For the 2024 application year, the priorities for the Children and Youth with Special Health Care Needs (CYSHCN) are to strengthen systems of care to advance inclusivity and promote equitable and optimal outcomes for children and youth with special health care needs and engage individuals, families, and communities as partners in the development and implementation of programs and policies to create people-centered programs that promote health equity.

In 2024, all activities under each priority will be assessed annually and categorized using Levels of Public Participation (Inform, Consult, Involve, Collaborate, Empower) to identify the appropriate level of public participation and engagement for each activity, as found in Appendix H. Levels of Public Participation. The CYSHCN population domain will continue implementing Health Equity and Family Engagement activities. The Health Equity activities are identified in italics throughout the report and the Family Engagement 2024 activities for each population domain are highlighted in this narrative.

BWCH, through the CYSHCN Program, will adopt and implement the Blueprint for Change as a tool to drive partnerships, collaborations, and continued efforts to support the vision that all CYSHCN can enjoy a full life from childhood through adulthood and thrive in systems that support their families, their socials, health, and emotional needs. The CYSHCN Program will continue to assess which agencies across Arizona impact each of the four critical elements identified in the Blueprint for Change including 1) quality of life and well-being, 2) access to services, 3) financing of services, and 4) health equity.

To achieve these aims, CYSHCN Program will focus on strengthening systems of support for the transition to adulthood provided by community-based health services, utilizing the National Standards for Systems of Care for Children and Youth with Special Health Care Needs tool (Version 2.0), developed by the Association of Maternal and Child Health Programs (AMCHP) and the Lucile Packard Foundation, to inform strategies. As stated in the National Standards 2.0, “Children and Youth with Special Health Care Needs (CYSHCN) are a diverse group of children ranging from children with chronic conditions to children with autism to those with more medically complex health issues, to children with behavioral or emotional conditions.” BWCH, through the management of CYSHCN Program contracts and in partnership with MCH Family Advisors, will focus on providing enabling and direct services through contract deliverables and in collaboration with stakeholders to improve systems of care for families with CYSHCN. The CYSHCN Program will leverage existing partnerships to explore CYSHCN-centric curriculum and best practices to build capacity and training for non-medical home and community-based providers.

The work of the CYSHCN Program is focused on improving: transition to adult services; identification, screening, assessment, and referral; education and awareness; family and young adult engagement; inclusion; emergency preparedness; and community-based services and supports. Through these activities, the Arizona Title V Program will continue to support NPM 12: Transition (percent of adolescents with and without special health care needs, ages 12 through 17, who received services necessary to make transitions to adult health care). In 2024, the CYSHCN Program will collaborate and support efforts with the Transition Care Network to develop family, provider, and system capacity to improve the transition of CYSHCN to a more inclusive and comprehensive adult system of care.

The CYSHCN Program supports several efforts to increase the percentage of CYSHCN who receive services necessary to make the transition to all aspects of adult life, including adult health care, work, and independence, and to help families and health care providers to plan for the challenges of transitioning children to adulthood. The following highlights the strategies we plan to implement in 2024 to support the transition to adulthood.

In 2024, the University of Arizona Department of Pediatrics (UADP), Transition Policy in Pediatrics, previously called the ArizonaLEND Program, will continue to implement contract deliverables related to the utilization and adaptation of the Got Transition® modules to increase the number of practitioners in Arizona who have transition policies in practice. The project started in 2018 and the purpose of this project is threefold: 1) to evaluate the current proportion of practitioners in Arizona who have a formal transition policy; 2) to determine the impact of existing transition policies; and 3) to develop and initiate a transition implementation program to assist practitioners without policies to incorporate transition into regular practice. The work plan, evaluation plan, and data collection instruments were completed in 2019. In 2021 and 2022, online modules were developed and made accessible via the Thinkific platform to up to 10 practitioners, who were part of the initial process. The platform includes the ability to gather feedback and track practitioners’ progress during the 24-month timeframe for completion. Along with the platform development, UADP also received the necessary accreditation to provide maintenance of certification (MOC) credit to practitioners who complete the modules. In 2023, UADP modified the modules based on feedback from practitioners in the pilot, increased recruitment efforts, and moved the modules to a new, more user-friendly platform called D2L.

In 2024, the CYSHCN Program will continue to support the recruitment, enrollment, and maintenance of a minimum of 10 practitioners in completing the adapted Got Transition modules on the D2L platform. Practitioners will continue to receive MOC credit for their completion. The newly established contract cycle starting in 2023 also includes a Transition Quality Improvement Pilot Project as a subcomponent. The Transition Quality Improvement Pilot Project will build on the successes of the project established in 2018-2022 by allowing practices a shared learning opportunity to work together to create an efficient and sustainable approach to transfer youth and young adults from pediatric to adult care using the modules developed and adapted from Got Transition as a guide. Pediatric and Adult primary care practice teams are invited to submit joint applications with funding available for up to three teams (six practices in total) annually. Over the course of a year, practices will customize the content and process for transfer from the pediatric practice and integration into the adult practice. This process will be tested with a handful of youth/young adults, with complex medical needs, who will actually transfer during the 12-15 month project. In 2024, the goal is to identify, recruit, and establish a memorandum of understanding for a facilitator to support the QI Project.

In 2024, the CYSHCN Program will continue to engage in the work being conducted under the Adolescent Champion Model (ACM), created by the University of Michigan Health System Adolescent Health Initiative, and being implemented in Arizona through a Title V-funded contract with the Arizona Family Health Partnership, to help guide physicians and other healthcare professionals in meaningful engagement with CYSHCN and their families. More information on the Adolescent Champion Model can be found in the Adolescent Health 2024 Application/Action Plan Narrative.

BWCH, through the CYSHCN Program, ensures that children with special health care needs and their families are considered in school and post-school transition plans. In 2024, the CYSHCN Program will continue to fund a portion of Arizona’s annual transition conference for youth and their families hosted by the Arizona Department of Education (ADE). The ADE IDEA Conference (formerly known as the Transition Conference) is a collaborative, cross-stakeholder professional development event aimed at providing meaningful and pertinent information needed in the transition-planning process for youth and young adults with disabilities. Session content is structured around three (3) areas: (1) strategies for enhancing youth success, (2) family involvement, and (3) interagency/community collaboration. Participants include state and local special education directors, education specialists, teachers/professors, school psychologists, youth and young adults with disabilities and/or family members, secure care education personnel, college and university disability resource services personnel, and adult service agency personnel. In 2024, the ADE IDEA Conference will be held in person and the CYSHCN Program will collaborate with ADE to offer scholarships to cover expenses associated with registration, lodging, and accommodations for CYSHCN and their family member or personal care assistant.

Identification, Screening, Assessment, and Referral will continue to be a primary focus area for the CYSHCN Program. In 2024, the CYSHCN Program staff and family advisors will continue to participate in statewide and local initiatives, workgroups, and collaborations to include and elevate system policies and guidelines that support CYSHCN. Continuing to collaborate with partners in this context ensures system partners continue to adapt and support policies and guidelines that are inclusive of CYSHCN.

The CYSHCN Program will continue to update and provide the Health Care Organizer (HCO) to assist families of CYSHCN in managing the complex and multiple sources of information, services, treatment, and medical and behavioral health providers. The HCO was adapted to an online format and is accessible in print form as requested. In 2024, the CYSHCN program will continue to support an electronically accessible HCO as well as share with partners and community members as requested.

The CYSHCN Program will continue to partner with and collaborate with several ADHS programs and other state agencies to support the identification, screening, assessment, and referral of CYSHCN to the care and services they need. The CYSHCN Program is continually evaluating the collaboration with the High-Risk Perinatal Program (HRPP) to ensure the referral process is leading to connections for families and young adults captured through this effort. Additionally, the CYSHCN Program will work with the Arizona Birth Defects Monitoring Program, housed within the Business Intelligence Office, and the ADHS Newborn Screening Program, housed in the Office of Newborn Screening (within the state laboratory), to provide appropriate information, resources, and service linkages to families of children identified as having a special health care need through newborn screening tests and hospital data and records (Arizona Birth Defects Monitoring Program).

In 2024, the Title V Program will continue to support some staff time within the Arizona Birth Defects Monitoring Program (ABDMP), housed within ADHS’ Business Intelligence Office. AMBDP will collect and analyze information on children with reportable birth defects diagnosed within the first year of life and coordinate with other Title V-funded efforts to work on birth defects prevention efforts (e.g., Preconception Health Alliance, PowerMeA2Z) and provide families with referrals to appropriate services (e.g., through home visiting programs) to ensure children and families affected by birth defects have access to appropriate care. More information about the ABDMP can be found in the Infant/Perinatal Health 2024 Application/Action Plan Narrative.

The CYSHCN Program contracts with Northern Arizona University (NAU) Institute for Human Development (IHD) to pilot The Pyramid Model for Program-Wide Positive Behavior Supports Program. The Pyramid Model is a framework of evidence-based practices used to promote healthy social-emotional development in young children by implementing a tiered model of supports and interventions sustained by effective staff and policies. NAU IHD has been able to establish a Regional Leadership Team, which is comprised of stakeholders from the community and state who meet regularly to guide the project’s goals and activities. In addition to the Regional Leadership Team, each site developed a site leadership team. The site leadership teams consist of classroom staff, administrators, and parents. Each leadership site team’s purpose is to support the implementation of the Pyramid Model and use data-based decision-making to guide and monitor center-specific outcomes. With the support of behavior coaches, the pilot sites’ staff assume more responsibility for planning and conducting these meetings. All leadership teams at all pilot sites now include parents as part of the teams. The established site leadership teams build capacity within each site for the continued success and implementation of the Pyramid Model and the use of data-based decision-making to guide and monitor center-specific outcomes. As a result of the success of the Pyramid Model at the Head Start pilot sites, the Northern Arizona Council of Governors (NACOG) Head Start program committed to implementing the program throughout its 30 sites and has a representative participating in the Regional Leadership Team monthly meetings. Also, in collaboration with the state leadership at the Arizona Department of Education, Arizona has become a Pyramid Model State and is currently working to develop a plan to expand the use of the Pyramid Model across the state. In 2024, the goal is to continue to support NAU IHD in the implementation of the Pyramid Model in a minimum of six early childhood classrooms with the goal of expanding to early childcare and/or preschool sites in varied counties across Arizona. The newly established contract years for this cycle are from 2023-2027.

In 2024, the CYSHCN Program will continue to partner with the ADHS Newborn Screening Program (NBS) to educate and inform families regarding the results of the newborn screening panel that may impact their newborn/infant. ADHS Newborn Screening Program currently screens for 32 core disorders, including congenital disorders, critical congenital heart defects, and hearing loss. The NBS and CYSHCN Programs partner to support awareness and education among the general public, the medical community, parents, and professional groups. As part of the continued partnership between NBS and the CYSHCN Program Family Advisors, the CYSHCN Program will continue to support a dedicated Family Advisor with an emphasis on Sickle Cell to collaborate with the partners across Arizona, including the Sickle Cell Foundation, Mountain States Regional Genetics Network, and other state and local entities to increase awareness and engage with the community on projects centered around Sickle Cell.

Furthermore, the CYSHCN Program will continue to partner with Supplemental Security Income (SSI) Disability Determination Process, a program run by the Social Security Administration (SSA), to provide SSI-eligible applicants with a resource list providing information for social, developmental, educational, medical, and rehabilitative services if they are screened eligible for the SSI program.

Participating in conversations regarding emerging issues and emergency preparedness increased during 2022 as a result of the formula shortage crisis and other medical equipment shortages, which impacted CYSHCN. Family Advisor Dawn Bailey’s role and priorities began to shift in order for a CYSHCN Program team member to continually engage in emerging issues/emergency preparedness responses. Emergency Preparedness & Emergency Medical Services for Children is a collaborative project with the ADHS Bureau of Public Health Emergency Preparedness. In 2024, the CYSHCN Program Family Advisor will provide input on family involvement as part of the Access and Functional Needs Taskforce to address the needs of the CYSHCN population in the statewide emergency plan as well as integrate the overall needs of the MCH populations within the state plan to enhance community preparedness. In addition, the MCH Family Advisor will also serve on the Pediatric Advisory Council for Emergency Services (PACES) to ensure that the unique needs of CYSHCN are considered in the development of emergency plans and emergency transport.

The CYSHCN Program will continue to work with our partners in Newborn Screening, the Arizona Early Intervention Program (AzEIP), the Arizona Chapter of the American Academy of Pediatrics (AzAAP), and Phoenix Children’s Hospital on the Mountain States Regional Genetics Network to improve genetic services. The Arizona Title V Program will continue an ongoing partnership with the AzEIP on early detection and intervention for children with developmental delays to ensure interagency cooperation with respect to the implementation and maintenance of a statewide, comprehensive, coordinated, multidisciplinary, and interagency system of early intervention services for eligible infants and toddlers, ages birth to three years, and their families. AzEIP is established by Part C of the Individuals with Disabilities Education Act (IDEA), which provides eligible children and their families access to services to enhance the capacity of families and caregivers to support the child's development.

In 2024, the CYSHCN Program staff and family advisor will continue to participate in the Arizona Mountain States Regional Genetics Network (MSRGN) collaborative to increase awareness, resources, and understanding of genetics. MSRGN supports an Arizona Genetic Navigator, who regularly attends meetings, events, and pop-up workshops to connect with families who are navigating genetic services in their state of residence. Through this network, the CYSHCN Program is able to connect families to the Arizona Genetic Navigator as a resource.

Another priority for the CYSHCN Program will be ongoing education and awareness. The CYSHCN Program will continue to partner with Raising Special Kids, the Family-to-Family Health Information Center (F2F), and the Family Voices Affiliate Organization (FVAO) for the state of Arizona, to connect families to highly skilled, knowledgeable family members that can provide first-hand experience and understanding of the challenges faced by families of CYSHCN.

In addition, CYSHCN Program will respond to calls that come through the Title V-funded Children’s Health Information Helpline. A customer service representative is available Monday through Friday, 8 a.m. to 5 p.m., to provide families and community providers information related to navigating the systems of care, such as insurance options, resources for specific chronic conditions, developmental screening, early intervention, sensory training, child care resources, eligibility requirements for services, appeals processes, and educational supports for families and professionals via telephone, email, and in-person.

CYSHCN Program will continue to partner with the Office of Women’s Health within BWCH on a bullying prevention campaign (MustStopBullying.org), whose purpose is to develop a coordinated approach to address bullying as an important public health issue. The CYSHCN Program will continue to work with the adolescent health team to ensure CYSHCN is included in the marketing campaign and specific topic areas are included that reflect CYSHCN. Findings from the 2020 Title V Needs Assessment indicate that CYSHCN in Arizona were more likely to have experienced bullying than their non-CYSHCN peers, underscoring the importance of this collaboration. Additional details can be found in the Adolescent Health 2024 Application/Action Plan Narrative.

In 2024, the CYSHCN Program will continue to participate in the Empower Advisory Committee facilitated by the Empower Program, which creates an opportunity for a 50% reduction in licensing fees for ADHS licensed child care facilities that pledge to adopt standards that support and promote health and wellbeing of children, including CYSHCN. Participating on the Empower Advisory Committee provides an opportunity to ensure inclusion and consideration for CYSHCN.

In 2024, there will be continued integration and expansion of young adult and family engagement strategies through the Title V-funded Engaging Families and Young Adults Program (EFYAP); implemented in partnership with Diverse Ability Incorporated (DA) and Raising Special Kids (RSK). The Engaging Families and Young Adults Program aims to ensure Family and Young Adult Advisors, especially those who are vulnerable and medically underserved, are key partners in health care decision-making at all levels in the system of services. The CYSHCN Program will continue to support DA and RSK in bureau-wide implementation by placing young adult or family advisors in all vacant roles while also supporting expansion beyond ADHS. The Family and Youth Engagement Structure (Appendix L) serves as a guide and outlines existing placements and opportunities for continued expansion. In 2024, the program will focus on expanding beyond ADHS by connecting with county health departments starting with the Title V-funded Healthy Arizona Families (HAF) contractors. Collectively, EFYAP and the county partners will work together to determine where opportunities exist within each county to support and connect to the EFYAP. The EFYAP Progress Tracker-Appendix M. highlights ongoing efforts to integrate family and young adult advisors within ADHS.

The EFYAP will continue to monitor challenges and areas of opportunity. Some of the areas that the program will be working to address include: working with placement agencies to budget for family advisor compensation, advisor equipment needs/barriers, ongoing support of placement agencies, engaging hard-to-reach communities such as rural, tribal, and other, support for agencies with limited or first-time experience engaging families, and hesitancy of including family advisors as key partners and decision-makers in projects.

In 2024, the EFYAP will continue to develop and offer ongoing professional development and technical assistance opportunities to support internal and external partners. This will include utilizing the Successful Engagement With People Who Have Lived Experience guidebook to customize presentations for professionals seeking to authentically engage with people who have lived experience. The CYSHCN Program Director and Family Advisor Dawn Bailey will meet with internal program leads to determine committee readiness for welcoming advisors and select critical categories for that committee to customize training. The EFYAP will develop a training and onboarding process for offices/programs to ensure they are ready to engage with placed family and young adult advisors. As the contract expands to external partners, the CYSHCN Program Director and Family Advisor Dawn Bailey will introduce the EFYAP with a component of determining placement agency readiness by introducing concepts outlined in the guidebook. This will allow TA and preparation to be built into the initial planning stages of engaging families and young adults.

In 2024, the CYSHCN Program will continue to partner and collaborate with numerous state and local agencies and nonprofit, community-based, and private organizations to offer community-based services and support to ensure CYSHCN and their families are provided access to comprehensive home- and family-centered services. The following outlines the partnerships and agreements that will continue in 2024 to link families of CYSHCN to community-based services and support through shared financing for gap-filling services.

The Metabolic Formula Program, housed within Phoenix Children’s Hospital (PCH), is an assistance program for patients with Metabolic Inborn Errors who require metabolic formula as a life-sustaining treatment. PCH has the only metabolic program in the state of Arizona. Patients are referred, screened, and considered eligible for this assistance if they have no coverage for formulas from their private/commercial insurance plan (i.e., policy exclusion, ERISA, etc.) or if they are uninsured/underinsured. Patients must reside in Arizona and be followed by the geneticist (and dietitian) at PCH – Division of Genetics at least once per year or as ordered by the physician. The CYSHCN Program allocates Title V funds to support the prescribed metabolic formula for adults and children utilizing the Metabolic Formula Program at PCH through ZOIA Pharma, LLC. In 2024, ZOIA Pharma, LLC will continue to coordinate and supply enrolled individuals with metabolic formulas at no charge.

Cystic Fibrosis Services: Arizona Revised Statute 36-143 mandates that ADHS, through the CYSHCN Program, develop and conduct a program of care and treatment without cost to uninsured and underinsured residents of Arizona, aged 21 years and older, with cystic fibrosis. BWCH, through a contract with the Phoenix Children’s Hospital, will continue to provide funding to support the care of Arizonans aged 21 years and older with cystic fibrosis.

Respite and Palliative Care—Ryan House is a contract with the aim of providing access to respite and palliative care for children with life-threatening conditions and their families. Ryan House provides, at no cost to the family, respite and palliative care in a home-like environment for children with potentially life-limiting conditions (birth to 16 years of age). This care is provided by highly trained medical staff.

Affordable Temporary Housing—Ronald McDonald Charities: The CYSHCN Program will continue to support both Ronald McDonald House Charities of Phoenix and Southern Arizona. Ronald McDonald House Charities provides low- or no-cost housing to children with complex medical needs and their families who need to travel to the surrounding local children’s hospital to receive necessary medical procedures. The CYSHCN Title V funding supports the rate of overnight accommodations for children and families.

Medical Services Project: This contract is fulfilled by our partners at the Arizona Chapter of the American Academy of Pediatrics with the aim of increasing access to healthcare for Arizona’s uninsured children by increasing the network of pediatric providers and pediatric subspecialists statewide who are willing to take a limited number of patients without insurance or Medicaid; ensuring that children have necessary acute health care. Most referrals for this project are identified through the school system, which is referred based on the project's eligibility criteria. The children are referred to participating health care providers, who have agreed to accept a predetermined fee of $5.00 or $10.00 as payment in full for each office visit, including any need for diagnostic laboratory services, prescription medication, and/or eyeglasses. In 2024, the CYSHCN Program and AzAAP will be reviewing opportunities to expand outreach to include more specialty providers, explore opportunities to tie in a component of family engagement, and further discuss the referral process to ensure children who are referred are seen by a participating practitioner.

Lastly, CYSHCN Program staff and family advisors will continue to be involved in policy development regarding the inclusion of children and youth with special health care needs and their families in a variety of councils and committees. The CYSHCN Program will continue to explore the opportunity of convening an inter-agency group that focuses on the four pillars of the Blueprint for Change that impact CYSHCN services and resources and supports to enhance state agency coordination, collaboration, and partnership. See CYSHCN 2024 List of Councils and Committees, Appendix N for more information.

Alongside the CYSHCN activities and work that will be led by the CYSHCN Program director, CYSHCN Program Family Advisors, and collaborators, the Primary Care Office (PCO) will continue their cross-cutting activities relating to CYSHCN.

In 2024, the Primary Care Office will be obtaining feedback via a focus group that will inquire and recruit Family and Youth Advisors to help identify improvements and the best approach for outreach and training activities. The Family and Youth Advisors will be high school or college students and families from rural or underserved areas who are interested in health professions. We will work on gathering feedback on training materials and the best time in a student’s journey to hear about scholarships, loan repayment, and other opportunities. We will also seek feedback on who would be the ideal audience for these outreach activities. We will gather feedback and ideas on how to best increase outreach and support to interested underserved youth and families to build a pipeline of health professionals from these areas.