Programs and Projects
Family Voices Leadership in Family Professional Partnerships (LFPP)
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 underserved CYSHCN and their families. Previously referred to as the National Center for Family/Professional Partnerships (NCFPP), Family Voices is partnering with the SPAN Parent Advocacy Network to accomplish the activities of the LFPP.
Bright Futures Family Pocket Guide Revision Project (AAP)
Our popular Family Voices Bright Futures Family Pocket Guide: Raising Healthy infants, Children, and Adolescents, 2nd edition, was based on the 3rd edition of the AAP’s Bright Futures Guidelines for Health Supervision of Infants, Children and Adolescents. This short-term grant allowed us to update the Pocket Guide’s content to reflect the 4th edition of the Bright Futures Guidelines. We enlisted the help of a diverse group of family leaders and Family Voices staff to ensure family-friendliness in language and approach.
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.
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 knowledge needed to best help CYSHCN and their families. CYSHCNet is founded on partnerships with families at all levels, including oversight, research, training, and dissemination activities.
Collaborative Improvement and Innovation Network (CoIIN) to Advance Care for Children with Medical Complexity
Through the MCHB-funded CoIIN, awarded to the Center for Innovation in Social Work and Health at the Boston University School of Social Work, Family Voices offers expertise, technical assistance, resources, training, and other activities focused on family/
professional partnership, engagement, and leadership tailored to the specific needs of state teams focused on improving the quality of life for children with medical complexity through the development and implementation of innovative care and payment models.
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..
Family Engagement in Systems: Assessment and Toolkit
With funding from the Lucile Packard Foundation for Children’s Health (LPFCH), Family Voices developed an Issue Brief: Framework for Assessing Family Engagement in Systems Change. With additional funding from LPFCH, Family Voices developed and is now pilot testing a Family Engagement in Systems Assessment Tool (FESAT) & Family Engagement in Systems (FES)Toolkit to assess, guide, and improve meaningful family engagement in systems-level initiatives. A third round of funding will support meaningful use of the FESAT & FES Toolkit through general and targeted technical assistance, as well as an opportunity to participate in a learning collaborative.
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 Voices serves on the Cabinet Executive Team to contribute family expertise on transition issues to this National Center.
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.
Youth as Self Advocates (YASA)
Funded through private donations and small stipends from NCFPP, 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 partner for improvement.
Lifecourse Intervention Research Network
This new 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 will provide expertise to “work to meaningfully engage families in both agenda-setting and the design, implementation, and evaluation of interventions.”
NCFPP Supplement for Developing Family Leaders In The US Territories
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
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)
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)
Family Voices assists CAHMI (Child and Adolescent Health Measurement Initiative) to ensure families and CYSHCN are at the center of quality measurement and improvement through sharing stories from F2Fs on how they use data from national surveys, including the HRSA-funded National Survey of Children’s Health. In addition, Family Voices will help 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 Partnership
The MCHB-funded National MCH Workforce Development Center partners with the NCFPP where 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 will develop and deliver 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.
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.
Family Wisdom Learning Collaborative
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.
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.
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.
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.
United Healthcare Ongoing Partnership
United Healthcare is continuing its partnership with Family Voices to provide ongoing support for the Family Engagement Center staff and consultation on other initiatives to ensure families with children with special health care needs can easily navigate systems of care.