Programs and Projects
Family Engagement and Leadership in Systems of Care (FELSC)
This project works with families, youth, and partner organizations to increase the impact of family and youth engagement and to support and develop the network of F2Fs.
Over the course of the grant, Family Voices will provide national leadership on family engagement to support youth and family leaders, Maternal and Child Health (MCH) programs, and other stakeholders that serve children and youth with special health care needs (CYSHCN). Our role, in partnership with SPAN, as the technical assistance (TA) provider for the Family-to-Family Health Information Centers (F2Fs) includes goals for increasing F2Fs’ capability to engage diverse, underserved CYSHCN and their families in direct patient care, organizational design, and governance along with increasing F2Fs’ capability to collect, monitor, and report on family engagement data.
2020 CARES Act Telehealth Award
With one year of project funding from HRSA, MCHB, Family Voices provided education and resources to family organizations in order to improve access to telehealth for families of CYSHCN. Family Voices provided mini-grants to 56 of the Family-to-Family Health Information Centers to conduct activities in their states, territories, and tribal communities, hosted a Telehealth Academy, organized Communities of Practice, and developed a Family-Centered Telemedicine curriculum and other resources in English and Spanish.
Visit familyvoices.org/telehealth for more information, resources, curriculum, and more.
AAP Influenza Immunization
Family Voices partners with the AAP to learn about vaccine hesitancy and other concerns and barriers that families of CYSHCN experience.
ACL Empowering Youth with Intellectual and Developmental Disabilities to Manage their Healthcare Transitions
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 ID/DD and their caregivers/families to manage HCTs with no reduction in quality of care or gaps in service. The project will create a youth-driven National Health Care Transition Resource Center (NHCTRC) and will help participants to direct their own transition from pediatric to adult models of care. Funded by Administration for Community Living (ACL).
Learn more about this project at familyvoices.org/healthcaretransition.
Advancing A Family-Centered Evidence-Base For Pediatric Home Health Care
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
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.
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.
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.
Children and Youth with Special Health Care Needs Research Network (CYSHCNet)
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
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
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.
Families United to End Racism Against CYSHCN and Families
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 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.
Got Transition Health Care Transition Measurement
Family Voices serves as advisors to the development of measures for assessing health care transition.
Lifecourse Intervention Research Network
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
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
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 Maternal and Child Health Data Resource Initiative (MCH DRI)
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
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.
Newborn Screening Family Education Program (Genetic Alliance)
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.
New York, Mid-Atlantic, Caribbean (NYMAC) Regional Genetic Network (RGN)
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.
PEALS: Promoting Equitable Access to Language Services for Families of CYSHCN
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
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.
United Healthcare Ongoing Partnership
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.
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.
Zero To Three (ZTT) Healthy Steps
ZTT Healthy steps is partnering with Family Voices to improve family engagement in their programs and to mentor families in advisory roles.
Vaccine Outreach Project
Select Past Projects
ACL Center For Dignity In Healthcare For People With Disabilities
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.
Bright Futures Family Pocket Guide Revision Project (AAP)
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 of Title V Programs to Engage Family Leaders
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.
Center for the Study of Social Policy (CSSP)
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
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.
Engaging Families To Improve the Quality and Outcomes of Care For Children With Special Health Care Needs: A Pediatric Planning Tool
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
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 Perspectives on Medicaid Managed Care
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
Health Plan and Member Education and Pilot Project
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.
National Institute For Children's Health Care Quality (NICHQ)
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 Resource Center for Supported Decision-Making (NRC-SDM) Partnership
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.
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 Pilot Project
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.