Programs and Projects

Family Voices Leadership in Family Professional Partnerships (LFPP)

2019-2022

With funding from the Maternal and Child Health Bureau (MCHB), Family Voices provides technical assistance and education to F2Fs, Title V programs and other stakeholders; conducts data and policy analysis; and shares best practices and resources on family engagement with broad audiences. The goal is to enhance family engagement at all levels of healthcare, especially for diverse and medically unserved CYSHCN and their families. Family Voices partners with the SPAN Parent Advocacy Network to accomplish the activities of the LFPP.

Visit the LFPP site

2020 CARES Act Telehealth Award

2020-2021

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.

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.

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.

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.

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.

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.

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.

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 Engagement in Systems: Assessment and Toolkit

2017-2021

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.

Read the Issue Brief

Read more about this project

Assessing Family Engagement

Got Transition Health Care Transition Measurement

2018-2021

Family Voices serves as advisors to the development of measures for assessing health care transition.

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.

NCFPP Supplement for Developing Family Leaders In The US Territories

2016-2019

This MCHB-funded project supports expansion of engagement opportunities for families in the U.S. territories, particularly those affected by the Zika virus. Family Voices is working with multiple family groups and individuals, Title V, MCHB programs and agencies, and other professional partners in Puerto Rico, Virgin Islands, American Samoa, Guam and CNMI, as well as with key national MHCB partners. This funding represents an important step toward the goal of engaging families in their child’s health care and as partners in programs and policies.

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.

Read more about this project

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.

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.

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. 

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.

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.  

Guide to Family-Led Organizations

Youth as Self Advocates (YASA)

Ongoing

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

2021

ZTT Healthy steps is partnering with Family Voices to improve family engagement in their programs and to mentor families in advisory roles.

Select Past Projects

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

The purpose of the BFPI program is to improve health outcomes for the nation’s infants, children, and adolescents by increasing the quality of primary and preventive care with age-specific, evidence-driven clinical guidelines. Family Voices will be working with the American Academy of Pediatrics to help spread the word to families and providers about the Bright Futures Guidelines for Health Supervision of Infants, Children, and Adolescents, 4th Edition. Family Voices will be creating and providing family input from diverse family leaders on materials designed to promote the Bright Futures program. 

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

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.

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

Funded by MCHB and other sources, Family Voices assists CAHMI to ensure that families and CYSHCN are at the center of quality measurement and improvement. Family Voices has been working with CAHMI on a number of committees and projects:

  • 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.

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 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

Family Voices launched the Family Wisdom learning collaborative in November 2017, supported by funding from the Patient-Centered Outcomes Research Institute (PCORI). The learning collaborative builds community partnerships and increases capacity for community-based research related to children and youth with special healthcare needs (CYSHCN) in diverse and underserved communities. The learning collaborative utilizes Project ECHO methods for continuing education and is structured around case-based learning. The project period extends through March 2019.

Learn more about the project here.

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

IMPACT was a past project of national Family Voices, and from that project, the IMPACT website was created (www.fv-impact.org). The project promoted a holistic, culturally relevant approach to health and wellness for all families and children including those with special healthcare needs and disabilities. Health is determined by many things. Social determinants of health play a big role in our health and wellbeing. But personal choices are also extremely important, and the role of families is powerful. Together with friends, families, communities, and health care providers, everyone has the chance for better health and well-being. Over time, small changes made by individuals and communities add up to great changes and improved health for not only ourselves, but our children and grandchildren.

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:

  1. supports the principles of quality, accessible, affordable health care that is respectful of family and community culture;
  2. provides leadership on the promotion of health and wellness for all children and communication between families and their professional partners; and
  3. 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)

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 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.

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 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.