The Children and Youth with Special Health Care Needs (CYSHCN) Program is under the umbrella of the Office of Children’s Health (OCH) and has two staff members.  In 2021, Laura Luna Bellucci served as the Chief of the Office of Children’s Health and oversaw all aspects of staff and programming and fulfilled the role of Title V CSHCN Director.  Janet Viloria is the CYSHCN Program Director and Manu Nair is the CYSHCN Program Manager. During 2021 a hybrid position has been identified that will work with the CYSHCN Program and MIECHV to align strategies and ensure cross collaborative efforts among programs. This position has been identified as the Priority Populations Program Manager. For more information on Arizona’s MCH workforce, please see III.E.2.b.i. MCH Workforce Development and VI. Organizational Chart.

Overall, in 2021 the CYSHCN Program continued to collaborate and partner with internal programs and a variety of community stakeholders to provide enabling services – such as Information and Referral, Education and Advocacy, Family Engagement, Transition, Inclusion, Gap Filling Services and Community Collaborations – to support the mission of improving the systems of care for children and youth with special health care needs (CYSHCN) and their families.  Education and training was provided to families and professionals that focused on family-centered care, cultural competence, support of medical homes and pediatric-to-adult care transition, and technical assistance in the development of best practices for CYSHCN. COVID-19 continued to impact the way education and training could be provided. The program’s role shifted to virtual support of ongoing contracts, assessing the needs of our community and partners in the response to COVID-19 and specific impacts of the pandemic on CYSHCN.

Below are the accomplishments of the 2021 activities.

Family and young adult engagement, including families with CYSHCN, is a role or activity that enables those who have first-hand experience with systems of care to have direct and meaningful input into the health systems, policies, programs, and/or practices that affect service delivery and the health and wellness of children, youth, consumers, and families. This type of engagement is different from the important role that families, consumers, and youth play in determining and controlling the array of services and support provided to them and requires additional preparation and ongoing support and development. Examples of family, consumer, and youth involvement include participation in advisory councils, document review, serving on committees, policy development, curriculum development, training, participation on community action teams, and providing mentoring and support to other families and programs.

In 2021, the CYSHCN Program Family Advisors Dawn Bailey and Eadie Smith continued to work on training and programs virtually around family engagement, care coordination, transition and Sickle Cell support. In June of 2021, Eadie informed the CYSHCN Program that she would be relocating back to her home state of Mississippi and she would no longer be available to serve as CYSHCN Program Family Advisor, but she had identified an individual who was involved in the Sickle Cell Foundation Family meetings who was interested in the role. After several introductory and transition meetings, the CYSHCN Program onboarded Danielle Crudup as the Family Advisor to replace Eadie Smith.

Dawn Bailey continued to serve in the role of AMCHP Family Delegate for the CYSHCN Program and participates in a Family Engagement Collaborative through AMCHP. Dawn serves on the AMCHP Board of Directors and the Family Leadership, Engagement and Development (LEAD) Committee as Vice Chair and helped with the development of the Family Delegate Guide: A Guide For Family Leaders & Title V Programs, which was released in September of 2021. Dawn continues to support family engagement and inclusion through her participation in work groups, stakeholder meetings, internal and external meetings, councils, and other state and national platforms.  Appendix E, CSHCN 2021 Training, Collaborations, Education, and Activities, documents engagements completed by CYSHCN Program Family Advisors, Dawn Bailey, Eadie Smith and Danielle Crudup.

In 2021, the CYSHCN Program began development of a new program to support family engagement; Engaging Families and Young Adults Program.  In 2020, the contract ADHS had with Raising Special Kids for Family and Youth Engagement came to its five-year term. This presented the Arizona CYSHCN Program with an opportunity to design a new, revised scope of work.  BWCH released the request for grant application (RFGA) and selected Diverse Ability Incorporated in collaboration with Raising Special Kids as the contractor to carry out the statewide program. Based on a collaborative history, expertise, and shared values, Diverse Ability Inc. and Raising Special Kids each demonstrate an enduring commitment to youth and families by providing meaningful opportunities for them to acquire leadership and self-advocacy skills, and by supporting their efforts to contribute their valuable wisdom and experience within the design, delivery, and evaluation of programs and policies impacting systems of care in Arizona.

The aim of the Engaging Families and Young Adults Program is to identify, recruit and train Family and Young Adult Advisors and place these individuals in state and local level public health and health care systems. The long-term goal is achieving family and youth involvement at the state and local level as key partners in health care decision-making in the system of care. Phase 1/Year 1 consists of implementation throughout the ADHS Bureau of Women’s and Children’s Health by placement of family or young adult advisors within each Office (see Family & Youth Engagement Structure). Young Adult Advisors recruited must be individuals ages 18-26, including youth with special health care needs and a variety of disabilities.  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 navigating 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.  The program will use evidence-based resources, such as Family Voices Serving on Groups or an equivalent evidence-based curriculum to prepare Young Adult and Family Advisors for service and the Family Voices Family Engagement in Systems Toolkit (FESAT) to evaluate the engagement.

The CYSHCN Program continued partnership with Pilot Parents of Southern Arizona (PPSA) to provide education and training to families and youth in advocacy and leadership.  The CYSHCN Program, in partnership with PPSA, leveraged the evidence-based family leadership training Partners in Policy Making Curriculum.  PPSA created additional curriculum, presentations, and invited speakers providing a broad overview of the needs of CYSHCN specific to Arizona systems of care, including transition to adulthood across all areas of life; advocacy at local, state, and national levels; and navigating changing responsibilities between pediatric and adult systems. Adolescent self-determination and self-advocacy are integral pieces of the curriculum. In 2021, the Partners in Leadership training was able to recruit 23 participants to join four sessions. Due to COVID-19, the training was held using a hybrid model and the amount of sessions was decreased. Pilot Parents of Southern Arizona (PPSA) experienced staffing shortages which impacted their capacity to recruit and conduct more training sessions for families.

Information and referral activities include; in 2021, the CYSHCN Program, in collaboration with Family Advisor Eadie Smith and the Newborn Screening Program (NBS), continued work on Sickle Cell Disease/Trait. NBS obtains the diagnosis information of children with Sickle Cell Disease/Trait in Arizona and families work with primary care doctors on treatment and care for the child. The CYSHCN Program and NBS continued to provide resources and information as a follow-up to families of newborns with Sickle Cell Disease/Trait. The CYSHCN Program welcomed and onboarded Danielle Crudup in September 2021 as a Family Advisor with the departure of Eadie Smith. With the transition to the new Family Advisor, the CYSHCN Program did not further develop the Arizona-specific Sickle Cell counselor training; however, we are working alongside our partners with Mountain States Regional Genetics Network to tap into the Genetics Navigator role as a resource to connect families with. The CYSHCN Program continued to partner with the Sickle Cell Foundation of Arizona by connecting newly onboarded Family Advisor, Danielle Crudup, to the President and Treasurer to assist with engaging families seeking more information on Sickle Cell Disease/Trait. Danielle attends regularly scheduled meetings and shares updates and opportunities for collaboration.  Due to the Omicron surge of COVID-19, the Sickle Cell Foundation of Arizona did not host the annual family engagement conference, which is annually supported by the CYSHCN Program, but plans to host the conference in 2022.

The CYSHCN Program also continues to partner with the ADHS Newborn Screening (NBS) Program to educate and inform families regarding the results of the newborn screening panel that may impact their newborn/infant.  The Perinatal/Infant Health 2021 Annual Report and 2022 Application have additional information on NBS.

The CYSHCN Program and the Arizona Birth Defects Monitoring Program had an initial meeting to re-establish a referral system to ensure support for families and children with birth defects.  Due to staff capacity and COVID-19, this work was put on hold for 2021. Plans are underway to move this work forward in 2022/2023. More information about the Arizona Birth Defects Monitoring Program can be found in the Infant/Perinatal Health domain of this application and in the CSHCN 2022 Action Plan.

In 2021, the CYSHCN Program updated the process for how Social Security Income (SSI) eligible applicants receive information and resources from the CYSHCN Program in order to streamline and minimize duplication of efforts. Initially, individuals who were approved through the Social Security Administration would receive their SSI approval notification and a notice would be sent to the CYSHCN Program in order to conduct a follow up for the approved individual. The CYSHCN Program would then send another letter to the individual to inform them of other AZ relevant resources and information. With the updated process, the SSA now will attach the CYSHCN resource letter along with the approval notice at the time of approval for SSI benefits. Individuals will receive both letters from the SSA once, at the point of approval for SSI. The letter provides CYSHCN Program contact information and a list of resources that exist in Arizona serving CYSHCN and their families, such as information and referral services to health care, insurance, and community resources. The CYSHCN Program letter was provided to all applicants; children, youth, and young adults with special healthcare needs who were identified and approved through the SSI application process. Due to the established line of communication between SSA and the CYSHCN Program, the SSA representative is able to identify how many CYSHCN letters were sent along with the SSI approval notice and communicate that back to the CYSHCN Program. In 2021, through Social Security Income, CYSHCN referral and information was provided to 1,307 families.

The CYSHCN program team continued to develop tools and resources to support families and young adults.  The Care Coordination Manual (CCM) is a resource developed by the CYSHCN Program to provide CYSHCN and their families with an overview of systems of care (with eligibility requirements for specific programs), resources available for families in Arizona, help with the transition to adulthood, and examples of letters of medical necessity.  Typically, approximately 400 CCMs are distributed annually at events, but due to COVID-19 and the surge of Omicron, events were not held in person and the care manual is currently only in paper format. In 2021, there was ongoing work to streamline the CCM and adapt it to be accessible in a variety of forms, including electronically. The CYSHCN Program will continue to partner with the Arizona Department of Education (ADE), Phoenix Children’s Hospital, and Raising Special Kids to disseminate the manual to families as requested. The manual is also made available to community members and families at conferences and outreach events as they are being held.

The CYSHCN Program’s Health Care Organizer (HCO) is intended to assist families of CYSHCN in managing the complex and multiple sources of information, services, treatment, and medical and behavioral health providers. The HCO is a portable toolkit that includes templates to manage health care information including: About Me, Dental Resources, Early Care-Education, Emergency Planning, Family History, Immunizations, Legal Options, My Insurance, Prescriptions, Providers, and Transition.  The HCO encourages families to manage their own health care information and records, leading to self-advocacy regarding their health care considerations. The HCO Toolkit also can be used as a tool to assist youth who are experiencing transition to adulthood in being proactive and organized as they learn to make informed health care decisions. In 2021, no physical HCOs were disseminated to individuals and community providers as the HCO is only in paper format. The CYSHCN Program plans to coordinate a family focus group in 2022 on utilization and appropriate adaptation of the HCO.

The transition to adulthood can be an exciting time, but it’s also fraught with challenges.  For many young people, this is a unique period of change where they take on more responsibilities and become more independent, finding their way in the adult world. The transition to all aspects of adult life includes adult health care, work, and independence. The goal and hope is for all youth to be healthy, happy, self-sufficient, contributing members of society. However, certain subsets of youth face barriers and difficulties reaching these goals. These youth are more vulnerable than "average" youth in the general population, often falling through the cracks during this journey.

To help families and health care providers plan for the challenges of transitioning children to adulthood, the CYSHCN Program continued to focus on the six system outcome areas tied to national performance measures for CYSHCN, which includes: 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.

In 2021, CYSHCN Program continued the following transition projects with community partners:

University of Arizona’s Department of Pediatrics work began in 2018 and continued through 2021 with the University of Arizona’s Leadership Education in Neurodevelopmental and Related Disabilities (ArizonaLEND) Program.  The purpose of this project is threefold: 1) to evaluate the current proportion of practitioners utilizing pediatric-adult transition policies and practices using the Got Transition® model and materials; 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. As a continuation of the project, in 2021, the program goal was to develop and implement the training program for practitioners utilizing the Got Transition program tools and resources.

In 2021, the development and implementation of the training program for Arizona practitioners using the Got Transition program tools and resources launched using the Thinkific platform, which was selected due to its various features and highly customizable design.  Although eight providers were originally signed into contract, some of the providers could no longer participate due to COVID-19 and other health concerns, and the participating practitioners dropped to six. An evaluation system was created to track the progress and opportunities for improvement from the providers completing and implementing the modules in their practices. Due to the flexibility of completing the modules over a 24-month period, the first set of practitioners are on track to complete the modules by March 2022.  The approval process for MOC Part 4 credit was met with challenges after two sets of reviews and resubmissions occurred. As an alternative, practitioners will be provided with all the documents and information needed to submit ABP Quality Improvement Part 4 MOC credit individually.

In 2021, the CYSHCN Program continued to participate in the Transition Care Network in support of further collaboration, involvement, and elevation of transition practices in Arizona. In July of 2021, Family Advisor Dawn Bailey, Program Director Janet Viloria, and Dr. Wendy Bernatavicius, MD, Division Chief of Primary, Complex, and Adolescent Medicine at Phoenix Children’s Hospital, met with representatives from The National Alliance to Advance Adolescent Health and partners at the American Academy of Pediatrics regarding technical assistance on furthering the development of care coordination and transition in Arizona. The conversation focused on leveraging our current implementation of Got Transition and brainstorming through a possible quality improvement project to provide practitioners an opportunity for continued assessment and evaluation after completing the modules. The National Got Transition organization shared a health care initiative focused on the collaboration of pediatric and adult care providers, aligning the process of transitioning as a QI project.

The Got Transition contract with University of Arizona is linked to the Evidence-informed Strategy Measures (ESMs) 12.2 and 12.3.

Foster Youth with Disabilities Transitioning consisted of a plan to address the needs of foster children with disabilities by entering into an interagency agreement with the University of Arizona’s Sonoran University Center for Excellence in Developmental Disabilities (Sonoran UCEDD) to convene an advisory group and conduct research.  Representatives from the following agencies participated in the group: Arizona Department of Child Safety (DCS); Arizona Department of Education (ADE); the Division of Developmental Disabilities (DDD) and Arizona Rehabilitation Services (RSA), both within the Arizona Department of Economic Security (DES); Arizona Health Care Cost Containment System (AHCCCS); and the Inter Tribal Council of Arizona, Inc. (ITCA).  In addition, five (5) youth/young adults with lived experience joined the advisory group. Sonoran UCEDD recruited youth from diverse racial and ethnic backgrounds with different disabilities/special health care needs and in different stages of transition. In 2021, Sonoran UCEDD continued to face many barriers due to COVID-19, which impacted the efforts and outcomes of the group's research. Focus groups continued to exhibit low attendance and participation whether they were in person or virtual. Ultimately, considering the need to be flexible, focus groups for young adults with lived experience transitioned to key informant discussions by virtually meeting with members of ITCA, DDD, and members from the Center for Child Well-Being at ASU. Due to the amount of challenges faced, this project will be put on hold and the CYSHCN Program and UCEDD will reconvene to discuss next steps. 

The annual Arizona Department of Education (ADE) - Transition Conference for special education students is a collaborative, cross-stakeholder professional development event 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: (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 adults with disabilities and/or family members, secure care education personnel, college and university disability resource services personnel, and adult service agency personnel. For this conference, the Title V Block Grant traditionally provides funds for scholarships to cover lodging expenses for youth, family members, and/or personal care assistants, but due to COVID, lodging expenses were not utilized. In 2021, the conference was hosted using a virtual platform and plans on returning to in-person in fall of 2022.

Arizona continues to support inclusion of children and youth with special healthcare needs.  When programs provide appropriate accommodation and support to meet the needs of all children, everyone benefits. Despite several protection laws, many children with special needs and their families continue to face challenges.  The CYSHCN Program supports varied efforts to support inclusion.

In order for families and individuals with special healthcare needs to be included in receiving and understanding information regarding services or resources, the CYSHCN Program continued to fund cultural inclusion translation services to provide support for translation of documents that provide information to families and individuals with special health care needs to foster their understanding of important information.  These services support interpreting needs for Spanish-speaking and American Sign Language (ASL) families as well as Communication Access Realtime Translation (CART) services.

In an effort to increase access to quality childcare, the CYSHCN Program contracts with Northern Arizona University (NAU) Institute for Human Development to pilot The Pyramid Model for Program-Wide Positive Behavior Supports Program with childcare providers to manage difficult behavior, promote social emotional well-being, and prevent challenging behaviors among young children. The Pyramid Model for Program-Wide Positive Behavior Supports was funded through Title V and implemented through the Institute for Human Development at NAU.

The purpose of the Pyramid Model is to increase the inclusion of children with special health care needs in early childhood education and child care settings.  Five (5) centers in northern Arizona continued to participate in the model during 2021, including: three Head Start facilities (Ponderosa, Siler, and Cromer Head Start) and two private pay centers (Little Ropers Child Enrichment Center and Immaculate Conception).

Due to COVID-19, all sites experienced closures and 2021 began initiatives to reopen centers for in-person learning. During the closures that continued through the beginning of 2021, the centers received coaching and technical assistance tailored to their individual and center-wide action plans and focused on capacity building of staff employed at the centers rather than classroom implementation of the model. In this way, the Pyramid Model has been able to continue building capacity for sustainability.

The Site Leadership Team, which consists of classroom staff, administrators, and parents were supported to use data-based decision-making to guide and monitor center-specific outcomes. Due to the effectiveness of the Site Leadership Team, a focus was developed to implement a Leadership Team at each site.  In 2021, The Site Leadership Team continued to assess the need for staff training and capacity building with a focus on improving employee mental health as it intersects with the Pyramid Model.

The continued shift to capacity building during 2021 showed success, which has encouraged the expansion of the Pyramid Model to all 30 Head Start centers of the Northern Arizona Council of Governments (NACOG). The Director of the Arizona Department of Education (ADE) Early Childhood Special Education program and some of her staff have started attending some of the Regional Leadership Team meetings and are keeping the team informed of statewide efforts to expand the Pyramid Model.  In turn, the Regional Leadership Team has advised ADE on steps needed to implement pilot sites at their preschool public school sites.

Title V funding was allocated to the Empower Program, managed by ADHS’ Bureau of Nutrition and Physical Activity (BNPA). ADHS developed the Empower Program in 2010 as a voluntary program to support licensed early childhood education (ECE) providers’ efforts to empower young children to grow up healthy. The Empower partnership with the CYSHCN Program works to ensure that all children, including children with varied abilities and special health care needs, are included in program standards and resources.  As a result of this financial support, the online course ‘Inclusion in Child Care Settings’ (available in both English and Spanish) was developed and has been well utilized. In 2021, over  1,000 individuals have taken the course. A new section, ‘Children with Varied Abilities,’ has been added to the Empower website and has been frequently referenced (anecdotally), and overall website use has increased.  A variety of useful resources and tools are provided for staff and programs and to enhance family engagement.  During 2021, the Empower Advisory Committee (EAC) began reviewing and recommending updates to the Empower Standards and components.  Workgroups, including child care providers, have been utilized to review best practices and compare them to the current standards.  This process will continue through 2022, with an anticipated implementation date of July, 2023.  One anticipated outcome is to add a standard on social/emotional development.  Additionally, an Out-of-School-Time (OOST) Empower Guidebook was developed, along with a training manual, and self-assessment checklist.  This will go into effect for programs only serving children ages 5-12 in July, 2022. More information about the Empower Program can be found in the Children’s Health Annual Report.

BWCH continued to work towards increasing the percentage of adolescents, inclusive of adolescents with special health care needs, with a preventive visit (NPM 10: Adolescent Well-Visit) by continuing to implement the University of Michigan’s Adolescent Champion Model (ACM) in Arizona to create youth-centered practices. Additional information about the Adolescent Champion Model and promotion of adolescent well-visits can be found in the Adolescent Health domain of this application.

The CYSHCN Program continued to advocate for and promote family-centered, community-based, comprehensive, coordinated systems of care for CYSHCN by partnering and collaborating with numerous state and local agencies and nonprofit, community-based and private organizations. The 2021 Gap-Filling Services supported include:

The CYSHCN Program contracted with Coram/CVS Infusion to support the Phoenix Genetic Program of Phoenix Children’s Hospital, a statewide network for the provision of prescribed metabolic formula for uninsured or underinsured adults and children who have a metabolic disorder requiring dietary manipulation using metabolic formula.  Through this program, the formula is provided to patients at no charge. In 2021, Phoenix Genetic Program of Phoenix Children’s Hospital provided 482 metabolic formulas to 27 individuals.

Arizona Revised Statute 36-143 mandates that ADHS, through the CYSHCN Program, develop and conduct a program of care, treatment, and services without cost to uninsured and underinsured residents of Arizona, aged 21 and older, with cystic fibrosis.  In order to achieve this, CYSHCN contracts directly with Phoenix Children’s Hospital to provide state appropriated funds for the care and treatment of these individuals.  In 2021, the program provided services to 39 individuals 21 years of age and older with cystic fibrosis.

The CYSHCN Program, through a Title V-funded contract with Ryan House, provides respite and palliative care in a home-like environment for children (birth to 16 years of age) with life threatening conditions and support for their families. This care is provided at no cost to the family by highly trained medical and child life staff. In 2021, Ryan House provided care to 60 families.  In addition, through continued partnership with the Ronald McDonald House Charities of Phoenix and Southern Arizona, the CYSHCN Program provided support through Title V 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. In 2021, Ronald McDonald House provided a total of 2796 nights of accommodation for 111 families of CYSHCN obtaining hospital care in the Phoenix and Tucson metropolitan areas.

The CYSHCN Program continued to provide Title V funding to support the Arizona Chapter of the American Academy of Pediatrics’ (AzAAP) Medical Service Project (MSP) to increase the statewide network of pediatric providers and pediatric subspecialists willing to take a limited number of patients without insurance or AHCCCS to ensure that Arizona’s children have necessary acute health care. In 2021, AzAAP focused their efforts on four major areas of work: 1) increasing the number of children (including CYSHCN) who have access and are linked to medical/dental/vision services, 2) increasing the number of children who are connected to resources that assist families in applying for health care services for continuous care, 3) increasing the the variety of providers who participate in the MSP Network, 4) increasing the number of schools that participate in the MSP and utilize the program to refer school-aged children.

In 2021, the COVID-19 pandemic caused the closure and disruption of in-person learning in Arizona schools. Because of this, school nurses had limited interactions with students and MSP has seen a reduction in referral numbers. However, school nurses still make up the highest number of referrals (56%) and the providers continue to refer children to MSP when a need is identified. The most common referrals are for optometry and ophthalmology. Children also received referrals to the following services: dentistry, lab services, prescriptions, ENT, radiology, behavioral health, orthopedics, cardiology, audiology, dermatology, retinal specialist, and neurology.

Many providers also converted to telehealth and some had limited hours due to COVID-19. In 2021, MSP received 302 applications for health care services; 179 of those applicants were identified as children with special health care needs. A total of 614 referrals were made for specialty care and 24 for primary care. It is important to note that some children received multiple referrals to services, which is why there are more referrals than applicants.

Fifty-Eight (58) families requested insurance assistance resources offered through the program. MSP staff continued to place an emphasis on educating families on referral sources, especially now as so many families lost coverage amid the pandemic. Increasing the MSP provider network and re-establishing outdated partnerships with providers also remained a priority.

The CYSHCN Program continued to collaborate with the High Risk Perinatal Program (HRPP).  The CYSHCN Program supports HRPP in three specific ways. First, the CYSHCN Program is a resource that Community Health Nurses (CHN) rely on. The CYSHCN Program has many resources related to genetics, feeding, medical services, medical home, family advisors, and additional state- and national-level resources.  Secondly, the CYSHCN Program provides funding to support home visits with families for up to six months.  When a child or youth up to 19 years of age has been identified with the special healthcare need, the six-month time frame enables nurses to support the family and help facilitate the referrals, appointments, and/or screenings needed to secure the services required to address the special health care need. Lastly, the CYSHCN Program and the HRPP CHNs continued to provide backup for emergency situations when a second blood draw for the newborn screening is required and the newborn's family cannot be contacted.  HRPP will call upon one of its CHN to track down the family and get a sample from the newborn. The Perinatal/Infant Health 2020 Annual Report and 2022 Application has additional information on HRPP.

The CYSHCN Program continued to sponsor events, present, and exhibit at conferences to reach and engage families and stakeholders on topics and causes that are of interest, such as youth transition, sensory screening, medical home, care coordination, family engagement/education, cultural humility, early intervention and detection of developmental delays, and health care navigation.  Many of these conferences in 2021 were either postponed or switched to a virtual platform due to COVID-19.

2021 conference participation included:

• African American Conference on Disabilities
• Family Voices Conference
• Maternal and Infant Mortality Summit
• Strong Families AZ Home Visiting Conference
• School Nurses Organization of Arizona (SNOA) Conference
• Family Voices Conference
• MCH Translational Research Conference
• Feeding Matters Conference

The CYSHCN Program continues to collaborate and participate in several workgroups and councils.  The CYSHCN Program serves as active members of these groups and represents the Title V CSHCN Program. In 2021, due to COVID, some of the collaborations, workgroups, and councils experienced a pause in service or a delay in gathering which will be reflected in the number of meetings attended.  Appendix E, CSHCN 2020 Training, Collaborations, Education, and Activities, documents the participation of CYSHCN staff and Family Advisors, Dawn Bailey,  Eadie Smith, and Danielle Crudup, in various workgroups.