The Children and Youth with Special Health Care Needs (CYSHCN) Program is now under the umbrella of the existing structure of the Office of Children’s Health (OCH) and has hired two new staff members.  Laura Luna Bellucci, Chief of the Office of Children’s Health, will oversee all aspects of staff and programming and fulfills the role of Title V CSHCN Director.  Janet Viloria is the new CYSHCN Program Director and Manu Nair is the CYSHCN Program Manager.

Overall, in 2020 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 impacted 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 2020 activities.

Family and Youth Engagement

Family, consumer, and youth involvement, 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.

In 2020, 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. Dawn Bailey participated in a Family Engagement Collaborative through AMCHP that will assist in developing a best practice model for future implementation for our community Family Engagement, including enhanced measurements and impacts to systems of care. Dawn continues to serve on the AMCHP Family Leadership, Engagement and Development (LEAD) Committee and helped with the Family Delegate Guide coming out in 2021 that can help guide our work with current and future Family Delegates.  Appendix F, CSHCN 2020 Training, Collaborations, Education, and Activities, documenting engagements completed by CYSHCN Program Family Advisors, Dawn Bailey and Eadie Smith.

In 2020, the CYSHCN Program continued to enhance Family and Youth Engagement.  The Raising Special Kids contract for Family and Youth Engagement came to its five-year term.  Therefore, as a next step, the Arizona CYSHCN Program team designed a new, revised scope of work for a program entitled, Engaging Families and Young Adults Program.  BWCH will release a request for grant application (RFGA) and select one vendor to carry out a statewide program. In addition, the team designed a Framework for Family & Young Adult Engagement (Appendix G), adapted from the Patient and Family Engagement: A Framework for Understanding the Elements and Developing Interventions and Policies, and a BWCH Family & Youth Engagement Structure (Appendix H).

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 within the Bureau of Women and Children’s Health (see Family & Youth Engagement Structure) and at identified Placement Agencies to be involved in varied projects throughout the Continuum of Engagement.  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 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 and the Family Voices Family Engagement in Systems Toolkit (FESAT) to evaluate the engagement.

The idea is to establish and design a Family and Young Adult Advisor Program that builds on the successes and lessons learned from the Arizona’s Title V Program’s Family Engagement activities within the CYSHCN Program by first expanding this role across BWCH’s offices and programs  and then scaling up to an statewide approach with external partners, with the goal of integrating and institutionalizing family and youth engagement across BWCH, local county health departments, and other community organizations (e.g., 501(c)(3), other state agencies, FQHCs, etc.) across the state.

In an effort to involve and support the families in southern Arizona, 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, is leveraging the evidence-based family leadership training, Partners in Leadership, to be inclusive of CYSHCN beyond developmental disabilities. Additional curriculum, presentations, and speakers providing a broad overview of the needs of CYSHCN is being developed to include information on Arizona systems of care; transition to adulthood across all areas of life; advocacy at local, state, and national levels; navigating changing responsibilities between pediatric and adult systems; and adolescent self-determination and self-advocacy. In 2020, Partners in Leadership training was able to host eight weekend sessions, which included a two-day training. Due to COVID-19, some of the training was held virtually or followed a hybrid model. In 2021, PPSA will include the expanded curriculum and will be part of CYSHCN Program’s advanced family leadership development training for family advisors.

Information and Referral

In 2020, 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 follow-up to families of newborns with Sickle Cell Disease/Trait. Also, in conjunction with the Sickle Cell Foundation of Arizona and the Pacific Sickle Cell Regional Collaborative, the CYSHCN Program has continued working on developing an education and training counselor program in Arizona. CYSHCN Program Family Advisor Eadie Smith continued the Sickle Cell Counselor Training and Certification Program of California and completed sessions in September/October of 2020 (instead of the previous dates of July/August 2020 due to COVID). The CYSHCN Program will continue its partnership with the Sickle Cell Foundation of Arizona, which is in the process of planning for the 2021 Patient, Family, and Community Sickle Cell Conference.

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 2020 Annual Report and 2022 Application have additional information on NBS.

In 2018-2019, the CYSHCN Program and the Arizona Birth Defects Monitoring Program worked closely to re-establish a referral system to ensure support for families and children with birth defects.  The rules governing the state birth defects surveillance system allow direct referral to ADHS’s CYSHCN program, however the actual process had stopped several years ago.  The two programs worked to redesign a more robust and valuable process to ensure families received support at different critical intervals, based on specific diagnoses.  This work was put on hold in 2020 due to staff retirement, organizational restructuring, and the COVID-19 pandemic. Plans are underway to move this work forward in 2021-2022. 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.

Tools and Resources

In partnership with Social Security Income (SSI), the CYSHCN Program updated its process for how SSI eligible applicants receive CYSHCN Program information and resources.  It was decided that the CYSHCN Program would format a letter that 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.  SSI would add this letter in the response package that each family receives when they are accepted for SSI.  This eliminates duplication of efforts and minimizes the amount of returned mail received by the CYSHCN Program.  This revised process is beneficial for SSI as well because it allows there to be a streamlined process and there is no transfer of applicant information to BWCH, which supports confidentiality of records and protected information.  It is agreed that by December of each year, the SSI office will send the CYSHCN Program the annual total of CYSHCN letters provided to families through SSI.  The CYSHCN Program letter was provided to all applicants; children, youth, and young adults with special healthcare needs.  In 2020, through Social Security Income, CYSHCN referral and information was provided to 1,753 families. 

In 2020, there was ongoing work to streamline the Care Coordination Manual (CCM).  It is anticipated that the updated tools for the manual will be available in late 2021 via electronic copy and booklet. The manual will be available to families and provides information on resources, 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.  Approximately 400 CCMs are distributed annually.  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. The manual is also made available to community members and families at conferences and outreach events.

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. In addition, the HCO Toolkit assists youth who are experiencing Transition to Adulthood in being proactive as they learn to make informed health care decisions in collaboration with their family members and medical practitioners. In 2020, 150 HCOs were disseminated to individuals and community providers. The amount of HCOs that were disseminated in 2020 decreased due to the inability to attend/host in-person community events due to COVID-19.

Transition

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, 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 2020, CYSHCN Program continued the following transition projects with community partners:

The CYSHCN Program, in partnership with the Arizona American Academy of Pediatrics (AzAAP), developed a series of presentations focused on transition for CYSHCN. These events are two hours in length and feature physician leadership from Arizona, who are Fellows of the American Academy of Pediatrics, and CYSHCN Program staff.  The first hour of presentations is on “The State of Pediatrics in Arizona: Connecting ADHS and AzAAP'' and the second hour is on “Transition and Children with Special Health Care Needs: Standards for Systems of Care for Children and Youth with Special Health Care Needs.” Continuing Medical Education (CME) credits are provided to attendees.

Transition Policy in Pediatric Practices work began in 2018 and continued in 2020 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 Transitions” 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. In 2020, the program was able to enroll eight providers into the program and began implementing the curriculum with the goal of completing within 24 months.  Once completed, these providers will be able to receive MOC Part 4 Credit for ongoing certification.  In addition, CYSHCN Program was included in a new Transition Care Network, which was created by providers from Phoenix Children's Hospital and Mayo Clinic in collaboration with medical groups throughout Maricopa County. Dawn Bailey, MCH Family Advisor, was invited to participate in a collaborative and provide technical assistance on Got Transition tools and Family Engagement. We saw an opportunity to connect this new network with this project in hopes of expanding providers enrolled in the curriculum.  Two medical groups from the Transition Care Network are now participating in our course. This connection will allow us to reach more people and increase statewide efforts to improve transition.

Of practitioners that received the transition survey, 11.6% responded. Among respondents, 145 (74%) were individual providers, 38 (19.4%) were individual practices, and 10 (5.1%) were from a practice network.  Of the total respondents, just over half (61.9%) had at least a moderate level of familiarity with Got Transition and its healthcare transition processes. However, 87% of practices’ scoring demonstrated a lack of any established formal transition processes. The results of the survey were used to inform objective 2 of the project, which was to identify and recruit critical stakeholders to guide and promote statewide efforts to improve the practice of formal pediatric-to-adult health care transitions in Arizona.

In 2020, although eight providers were originally signed into contract, due to unforeseen circumstances created by the COVID-19 pandemic, some of the providers could no longer participate in the course and the participating practitioners dropped to six. In March of 2020, Module 1 was launched using the Thinkific platform, which was selected due to its various features and highly customizable design. In October of 2020, more course content was added to guide the providers through the implementation process of their newly developed policy. This update was made after insight from practitioners going through the process. The new content will be launched in early 2021. The Got Transition contract with University of Arizona is linked to the Evidence-informed Strategy Measures (ESMs) 12.2 and 12.3.

The CYSHCN Program also worked with American Academy of Pediatrics (AAP) and ArizonaLEND to provide training at conferences to healthcare professionals, community providers, and families on the joint principles of a Medical Home. The presentation was led by Dawn Bailey, Family Delegate, and our program adapted and implemented modules from the Care Coordination Curriculum, supported by the AAP’s Center for Patient/Family-Centered Medical Home and the National Center for Care Coordination Technical Assistance Center out of Boston Children’s Hospital.  This training was implemented in partnership with the Complex Care Clinic at Phoenix Children’s Hospital and engaged families and providers across the systems of care serving children with medical complexity in Arizona. We held one in-person training in January 2020 with approximately 24 people in attendance. Unfortunately, the April session was canceled due to COVID and we did not hold any virtual trainings. There are plans to resume this training in 2022 with some modifications.

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), Arizona Division of Developmental Disabilities (DDD), Arizona Health Care Cost Containment System (AHCCCS), Arizona Rehabilitation Services Administration (RSA), 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 2020, Sonoran UCEDD faced many barriers due to COVID-19, which impacted the efforts and outcomes of the group's research. During 2020, the online survey experienced hacks, which decreased the amount of completed responses. By the end of the year, there were 150 responses, of which 90 (60%) were completed surveys. As part of the survey responses, the project intended to capture the voice of youth still in foster care, but, due to concerns about the survey and protocols, the Research Review Request received a denial from DCS and no current wards of the state were able to participate.

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. In 2020, ADE made the decision to host a virtual conference due to COVID, which impacted the CYSHCN Program participation/support. 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. Moving forward ADE plans on hosting a virtual conference again in 2021 and plans on returning to in-person in fall of 2022.

Inclusion

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.  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, 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.

The Healthy People Healthy Communities (HPHC) IGA is an intergovernmental agreement between ADHS and 12 of the 15 Arizona counties, plus one municipal government. During the previous five-year cycle (SFY2016-SFY2020), Title V funding was provided to the counties through this mechanism for their Title V-funded Family Planning Programs and and efforts within the Health in Arizona Policy Initiative (HAPI) Program to assess and address community engagement with CYSHCN and their families. More information on the Title V Family Planning clinics can be found in Women’s Health. Local health departments that chose to implement the HAPI Program CYSHCN strategies needed to conduct a community engagement assessment focused on MCH and CYSHCN in the first year of the IGA (SFY2016) and then implement an action plan to support at least one practice change to enhance family, youth and community engagement for families with children with special health care needs (e.g., advisory committees, task forces, emergency preparedness, community wellness, transportation, etc.) in subsequent years of the IGA.

Between January and June 2020, in conjunction with the strategies provided, the participating counties and one municipal government worked on the following projects and deliverables for CYSHCN:

• Purchased and donated books focused on inclusion to various schools, families with children with special healthcare needs, libraries, and WIC clinics
• Worked with their local governments to expand entryways into their buildings for wheelchair accessibility
• Updated the Everbridge Emergency Notification System Form to include individuals and families with youth with special healthcare needs and shared within their communities
• Participated in various advisory board meetings focused on children and youth with special healthcare needs
• Created virtual and in-person meetings and events focused on Transition
• Updated the County websites with CYSHCN resources for children/youth with special healthcare needs, caregivers, and families
• Worked on developing a section of a Community Health Assessment that was focused on children and youth with special healthcare needs
• Conducted countywide Needs Assessments for CYSHCN
• Worked with advocacy groups to make their communities more inclusive

In July 2020, ADHS initiated a new five-cycle of the integrated IGA with the local county health departments. The HPHC IGA continues but no longer includes Title V funding. All Title V funded activities (MCH and family planning/reproductive health) are now in a separate MCH Healthy Arizona Families IGA (MCH HAF IGA). More information on the MCH HAF IGA can be found in the Cross-Cutting domain of this application.

In an effort to increase access to quality care, CYSHCN Program contracted with Northern Arizona University (NAU) 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 centers in northern Arizona participated in the model during 2020, 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 closed in mid-March 2020 and remained closed through December 31, 2020 (with the exception of Immaculate Conception, which reopened in August 2020, and experienced occasional closures through December 2020 due to COVID-19 cases among the school population).  In March 2020, due to the COVID-19 pandemic, 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.  The Pilot Project’s 2020 shift to capacity building 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 CYSHCN Program continued to fund 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 2020, over 1,100 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.

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.

Gap-Filling Services

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 2020 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 2020, Phoenix Genetic Program of Phoenix Children’s Hospital provided metabolic formula to 39 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 2020, the program provided services to 75 individuals 21 years of age and older with cystic fibrosis.

The CYSHCN Program, through a 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 2020, Ryan House provided care to 40 families.  In addition, through continued partnership with the Ronald McDonald House Charities of Phoenix and Southern Arizona, the CYSHCN Program provided 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. In 2020, Ronald McDonald House provided a total of 919 nights of accommodation for families of CYSHCN obtaining hospital care in the Phoenix and Tucson metropolitan areas.

The CYSHCN Program continued 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 2020, 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 2020, the COVID-19 pandemic caused the closure of Arizona schools. Because of this, school nurses are having limited interactions with students and MSP has seen a reduction in referral numbers. However, school nurses still make up the highest number of referrals (57%) 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 2020, MSP received 598 applications for health care services; 205 of those applicants were identified as children with special health care needs. A total of 584 referrals were made for specialty care and 14 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.

Eighty-seven (87) families requested insurance assistance resources offered through the program. MSP staff continued to place an emphasis on educating 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 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 can not be contacted.  HRPP will call upon one of its CHN to track down the family and get a sample from the newborn. Only one event was documented in 2020.  Between January 2020 and December 2020,  HRPP administered 350 National Children's Health Surveys. From the survey, 68 HRPP participants were identified as having a special health care need. A total of 17 participants with special health care needs were enrolled in HRPP between January 2020 through December 2020, and 32 visits to families with a child with special health care needs were completed during the same time frame. The Perinatal/Infant Health 2020 Annual Report and 2022 Application has additional information on HRPP.

Conferences and Events

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, 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 2020 were either postponed or switched to a virtual platform due to COVID-19.

2020 conference participation included:

• ADE Early Childhood Summit
• African American Conference on Disabilities
• AMCHP Public Forum: Best Practices call
• Annual Pacific Sickle Cell Regional Collaborative Meeting
• AZ EHDI Latino Community Conference
• Care Coordination Curriculum Training
• Cross-Cultural Health Care in Unprecedented Times
• Family Voices Convening Sessions
• Maternal Health Summit
• Nevada Sickle Cell Symposium
• Partners in Preparedness Conference
• Sickle Cell Counselor Training and Certification Program
• Strong Family Conference

Workgroups and Councils

The CYSHCN Program continues to collaborate and participate on several workgroups and councils.  The CYSHCN Program serves as active members of these groups and represents the Title V CSHCN Program. In 2020, 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 amount of meetings attended.  Appendix F, CSHCN 2020 Training, Collaborations, Education, and Activities, documents the participation of CYSHCN staff and Family Advisors, Dawn Bailey and Eadie Smith, in various workgroups.