Programs and Projects
Current Projects
Select a category to see projects.
Capacity Building for Family-Led Organizations and Leadership Development for Youth & Families
Family Engagement and Leadership in Systems of Care (FELSC)
Family Voices provides national leadership in family engagement, supporting youth and family leaders, Maternal and Child Health (MCH) programs, and other stakeholders who serve children and youth with special health care needs (CYSHCN) and their families. In partnership with SPAN, we serve as the technical assistance (TA) provider for the Family-to-Family Health Information Centers (F2Fs) network. Our work focuses on increasing F2Fs’ capacity to engage diverse and underserved CYSHCN and their families in direct patient care, organizational design, and governance, as well as strengthening their ability to collect, monitor, and report family engagement data.
Project Director: Suzanne Farris
Funder: Health Resources and Services Administration (HRSA)
Timeframe: June 2023 – May 2028
Key Partners: SPAN Parent Advocacy Network, Youth as Self Advocates (YASA), Kelley Analytics, CapitolWorks
EmpowerHer Spectrum
This project extends the work initiated in “Advancing the Quality of Health Care Transition for Black Autistic Adolescent Girls,” funded by the WITH Foundation in 2023. For this iteration of the work, Family Voices is developing, training, and sustaining a community of Black autistic adolescent girls and women so they can participate in research and advocacy initiatives related to autism, health care, and the transition to adult care. A key component is the creation of a sustainable online community where participants can access resources, receive updates, and engage in meaningful engagement opportunities. The project emphasizes amplifying the voices and lived experiences of Black autistic girls to inform more equitable and effective care transitions.
Project Directors: Nikki Montgomery, Roseani Sánchez
Funder: WITH Foundation
Timeframe: June 2025 –Dec 2027
New York School-Based Health Alliance (NYSBHA)
The New York School-Based Health Alliance, in partnership with Family Voices and ADK Health Solutions, is working to improve youth access to mental health services through telehealth and school-based health centers (SBHCs). Family Voices previously led a youth advisory board to identify strategies that schools and SBHCs can use to more effectively engage youth in accessing these services. Building on that work, Family Voices is now leading a parent and caregiver advisory board to better understand how they can support their children in learning about and accessing mental health services.
Project Director: Andrea Li
Funder: New York State Department of Health
Timeframe: January 2025 – September 2026
Key Partners: New York School-Based Health Alliance (NYSBHA), ADK Health Solutions, Apex Evaluation
Food Allergy Youth Leadership Team
The American Academy of Pediatrics (AAP), in partnership with Family Voices, is engaging high school youth to participate on a Youth Leadership Team (YLT) and serve as advisors and thought leaders on a project to strengthen food allergy management in schools and out-of-school time (OST) settings. Family Voices leads the YLT which is developing a resource that seeks to improve the capacity of pediatric health care providers in supporting youth with food allergy and other chronic conditions in schools and OST settings by sharing the youth perspective on effective communication, collaboration, and/or chronic condition management.
Project Director: Andrea Li
Funder: American Academy of Pediatrics
Timeframe: October 2025 – July 2026
Key Partner: American Academy of Pediatrics (AAP)
Lucile Packard Foundation for Children’s Health General Operating Support
This general operating grant provides flexible, multi-year funding to help Family Voices advance its strategic priorities including health equity, family leadership, research, training and technical assistance, and organizational capacity to better serve children and youth with special health care needs (CYSHCN) and their families. A major focus of the work is advancing family engagement as a core strategy, including expanding tools such as the Family Engagement in Systems Assessment (FESAT), and providing family engagement coaching and support to state and local partners. The grant also enables Family Voices to continue identifying and promoting policy and systems changes that improve care, access, and outcomes for CYSHCN.
Project Director: Nikki Montgomery
Funder: Lucile Packard Foundation for Children’s Health
Timeframe: October 2024 – September 2027
Youth As Self Advocates (YASA)
Funded through private donations and small stipends from the Family Voices LFPP project, YASA is a national, grassroots network created by youth with special health care needs and/or disabilities for youth. YASA shares information to help youth learn self-advocacy and leadership skills. YASA youth work within their states to voice their issues, and to partner for improvement.
Timeline: Ongoing
Capacity Building for System Partners
National Coordinating Center on Transition
The National Coordinating Center on Transition, led by the Association of Maternal & Child Health Programs (AMCHP), is focused on improving the transition from child- to adult-serving systems for youth with autism or epilepsy who have complex needs. The Center is developing and advancing national, state, and community frameworks, while providing leadership, training, technical assistance, evaluation, and resources to improve transition outcomes for these youth and their families. As part of that work, the Center supports 11 HRSA-funded demonstration projects that are testing innovative and scalable approaches to help youth successfully transition to adulthood. Family Voices contributes expertise in family engagement and helps ensure that youth and caregiver perspectives are centered, including through participation in an advisory council composed of at least 50% youth and family members.
Project Director: Suzanne Farris
Funder: Health Resources and Services Administration (HRSA)
Timeframe: July 2024 – August 2029
Key Partners: Association of Maternal & Child Health Programs (AMCHP), Child Trends, American Academy of Pediatrics (AAP)
Center for Maternal and Child Health Medicaid Partnerships (CMMP)
Family Voices is a national partner in CMMP, a five‑year national initiative led by Altarum and designed to strengthen collaboration among state Medicaid, CHIP, and Title V programs to improve outcomes for maternal and child health populations. The project provides training and technical assistance to help states align policies, financing strategies, and service delivery systems, with the goal of increasing care quality and access. CMMP supports states in identifying shared priorities, build cross‑agency partnerships, and implement innovative models that better coordinate care for children and families. Family Voices brings expertise in authentic family engagement so states can ensure that policies and system improvements reflect the lived experiences and needs of families.
Project Director: Andrea Li
Funder: Health Resources and Services Administration (HRSA)
Timeframe: September 2024 – September 2029
Key Partners: Altarum, Center for Health Care Strategies (CHCS), Association of Maternal & Child Health Programs (AMCHP)
AAP National Center Consortium
Family Voices contributes family engagement expertise to the American Academy of Pediatrics (AAP) National Center for a System of Services for Children and Youth with Special Health Care Needs (CYSHCN). The goal of the center is to advance and strengthen systems of care for CYSHCN, their families and caregivers at the community, state, and national levels. Family Voices supports the integration of meaningful family partnership across research, clinical practice, and policy development by providing technical assistance, training, and support to Title V programs and other partners.
Project Director: Dr. Allysa Ware
Funder: Health Resources and Services Administration (HRSA)
Timeframe: July 2023 – June 2028
Key Partners: American Academy of Pediatrics, National Alliance to Advance Adolescent Health, Boston University’s Center for Innovation in Social Work & Health
AcademyHealth Enhancing Systems of Care for Children with Medical Complexity Coordinating Center (ESC CC)
AcademyHealth, in partnership with Family Voices, Boston Children’s Hospital, the University of California San Francisco, Patient Advocate Foundation, and the American Academy of Pediatrics, is leading a Coordinating Center to support five Health Resources & Services Administration (HSRA)-funded demonstration sites to assist them in meeting their goals to implement, evaluate, and disseminate models of care that improve outcomes for Children with Medical Complexities (CMC) and their families and that lead to improvements in the family experience of care integration and total number of CMC served.
Project Director: Andrea Li
Funder: Health Resources and Services Administration (HRSA)
Timeframe: September 2022 – August 2027
Key Partners: AcademyHealth, Boston Children’s Hospital, the University of California San Francisco (UCSF), Patient Advocate Foundation, American Academy of Pediatrics (AAP)
Supporting Youth with IDD in Juvenile Justice Facilities
This project builds on earlier work supporting youth with intellectual and developmental disabilities (IDD) involved in juvenile justice. Its goal is to improve health care transition (HCT) for these youth as they move into adult care systems. The team is developing and piloting a structured HCT process tailored for juvenile justice facilities. The project will evaluate the pilot, refine the process based on findings, and produce and disseminate a scalable model and resources that can help improve continuity of care and outcomes for this population.
Project Director: Andrea Li
Funder: WITH Foundation
Timeframe: Fall 2025 – Spring 2027
Safe Babies
The Safe Babies program, led by ZERO TO THREE, is a national initiative designed to transform child welfare systems to better support the safety and well-being of infants, toddlers, and their families. It uses a team-based, multi-level approach grounded in early childhood development science to prevent maltreatment, reduce trauma, and keep families together whenever safely possible. The model brings together courts, child welfare agencies, and community partners to promote early intervention and provide coordinated, trauma-informed services and faster access to support for families with very young children. Family Voices helps to ensure that parent and caregiver perspectives are centered in the initiative, promoting family leadership and engagement in program design and implementation.
Project Director: Suzanne Farris
Funder: Health Resources and Services Administration (HRSA)
Timeframe: September 2022 – September 2027
Key Partner: ZERO TO THREE
Center for Transition to Adult Health Care for Youth with Disabilities
Family Voices leads this project, in partnership with Got Transition, SPAN NJ, University of Missouri Kansas City, and the Waisman Center, to empower youth and young adults ages 12-26 with intellectual Disabilities/Developmental Disabilities (ID/DD) and their caregivers/families to manage health care transitions (HCTs) with no reduction in quality of care or gaps in service. The project has created a youth-driven health care transition resource center that provides tools for youth and young adults with disabilities to direct their own transition from pediatric to adult models of care.
Project Director: Nikki Montgomery
Funder: Administration for Community Living (ACL)
Timeframe: September 2021 – August 2026
Key Partners: Got Transition, University of Missouri Kansas City, SPAN NJ, Waisman Center
Early Childhood Developmental Health Systems: Evidence to Impact Center
The Early Childhood Developmental Systems: Evidence to Impact project, led by ZERO TO THREE, is a national initiative focused on building stronger, more coordinated early childhood systems to improve the health and well-being of babies and toddlers. It supports states and communities in advancing integrated approaches to developmental promotion, screening, and intervention, particularly in high poverty communities where disparities in access and outcomes are greatest.
The project brings together partners across sectors (including health care, early education, child welfare, and social services) and providing technical assistance, data tools, and evidence-based strategies to strengthen systems and improve service delivery. Family Voices contributes its expertise in family engagement to ensure that systems-building efforts center the perspectives, leadership, and needs of families.
Project Director: Dr. Allysa Ware
Funder: Health Resources and Services Administration (HRSA)
Timeframe: September 2022 – September 2026
Key Partners: ZERO TO THREE, American Academy of Pediatrics (AAP), Help Me Grow, Center for the Study of Social Policy (CSSP), James Bell Associates, Thrive Center for Children, Families, and Communities at Georgetown University
LA County’s Empowering Patients, Providers, and Family Involvement in Children’s Medical Services Planning (EPIC)
The Empowering Patients, Providers, and Family Involvement in Children’s Medical Services Planning (EPIC) initiative aims to embed meaningful patient and family engagement across its Children’s Medical Services (CMS) programs. It focuses on integrating family voice as a core component of program design, implementation, and evaluation for CMS services for children and youth with special health care needs (CYSHCN). EPIC creates structured processes for recruiting and engaging Patient and Family Advisors (PFAs), ensuring that families have ongoing opportunities to inform care delivery, program design, and decision-making. The initiative also emphasizes building staff capacity through training and coaching to incorporate patient and family engagement into routine workflows and organizational practices.
Project Director: Roseani Sánchez
Funder: LA County Department of Public Health
Timeframe: May 2026 – September 2026
National Maternal Child Health Workforce Development Center
The National MCH Workforce Development Center supports Title V programs in building the skills, partnerships, and systems needed to improve outcomes for mothers, children, and families. Through training, coaching, and collaborative initiatives like the Learning Journey, the Center helps state teams address complex challenges and advance health system transformation. The project emphasizes cross-sector collaboration, leadership development, and equity-focused approaches to systems change. Family Voices contributes expertise in family engagement and ensures that family and community perspectives are integrated into all aspects of the work.
Project Director: Nikki Montgomery
Funder: Health Resources and Services Administration (HRSA)
Timeframe: September 2022 – August 2026
Key Partners: Association of Maternal & Child Health Programs (AMCHP), National Center for Education in Maternal and Child Health (NCEMCH), George Washington University, Georgia Health Policy Center, UIC School of Public Health, State University of New York Albany
Lucile Packard Foundation for Children’s Health General Operating Support
This general operating grant provides flexible, multi-year funding to help Family Voices advance its strategic priorities including health equity, family leadership, research, training and technical assistance, and organizational capacity to better serve children and youth with special health care needs (CYSHCN) and their families. A major focus of the work is advancing family engagement as a core strategy, including expanding tools such as the Family Engagement in Systems Assessment (FESAT), and providing family engagement coaching and support to state and local partners. The grant also enables Family Voices to continue identifying and promoting policy and systems changes that improve care, access, and outcomes for CYSHCN.
Project Director: Nikki Montgomery
Funder: Lucile Packard Foundation for Children’s Health
Timeframe: October 2024 – September 2027
Capacity Building for Research Partners
Hospital-to-Home Transitional Care (H2H-CYSHCN) Trial
UNC Health Children’s and Duke University School of Medicine, in partnership with Family Voices, are conducting a Patient-Centered Outcomes Research Institute (PCORI)-funded comparative study of transitional care interventions for children and youth with special health care needs (CYSHCN) as they move from hospital to home following hospitalization. This project examines how care coordination, communication between hospital and community providers, and family-centered supports can impact health outcomes, readmissions, and caregiver burden. Family Voices contributes lived experience expertise to ensure that family perspectives and priorities are integrated into study design, implementation, and interpretation of findings. The goal is to identify effective, scalable approaches to improve continuity of care and strengthen support for families during critical transitions from hospital to home.
Project Director: Roseani Sánchez
Funder: Patient-Centered Outcomes Research Institute (PCORI)
Timeframe: August 2024 – July 2028
Key Partner: UNC Health Children’s, Duke University School of Medicine
Life Course Translational Research Network (LC-TRN)
The Life Course Translational Research Network (LCT-RN) aims to bridge the gap between scientific knowledge and population health impact by applying new knowledge from life course research to long-standing public health problems through new types of partnership with families, communities, and other stakeholders. Family Voices provides expertise to various engagement activities within the network, most notably providing guidance to the LCT-RN Scholars Program, designed to support the next generation of researchers to use life course intervention research (LCIR) concepts, methods, and skills to promote health and well-being across the lifespan.
Project Director: Dr. Allysa Ware
Funder: UCLA and Lucile Packard Foundation for Children’s Health
Timeframe: September 2023 – August 2028
Key Partner: UCLA Center for Healthier Children, Families & Communities
Systems & Policy Research Network (SPRNetwork)
Family Voices leads family engagement activities in the Systems and Policy Research Network (formerly CYSHCNET). This multi-site research network of researchers, families, clinicians, and administrative and policy partners works together strategically to accelerate the generation and application of research and knowledge needed to best help children and youth with special health care needs (CYSHCN) and their families. All SPRNetwork researchers actively engage people with lived experience, such as patients, family members, and caregivers. Family Voices’ role in the network includes supporting family engagement in the research projects, leading the Lived Experience Advisory Committee, leading the communications and dissemination for the network, and supporting specific projects.
Project Director: Dr. Allysa Ware
Funders: Health Resources & Services Administration (HRSA), Lucile Packard Foundation for Children’s Health, National Institutes of Health (NIH), Agency for Healthcare Research and Quality, Patient-Centered Outcomes Research Institute (PCORI)
Timeframe: September 2022 – August 2027
Key Partners: Boston Children’s Hospital, University of Wisconsin School of Medicine and Public Health, University of Colorado at Denver, and other children’s hospitals from across the nation
NYU Science of Engagement (SoE)
The NYU Grossman School of Medicine, in partnership with Family Voices and three pediatric research networks (APA CORNET, PRIS, DBPNet), is conducting a study to co‑develop and test a toolkit of practices to enhance patient, family, and community engagement in pediatric research and how those strategies result in improved stakeholder engagement outcomes. Family Voices is part of the study team leading a Community Advisory Board that provides guidance on developing the toolkit and study processes.
Project Director: Andrea Li
Funder: Patient-Centered Outcomes Research Institute (PCORI)
Timeframe: August 2023 – December 2026
Key Partners: NYU Grossman School of Medicine, Academic Pediatric Association’s (APA) Continuity Research Network (CORNET), Pediatric Research in Inpatient Settings (PRIS) Network, Developmental-Behavioral Pediatrics Research Network (DBPNet)
Select Past Projects
AAP Influenza Immunization
2021
Family Voices partners with the AAP to learn about vaccine hesitancy and other concerns and barriers that families of CYSHCN experience.
ACL Center For Dignity In Healthcare For People With Disabilities
2019-2022
Family Voices partners with the Center for Dignity in Healthcare for People with Disabilities (CDHPD), funded by Administration for Community Living (ACL), to identify and address healthcare inequities experienced by people with intellectual and developmental disabilities (I/DD) in medical settings. Family Voices assisted with a gap analysis and serves in an advisory role to bring family perspective to the development of resources for healthcare professionals to use to support the needs of individuals with disabilities to improve access to evidenced-based medical protocols and decrease discriminatory practices.
Advancing A Family-Centered Evidence-Base For Pediatric Home Health Care
2021-2022
Family Voices partners with investigators from Lurie Children’s Hospital to understand how eligibility for home health services, opportunity for paid family caregiving, variation in home health provider scope-of-practice rules, and reimbursement rates impact pediatric home health care utilization by children with medical complexity.
AUCD Vaccine Outreach: Disability Community Initiative
2022-2023
The purpose of this project is to conduct local vaccine outreach activities in the disability community through the Family Voices national network of Family-to-Family Health Information Centers and Affiliated organizations. and to increase vaccination among people with disabilities across the lifespan, their family caregivers, and direct support providers (DSPs) for older adults and persons with disabilities.
Bright Futures Family Pocket Guide Revision Project (AAP)
2019
In partnership with AAP, Family Voices has recently completed the updating of this publication for families, built on two previous versions of these materials for families. To be available in downloadable form from the AAP and Family Voices websites in English and Spanish, June 2021.
Bright Futures Pediatric Implementation Project
Family Voices staff participated on the Expert Panels tasked with creating and organizing health promotion information used to create the Bright Futures Guidelines (3rd and 4th Editions). Family Voices used these Guidelines (3rd Edition) to develop the Bright Futures Family Pocket Guide (English and Spanish), as well as health and wellness website materials.
The project period is from May 2018 – April 2023.
Building Capacity in the African American ASD Community for Patient-Centered Outcomes Research
Through funding from PCORI, Family Voices will engage African American youth and families with and autism spectrum disorder (ASD) to increase engagement in ASD PCOR research by African Americans impacted by ASD and address the disparities in healthcare outcomes for African American children with ASD. This project will:
- Create a patient centered outcomes focused research community of African American families of children with ASD, African American self-advocates, and ASD researchers and practitioners from the Autism Care Network (ACNet) that is dedicated to the needs of the African American community and to improving the capacity to conduct PCOR/CER across the county.
- Create culturally responsive training materials for African American self-advocates with ASD, families of children with ASD, and ASD researchers and practitioners about conducting ASD PCOR/CER and partnering with African American self-advocates and families.
- Use the training materials to conduct skill-building leadership trainings for African American stakeholders.
- Provide training to build the capacity of researchers to partner with the African American ASD community.
- Develop research questions and a research agenda based on PCOR/CER principles and the needs of the African American ASD community and disseminate the lessons learned.
Learn more about the project at familyvoices.org/araprogram.
Find information on the project at pcori.org.
Building Capacity of Title V Programs to Engage Family Leaders
2018-2019
With funding from a MCHB cooperative agreement, AMCHP partners with Family Voices to build Title V capacity to engage family leaders in efforts to improve the health and well-being of all families. This includes developing a virtual training about family-centered care for the AMCHP Family Leader Cohort, creating an interactive presentation about engaging diverse families in the upcoming 5-year Title V MCH Services Block Grant Needs Assessment as part of the Federal-State Title V Partnership Meetings, and facilitating a 3-webinar mini learning session about strategies and resources to help Title V programs effectively engage families at the individual, policy, and policy-making levels. See the Framework for Assessing Family Engagement in Title V Programs presentation by Family Voices at the 2018 Federal-State Title V Partnership Meeting.
CDC Foundation
2021
Family Voices partners with the CDC Foundation to disseminate information and learn from families about the experiences of students receiving special education services during the COVID-19 pandemic and hear recommendations for returning to in person school for the 2021-2022 academic year.
Center for the Study of Social Policy (CSSP)
2018-2019
CSSP partnered with Family Voices on its Pediatrics Supporting Parents project, to improve social-emotional development of young children (0-3), promote the parent-child bond, and support parents’ mental health. Family Voices recruited and mentored diverse family leaders as advisors to the project to ensure the family voice was fully integrated into all phases of the project, from developing site visit design and family questionnaires, to analysis of findings, and writing recommendations for spreading innovation.
Child and Adolescent Health Measurement Initiative (CAHMI) Partnership
- Family Voices serves on the CAHMI Executive Committee
- National Maternal and Child Health Data Resource Initiative: Through this 5 year project, Family Voices will be working with other partners to outreach, market, educate, and communicate with families and professionals about the Data Resource Center (DRC). In addition to preparing and/or providing input on stories of how the resources and data available from the DRC through the National Survey of Children’s Health and other national surveys, Family Voices will help create training materials for how to use the DRC website (childhealthdata.org) effectively. Project period: May 1, 2018-April 30, 2023.
- Shared Care Planning for Children with Medical Complexity: In addition to serving in the Advisory Committee for this project, pending funding decisions, Family Voices will be providing input from diverse family members to help create a tool that builds on CAHMI’s Well Visit Planner tool (see below) to create a tool especially for families with children with special health care needs—especially those with medical complexity.
- Maternal and Child Health Measurement Research Network (MCH MRN): Family Voices participates as a member of this interdisciplinary, collaborative network of experts who represent the MCH lifespan and who are active in the measurement of health and wellbeing of MCH populations.
- Well Visit Planner: The Well Visit Planner is a tool for all children (including CSHCN) to help parents plan and prioritize well visit checkups for their children. Family Voices worked with diverse family leaders to provide input on materials to help promote the WVP, and created a media toolkit of handouts, how-to videos, newsletters, etc.
Children and Youth with Special Health Care Needs Family Partnership Guide
2020-2022
In partnership with CYSHCNet at the University of Colorado, Family Voices is working with a team of youth, family, and research partners on this Lucile Packard Foundation for Children’s Health funded project. The team is developing an e-book for training youth, family, and research partners on youth- and family-engaged research.
Children and Youth with Special Health Care Needs Research Network (CYSHCNet)
2017-2022
Family Voices leads family engagement activities in CYSHCNet, led by the University of Colorado at Denver, and funded by MCHB. This multi-site research network of committed researchers, families, clinicians, and administrative and policy partners work together strategically to accelerate the generation and application of research and knowledge needed to best help CYSHCN and their families. CYSHCNet promotes partnerships with families at all levels of research, including oversight, research, training, and dissemination activities.
Collaborative Improvement and Innovation Network (CoIIN) to Advance Care for Children with Medical Complexity
2017-2022
As a partner in this MCHB-funded CoIIN, led by the Center for Innovation in Social Work and Health at the Boston University School of Social Work, Family Voices provides expertise, technical assistance, resources, training, and other activities focused on family/ professional partnership, engagement, and leadership. We work with each state team on topics tailored to their specific needs focused on improving the quality of life for children with medical complexity through the development and implementation of innovative care and payment models.
Cycle of Engagement
2019-2021
Funded by CAHMI, this project focuses on creating tools to engage and empower families as full partners in ensuring quality care for their children, including CYSHCN. Family Voices engages families in the review of materials, especially those used for planning, prioritizing, and coordinating their children’s health care.
Engaging Families To Improve the Quality and Outcomes of Care For Children With Special Health Care Needs: A Pediatric Planning Tool
2018-2019
Funded by CAHMI through a grant from the Lucile Packard Foundation for Children’s Health, this project focuses on creating “tools to engage and empower families as full partners in ensuring quality care” for their CYSHCN, especially as a care coordination planning tool encompassing family life inside and outside the doctor’s office to effectively coordinate and prioritize care needs..
Ensuring Children’s Access To Care Through Medicaid During And Beyond COVID-19
2020-2021
Family Voices, as a partner to Manatt Health, helped convene and provide TA to state teams of AAP, Family Voices, and consumer advocate representatives in five states to ensure access to Medicaid and CHIP during the pandemic, access to health and related services, and identify strategies for sustaining the pediatric provider workforce. Later work included identifying Medicaid flexibilities put in place during the public health emergency that should be made permanent.
Family Engagement in Systems: Assessment and Toolkit
With funding from the Lucile Packard Foundation for Children’s Health (LPFCH), Family Voices created a Framework and Family Engagement in Systems Assessment Tools to plan, assess, and improve family engagement in systems change. This phase of the work focuses on dissemination and implementation of the tools.
Families United to End Racism Against CYSHCN and Families
2020-2021
Building on our focused discussions within the family leader network drop-in calls on racism, and based on the work of the Black Lives Matter movement, Family Voices uses unrestricted funds to run this project. Through Town Hall meetings and a toolkit of strategies, the project helps our network to learn about structural racism affecting black and brown children with special healthcare needs and empowers Family-to-Family health information centers and affiliate organizations to partner in their communities to dismantle racism against CYSHCN.
Family Perspectives on Medicaid Managed Care
2019
With funding from Anthem, Family Voices, in partnership with Parent to Parent USA, is hosting state focus groups for families of CYSHCN to understand perspectives about managed care for individuals with special health care needs/disabilities. The findings will be used to improve communication, educational materials, processes, and policies.
Family Wisdom Learning Collaborative
Got Transition Health Care Transition Measurement
2018-2021
Family Voices serves as advisors to the development of measures for assessing health care transition.
Health Plan and Member Education and Pilot Project
2019-2020
With continued funding from United Healthcare Services, Inc. (UHC), Families Voices is creating a compendium of resources based on the 12 webinars we previously provided for the UHC Family Engagement Center (FEC). We are also assisting UHC in facilitating a pilot project with at least 5 Family-to-Family Health Information Centers and/or Family Voices Affiliate Organizations to promote relationship building between the FEC staff, the F2F/FVAO, and families with UHC health plans in the chosen states.
IMPACT (Improving Maternal and child health Programs and policies so All Children Thrive) Project and Website
Funded through a grant from the Maternal Child Health Bureau, the IMPACT Project focused on maternal and child health policies and programs for the benefit of all children and youth, including those with special health care needs and/or disabilities and their families. This project:
- supports the principles of quality, accessible, affordable health care that is respectful of family and community culture;
- provides leadership on the promotion of health and wellness for all children and communication between families and their professional partners; and
- offers information to family organizations about maternal and child health policies and practices for all children and youth through “Bright Futures” materials, and related health and wellness resources.
Lifecourse Intervention Research Network
2018-2023
This MCHB-funded research network seeks to translate the “growing recognition…of the central role that prenatal and early life experiences and exposures play in the development of lifelong health” into the development and implementation of life course- informed interventions. Family Voices provides expertise to meaningfully engage families in both agenda-setting and the design, implementation, and evaluation of interventions.
Maternal And Child Health Measurement Research Network
2020-2023
Family Voices partners with Rutgers University on this national project to ensure existing measures are equitable across populations and that measures work to inform change and track progress, rather than exacerbate existing problems.
National Genetics Education and Family Support Center Partnership
2018-2021
This MCHB-funded national center works to improve family engagement for individuals and families who have, or at-risk of having, a genetic condition through support, education, resources, and linking activities. As a partner to the Center, Family Voices provides technical assistance, resources, and training for families affected by genetic conditions, and technical assistance, training and resources tailored to the individual needs of the seven Regional Genetics Networks.
National Institute For Children's Health Care Quality (NICHQ)
2018-2019
As part of the Pediatrics Supporting Parents initiative to improve the social/emotional development of young children (0-3), strengthen the parent-child bond, and support parents’ mental health, NICHQ is leading a pilot for pediatric practices to scale the innovative practices identified by the Center for the Study of Social Policy (CSSP). Family Voices, as a partner on this project, supports the engagement of family partners in the work, and is using key elements from its Framework to Assessment Family Engagement to create PDSA cycles and improve systems-level family engagement in primary care settings.
National Maternal and Child Health Data Resource Initiative (MCH DRI)
2018-2022
Family Voices assists CAHMI (Child and Adolescent Health Measurement Initiative) to ensure that families and CYSHCN are at the center of quality measurement and improvement. F2Fs share stories on how they use data from national surveys, including the HRSA-funded National Survey of Children’s Health. Family Voices will help to create a Master Training Program designed to increase data literacy and analytic capability for Title V and other MCH professionals.
National MCH Workforce Development Center
2017-2022
The MCHB-funded National MCH Workforce Development Center partners with Family Voices wherein Family Voices serves as a representative on the Family Engagement team and as a member of the Center’s System Integration team.
National Resource Center for Supported Decision-Making (NRC-SDM) Partnership
2014-2019
Family Voices, along with Parent-to-Parent USA, partners with Quality Trust for Individuals with Disabilities with funding from the Administration on Intellectual and Developmental Disabilities/Administration for Community Living (AIDD/ACL). The project supports the use of Supported Decision-Making for older adults and people with disabilities. Family Voices advises the project, conducts outreach to families, and shares resources to inform family leaders and professionals.
New York, Mid-Atlantic, Caribbean (NYMAC) Regional Genetic Network (RGN)
2020-2024
Partnership with NYMAC (MCHB funding) to engage, and collaborate, with stakeholders in Caribbean territories to understand the key barriers for referring providers and families to genetic services, and to design and develop a tailored Spanish language training curriculum for Puerto Rico. Additional support provided to produce a bibliography of the key genetics resources for families in Spanish, develop teams of families and providers in Puerto Rico and Virgin Islands and general assistance with NYMACs Spanish language efforts and F2F outreach, education and training.
Newborn Screening Family Education Program (Genetic Alliance)
2018-2023
This MCHB-funded Newborn Screening Family Education program develops and delivers educational programs about newborn screening, counseling, testing, follow-up, treatment, and specialty services to parents, families, patient advocates and support group members. As a partner, Family Voices participates on the Steering Committee, and Education and Training Workgroup; contributes to the development and dissemination of a survey as part of the needs assessment to guide the activities of this initiative, and disseminates materials to support education of families through the FV networks.
PEALS: Promoting Equitable Access to Language Services for Families of CYSHCN
2022-2025
This project’s goal is to 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 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.
Learn more at familyvoices.org/languageaccess
Pediatrics Supporting Parents Phase II
2021-2022
Family Voices is a partner on this national initiative to improve the early relational health of young children, funded by a team of foundations. We recruit, mentor, and engage families who are representative of the diversity of the country in the design of strength-based observations, measurement, technology platforms, and selection of pilot sites so the family voice is integrated into all aspects of the project.
Story Board
2019
As an outgrowth of our work with PCORI and the Family Wisdom project, Family Voices is working with the PaTH Clinical Data Research Network to encourage families to tell their experience with health and illness. By sharing stories with researchers, and potentially online, the Network is hoping to focus research on topics of importance to patients and families of CYSHCN.
United Healthcare Ongoing Partnership
2019-2022
United Healthcare Group partners with Family Voices to provide ongoing support for their Complex Health Solutions Initiative and consultation on other initiatives to ensure that families of children with special health care needs can easily navigate systems of care.
United Healthcare Pilot Project
2019-2020
United Healthcare is collaborating with Family Voices and Family Voices Affiliate Organizations/Family-to-Family Health Information Centers in Arizona, Illinois, Minnesota, Rhode Island, and Texas to explore innovative and enhanced supports for members whose children and youth have special health care needs.
Vaccine Outreach Project
2021
Zero To Three (ZTT) Healthy Steps
2021
ZTT Healthy steps is partnering with Family Voices to improve family engagement in their programs and to mentor families in advisory roles.
