For the 2022 application year, the Bureau of Women's and Children's Health (BWCH) priority for Children and Youth with Special Health Care Needs (CYSHCN) Program is to strengthen systems of care to advance inclusivity and promote equitable and optimal outcomes for children and youth with special health care needs. To achieve these aims, we will focus on strengthening systems of support for the transition to adulthood provided by community-based and 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 CYSHCN Program and in partnership with MCH Family Advisors, will focus on providing enabling services through contractors and in collaboration with stakeholders to improve systems of care for families with CYSHCN.  The focus areas for CYSHCN Program to be implemented include: Transition, Identification, Screening, Assessment and Referral, Education and Awareness, Family and Youth Engagement, Inclusion, and community-based services and supports. Through these activities, the Office of Children’s Health (OCH), CYSHCN 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). 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.

In our 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, BWCH, through the CYSHCN Program, will continue to focus on six system outcome areas tied to national performance measures for CYSHCN that were adopted and promoted by HRSA’s Maternal and Child Health Bureau (MCHB): 1) families as partners, 2) medical homes, 3) financing of care for needed services, 4) coordinated services, 5) early and continuous screening, and 6) effective transition to adult health care. The following highlights the strategies we plan to implement in 2022 to support transition to adulthood.

The Transition Policy in Pediatric Practices, University of Arizona Department of Pediatrics (UADP), previously called the ArizonaLEND Program, will continue to implement contracted deliverables.  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 pilot 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. The project will implement stakeholder involvement and a pilot training to carry out next steps of the project.  The ultimate objective is to develop a plan emphasizing the importance of implementing policy with sustained practice for transitioning youth with special health care needs into adulthood across the state. Activities planned for 2022 will include completion of Objectives 5 and 6 of the project: 

• Objective 5: Enroll an additional 10 practices into the existing training and evaluation system.
• Objective 6: Pilot a program for incorporating patient feedback and CYSHCN Program family advisory group feedback for select practitioners.

Practitioners currently enrolled in the program can complete the training quickly but have up to 24 months to achieve all elements and be eligible for continuing education credits.  The UADP plans to assist practitioners in completing the training program and facilitate continuing education credit approvals through their respective accrediting agencies.  These practitioners will provide essential feedback on the process and will re-evaluate their baseline level of transition practice to demonstrate what improvements were made as a result of the training.  In addition, the practitioners, in collaboration with BWCH, will recommend relevant stakeholders and identify best practices for promoting the training program to improve the proportion of practitioners in Arizona who are implementing at least a basic level of pediatric-to-adult transition assistance to their pediatric patients with special health care needs.  The UADP will provide a final report with recommendations on sustaining the training program recruitment, enrollment, and participant completion activities to serve as an ongoing resource to ADHS for continuous education and improvement of transition practice across the state. Additionally, the UADP will continue to follow-up with current participants, provide outreach to new practitioners, create an improved version of the Pre-Module Transition Practice Assessment, start developing future modules with opportunities for expansion to incorporate the six core outcomes, and prepare for two possible situations for providing maintenance of certification (MOC) credit:

1. If we enroll 10+ practitioners, then we will apply for organization MOC credit.
2. If we continue with 8 or fewer practitioners, then each practitioner will apply individually for MOC credit, but we will provide practitioners with all the paperwork needed and assist them throughout the application process.

In 2022, the CYSHCN Program will continue to engage in the Adolescent Champion Model (ACM), created by the University of Michigan Health System Adolescent Health Initiative.  Spark training is mini training given to the ACM teams and their clinic staff on various adolescent focused topics (i.e., adolescent-centered environments, confidentiality laws, patient-centered care, etc.). The University of Michigan worked with Got Transition and developed a Spark training module incorporating some of the transition strategies.  The module will continue to be offered to clinics participating in the ACM to help guide physicians and other healthcare professionals in meaningful engagement with CYSHCN. More information on the Adolescent Champion Model can be found in the Adolescent Health domain.

BWCH, through the CYSHCN Program, ensures that CYSHCN and their families are considered in school and post-school transition plans.  In addition, in 2022, the CYSHCN Program will continue to fund a portion of Arizona's annual transition conference for special education students, IDEA, which is a collaborative, cross-stakeholder professional development event, hosted by the Arizona Department of Education (ADE), aimed at providing the 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 2022, the ADE IDEA Conference will be held in a hybrid capacity. The CYSHCN Program will continue to work with ADE to offer scholarships for CYSHCN and their families to attend annually.  Scholarship funds cover expenses associated with registration and lodging for CYSHCN and their family or personal care assistant.

The CYSHCN Program will continue to partner with additional health care entities throughout Arizona, including Phoenix Children’s Hospital, to support and align transition efforts to increase adult providers who are able to care for those with special healthcare needs as they transition into adulthood.  More information on our transition partnership with Phoenix Children’s Hospital can be found in the Adolescent Health section of this application.

Identification, Screening, Assessment, and Referral will continue to be a primary focus area for the CYSHCN Program.  In 2022, BWCH will continue to partner with First Things First (FTF)—Arizona’s critical partner in creating a family-centered, comprehensive, collaborative, and high-quality early childhood system that supports the development, health, and early education of all Arizona's children from birth through age five—on state-wide initiatives including participating on the Systems Building and Childhood Screening and Early Intervention Stakeholder workgroups.  Participation in these statewide workgroups ensures system partners work collectively on system policies and guidelines to support children including CYSHCN. 

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. Traditionally, the HCOs is a binder that is provided to CYSHCN and their families to help them organize and manage important health documents—such as medical history, list of prescriptions, immunizations, past doctor visits, results of tests, etc.—so that they can easily reference this information and share it with those that need it. 

In 2022, the CYSHCN Program has many plans to improve this resource and make it even more useful and available to those who can benefit from it. In 2022, one goal is to develop an electronic version of the HCO and make it available on the CYSHCN Program webpage for download. Creating an electronic version of the HCO will make this tool, and the information and resources it contains, more easily available for families. It will also make it easy for users to adapt the information based on individual needs. The program will also convene a focus group of parents/caregivers to gather feedback from families on the HCO to ensure the resource meets the needs of the user. The CYSHCN Program also plans on creating an overview video to accompany the documents, making it easier for users of the HCO to become familiar with the tool. This video and the revised electronic and hard copy versions of the HCO will be made available to CYSHCN-serving organizations, CYSHCN, and their families, including families enrolled in the High Risk Perinatal Program, across the state.   

The Care Coordination Manual (CCM) has been revised and has been converted into an electronic booklet. The manual provides information on resources for CYSHCN and their families, including an overview of systems of care with eligibility requirements, resources available for families, help with the transition to adulthood, and examples of letters of medical necessity. The program will also gather feedback from parents in a focus group setting to ensure that the resource meets the needs of the users.  The manual will be shared with families though community partners and outreach events.

CYSHCN Program will continue to partner and collaborate with several ADHS programs and other state agencies to support identification, screening, assessment and referral of CYSHCN to the care and services they need.  The CYSHCN Program will continue to provide funding to support the High Risk Perinatal Program (HRPP) to provide home visiting services to CYSHCN who are identified as a result of a HRPP home visit. The funds will support six months of follow-up and are intended to guide families of CYSHCN to needed care and community resources.  Additionally, the CYSHCN Program will work with the Arizona Birth Defects Monitoring Program, housed within the Office of Public Health Statistics, to provide appropriate information, resources, and service linkages to families of children identified by newborn screening and Arizona Birth Defects Monitoring Program. The Arizona Title V Program also funds about .5 FTE of staff time within the Arizona Birth Defects Monitoring Program. Furthermore, CYSHCN Program will continue to partner with Supplemental Security Income (SSI), a program run by the Social Security Administration (SSA), Disability Determination Process, to provide SSI-eligible applicants with a resource list providing information for social, developmental, educational, medical, and rehabilitative services.  

In 2022, 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 31 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.

In 2022, the CYSHCN Program, in collaboration with Family Advisors and the Newborn Screening Program, will work together to follow-up with families of newborns with Sickle Cell Trait to provide a resource list. CYSHCN Program will welcome a new Family Advisor, Danielle Crudup, to replace Eadie Smith, with a focus on participating and collaborating on projects centered around Sickle Cell. Also, in conjunction with the Sickle Cell Foundation of Arizona and the Pacific Sickle Cell Regional Collaborative, the CYSHCN Program will continue to explore the opportunity to implement the education and training counselor program for volunteers to be a referral resource in the community and to inform families to learn about Sickle Cell and the available resources.

The CYSHCN Program will continue work with our partners in Newborn Screening, Arizona Early Intervention Program (AzEIP), Arizona American Academy of Pediatrics (AzAAP) and Phoenix Children’s Hospital, on the Mountain States Regional Genetics Network to improve genetic services to underserved populations across Arizona, including the promotion of the Developmental Delay Algorithm for pediatricians to use when beginning genetic referrals. Ongoing partnership with the AzEIP on the 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.

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. 

Additional areas of focus to build education and awareness include continued collaboration with partners including the Transition Care Network to develop family, provider, and system capacity and provide technical assistance to local county health departments on how to incorporate diversity, equity, and inclusivity within the MCH activities they implement through the MCH HAF IGA.  CYSHCN Program will explore the opportunity to coordinate and host a planning meeting with statewide partners to discuss childcare service needs for CSHCN.

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 interactions.

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. In 2022, the focus will be on continuing to promote the marketing campaign and advising schools and school districts on best practices. The CYSHCN Program will work with the adolescent health team to ensure CYSHCN are included in the marketing campaign.  Additional details can be found in the Adolescent Health domain of the 2022 application.

Additionally, the CYSHCN Program will continue to partner with the Early Hearing Detection and Intervention (EHDI) program to provide education and training to physicians, midwives, and other health care professionals in the use of otoacoustic emission machines (OAE) for early hearing screening and detection of children with hearing conditions.

BWCH will continue to work with Family Advisors to engage with internal and external partners to provide training in cultural competency, CYSHCN workforce capacity building, and awareness on best practices for addressing the needs of CYSHCN.

In 2022, there will be continued integration of family and youth engagement strategies through contracts with community partners to engage youth and families of CYSHCN as partners in decision-making at all levels, including providing input on Title V Maternal and Child Health (MCH) Block Grant programs and activities, MCH issues, and participation on program advisory groups and committees.  Partnerships with existing MCH Family Advisors will continue to be a priority.  In 2022, the CYSHCN Program will have a grantee designated on continuing to fulfill the scope of work for family and youth engagement. The Engaging Families and Young Adults Program’s aim is to ensure Family and Young Adult Advisors are key partners in health care decision-making at all levels in the system of services, especially those who are vulnerable and medically underserved. Family Advisors must be family members (i.e., parent, grandparent, foster parent, aunt, uncle, adult sibling or adult cousin, or other adult considered family by a child) who have first-hand, lived experience with systems of care in order to have direct and meaningful input into the systems, policies, programs, and/or practices that affect care, health, well-being and the lives of children, youth and families.  Youth Adult Advisors recruited must be individuals ages eighteen to twenty-six (18-26), including youth with special health care needs and a variety of disabilities. A full description of BWCH family and youth engagement activities can be found in the Cross-Cutting health domain 2022 planned activities. 

The CYSHCN Program will partner with the Bureau of Nutrition and Physical Activity (BNPA) and local county health departments to strengthen opportunities for community inclusion to increase the number of children and youth with special health care needs and their families that are included in community-level support and services. 

ADHS licensed child care facilities participating in the Empower Program pledge to adopt standards that support and promote health and well-being in exchange for a 50% reduction in licensing fees. In 2021, the Office of Children’s Health partnered with county health departments and BNPA’s Empower Program to support community inclusion strategies. 

For state FY2022, Empower will focus on developing and implementing additional tools for caregivers of children aged 5 to 14 years in out-of-school-time (OOST) settings.  While the standards, policies, and practices are intended for all children in child care facilities, much of the focus, examples, and guidance have been directed towards caregivers of children ages birth through age five.  AZ Health Zone, Arizona’s SNAP-Ed program, conducted focus groups in 2018.  Findings included suggestions to create more age-specific and relevant materials, resources and training, including online resources and training, and to include more family engagement.  As Empower values and promotes inclusion of all children, these new resources and implementation guidance for OOST settings and providers will include children with special health care needs and disabilities as well.

Also for FY2022 and beyond, the Empower Advisory Committee (EAC), in conjunction with the recently awarded grant from Nemours, will work on state-wide systems alignment for work in early care and education (ECE) settings, specifically as it relates to health, nutrition, physical activity and wellness.  The EAC has representatives not only from health and nutrition (e.g., Child Care and Adult Food Program [CACFP], Oral Health, Sun Safety, Tobacco, etc.) but also from CSHCN, Head Start, Arizona Early Intervention Program (AzEIP), and Preschool Special Education (IDEA, Part B, Section 619).  EAC representatives work in collaboration to align their work, guidance, and policies whenever possible; providing consistent messaging to the ECE field of statewide providers.   

In addition, the CYSHCN Program will continue to provide support for translation of documents that provide information to families and individuals with CYSHCN to foster their understanding of important information through contracted services for interpreting needs, including American Sign Language (ASL) or communication access real-time translation (CART) (e.g., open captioning) services.

The OCH, 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 2022 to link families of CYSHCN to community-based services and other supports through shared financing for gap-filling services.

Metabolic Formula Program is an assistance program of Phoenix Children’s Hospital and is currently the only metabolic program in the state for patients with Inborn Errors of Metabolic who require Medical Formula.  Patients are 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 Phoenix Children’s Hospital – Division of Genetics at least once per year or as ordered by the physician.  The Office of Children’s Health is seeking a new contract, and will have the new contract awarded by the end of 2021, to support a network for the provision of prescribed metabolic formula for adults and children who have a metabolic disorder requiring dietary manipulation using metabolic formula.  The formulas are provided at no charge to eligible patients.

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 provide funding to support 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 and child life staff.

Affordable Housing—Ronald McDonald Charities BWCH will continue support of Ronald McDonald House Charities of Phoenix and Southern Arizona to provide support through funding to assist in the operation of three houses for families in need of housing while their child is receiving care at several of the children’s hospitals in Phoenix and Tucson.

The goal of the Medical Services Project, a contract with the Arizona Chapter of the American Academy of Pediatrics, is to increase 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 AHCCCS; ensuring that Arizona’s children have necessary acute health care.  School nurses identify children who meet the Medical Services 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. Specialists have also joined the Medical Services Project. Children may receive free diagnostic laboratory services, prescription medication, and eyeglasses through the Medical Services Project.

The MCH Family Advisor will conduct training for healthcare professionals, community providers, and families on the joint principles of a Medical Home using the Pediatric Care Coordination Curriculum. This training will be conducted in partnership with Phoenix Children’s Hospital, Arizona State University’s Edson College of Nursing and Health Innovation, and Boston Children’s Hospital (National Center for Care Coordination Technical Assistance) to promote implementation of tools and practices for families, providers, payers, and community services.

Emergency Preparedness & Emergency Medical Services for Children is a collaborative project with ADHS Bureau of Public Health and Emergency Preparedness.  The Office of Children’s Health 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.  In addition, the taskforce will 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.

Lastly, CYSHCN program staff and MCH Family Advisors will continue to be involved in policy development regarding inclusion of children and youth with special health care needs and their families in a variety of councils and committees.  See Appendix B, List of MCH Group Affiliations, for more information.

In 2022, COVID-19 pandemic recovery efforts will focus on improved child health and well-being. The CYSHCN program will continue to monitor the impacts on children and youth with special healthcare needs as a result of the interruption and return to schooling, social and emotional well-being, well-child visits, family functioning, and overall social determinants of health. Strategies to be considered are outlined in the Children’s Health 2022 Action Plan narrative.