Strategy Updates

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: Staff members participated in training to refresh them on the principles of our organizational Diversity, Equity, Inclusion and Belonging Framework. Ongoing training and discussion will be built into monthly staff calls.
• Programs staff professional development: We are finalizing our training program for staff to share our family engagement framework, develop and present national webinars and conference sessions, and foster partnerships with new stakeholders.

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 developed multiple program outlines focused on strengthening leadership and family engagement across maternal and child health systems. This included the Youth Leadership Development Curriculum, designed for youth with disabilities ages 14–26 to build leadership, collaboration, and health advocacy skills through 12 online sessions beginning in September, which received MCHB approval. We also developed the outline for a Family Leadership Development Program 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. This 12-session program is also expected to launch in September and is currently under review by MCHB. In addition, staff identified and cataloged 70 existing family engagement resources in English and Spanish (organized by domain, language, and accessibility) that will be uploaded to our website and widely shared with our networks.
• Family Voices Leadership Conference: The Family Voices Leadership Conference 2026, held virtually in April, featured a mix of keynote presentations, a plenary panel focused on policy, and over two dozen breakout sessions, all available with live Spanish interpretation and bilingual slides. The overarching theme of the conference was “Our Voices, Our Stories: Centering Children and Families in Systems of Care.” The sessions were designed for in-depth exploration of specific topics, with opportunities for networking and Q&A. Examples included sessions that focused on palliative care resources, pediatric-adult transition services, the science of engagement, addressing disparities in care for children with prenatal opioid exposure, and community partnership models, among many others. These sessions all had a central emphasis on centering family voices in shaping policies, programs, and systems of care. The conference also included two full-day pre-conference trainings for our networks (Serving on Groups and Leading by Convening), both of which were also conducted in Spanish. These pre-conference sessions were optimized for skill-building and peer exchange. For the daylong Serving on Groups pre-conference training, 22 network members participated in the English version of the training and 4 participated in the Spanish version. For the daylong Leading by Convening training, 24 network members participated in the English version of the training and 5 participated in the Spanish version. Other participants included staff from state health departments and national leaders in emergency planning services for CYSHCN. Fifty-seven percent of conference registrants were from F2Fs or AOs.

• Legislative Advocacy and Education: We continued to work with Brooke Lehmann to train the Family Voices Network on how to engage, educate, and advocate (as much as possible) their federal Congressional members. We also helped to schedule meetings with legislators. As part of that work, we presented a TA session on “Lobbying v. Education” to the Family Voices Network to help network members learn how to properly engage with policy makers in structured conversations or lobbying. We also developed a survey on Medicaid-funded caregiving (i.e. HCBS) that was shared with our network, Caring Across Generations’ network, and AAP’s network (Select responses were included in a letter to Congressional leaders to address the Administration’s comments on “fraud and abuse,” particularly within HCBS-type services. The letter is expected to be sent to Congress before May 2026.)

• In addition to this work, we created a final list of proposed speakers for the Julie Beckett Policy Academy. Recruitment and outreach will start in May 2026.

Objective 1C: Strengthen the knowledge, skills, and abilities of the health care community to effectively engage families in systems transformation.

• The Programs leadership team developed a 2026 plan for hosting webinars to inform Title V, public health, and health professionals on family engagement.
• 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 supported the review of applications for the next iteration of the State Technical Assistance Cohort (STAC), assessing that applicants clearly demonstrated interest in and readiness for family engagement efforts, and ensuring opportunities for Family Voices to provide targeted technical assistance.
• Early Childhood Developmental Health System (ECDHS) Evidence to Impact: Initiative partners include AAP, Zero to Three, and Help Me Grow, with a goal of strengthening statewide systems for comprehensive early childhood development promotion, screening, and intervention. We completed virtual site visits with the early childhood demonstration sites in Maui and Colorado as part of our work with the ECDHS project.
• Academy Health HCDS: We completed another round of FESAT rescoring with our demonstration sites in Florida, Austin, and San Antonio. Since the project is in year four of five, the focus now is on engaging with the Coordinating Center on sustainability-focused topics, including exploring non-monetary approaches to supporting family engagement, such as offering training opportunities and capacity-building resources for family partners.
• Hospital-to-Home Transitional Care Interventions for Children and Youth with Special Health Care Needs (PCORI DUKE): For this comparative study of hospital-to-home transitional care interventions for CYSHCN following hospitalization, compared with those without special health care needs, we reviewed the interview guide and presented the community advisory board with potential questions the research team could include in the feedback interviews to participating families sharing their experiences over time following hospital discharge.
• AAP Center for CYSHCN: We completed a preliminary scan of family engagement activities in Title V Block Grant reports to map how family engagement in Title V aligns with the Framework for Family Engagement. We also developed the agenda for an upcoming Café convening in May focused on partnership development to support family engagement.
• Center for Transition to Adult Health Care for Youth with Disabilities: We led a meeting of the National Health Care Transition Community of Practice, which includes youth and family leaders, policy makers, health care practitioners, and family organizations. Mental health of youth with disabilities was an important theme that emerged from the discussion.
• New York School-Based Health Alliance (NYSBHA): For this project focused on strengthening how young people learn about and access mental health services through telehealth and school-based health centers, we held our kickoff meeting and a second meeting with the Parent/Caregiver Advisory Board and also conducted a landscape analysis to assess knowledge and usage of school-based health centers and telehealth services. The advisory board is exploring the barriers and motivators parents experience when considering mental health services for their children through SBHCs and telehealth.

Objective 1D: Strengthen the knowledge, skills, and abilities of youth and families to engage in community and systems transformation.

• 2026 Family Voices Leadership Conference: More than 200 people attended the conference, which featured 30 sessions on youth and family leadership, health equity, policy, and health care transformation. We invited Board and Organizational Youth and Family Advisory Committee members to the 2026 Family Voices Leadership Conference.
• 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. Over a few meetings, we identified a specific resource they would like to create (a food allergy presentation accompanied by interview videos to be used as a training resource in schools) and supported small group work for youth to develop the main ideas to be included in the presentation.
• NYU Science of Engagement: As part of our work convening a Community Advisory Board meetings to review survey updates and finalize the survey format for submission to the IRB, we invited CAB members to provide quotes to include in the toolkit, to reinforce key concepts and elevate lived experience perspectives. We also shared updates on efforts to transition the toolkit to a new platform, using a training software instead of a traditional PDF format after concerns around usability of the PDF were brought up.
• Systems and Policy Research Network (SPRN): For the Emerging Investigators Program (a one-year, mentored, family-partnered research initiative), we presented on the Framework for Family Engagement and supported the facilitation of four listening sessions focused on the Four Domains of Family Engagement, where participants shared their perspectives on family partnership in research, reviewed the existing domains, and offered input on additional domains to consider.
• Caregiver Definition: Following over a month of listening sessions, we developed a definition of caregivers in partnership with youth and family leaders. The definition is more inclusive of caregivers of CYSHCN and is accompanied by recommendations for various levels of systems to improve policies for caregivers. Additional research into the next steps are being completed now. A work group of interested youth and family leaders will be set up to advance improvements to national caregiver policies.

 

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.

• Funding Equity Initiatives: We are seeking funding opportunities for health equity related initiatives, including advancing language access and inclusion of underrepresented family leaders in health care transformation work.

Objective 2B: Identify and close gaps in program outcomes for historically underserved and/or marginalized populations across Family Voices’ programs.

• WITH Autism: This project establishes 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. We are finalizing a training curriculum with the advisory committee, gathering their feedback on proposed discussion questions, facilitating strategies, and training activities to encourage deeper reflection and participation during the training sessions. We also created and launched the Community Program (including developing recruitment materials, program application, and selection criteria) and have received 10 applications thus far. The selection criteria were carefully developed to reflect the program’s goals and to help identify individuals who demonstrate interest, commitment, and potential to benefit from and contribute to the learning experience. We also worked to ensure that the recruitment materials were accessible and welcoming to individuals from diverse backgrounds and communities.
• WITH Juvenile Justice: We are leading an advisory group to develop and implement a health care transition process for youth with intellectual and developmental disabilities (IDD) in two juvenile justice facilities. Building on prior work, the project focuses on understanding the needs of youth with IDD in detention, creating tools to support youth-led health care transitions and decision-making, and developing educational resources for families and professionals. In a recent Advisory Group meeting, we discussed potential tools and resources to include in the health care transition plan, organized by audience in terms of youth, parents and families, and juvenile justice centers. The group also reviewed 1115 waivers and explored how this information could guide the selection of states and centers for recruitment, as well as the criteria to consider when identifying implementation sites. Application materials were finalized and distributed.
• 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 translated all Family Voices Conference materials in Spanish to support language access and broader participation. This included registrant communications, plenary and award ceremony content, presenter biographies, session descriptions, social media content, promotional videos, and other related materials. As part of the conference work, the Serving on Groups and Leading by Convening trainings were fully revised, redesigned, translated and culturally adapted to better meet the needs of Spanish-speaking participants. Both trainings were offered as pre-conference sessions in Spanish, providing Spanish-speaking participants with additional opportunities for learning, leadership development, and engagement prior to the start of the main conference activities.
• Policy and Language Access: We developed plain language materials on key health policy topics related to our strategic policy priorities. These included updated Medicaid briefs and Medicaid flash cards. Materials were translated into Spanish to continue our goal of improving accessibility to policy.

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 Voices Organizational Advisory Committee: Family Voices has an Organizational Advisory Committee composed of 10 youth and family leaders who help guide our work by providing strategic input on key organizational processes, priorities, and activities. For one of the recent meetings, we facilitated a listening session focused on developing a more inclusive definition of “caregiver,” or a similar term and we also facilitated a relationship-building activity designed to help participants get to know one another on a deeper level.
• 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). Over the past year, we conducted a survey with FESAT coaches, users, and individuals familiar with the tool to gather feedback on its usefulness and usability. The findings provided valuable insight into the strengths of the FESAT as well as opportunities for improvement. Family Voices is currently using this feedback to enhance the ways the FESAT can be utilized and survey results can be shared. These updates will be shared at an upcoming FESAT coach summit in July, to gather additional feedback on the 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.

• Data collection: We worked with BRG, our external evaluation consultant, to collect data on the first quarter of 2026 in alignment with our new data collection processes. The new processes are intended to help us illustrate the impact of our work both quantitatively and qualitatively.

Objective 2E: Expand partnerships with families, communities, organizations, and funders to advance equity and improve quality of life for CYSHCN and their families.

• Conference attendance: Forty-three percent of conference attendees for FVLC2026 were not from our network, which represents an expanded reach beyond the network. State Title V agencies, other MCH organizations, and other family and professional organizations accounted for this segment of attendees.
• Organizational Partnerships: We reengaged with the Patient Experience Policy Forum’s measurement group to contribute family perspectives to hospital experience survey changes. Our Director of Strategy and Communications was elected co-chair of the Academic Pediatric Association’s Disability and Complex Care Special Interest Group. Both of these partnerships have potential to connect us more deeply with policy work that impacts CYSHCN and families.

• 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:
  • CCD Letter on FY2027 Funding for the Assistive Technology

(AT) Act Program: Requests $42 million for the Assistive Technology Act Programs. Also requests Labor HHS remove the following language “provide $2,000,000 for competitive grants to support existing and new alternative financing programs that provide for the purchase of AT devices.” The $2 million would instead be allocated to the AT Act. Funding provided through the AT Act supports programs that ensure people with disabilities have access to and are able to acquire the assistive technology, devices, and services they need to live, work, and attend school in their communities. These services are available for persons with all types of disabilities, all ages, in all environments (education, employment, community living and information technology). While families and guardians are the primary beneficiaries of services for individuals with disabilities, AT Act programs provide a wide range of services and supports to other targeted individuals such as educators, employers, health care providers, rehabilitation providers, and technology experts, including web designers, procurement officials and AT manufacturers and vendors.

• CCD Letter on FY2027 Funding for the US Access Board:Requests $10.5 million, an increase of $500k, to fund the United States Access Board. Funding would strengthen enforcement of the Architectural Barriers Act of 1968. The U.S. Access Board is the only federal agency dedicated exclusively to advancing accessibility for people with disabilities. The Board’s mission is carried out through three primary functions:

• Developing accessibility guidelines and standards for the built environment, transportation systems, information and communication technology, and medical diagnostic equipment.
• Providing technical assistance and training on accessibility guidelines and standards to stakeholders.
• Enforcing the Architectural Barriers Act of 1968, which mandates that federally funded buildings and facilities be accessible to people with disabilities.
  • PPC Comment Letter on the 2027 Notice of Benefit and Payment Parameters (NBPP):Discusses the issues with the 2027 NBPP and the reasons it should not be passed. The 2027 NBPP would create new coverage products with sky-high deductible in excess of legal limits, which, according to the Department, consumers could be “locked into” for multiple years. It would authorize insurers to sell products where all doctors are out-of-network and consumers would be expected to bargain with providers for all services and prescriptions, or else face near-total exposure to a surprise medical bill. The Department would allow states to offload all marketplace enrollment responsibilities to private companies – even though these companies have been the source of consumer confusion and, in some cases, outright fraud. And it would try again to erect burdensome administrative barriers for consumers seeking to enroll in marketplace coverage — barriers that a federal court just last fall set aside. Many of the ideas offered in the NBPP are lacking in supporting detail and analysis. If finalized, these underdeveloped proposals will create confusion and uncertainty in insurance markets already navigating significant shifts in federal policy. The Department’s own best estimate is that the rule would cut marketplace enrollment by up to 2 million people while also raising premiums. These effects will hit the same people already facing massive cost increases due to the expiration of the enhanced marketplace premium tax credits. Simply put, the proposals would make coverage more complicated and less affordable.
  • SKG Comment Letter on the 2027 NBPP: Strongly recommends that CMS not finalize provisions in the final rule, including but not limited to:
• The expansions of catastrophic plans and increase in out-of-pocket limits for Bronze and Catastrophic plans.
• The expansion of red tape and paperwork to make it more difficult for eligible people to enroll.
• The proposal to reduce network adequacy standards and oversight and essential community provider (ECP) percent threshold requirements.
• Certification of non-network plans.
  • CCD FY2027 Appropriation for Critical Programs for People with Disabilities and Families: Requests adequate Fiscal Year 2027 funding for programs authorized by the Developmental Disabilities Assistance and Bill of Rights Act (DD Act), Assistive Technology Act, Autism CARES Act, the Lifespan Respite Care Act, and Kevin and Avonte’s Law, the National Family Caregiver Support Program and Parent Information Centers, and the Transition Programs for Students with Intellectual Disability (TPSID) Model Demonstrations, National Coordination Center and National Technical Assistance and Dissemination Center.
  • Maternal Mental Health Leadership Alliance (MMHLA) FY2027 Funding Request: Letter to the Congressional Chairs and Ranking Members of Senate and House Appropriations Committees requesting funding and provisions for two maternal mental health programs in the FY27 federal budget: $10 million for the National Maternal Mental Health Hotline, and $14.5 million for the Maternal Mental Health and Substance Use Disorder Program (MMHSUD; also called Perinatal Psychiatry Access Programs).
  • CCD Response to CMS Request for Information (RFI) on “CRUSH” Initiative: The comments focus on CMS’s questions about Medicaid and CHIP and explain the critical role that home and community-based services play, provide examples, and explain how procedures are already in place that provide effective mechanisms to prevent fraud with respect to immigration status.
  • PREEMIE Act Appropriations Coalition Letter: The letter requests $5.5 million in appropriations funding:
• $2 million for CDC research studies focused on preterm birth and its causes,
• $1.5 million to support the establishment of the newly authorized HHS interagency working group focused on preterm birth and infant mortality, and
• $2 million for the required National Academies of Sciences, Engineering, and Medicine (NASEM) study on premature birth that will include an assessment of the costs, impact of social factors, and gaps in public health programs, and make recommendations to prevent preterm birth.

The letter also asks Congress to include the following language:

• The Committee is encouraged by the enactment of the Prematurity Research Expansion and Education for Mothers who deliver Infants Early Act (PREEMIE) Reauthorization Act of 2025 as part of the Consolidated Appropriations Act, 2026, P.L. No: 119-75. This reauthorization continues Congress’s commitment to supporting innovative research studies on preterm birth and its causes. We request that the Secretary act in a timely manner to implement the new Department of Health and Human Services Interagency Working Group to coordinate on all federal activities and programs related to preterm birth, infant mortality, and other adverse birth outcomes, as directed, no later than 18 months after the date of enactment of PREEMIE. Furthermore, this Committee provides funding support for this working group and the National Academies of Sciences, Engineering, and Medicine (NASEM) preterm birth study and requests the Secretary or his designate to provide an update within 60 days of enactment on the progress of the study and working group activities.

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.

• Policies and Procedures: Human Resources continued the updates of the Employee Handbook. The executive leadership team is reviewing the compensation policy and career path for the Programs area.

Objective 3B: Produce materials that are accessible, culturally responsive, and available in multiple languages and modes.

• Communications: We produced Family Voices’ first-ever printed annual report to share 2025 accomplishments and strategic successes. The document was shared with Board Development and Communications committee before broad dissemination. All Board members should be receiving the weekly e-newsletter called The Link. This publication is designed for Affiliate Organizations and contains information about the work we do and opportunities for engagement and learning.

• 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 translated all Family Voices Conference materials in Spanish to support language access and broader participation. This included registrant communications, plenary and award ceremony content, presenter biographies, session descriptions, social media content, promotional videos, and other related materials. As part of the conference work, the Serving on Groups and Leading by Convening trainings were fully revised, redesigned, translated and culturally adapted to better meet the needs of Spanish-speaking participants. Both trainings were offered as pre-conference sessions in Spanish, providing Spanish-speaking participants with additional opportunities for learning, leadership development, and engagement prior to the start of the main conference activities.

• Plain Language and Translated Materials: We developed plain language materials on key health policy topics, related to our strategic policy priorities. These included updated Medicaid briefs and Medicaid flash cards. Materials were also translated into Spanish to continue improving accessibility to policy.

Objective 3C: Establish structures, processes, and tools that incorporate innovation in the culture and operations of FV.

• Conference format: The format of the 2026 Family Voices Leadership Conference was a 3D virtual platform. Participants were excited about the unique experience. Of the attendees who completed the evaluation survey, 94% enjoyed the layout, and 89% said they would be satisfied with a similar platform for future virtual conferences.

Objective 3D: Improve employee engagement, experience, capacity, and well-being, especially during high-pressure periods.

• Team-building: During conference preparation, teams participated in team-building meetings and information sessions to ensure that all staff understood and felt prepared to support the conference.

Objective 3E: Strengthen evidence-building activities and expand access to and use of data to improve the design and delivery of FV programs.

• Data collection: We worked with BRG, our external evaluation consultant, to collect data on the first quarter of 2026 in alignment with our new data collection processes. The new processes are intended to help us illustrate the impact of our work both quantitatively and qualitatively.

Objective 3F: Utilize the DEIB Framework to guide recruitment, hiring, advancement, and employee satisfaction.

• Hiring process: Our interview process, designed to reduce bias, was used to interview for the Programs Strategy Manager position. The standardized compensation policy was used to set the salary for that position.

Objective 3G: Remain appropriately staffed with professionals trained in and accountable to transparent and inclusive organizational practices, policies, and procedures.

• New staff: We hired a new Programs Strategy Manager, Hannah Gears, who will begin on May 4, 2026. We are also posting to hire an organizational

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.

• National TA Center on Family Engagement: We are finalizing 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.
• RWJF – Learning from Abroad to Reimagine Health Knowledge Systems for Equity and Wellbeing: We submitted a brief proposal to RWJF focused on generating family co-created Quality of Life (QoL) measures to improve health knowledge systems for children with complex health care needs. Existing QoL measures use narrow clinical parameters, are often ableist, and are misaligned with what families identify as central to well-being (including dignity, independence, care coordination, and community supports). By partnering with families across the U.S. and Australia, this project would expand an existing family-informed Australian QoL measure to include key determinants of well-being alongside family-valued reflective QoL outcomes.
• Elevance – Advancing 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.
• PCORI – Engagement Awards: We partnered on a proposal developed by Academy Health to build the capacity of a cohort of families, young adults, and front-line school staff to engage in research focused on improving school-based mental health for students with emotional and behavioral issues.
• Funder research: The development consultants we hired in March 2026 are helping us identify potential sources of unrestricted funding.

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.
• Funder research: The development consultants we hired in March 2026 are helping us draft a plan for outreach and relationship building with potential funders.

Objective 4C: Apply for and receive unrestricted grant funding to expand the infrastructure and evaluation capacity of Family Voices.

Current Projects

• Research and Implementation – Measuring and implementing meaningful and authentic family engagement in research
• Integrated Systems – Integrating and increasing family engagement throughout a child’s life and across multiple systems

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
Enhancing Systems of Care Coordinating Center & Supplement (AcademyHealth) ·        AcademyHealth/MCHB ·        September 2022 – August 2027; 2023 – 2025 (supplement) ·        $22,996	The Enhancing Systems of Care Coordinating Center supports five HRSA-funded Demonstration Sites as they implement evidence-informed care models for children with medical complexity (CMC) and their families. The supplemental grant aims to develop a policy toolkit to ensure sustainability for care models for CMC.	Andrea Li
Life Course Translational Research Network (LCTRN) ·        MCHB ·        October 2023 – November 2028 ·        $15,000	Applying the life course health development framework, the LCTRN supports researchers to identify opportunities for developing, implementing, and evaluating new approaches to optimize children’s health development trajectories.	Allysa Ware
New York University Science of Engagement Research Project (NYU SoE) ·        Patient-Centered Outcomes Research Institute (PCORI) ·        October 2023 – September 2026 ·        $113,062	This study aims to identify which specific strategies show promise for promoting successful engagement of underrepresented populations in pediatric patient-centered outcomes research, and to what extent a bundle of engagement strategies can improve stakeholder engagement outcomes and be feasibly integrated.	Allysa Ware

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
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