertise of families from minoritized communities is critical to meeting our goals over the next 5 years. As we work to build capacity in the field of maternal and child health, we must widen our circle of influence by expanding our partnerships, establishing an evidence base for our work so we can demonstrate the impact of family engagement, and diversifying our funding sources. Building capacity and widening our circle of influence will allow us to effectively facilitate family-led systems transformation. Our identified values, mission, and vision will allow us to effectively employ these three strategies, which will enable us to meet the following goals over the next 5 years.

Strategic Priorities: Five-Year Goals

Goal 1: Support youth, families and family-serving organizations to define and address systemic barriers and biases impacting the quality of life and well-being for CYSCHN and their families.

Goal 2: Advance equity by reducing systemic barriers including ableism, racism, and other forms of discrimination that improve quality of life and well-being for CYSHCN and their families.

Goal 3: Enable and promote innovation within Family Voices and our work to improve the lives of CYSHCN.

Goal 4: Secure diverse funding to enhance program work, policy efforts, and organizational evaluation.

Build Capacity: Support youth, families and family-serving organizations to define and address systemic barriers and biases impacting the quality of life and well-being for CYSCHN and their families. Advance equity by reducing systemic barriers including ableism, racism, and other forms of discrimination that improve quality of life and well-being for CYSHCN and their families. Enable and promote innovation within Family Voices and our work to improve the lives of CYSHCN. Secure diverse funding to enhance program work, policy efforts, and organizational evaluation.

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Our Vision

All children, youth, and families, especially those with special health care needs and disabilities, experience their best health and quality of life.

Our Mission

Family Voices is a family-led organization that transforms systems of care to work better for all children and youth, especially those with special health care needs or disabilities. By putting families at the forefront and centering their leadership and lived expertise, we build a culture that includes everyone and fosters equitable outcomes.

Donate by mail

To donate by mail, your check payable to Family Voices can be mailed to us at:
Family Voices
561 Virginia Rd.
Bldg. 4, Suite 300
Concord, MA 01742

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