Goal 1: Support youth, families and family-serving organizations to define and address systemic barriers and biases impacting the quality of life and well-being for CYSCHN and their families.
Objective 1A: Strengthen the knowledge, skills, and abilities of staff to effectively engage in national initiatives
- Staff professional development: We trained staff on a new Policy Decision Standard Operating Procedure (SOP) to guide our decision-making process when reviewing supporting comment letters, legislation, and other policy materials. The training included an overview of two new tools, a policy grading rubric and a policy decision tree, developed as part of that SOP.
- Partnership Development: We researched and compiled a list of conferences to propose sessions to, in order to provide opportunities for program staff to refine their presentation skills and increase networking opportunities with partners and funders.
Objective 1B: Strengthen the knowledge, skills, and resources of the F2F and FVAO network to meet the needs of families
- Family Engagement and Leadership in Systems of Care (FELSC) TA and Support: We continued developing multiple program curricula focused on strengthening leadership and family engagement across maternal and child health systems. This included the Youth Leadership Development Program (designed for youth with disabilities ages 14–26 to build leadership, collaboration, and health advocacy skills) and the Family Leadership Development Program (designed for family members of children and youth with special health care needs and disabilities, aimed at advancing participants from personal advocacy to system-level leadership).
- Annual F2F Convening: Over 90 staff members representing nearly all F2Fs from across the nation participated in our annual virtual F2F convening. We explored the Science of Family Engagement and facilitated meaningful discussions on the four domains of family engagement. Across 16 different breakout conversations, participants were engaged and shared strategies and best practices to strengthen family engagement efforts.
- Non-Profit Management Certificate Program: F2F staff members had the opportunity to participate in a few sessions thus far from this certificate program. Participants learned about implementing grants, developing logic models and work plans, and focusing on human resources issues. Feedback has been excellent, with participants sharing that they are already actively using what they are learning.
- FESLC Advocacy: We worked closely with members of the Maternal Child Health Appropriations Alliance to schedule and attend meetings with federal legislators. Meetings were focused on funding maternal and child health programs, including reauthorizing the Family-to-Family Health Information Centers. We followed up the meetings with family leaders from the Family Voices Network to connect the dots between the overview of the program and state level impacts. In addition to this work, we engaged Brooke Lehmann to train the Family Voices Network through a Policy 101 webinar on how to engage, educate, and advocate their federal congressional members. We also helped members of the F2F network schedule meetings with legislators. Lastly, we continued to identify and recruit presenters and facilitators for our upcoming Julie Beckett Policy Academy. The first three sessions of content are being outlined and are under development. Recruitment for this Academy is expected to start in quarter four of this year.
Objective 1C: Strengthen the knowledge, skills, and abilities of the health care community to effectively engage families in systems transformation.
- Center for Maternal and Child Health Medicaid Partnerships (CMMP): Working with state Medicaid, Children’s Health Insurance Program (CHIP), and Title V programs to align and advance maternal and child health (MCH), we are finalizing preparations for a project convening next month, where cohort 1 states will gather in person to share accomplishments, lessons learned, and progress made over the past year.
- Academy Health HCDS: Family Voices, in partnership with AcademyHealth, continues to support five HRSA-funded demonstration sites in developing models of care that optimize the health and well-being for CMC and their families while also advancing health equity for these populations. Family Voices is preparing to facilitate a webinar in June titled, “Sustaining Meaningful Family Engagement: Lessons Learned and Lasting Impact.” The webinar will focus on the Family Engagement Systems Assessment Tool (FESAT) and how it has been utilized across organizations, agencies, and stakeholder groups to strengthen family engagement efforts.
- Hospital-to-Home Transitional Care Interventions for Children and Youth with Special Health Care Needs (PCORI DUKE): This project focuses on a comparative study of hospital-to-home transitional care interventions for children with special health care needs following hospitalization, compared with those without such needs. We provide TA to family leaders who lead the Community Advisory Board (CAB) and are developing a series of training sessions to prepare CAB members to review and interpret interim study data. The first training, “Toward Research Data Interpretation,” provided an overview of the types of research data being collected and their role in the study. Participants learned about current data collection activities, including surveys and intervention fidelity measures, as well as upcoming phases involving interviews and outcome data.
- AAP Center for CYSHCN: We completed a comprehensive scan of family engagement activities in five select Title V Block Grant reports to map how family engagement in Title V aligns with our Framework for Family Engagement. We also facilitated a virtual Café session in May with two presenting Title V programs to share partnership development strategies that help support family engagement in Title V programs.
- Center for Transition to Adult Health Care for Youth with Disabilities: In collaboration with a F2F partner, the project team developed and presented a national webinar on how families can empower youth to lead their transition to adult health care. Family Voices leadership met with ACL’s Commissioner and Deputy Commissioner on Disability to discuss future funding opportunities to advance the work of the Center for Transition to Adult Health Care for Youth with Disabilities.
- New York School-Based Health Alliance (NYSBHA): We continued working with the New York School-Based Health Alliance to improve how young people learn about and access mental health services through telehealth and school-based health centers (SBHCs). At the most recent Parent Advisory Board meeting, the group discussed what youth want parents and caregivers to understand when it comes to accessing mental health services. They also reviewed a tip sheet developed in collaboration with the Youth Advisory Board on how to talk with youth about telehealth and whether or not it was an effective resource.
Objective 1D: Strengthen the knowledge, skills, and abilities of youth and families to engage in community and systems transformation.
- Los Angeles County’s EPIC Program: We initiated work on a new project with the LA County Department of Health Services focused on implementing the EPIC (Engaging Parent and Family Advisors in Collaboration) Program. EPIC will create meaningful opportunities for families receiving health care services from LA County’s Children’s Medical Services (CMS) to partner with programs and staff in shaping services and decision-making processes. Key activities this month included developing the project workplan and implementation timeline, as well as outlining the staffing structure and role descriptions needed to support the program’s success. We also began designing the framework for the Parent and Family Network (PFN), which will serve as a platform for engaging and supporting family advisors across the system. In addition, we started planning a comprehensive training curriculum for CMS staff focused on effective family engagement practices, integrating family voices into decision-making, and building sustainable partnerships with families. The project will also include training and capacity-building opportunities for family advisors to strengthen their ability to navigate systems, contribute their expertise, and participate meaningfully in improving services and outcomes.
- AAP Food Allergy Youth Leadership: We continued supporting a Youth Leadership Team (YLT) with AAP to gather youth perspectives and help improve food allergy management in school and out-of-school-time (OST) settings. At our final meeting, the team reflected on their experiences and shared final updates on the individual projects they are completing within their local communities. Members discussed the impact of sharing their personal experiences with food allergies and highlighted the benefits of working as a group. We finished developing the “What to Know About Food Allergies in School and Out-of-School Settings” resource, which is currently under review by the American Academy of Pediatrics (AAP) and the Centers for Disease Control and Prevention (CDC).
- NYU Science of Engagement: As part of our work facilitating a monthly Community Advisory Board (CAB) meeting for the NYU PCORI Science of Engagement project, we are preparing to facilitate the Phase 2 orientation session with the selected research studies that will be implementing the research engagement strategies we developed with our CAB.
- Systems and Policy Research Network (SPRN): For the Emerging Investigators Program (a one-year, mentored, family-partnered research initiative), we completed a summary of the feedback and key themes gathered during listening sessions we held in March on the Four Domains of Engagement in Systems Research so we could gather perspectives and experiences related to meaningful family engagement in research. We distributed the document to participants for review to ensure their perspectives were accurately reflected. The insights collected will help inform future efforts to strengthen meaningful family engagement in systems research.
- Youth as Self Advocates (YASA): We continued to work on the reorganization of YASA. Based on internal discussions, the next iteration of YASA will follow the FELSC Youth Leadership Academy (slated to start this September), which will act as a prerequisite for joining YASA if Academy graduates choose to. Based on this new plan, YASA should be up and running in about a year, soon after the conclusion of the year-long Youth Leadership Academy.
Goal 2: Advance equity by reducing systemic barriers including ableism, racism, and other forms of discrimination that improve quality of life and well-being for CYSHCN and their families.
Objective 2A: Develop health equity objectives and apply health equity metrics across integrated program and policy initiatives.
- We developed a policy decision tree to align our policy activities and sign-ons with our strategy while mitigating organizational risk.
Objective 2B: Identify and close gaps in program outcomes for historically underserved and/or marginalized populations across Family Voices’ programs.
- WITH Autism: This project established a sustainable online community that offers training and shares engagement opportunities tailored to the needs of Black autistic girls and women to support them in research and advocacy related to autism, healthcare, and the transition to adult care. During this reporting period, we finalized preparations for the launch of our Community Leader Program. We successfully recruited eight young adults who will be trained to serve as community leaders and ambassadors, sharing information and resources related to autism, healthcare, and the transition to adult care. The training will be delivered over two Saturdays in June and is designed to build participants’ knowledge, leadership, and community outreach skills. To support their success, we developed a comprehensive training manual and an online platform containing topic-specific one-pagers, presentation materials, and educational resources. Participants will also receive guidance on planning and conducting outreach activities within their communities. In addition, a compensation guide has been created to clearly outline program expectations, reporting requirements, and the process for receiving stipends for their participation and outreach efforts.
- WITH Juvenile Justice: With funding from the WITH Foundation, we completed a draft of a health care transition plan for youth with intellectual and developmental disabilities (IDD) that will be implemented in two juvenile justice facilities. During this month’s Advisory Group meeting, we discussed the plan in detail and gathered feedback from the group to finalize our recruitment materials, including a recruitment flyer, application, and interview questions to support the selection of implementation sites. The Advisory Group is helping to disseminate these recruiting materials to support outreach and recruitment efforts. We have also finalized draft materials needed to begin Phase 2 of the project, including interview questions, survey questions, a progress report template, and a budget report template. These materials were informed by feedback and recommendations gathered during our previous Advisory Group meeting and are intended to support implementation planning, evaluation, and ongoing site engagement. The draft materials will be reviewed in further detail with the Advisory Group during the upcoming June meeting.
- Lucile Packard Operational Support – Language Access: As part of our Language Access Work Plan to guide the integration of equitable language access across our organization, we continued to support program staff with Spanish translation services, including for social media posts to expand accessibility and outreach. Policy-focused materials, including our Washington Post communication product, were translated into Spanish to continue our goal of improving accessibility to policy.
- Family Voices Language Access Committee: We met with the Language Access Committee to discuss strategies for sharing information with multilingual families. Conversations focused on identifying the most accessible and effective ways for families to receive information, as well as the main topics families are seeking support and resources on. As a result of these discussions, we will develop a tip sheet to share with the F2F network and will integrate the identified strategies into project activities and implementation efforts.
- American Association on Health and Disability: This project, in partnership with the American Association on Health and Disability (AAHD), focuses on making research findings more accessible and understandable to families by developing plain-language products. We reviewed four research articles and provided detailed feedback to improve the clarity and accessibility of the English-language materials, which will serve as the foundation for future Spanish translations. Special attention was given to ensuring content could be translated accurately while maintaining cultural relevance and accessibility across diverse communities and individuals with disabilities. Feedback also focused on simplifying technical language and improving the overall user experience for family audiences. These efforts support the project’s goal of creating accessible, culturally responsive resources that can be effectively disseminated to families and communities.
Objective 2C: Center and integrate the perspectives and experiences of families and family-led organizations in the design, management, evaluation, and decision-making of FV programs and operations
- Family Engagement in Systems Assessment Tool (FESAT): With support from the Lucile Packard Foundation for Children’s Health, Family Voices is working to enhance the Family Engagement in Systems Assessment Tool (FESAT). We have recruited FESAT coaches to participate in a virtual summit in July to gather additional feedback on FESAT changes that were made and to identify ways to support FESAT coaches through a learning community later this fall.
Objective 2D: Develop and implement anti-racist, anti-ableist, equity-focused data collection and reporting objectives and practices.
- In collaboration with BRG, our organizational evaluation contractor, we continue to work on data collection to demonstrate our impact on underserved populations.
Objective 2E: Expand partnerships with families, communities, organizations, and funders to advance equity and improve quality of life for CYSHCN and their families.
- Prepared multiple session submissions for the AUCD Conference’s call for submissions.
- Family Voices Policy Agenda: We held several listening sessions with the Family Voices Network to uplift our policy work and revise our policy priorities to meet the current needs of CYSCHN and their families. An updated and more focused policy agenda for the coming year is in progress. A survey to measure the impact of Family Voices’ policy work was disseminated to attendees of the policy listening sessions.
- Coalitions: Family Voices attended multiple coalition meetings to continue partnerships and collaborate to advance federal policy supporting CYSHCN and their families.
- Sign On Letters and Joint Statements: Family Voices opted to sign on to the following letters of support and joint statements:
- Disability and Aging Collaborative (DAC) and the Health and Long-Term Services and Supports Taskforces of the Consortium for Constituents with Disabilities (CCD) Letter Opposing Medicaid Cuts in Reconciliation: This letter to Congressional leadership, urging Congress to oppose any further cuts or harmful changes to Medicaid through any budget reconciliation or other legislation, specifically calls out impacts to people with disabilities, older adults, family caregivers, direct care workers, and other low-income individuals and families that depend on Medicaid.
- Maternal Child Health Appropriations Alliance (MCHAA) Appropriations Request Letter:This letter requests, at minimum, level funding for MCH programs including Title V Block Grant SPRANS, Healthy Start, CDC Safe Motherhood and Infant Health, Project LAUNCH, and SAMHSA IECMH.
- Fiscal Year 2027 (FY27) Appropriations Request for the Pediatric Device Consortia Grant Program at the FDA: The PDC Program provides grants to non-profit pediatric medical device consortia, which assist scientists and innovators, particularly small businesses, with technical and financial resources to improve the number of medical devices available to children. The letter asks for $7 million in FY27 appropriations for the program, which is the same amount requested in the FY26 letter.
- ZERO TO THREE FY27 Children Mental Health Appropriations Organizational Sign On Letter: This letter to House and Senate Appropriations leadership urges funding for the only two federal programs dedicated to addressing mental health in very young The letter also calls for report language directing to reinstate training and technical assistance to grantees, which SAMHSA discontinued last year.
- FY27 Pediatric Mental Health Care Access (PMHCA) Appropriations Request:The PMHCA program supports pediatric primary care practices with telehealth consultation by child mental health teams, thereby increasing access to mental health services for children and enhancing the capacity of pediatric primary care to screen, treat, and refer children with mental health concerns. The sign-on letter requests increased funding (the authorized amount is $31 million) for the PMHCA program in FY27 as supplemental funding provided in the American Rescue Plan Act and the Bipartisan Safer Communities Act was exhausted last year. The level funding amount of $13 million is insufficient to maintain existing programs, much less grow the programs or expand to new jurisdictions.
- A Call to Action for a Shared Strategy for 0-25 Thriving, Georgetown University, McCourt School of Public Policy: This call to action from the Georgetown University McCourt School of Public Policy, in partnership with the Thrive Center at Georgetown, seeks to develop a strategy that supports communities (including parents, teachers, youth leaders, mentors, pediatricians, coaches, librarians, elders, camp counselors, and faith leaders) to work together around developmental foundations for kids to thrive. The partnership is seeking to establish a shared North Star for thriving across the full 0–25 continuum.
- Food Research & Action Center (FRAC) Letter to Modernize and Fully Fund WIC:This letter urges members of Congress to (1) Fully fund WIC for FY27 so that every eligible person who applies for the program can receive the full evidence-based benefits and services, including maintaining the full cash value benefit for the purchase of fruits and vegetables; and (2) Make flexible service options (which allow for virtual certification and benefits issuance for WIC) permanent. Without congressional action, these essential modernizations that reduce barriers to WIC could expire as early as September 2026.
- National Respite Coalition National, State, and Local Organization Sign on Letter to Congress in support of FY 2027 Funding for Lifespan Respite Care Program and the National Family Caregiver Support Program: This letter from the National Respite Coalition requests (1) $20 million for the Lifespan Respite Care Program; and (2) “significant investments beyond current funding” for the Older Americans Act Title III-E, National Family Caregiver Support Program (NFSCP) and Older Americans Act Title VI-C, Native American Caregiver Support Services.
Goal 3: Enable and promote innovation within Family Voices and our work to improve the lives of CYSHCN.
Objective 3A: Develop and maintain clear and consistent operational and communications policies, procedures, and practices, that embody our DEIB values.
- Updated and implemented information-sharing tool to support staff onboarding processes.
Objective 3B: Produce materials that are accessible, culturally responsive, and available in multiple languages and modes.
- Provided staff education about the organizational language access plan.
- Lucile Packard Operational Support – Language Access: As part of our Language Access Work Plan to guide the integration of equitable language access across our organization, we continued to support program staff with Spanish translation services, including for social media posts to expand accessibility and outreach. Policy-focused materials, including our Washington Update communication product, were translated into Spanish to continue our goal of improving accessibility to policy.
- Family Voices Language Access Committee: We met with the Language Access Committee to discuss strategies for sharing information with multilingual families. Conversations focused on identifying the most accessible and effective ways for families to receive information, as well as the main topics families are seeking support and resources on. As a result of these discussions, we will develop a tip sheet to share with the F2F network and will integrate the identified strategies into project activities and implementation efforts.
- American Association on Health and Disability: This project, in partnership with the American Association on Health and Disability (AAHD), focuses on making research findings more accessible and understandable to families by developing plain-language products. We reviewed four research articles and provided detailed feedback to improve the clarity and accessibility of the English-language materials, which will serve as the foundation for future Spanish translations. Special attention was given to ensuring content could be translated accurately while maintaining cultural relevance and accessibility across diverse communities and individuals with disabilities. Feedback also focused on simplifying technical language and improving the overall user experience for family audiences. These efforts support the project’s goal of creating accessible, culturally responsive resources that can be effectively disseminated to families and communities.
Objective 3C: Establish structures, processes, and tools that incorporate innovation in the culture and operations of FV.
- Began updating backend processes for annual AO renewals to enhance internal tracking and reduce manual administrative work
- Cybersecurity: secured 1 year of KnowBe4 security (phishing) awareness training for staff to be implemented in the next quarter.
- Development of tools and automations in Monday.com to assist with tracking grants and projects.
Objective 3D: Improve employee engagement, experience, capacity, and well-being, especially during high-pressure periods.
- Implemented new ongoing staff meeting agenda items to facilitate internal communication, capacity, and knowledge sharing (project highlights and tech/tool tips)
Objective 3E: Strengthen evidence-building activities and expand access to and use of data to improve the design and delivery of FV programs.
- Continued implementation of our organizational evaluation plan with external evaluators, Bright Research Group, including analysis of Q1 project activity data tracking, refinement of data collection practices, and development of project activity data dashboards in Monday.com.
Objective 3F: Utilize the DEIB Framework to guide recruitment, hiring, advancement, and employee satisfaction.
- Onboarded Hannah Gears, our new Program Strategy Manager. Hannah brings more than a decade of experience in program and grants management in nonprofits, health care, and the federal government.
- Hired a temporary accounting manager to fill in for the accounting manager on maternity leave.
Objective 3G: Remain appropriately staffed with professionals trained in and accountable to transparent and inclusive organizational practices, policies, and procedures.
- Continued updates of employee handbook and operations manual.
Goal 4: Secure diverse funding to enhance program work, policy efforts, and organizational evaluation.
Objective 4A: Identify and apply for funding from diverse funding sources.
- We held a meeting with Administration for Community Living to identify potential future funding opportunities.
- CareQuest: We developed and submitted a letter of intent for a funding opportunity from CareQuest, a philanthropic funder focused on increasing oral health equity and care transformation. The project proposes working with our F2F network to build the capacity of oral health navigators for children and youth with special health care needs and disabilities
- Robert Wood Johnson Foundation (RWJF) HERA: We developed and submitted three separate letters of intent for the Robert Wood Jonhson Foundation “From Insight to Action: Health Equity Research that Meets This Moment” funding opportunity.
- We led one letter of intent, with the SPRNetwork as a research partner, focused on protecting children’s health-related home and community-based services amid Medicaid policy shifts.
- We partnered with NYU Langone on their letter of intent focused on tackling vaccine hesitancy.
- We partnered with Boston University on their letter of intent focused on advancing humanistic care for children with medical complexity.
- National TA Center on Family Engagement: We have finalized a concept paper to pitch to a consortium of funders to support the development, implementation, and evaluation of a national TA center for family engagement. This center would develop and compile scalable and evidence-based practices for family engagement across the spectrum of engagement, pilot TA and training offerings to the funders’ grantees for evaluation, create an open-access learning hub, and develop a fee-for-service TA and training model to ensure long-term sustainability of the center and Family Voices’ core work.
- Elevance – Advancing Patient Safety Prize: We partnered on a research proposal developed by NYU Langone to test an education-focused intervention that would be patient-centered to help parents and caregiver gain the skills to correctly dose pediatric over-the-counter pain medication to avoid dosing errors. Our proposal has advanced past the peer-to-peer review phase and was selected to now be evaluated by an expert panel.
Objective 4B: Build relationships with foundations to address the need for unrestricted funding to support lobbying and organizational evaluation.
- Identifying philanthropic funders to engage: We continue to research national funders that align with our work to engage through existing relationships and/or via introductions from Family Voices champions.
Objective 4C: Apply for and receive unrestricted grant funding to expand the infrastructure and evaluation capacity of Family Voices.
- Additional proposals: We are connecting with existing and new partners to develop additional proposals, including ones for the Patient Centered Outcomes Research Institute (PCORI) and for the Administration for Community Living (ACL).
Current Projects
Research and Implementation
| Project, Funder, and Timeline | Project Goal | Staff |
| AAHD All of Us
American Association on Health and Disability (AAHD) · February 2025 – June 2026 · $25,000 |
Co-develops plain language versions, Spanish translations, and ASL interpretations for the dissemination of AAHD’s All of Us research findings that are relevant to the disability community.
|
Roseani Sánchez, Nikki Montgomery |
| Children with Special Health Care Needs Research Network (CYSHCNet)
· University of Colorado/MCHB · September 2022 – August 2027 · $100,000 |
CYSHCNet (now Systems & Policy Research Network) brings academic researchers and lived experience partners together to study the health care system issues that matter most to CYSHCN and their families. | Andrea Li, Allysa Ware, Nikki Montgomery |
| Collaborative Long-term Study of Outcomes of COVID-19 in Kids (CLOCK)
· Rutgers University · May 2022 – April 2026 · $15,000 |
The CLOCK initiative studies how any delayed or lasting symptoms of COVID-19 affect children, teens, and young adults. | Andrea Li |
Integrated Systems
| Project, Funder, and Timeline | Project Goal | Staff |
| Altarum Center for Maternal and Child Health and Medicaid Partnerships
· Altarum/MCHB · October 2024 – September 2029 · $40,000 |
Family Voices is contracted to be a part of the Center for Maternal and Child Health and Medicaid Partnerships (CMMP), a new 5-year initiative with MCHB. | Andrea Li |
| American Academy of Pediatrics Blueprint National Center for a System of Services for Children with Special Health Care Needs (AAP)
· American Academy of Pediatrics/MCHB · July 1, 2023 – June 30, 2028 · $100,442 |
To advance the system of services, the NCC will develop an implementation roadmap based on the MCHB Blueprint for Change: Guiding Principles for CYSHCN that identifies actionable steps at the research, practice, and policy levels for sectors serving CYSHCN and their families across their lifespan. | Allysa Ware, Becky Burns,
|
| American Academy of Pediatrics Food Allergies (FA)
· American Academy of Pediatrics · October 2025 – July 2026 $24,555 |
Establishes a Youth Leadership Team (YLT) with AAP to gather youth perspectives and help improve food allergy management in school and out-of-school-time (OST) settings. | Andrea Li |
| Center for Transition to Adult Health Care for Youth with Disabilities
· Administration for Community Living (ACL) · September 2021 – August 2026 · $442,829 |
This project created the youth-driven Center for Transition to Adult Health Care for Youth with Disabilities, a national health care transition resource center for youth and young adults with ID/DD to direct their own transition from pediatric to adult models of care. | Nikki Montgomery, Tori Yepez |
| CYSHCN Center of Excellence
· Cornell University · September 2025 – September 2026 · $12,600 |
In collaboration with Weill Cornell Medicine, ACT (Assets Coming Together) for Youth is a NY Center of Excellence for Children and Youth with Special Health Care Needs, working directly with local health departments to help them connect families with care and navigate the health care system. | TBD |
| Early Childhood Developmental Health System (ECDHS)
· Zero To Three/MCHB · September 2022-August 2026 $100,000 |
Family Voices is working with the Early Childhood Evidence to Impact Center to improve developmental health outcomes, health equity, and family well-being for young children in communities with high levels of childhood poverty. | Tori Yepez, Nanfi Lubogo, Nikki Montgomery, Allysa Ware |
| Family Engagement and Leadership in Systems of Care
· MCHB · June 1, 2023 – May 31, 2028 · $600,000 |
Focus on partnership and training activities including an Environmental Scan to be led by a family work group and a youth work group, Learning Collaborative, DEIA Academy, Family and Youth Leadership Program, Project Advisory Committee, Dissemination Planning, and a Cultural Responsiveness Committee | Suzanne Farris, Roseani Sánchez, Andrea Li, Nikki Montgomery, Wesley Wei |
| Empowering Patients, Providers and Family Involvement in Children’s Medical Services Planning (EPIC)· LA County Department of Public Health · May 2026 – September 2026 · $100,000 |
This project ensures that families and caregivers play an active role in planning and decision-making for children’s medical services in LA County. Family Voices is providing implementation support to recruit, train, and engage families, providers, and staff interested in working together to enhance the quality and coordination of services for children with special and complex health care needs. | Roseani Sánchez |
| Lucile Packard Unrestricted Funding
· October 2024-September 2027 · $300,000 |
General operating support from Lucile Packard Foundation supports the enhancement of the Family Engagement in Systems Assessment Tools, organizational evaluation, policy and advocacy, and the development of a conceptual framework to elevate our work. | Ashlee Richey, Nikki Montgomery, Suzanne Farris |
| National Coordinating Center on Transition (NCCT)
· AMCHP/MCHB · September 2024 – August 2029 · $100,000 |
This project aims to develop and advance national, state, and local/community frameworks that support a successful transition from child to adult serving systems for youth with autism and/or epilepsy who have complex health and social needs and require a higher level of family support and coordination. | Suzanne Farris, Nikki Montgomery, Allysa Ware |
| National Maternal Child Health Workforce Development Center UNC/MCHB
· September 2023- August 2026 · $5,000 |
Family Voices partners with the Workforce Development Center to build the capacity of Title V programs to engage people with lived experience. | Nikki Montgomery |
| New York School-Based Health Association II
· NY Department of Health · November 2025 – June 2026 · $25,000 |
This project supports the development of a youth advisory group to inform on best practices for expanding telehealth in school-based health centers across New York. | Andrea Li |
| Pediatrics Supporting Parents (ZTT PSP FAN)
· Multiple Private Funders · January 2026 – June 2026 · $62,127
|
The PSP initiative is a collaborative effort that focuses on the unique opportunity that pediatric well-visits present for pediatricians and parents to partner, to promote, and to support children’s social emotional development (SED) and nurturing parent-child relationships. Family Voices works to ensure that the project is guided by the voices and needs of families. | Allysa Ware, Roseani Sánchez, Nikki Montgomery |
| Safe Babies Infant Toddler Court Project
· Zero To Three · April 2022-September 2027 · $12,334 |
This project ensures family engagement in the state programs and helps set up new programs in states with Infant Toddler Court projects. | Suzanne Farris |
| WITH Foundation Strategic Partnership for Health Care Transition
· WITH Foundation · July 2025-June 2027 · $400,000 |
This project extends previous work with the WITH Foundation to support successful transition to adult health care for Black girls and women and for youth with IDD in the juvenile justice system. | Nikki Montgomery, Roseani Sánchez, Andrea Li |
| Youth as Self-Advocates
· Family Voices self-funded · $30,000 |
Youth as Self Advocates (YASA) is a national advisory board of teen and young adult leaders with disabilities. | Suzanne Farris |
