Family Voices

What Family Voices does

Family Voices is a national nonprofit organization founded in 1992 and headquartered in Concord, Massachusetts, that transforms systems of care for children and youth with special health care needs (CYSHCN) and disabilities. The organization operates with approximately 11 core staff plus a national network of consultants, and supports a delivery backbone of 43 Family Voices Affiliate Organizations (FVAOs) and 59 Family-to-Family Health Information Centers (F2Fs) across all 50 states, 5 U.S. territories, and 3 tribal nations. Its primary beneficiaries are the families of the 14 million CYSHCN in the United States—approximately 19.5% of children under 18—who require help navigating healthcare systems, insurance, eligibility for Title V and Medicaid services, and communication with providers. Less than one in seven CYSHCN currently receive care in a well-functioning system, defining the unmet need Family Voices is built to address.

The organization's product portfolio centers on training curricula, evidence-based frameworks, and assessment tools rather than commercial technology. Key offerings include the "My Language, My Care" online language access course (available in English, Spanish, Chinese, and ASL), the Center for Transition to Adult Health Care for Youth with Disabilities (ages 12–26), the Genetic Education Materials for School Success (GEMSS) toolkit, the Youth as Self Advocates (YASA) program, the Language Access Project with the American Academy of Pediatrics, the Family Voices United to End Racism (FamU) initiative, and proprietary assessment instruments (FESAT for systems-level engagement, FCCA for outpatient family-centered care). The Family Engagement Framework—covering context, information/power-sharing, and four domains (Commitment, Transparency, Representation, Impact)—is the organization's flagship methodology, applied to all training and technical assistance.

Family Voices generates revenue primarily through federal grants, most notably a $2,425,000 five-year contract from the Administration for Community Living awarded in 2021 and HRSA Maternal Child Health Bureau grants supporting the FELSC initiative through 2028, supplemented by individual and corporate donations through campaigns such as the Close the Gap Challenge and grants from foundations including the Lucile Packard Foundation, WITH Foundation, PCORI, and the Office of Minority Health. All services are delivered at no cost to families, with no fee-based offerings; the organization has no parent company, is not venture-backed, and is governed by a board comprising family members and professionals.

Name

Family Voices

Legal name

Family Voices, Inc.

Website

https://familyvoices.org

Company type

Private

Founded year

1992

Operating status

Operating

Headcount range

11–50 employees

Short description

Family Voices is a national nonprofit that transforms systems of care for children and youth with special health care needs, operating through a network of 43 affiliate organizations and 59 Family-to-Family Health Information Centers across all 50 states, territories, and tribal nations.

Ownership category

akta.pro rank

Product category

Family Health Advocacy and Special Needs Support Services

NAICS

Other Individual and Family Services (624190), Child and Youth Services (624110), Services for the Elderly and Persons with Disabilities (624120)

SIC

Services-Social Services (8300), Services-Health Services (8000)

akta.pro primary industry

Maternal, Child & Family Health Organizations (BPAGACAF)

akta.pro secondary industry

Family & Parenting Support Services (BPAGAEAC)

Keywords

• Family health advocacy
• Special healthcare needs
• Family engagement services
• Disability advocacy
• Healthcare navigation support

Headquarters

HQ city

Lexington

HQ country

United States

HQ region

North America

Offices2 records

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Federal Grants: Primary funding from federal grants including HRSA Maternal Child Health Bureau grants (Family Engagement and Leadership in Systems of Care grant through 2028), ACL funding for healthcare transition projects
2. Individual and Corporate Donations: Donations through Close the Gap Challenge campaign and general donation programs; Dr. David Nichols and Mayme Boyd match donations through Close the Gap campaign

Go-to-market motion1 record

Distribution channels4 records

Marketing channels7 records

Core offering

Family Voices is a family-led national nonprofit organization that transforms systems of care for children and youth with special health care needs (CYSHCN) and disabilities. It delivers training, technical assistance, evidence-based frameworks, and resources through a nationwide network of 43 Family Voices Affiliate Organizations (FVAOs) and 59 Family-to-Family Health Information Centers (F2Fs) across all 50 states, 5 U.S. territories, and 3 tribal nations. The organization funds programs such as the Center for Transition to Adult Health Care, language access training, genetics education, and policy advocacy.

Product overview

Family Voices is a family-led nonprofit organization that operates as a national network and resource hub rather than a unified software product. The organization provides a portfolio of programs and services centered on transforming healthcare systems for children and youth with special health care needs (CYSHCN). Key offerings include the "My Language, My Care" language access training curriculum, the "Center for Transition to Adult Health Care for Youth with Disabilities" resource center, and the "Genetic Education Materials for School Success (GEMSS)" toolkit. The organization also offers evidence-based assessment tools including the Family Engagement in Systems Assessment Tool (FESAT) and Family-Centered Care Assessment Tool (FCCA), alongside its Youth as Self Advocates (YASA) youth leadership program. Family Voices maintains extensive networks through Family-to-Family Health Information Centers (F2Fs) in all 50 states and territories and Family Voices Affiliate Organizations (FVAOs), supported by its Family Engagement Framework methodology. Additional initiatives include the Language Access Project and FamU anti-racism program.

Differentiator

Problem solved

Functional benefit

Brands

• YASA: Youth as Self Advocates (YASA) is a national advisory board of teen and young adult leaders with disabilities who represent diverse races and cultures, working to educate society about issues concerning them.

Products and services

• My Language, My Care A free online language access course for families of children and youth with special health care needs, available in English, Spanish, Chinese, and ASL, designed to help families understand their rights and navigate language barriers in healthcare settings.
• Center for Transition to Adult Health Care for Youth with Disabilities A national health care transition resource center empowering youth and young adults with intellectual and developmental disabilities (ID/DD) ages 12-26 to manage their own transition from pediatric to adult healthcare models, in partnership with Got Transition, SPAN NJ, University of Missouri Kansas City, and the Waisman Center.
• Genetic Education Materials for School Success (GEMSS) A family-friendly resource providing condition-specific information and educational materials about genetic conditions to help families, professionals, healthcare providers, and schools encourage inclusion and participation.
• Family Engagement Framework An evidence-based framework for youth and family engagement that includes three main areas: context of engagement, continuum of engagement, and domains of engagement (commitment, transparency, representation, and impact), used to ensure consistent and quality family engagement across settings and systems.
• Family Engagement in Systems Assessment Tool (FESAT) A tool developed by Family Voices to plan, assess, and improve family engagement in policies, practices, quality improvement initiatives, and other systems-level initiatives, part of the Family Engagement in Systems (FES) Toolkit.
• Family-Centered Care Assessment Tool (FCCA) A tool developed by Family Voices for assessing the delivery of family-centered care in outpatient settings, available in versions for families (FCCA-F) to evaluate their care experiences.
• Youth as Self Advocates (YASA) A national advisory board of teen and young adult leaders with disabilities who represent diverse races and cultures, educating society about disability issues and helping health professionals and policymakers understand lived experiences.
• Family-to-Family Health Information Centers (F2Fs) Network A network of family-led organizations funded by the Maternal and Child Health Bureau that support families of children and youth with special health care needs (CYSHCN), staffed by families with firsthand experience providing guidance, resources, and navigation assistance.
• Family Voices Affiliate Organizations (FVAOs) Network A network of statewide, parent/family-led nonprofit organizations in all 50 states, 5 U.S. territories, and 3 tribal nations that work to advance Family Voices' mission and keep families at the center of children's healthcare.
• Language Access Project A project focused on improving quality and use of language access services in healthcare settings for families with limited English proficiency, developed in partnership with the American Academy of Pediatrics.
• Family Engagement and Leadership in Systems of Care (FELSC) A project providing technical assistance to Family-to-Family Health Information Centers, focused on increasing F2Fs' capability to engage CYSHCN and families in direct patient care, organizational design, and governance.

Quantifiable outcome

• 14 million CYSHCN served through network
• +1 more outcomes

Named customers3 records

Segments1 record

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature1 record

Partnerships

13 partnerships are on record, tiered core, flagship and major.

• Got TransitioncoreStrategic or Co-development PartnerPartnership for the Center for Transition to Adult Health Care for Youth with Disabilities project. Got Transition provides transition expertise and resources, with Family Voices leading the five-year ACL-funded project.
• SPAN NJcoreStrategic or Co-development PartnerPartner in the Center for Transition to Adult Health Care for Youth with Disabilities. SPAN provides advocacy and family engagement expertise.
• University of Missouri Kansas CitycoreStrategic or Co-development PartnerResearch and academic partner in the Center for Transition to Adult Health Care for Youth with Disabilities project.
• Waisman CentercoreStrategic or Co-development PartnerAcademic partner at University of Wisconsin-Madison providing expertise in intellectual and developmental disabilities for the healthcare transition project.
• American Academy of PediatricsflagshipStrategic or Co-development PartnerLong-standing partnership for improving family-centered care and child health outcomes. Collaboration on policy, training, and family engagement initiatives.
• SPAN Parent Advocacy NetworkcoreStrategic or Co-development PartnerCo-Director of Family Engagement and Leadership in Systems of Care project. Long-term partner in family advocacy and engagement.
• Consortium for Citizens with DisabilitiesflagshipStrategic or Co-development PartnerCoalition partner for policy advocacy on disability rights and children's health issues.
• The ArcflagshipStrategic or Co-development PartnerPartnership for policy advocacy and advocacy for people with intellectual and developmental disabilities.
• Autism SpeaksflagshipStrategic or Co-development PartnerCollaboration on autism-related advocacy and family support initiatives.
• American Academy of Pediatrics (Language Access Project)coreStrategic or Co-development PartnerPartnership to develop educational tools and strategies for families, community health workers, and health care providers to improve language access services in healthcare settings.
• Georgetown University Center for Children and FamiliesmajorStrategic or Co-development PartnerResearch partnership on Medicaid, CHIP, and child health policy affecting CYSHCN.
• New England Regional Genetics NetworkcoreStrategic or Co-development PartnerPartnership on GEMSS (Genetic Education Materials for School Success) providing family-friendly genetics resources.
• Mountain States Regional Genetics NetworkcoreStrategic or Co-development PartnerPartnership providing genetics education resources and summit library for families.

Scale indicators5 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• March of Dimes: Large maternal and child health nonprofit with federal policy advocacy, family programs, and research funding. Compares as a much larger peer in the maternal/child health space with overlapping funding sources and policy priorities.
• The Arc of the United States: National organization advocating for people with intellectual and developmental disabilities, with a state-chapter network. Highly comparable as a direct advocacy partner and ID/DD subject-matter peer within Family Voices' partner ecosystem.
• Autism Speaks: Large autism advocacy and family-support organization that is a named strategic partner of Family Voices. Comparable as a condition-specific family-led advocacy organization with similar federal-policy engagement.
• American Academy of Pediatrics (AAP): National professional association for pediatricians that is a flagship strategic partner of Family Voices. Functions as both a collaborator and a broader incumbent in the same CYSHCN policy and clinical space.

Direct peers

• National Organization for Rare Disorders (NORD): Federation of rare-disease patient and family organizations that does national advocacy, family support, and federally funded technical assistance. Directly comparable as a family-led nonprofit serving CYSHCN adjacent populations with similar federal-grant dependency.
• Parent to Parent USA: National network of state Parent to Parent programs providing peer support to families of children with disabilities. Closely comparable in mission and network model, though narrower in scope (peer support vs. systems change).
• Got Transition: National resource center on health care transition from pediatric to adult care. Direct peer and named co-lead on Family Voices' Center for Transition to Adult Health Care for Youth with Disabilities.
• SPAN Parent Advocacy Network: New Jersey parent advocacy network and a direct co-lead of Family Voices' FELSC project. Closely comparable in mission, family-led model, and F2F/FVAO-style operations.

Others

• Lucile Packard Foundation for Children's Health: Philanthropy focused on children with special health care needs and family engagement. Comparable as a model funder and systems-change partner in the same CYSHCN ecosystem.
• Health Resources and Services Administration (HRSA) Maternal and Child Health Bureau: Primary federal funder of family-led CYSHCN programs including F2Fs and Family Voices' FELSC grant. Comparable as the funding-counterparty and policy architect that shapes the broader mission area.

Market position

Strengths5 records

Weaknesses4 records

Competitive moat6 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xx.com/FamilyVoices
• Facebookfacebook.com/FVNational
• LinkedInlinkedin.com/company/family-voices-national

Revenue estimate

Valuation estimate

Number of profiles

Profiles20 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Family Voices