Arizona’s economy and communities thrive when every child has a safe and permanent place to call home, affordable health care coverage, and great learning opportunities from birth through high school and beyond. Today, more than 6 in 10 children in Arizona are Latino, African American, or American Indian. These children of color are leading the way to Arizona’s future, yet they are more likely than their white peers to lack the fundamental supports for growing up healthy and strong.

Through our national history of economic and social discrimination, children of color in Arizona and around the nation experience much higher rates of poverty than white children. In 2016, 13 percent of white children in Arizona lived in poor families compared to more than one-third of Latino and American Indian children. Growing up poor can severely limit access to good health, education and safe and stable neighborhoods. This builds more barriers to educational success and healthy transitions to adulthood.

In Arizona, between 2009 and 2016— from the end of the Great Recession through the years of the slow and uneven economic recovery over 7 years, the percentage of children living in poverty rose to 25 percent statewide and grew in 12 counties.1 In 2016, half of all children were living in low income neighborhoods (below twice the federal poverty level). The data show us that family work effort remained high. While parents’ work participation grew and the unemployment rate declined, median annual income for families with children dropped by $5,700— giving families less buying power.1 Family’s economic struggles shaped the lives of hundreds of thousands of Arizona’s children. Low family income is linked with so many other risk factors, including moving frequently to new neighborhoods and new schools, inadequate health care, low educational attainment, higher rates of abuse and neglect, and increased levels of stress.

Older adults who take custody of their grandchildren are more likely to be poor. About two-thirds of these families live in households with incomes less than 200 percent of the federal poverty line.1 Grandparents in these families are less likely to be employed, less likely to receive help with child care and more likely to suffer from physical disabilities and chronic health problems. These grandparents experience higher levels of stress compared with other grandparents and are more likely to face mental health and financial problems.  Children raised by grandparents are more likely to experience challenges as well. Because they are often living in an unofficial arrangement, they are less likely to qualify for social services, and are more likely to experience emotional and behavioral problems.

The tremendous advances in pediatric health care over the past several decades have created a new challenge for those who care for children. While a growing number of children survive previously fatal illnesses, many of them now live permanently with complex chronic conditions. Unfortunately, our health care systems currently are not organized to provide optimal long-term care and services for these children and their families.  Families typically find that ongoing care for a child with complex needs involves a series of discontinuous, uncoordinated, and costly services and programs.  Lack of communication among providers, limited access to pediatric subspecialist, care that is disease specific rather than holistic, and multiple sources of provider reimbursement all contribute to this fragmented care.  The result often is adverse health outcomes for children, tremendous strain on families and increased costs for families and the health care system.2

The Office for Children with Special Health Care Needs does not provide direct services to families with children and youth with special health care needs (CYSHCN), however, some Title V funds are used for gap filling services such as metabolic formula, respite and palliative care for families with CYSHCN.  OCSHCN focuses its efforts to accomplish the mission of improving the systems of care for families with CYSHCN by promoting family centered, community-based, coordinated care; collaborating and partnering with community stakeholders to provide population health enabling services in broad categories based on the needs of the community in order to improve the health outcomes of children and youth.  We work together to “move the dial” on critical issues that matter most.

OCSHCN maintained its critical Title V role in key areas such as Information and Referral, Education and Advocacy, Policy, and Systems of Care for CYSHCN. We find common ground across generations and agencies, working toward the day when all children in Arizona will have a safe place to call home, educational opportunities, and the health care and stability they need to grow up strong.

 

INFORMATION AND REFERRAL

Families of children with special health care needs (CSHCN) are embedded in multiple systems of care that include health insurance plans, public support, community-based programs, education and a variety of specialized providers. OCSHCN staff provided information and referral services for families with children with special needs from birth through 26 years of age.  In order for families and individuals with SHCN be included in receiving and understanding information regarding services or resources, OCSHCN provided for needed interpreting/translating services whether  in Spanish, American Sign Language (ASL) or CART.

Children’s Health Information and Referral Services Help Line –OCSHCN continued to support the BWCH Children’s Health Information and Referral Services Help Line by responding to inquiries about insurance options, navigating systems of care, eligibility requirements for various services, community resources, appeals processes, and educational support for families and professionals via telephone, email and in-person. The most common request from families was for programs that could help with financial need to help pay for a service or for their child.

Supplemental Security Income (SSI)—Approximately SSI letters were sent to families of child applicants, more accurately targeting referrals to Medicaid and other services dependent on the applicant’s conditions or needs for services.

Sponsorships and Exhibits—OCSHCN sponsored events and exhibited at various educational conferences in order to reach and engage families, community providers, and stakeholders on topics and causes such as youth transition, sensory, medical home, care coordination, home visiting, healthcare professionals trainings, family engagement/education, cultural humility, early intervention and detection of developmental delays, and managing health through the use of the health care.

 

GAP FILLING SERVICES

Children without health insurance coverage are less likely than insured children to have a regular health care provider and to receive care when they need it. They are also more likely to receive treatment after their condition has worsened, putting them at greater risk of hospitalization. Having health insurance can protect families from financial devastation when a child experiences a serious or chronic illness.” However, we know that CYSHCN require services more than typical kids.  Not all families have insurance that covers the additional costs, such as extra copays, therapies above what the family’s insurance plan covers.1

OCSHCN partnered and collaborated with healthcare and community based organizations for gap filling services by paying directly through some form of third-party coverage, for at least a portion of the costs of providing services based on a cost-sharing system and underinsured or uninsured.

Medical Services Project—Arizona American Academy of Pediatrics—OCSHCN partnered with the Arizona Chapter of the Academy of Pediatrics through  the Medical Service Project to increase the network of pediatric providers and pediatric subspecialists statewide willing to take a limited number of patients without insurance or AHCCCS, to ensure that Arizona’s children have necessary acute health care.

Metabolic Formula—OCSHCN contracts with CVS Coram - Preferred HomeCare to provide a provision of prescribed metabolic formula for adults and children who have a metabolic disorder requiring dietary manipulation using metabolic formula for uninsured or underinsured individuals.  The metabolic formula is provided at no charge. Preferred HomeCare works with the Phoenix Genetic Program of Phoenix Children’s Hospital in identifying new patients who need metabolic formula and who continue to need formula.

Cystic Fibrosis Services--Arizona Revised Statute 36-143 mandated the Department of Health Services through OCSHCN to develop and conduct a program of care and treatment without cost to uninsured and underinsured residents of Arizona, 21 and older with cystic fibrosis.  OCSHCN contracted with the Phoenix Children’s Hospital to provide for the care and treatment of individuals living with Cystic Fibrosis.

Respite and Palliative Care—Ryan House—OCSHCN through a contract with Ryan House provided 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 (age birth to 16). This care is provided by highly trained medical and child life staff.

Affordable Housing—Ronald McDonald Charities—OCSHCN‘s long standing partnership with the Ronald McDonald House Charities of Phoenix and Southern Arizona 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.

 

FAMILY AND YOUNG ADULT 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.

The importance of “seeing systems through the eyes of families, consumers and youth” has been underscored by many at the national level, as well as here in Arizona.  Family, consumer and youth involvement provides the State with an opportunity for direct dialogue regarding consumer-defined strengths or barriers that impede efficient and effective services (quality of care).

OCSHCN developed partnerships with state and local systems that have incorporated “family voice” into system and policy decisions to ensure that services and supports meet the needs of youth and families.

Building Partnerships for Quality Care--Raising Special Kids, Family to Family Information Center —OCSHCN through its contract with RSK continued to increase the proportion of families of CYSHCN who partnered in decision making. The contract with Raising Special Kids facilitated the identification, recruitment, training and reimbursement for Family and Young Adult Advisors, to participate in ADHS and OCSHCN projects, committees, workgroups, resource development, policy and program development implementation through presentations to help improve best practices related to our systems of care, and evaluation at national, state and community levels. Examples of family, consumer and youth are discussed further in the Family Involvement section of the annual report.

Healthy Arizona Policy Initiatives—OCSHCN through its collaboration with counties participating in the Integrated IGA-Healthy Arizona Policy Initiative (HAPI) grant continued to work with counties in developing and working on strategies that promote inclusion of CYSHCN in policy decisions affecting them and their families in their local communities.  Of the 15 counties participating in the integrated IGA, Yuma and Navajo counties have really involved their families in decision making and informing community providers of how to work with children with special health care needs such as those with Autism.

 

EDUCATION AND ADVOCACY

 Education and advocacy for children and individuals with special health care needs is vitally important for a number of reasons; it can draw attention to an injustice or unfairness of a government/health policy, it can help those who are slipping through the system to be recognized, and receive access to special needs resources, and it can even unite people to fight for a common cause.  OCSHCN continues to provide education and training to families, through outreach efforts at conferences, trainings, summits, to build their advocacy skills and also provide education to healthcare professionals and community providers on best practices focused on family–centered care; cultural competence; medical home; pediatric to adult transition, and technical assistance in the development of best practices for CYSHCN.

Health Care Organizer (HCO)—OCSHCN’s HCO is intended to assist families of CYSHCN in managing the complex and multiple sources of information, services, treatment, and medical & behavioral health providers. The organizer promotes effective advocacy and partnering with health care professionals.  This year individuals and community providers were trained in the use of HCO binders to distribute, educate, and work with families and Youth with Special Health Care Needs (YSHCN) in managing the important documents regarding their health.  The forms included in the HCO are to assist individuals in creating their medical and dental profile, such as medical history, list of prescriptions, immunizations, past doctor visits, results of tests, etc.

The Next S.T.E.P. in the Glendale Unified High School District shared how they use the HCO with their high school students.

Lisa Czaja with Next S.T.E.P. attended the workshop that our young adult advisors presented at the 2018 Transition Conference on their use of the HCO. She was impressed at the presentation and took right away 75 HCOs for their use. She has requested another 75 to work with the new students coming in.

The class that they use it in is a Life Skills class. Health Care is a huge part of the classroom learning and the teachers absolutely LOVE the HCO. They even made a place in it for students to carry their Resume.

The majority of the students, ages 18-22, are SLD but 80% do not qualify for DDD or ALTCS. The remaining 20% are typically placed in Day Programs. So these truly are the students that fall through the cracks or get overlooked by many programs. This class is done in partnership with Vocational Rehabilitation and the students are employable.

Care Coordination Manual (CCM)—Care coordination is a vital component in the care of children and youth with special health care needs.  Having the right start-up tools provides a great foundation on which to build a care coordination model that fits the unique needs of a practice and its patients. The materials in this manual provide practical solutions to create a highly efficient, streamlined and organized care coordination process.  The CCM contains resources including an overview of systems of care with eligibility requirements, transition to adulthood help, as well as examples of letters of medical necessity. The manual can be used by any individual who is interested in improving the care provided to children and youth with special health care needs.  OCSHCN provided over 500 copies of the CCM in various formats to families and providers.

We continue to explore the possibility of developing a Care Coordination Mobile App that will help families to access their child’s health information online or on their mobile devices.  At this time, the cost to develop an app that is free for families to use and compatible with the multiple EHR systems will take many years to develop.

Care Coordination for Children with Complex Medical Needs—Take ACTion for Children--Children with medical complexity (CMC) need an overwhelming array of coordinated medical, educational, social, and supportive care services. CMC are characterized by substantial family-identified health care service needs such as medical care, specialized therapy, and educational needs. The service needs’ have a significant impact on the family unit, specifically time devoted to direct care, frequent provider visits, care coordination, and financial burden. The type, intensity, and consistency of these manifestations may change dynamically over the life of the child depending on a variety of medical, psychosocial, and community factors. Yet, the major burden of care coordination (CC) falls to parents; 75% indicate they are alone in this challenge.

OCSHCN partnered with Arizona State University School of Nursing and physicians from Phoenix Children’s Hospital in a PCORI Engagement Award.  During this project, we heard repeatedly that the most significant and frustrating challenges for parents are communication with and across multiple agencies and lack of being informed and prepared for critical landmarks in their child’s eligibility for services.  As we held forums across the state of Arizona with families, representatives from provider groups, insurers, government organizations, schools, and other community resources, they confirmed that lack of communication among agencies in the system of care was the most frustrating.  While some of these important stakeholder groups are taking action to address these challenges, they continue to do so largely in isolation from one another.  We heard comments about current fragmentation and the recognition of immediate need for improvement such as this quote from a representative from an insurance group:

“We’re the insurers, they’re the providers.  We need to fill in the gaps more deliberately to improve care.”

As a result of the lessons learned from PCORI Engagement Award, OCSHCN in collaboration with Dr. Wendy Bernaviticus, Pediatric Palliative Care Physician and Dawn Bailey, AMCHP Family Advisor has adopted the Boston Children’s Care Coordination training curriculum for caregivers and families and will be adapting the curriculum for future training of community providers and families.  Our objective is to:  Build capacity of parents and extended family as well as parent support groups to communicate and advocate regarding key issues in accessing and using the services for their children with complex care needs. Build capacity of insurers, health systems, durable medical equipment (DME) providers, schools, to understand and critically analyze issues regarding its members accessing and using the services for CMC.  Educate all involved parties/stakeholders about care coordination as a strategy to bring together parent problems and system ability to design and evaluate improvements.

Asthma Community of Learning—OCSHCN partnered with the Arizona Lung Association (ALA) in a systems-change project that utilized a collaborative approach to implement systems that support and sustain adherence to the National Heart, Lung, and Blood Institute (NHLBI) asthma guidelines in partnering clinics.

ALA provided Provider Asthma Care Education training and technical assistance to a cohort of two pediatric practices in the Phoenix Metropolitan area over several sessions on the correct use of spirometers, improving their rooming of patients, and daily management and emergency care needs of children with chronic respiratory disease.  The cohort continues to meet and we hope to have meaningful data regarding the changes to each of these practices as a result of the education and technical assistance provided.

Sickle Cell Disease/Trait—OCSHCN in collaboration with Family Advisors and the Sickle Cell Foundation of Arizona and the Pacific Sickle Cell Regional Collaborative continues to work on developing an education and training counselor program for volunteers to be referral resources in the community for families to learn about Sickle Cell Disease/Trait.

Bullying Campaign—OCSHCN partnered with the Office of Women’s Health on a bullying prevention campaign (MustStopBullying.org).  The purpose of the partnership was to develop a coordinated approach to addressing bullying as an important public health issue; and to bring awareness that parents and kids can address the issue of bullying in different ways, but we can all work together to help stop bullying; to empower the” bystander” to do something and stop the bullying.

Education/Training/Presentations—OCSHCN sought opportunities to provide presentations at important conferences and events such as the Arizona Home Visiting Conference hosted by First Things First, the Arizona Department of Special Education Transition Conference, Early Head Start, and to pediatricians and other healthcare professionals at the Pediatrics in the Red Rocks Conference.

ZIKA Registry—OCSHCN continued to work with the Office of Infectious Disease in preparing for possible cases of Zika virus in pregnant women by providing appropriate information, resources and service linkages to families through the Zika Registry.  One case has been identified of a mother exposed to Zika and the infant was born with no birth defects; however the infant continues to be followed to detect any delays in developmental milestones.

Emergency Guidelines for Schools—The Guidelines are an important resources meant to provide recommended procedures for school staff to use who have little or no medical/nursing training when a registered school nurse is not available to care for CSHCN and non CSHCN.  OCSHCN had the guidelines translated into Spanish for use in schools with high population of Spanish speaking staff.

 

POPULATION HEALTH

Supporting health systems and leveraging other federal funding such as community health centers, Healthy Start, WIC, autism, SCHIP and Medicaid. The Title V MCH Block Grant invests in needs assessments, planning and policy development, quality assurance and standards development, training, collection of healthcare data and analysis, and development of information systems that complement health care services and promote prevention for all populations. Close coordination with other health programs assures that funding is maximized and services are not duplicated.

CSHCN Screener Questions—Public agencies, health care plans and providers, and consumer organizations share the need to identify and monitor the health care needs and quality of care for children with special health care needs (CSHCN). Not only do CSHCN consume the majority of healthcare dollars spent on children, their requirements for health services make them particularly vulnerable to access, cost, quality, and coverage weaknesses in the health care system.  With regard to CSHCN, monitoring their health care needs, quality of care, and the impact of changes in the organization and delivery of health care requires that we first identify those CSHCN.

OCSHCN adopted from the National Survey of Children’s Health the “5 CSHCN Screener” survey.  CSHCN Screener consists of 5 question sequences, each of which asks about a specific health consequence. Parents who respond ‘‘yes’’ to any of the 5 consequence questions are then asked up to 2 follow-up questions to determine if the consequence is  attributable to a medical, behavioral, or other health condition lasting or expected to last at least 12 months. The 5 health consequences queried include whether the child 1) is limited or prevented in any way in his or her ability to do things most children of the same age can do; 2) needs or uses medications prescribed by a doctor (other than vitamins); 3) needs or uses  specialized therapies such as physical, occupational, or speech therapy; 4) has above routine need or use of medical, mental health, or educational services; or 5) needs or receives treatment or counseling for an emotional, behavioral, or developmental problem. Only children with positive responses to one or more items and each of the associated follow-up questions qualify as having a special health care needs.

The brevity and flexible administration of the CSHCN Screener is more viable than existing screening instruments for standardized use in identifying CSHCN for a variety of purposes, including public health monitoring, health care quality assessment, and program planning and evaluation.

OCSHCN promoted the inclusion and use of the CSHCN Screener questions across all BWCH programs such as oral health, home visiting, Community Health Nursing in High Risk Perinatal Program (HRPP)/Neonatal Intensive Care Program (NICP),domestic violence, injury prevention, Behavior Risk Factor Survey (BRFS), Youth Risk Behavior Survey (YRBS).   The use of the CSHCN Screener has also been promoted in our collaborations with the county public health agencies as they conduct their community health assessment (CHA).  La Paz County has incorporated the questions into their CHA.

Special Health Care Need Data—OCSHCN collected and made available to stakeholders’ population health data, especially in the areas of Sickle Cell Disease/Trait, hearing and vision screening data, to help inform and drive decisions for families with CYSHCN.

Sensory Program— Arizona Revised Statutes (A.R.S.) § 36-899.01 requires a program of hearing evaluation services managed by the Department, Office for Children with Special Health Care Needs. While the department has statutory authority for conducting hearing screenings of school age children there is no mandate for vision screening of these children.  It is essential that vision screening be included as part of the early developmental screening and detection of children.

OCSHCN’s Sensory program provided hearing and vision loaner equipment to 500 schools, and trained over 400 individuals to be hearing and vision screeners.  In 2018, staff in over 1,800 public, private and charter schools followed the hearing screening guidelines and screened approximately 580,000 children for hearing conditions.  The results were over 1,200 children were identified with a hearing condition.  Over 1,740 early childhood education, preschool, kindergarten and 6th grade schools conducted vision screenings.

 

  INCLUSION

Healthy Arizona Policy Initiative (HAPI)—OCSHCN through its collaboration with counties participating in the Healthy People Healthy Communities Integrated IGA -Healthy Arizona Policy Initiative (HAPI) grant worked with 13 counties to develop strategies that promote inclusion of CYSHCN in policy decisions affecting them and their families in their local communities, and to develop strategies for helping youth to transition to adulthood.

Positive Behavior Intervention Support (PBIS)— OCSHCN in its efforts to increase inclusion and access to quality care for CSHCN, especially those children with emotional and behavioral conditions worked with Northern Arizona University (NAU), First Things First and Coconino and Yavapai County Health Department to continue the pilot “Pyramid Model a Positive Behavior Intervention Support (PBIS)” model for childcare professionals in managing difficult behavior and promoting social emotional well-being and prevent challenging behaviors among young children.  Cohort 1 participants, Siler and Ponderosa Head Starts, two of the original classrooms at the Cottonwood Head Start, and Little Ropers Child Care continued to work on establishing fidelity at Tier 1 of the Pyramid Model. Immaculate Conception Preschool in Cottonwood participated in Tier 1 training.

Anecdotal reports, while not conclusive of the effectiveness PBIS, does provide information about how the teachers perceive the project’s impact on the work they do relative to the model. The following is an example of what project staff heard this year.

A center director reported that at the beginning of the school year, three children had behaviors significant enough to cause several parents to complain and threaten to pull their children from the program, effectively doing a reverse expulsion. The director talked to the concerned parents, explained that the center is participating in the Pyramid Model and that challenging behaviors are being addressed through implementation of the model. The parents agreed to keep their children enrolled and there have been no complaints since then. (See Attachment A – NAU-IHD-The Pyramid Project.)

Child Care Group Home—LMS Inclusion Course—In 2016-17, OCSHCN collaborated with the Bureau of Nutrition and Physical Activity (BNPA) to conduct surveys of Child Care Group Homes (CCGH), to understand the barriers parents face in finding child care for their child with a SHCN.  The Provider’s Views on Caring for CSHCN results suggested that there is room for improving how the providers perceive the work, experience needed in caring for CSHCN.

As a result, OCSHCN worked with the EMPOWER program, to develop an online learning module as part of the Learning Management System (LMS).  LMS course is posted on the EMPOWER website and to date 209 reviews of the course by child care providers has occurred.  The course provides a basic overview of the inclusion of children with special health care needs and disabilities in early care and education settings:  Inclusion, the basics of caring for children with SN, working together with parents of children with SN, providers recognizing children who might have specific SN, and caring for specific health conditions, disabilities, or other health concerns; creating processes and protocols designed to match parents of children with SN and CCGH providers. The 45 minute course with interactive elements to check knowledge throughout the course explains the rationale for inclusion as well as examples of implementation.                     

 

TRANSITION

Transitioning from pediatric to adult healthcare especially for children with special health care needs (CSHCN), has been an important metric for the US health system for many years, but only has received increasing attention in the last decade.  The Maternal and Child Health Bureau (MCHB) has included transition for youth with special health care needs as a core outcome for primary care beginning with Healthy People 2000 and reiterated in the 2010 and 2020 releases.  A review of the 2016 National Survey of Children with Special health Care Needs revealed only 23% of children with special health care needs received services necessary to make transitions to adult health care.  Concerted efforts by several associations were made in 2011 to increase national efforts to transition these youth into adulthood including the American Academy of Pediatrics, the American Academy of Family Physicians, the American College of Physicians, the Committee on Quality Assurance as well as all federal agencies through the Affordable Care Act.

The 2015 Needs Assessment process made it clear that families were concerned about the transition of children and youth with special health care needs across the life span, not solely the transition to adulthood.  Families voiced concern and this is supported by the data, that children and youth are often seen as their ‘condition’ or ‘disability’ and are not supported in daily wellness activities and programs. To that end, the Office for Children with Special Health Care Needs (OCSHCN) has been working to improve the overall health of CYSHCN and access to appropriate care for children and youth with special health care needs.

Transition Policy in Pediatric Practices – AZ LEND Program OCSHCN has embraced the “National Consensus Standards for Systems of Care for Children and Youth with Special Health Care Needs" model developed by AMCHP and the Lucile Packard Foundation; and has moved forward with its objectives and strategies to increase CSHCN services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence.

OCSHCN is working in conjunction with the AZ LEND Program to: 1) evaluate the current proportion of practitioners in Arizona who have a formal transition policy; 2) determine the impact of existing transition policies; and 3) develop and pilot a transition implementation program to assist practitioners without policies to incorporate transition into regular practice. The work plan includes preparation of an evaluation plan, data collection instruments, stakeholder involvement and a pilot training program.

To-date AzLEND has surveyed family and pediatric practices to determine the practices that have policies in their practice to assist youth in transitioning to adult health care. The ultimate objective will be to develop a plan for developing understanding, emphasizing importance, and implementing policy with sustained practice for transitioning YSHCN into adulthood across the state.

ASPIRE Project—OCSHCN provided Health Care Organizer training case managers working to assist transition age youth, who receive Supplemental Security Income in the ASPIRE (Achieving Success by Promoting Readiness for Education and Employment) program, to help move the youth toward employment.

Arizona Department of Education - Annual Transition Conference –OCSHCN continued to support scholarships for youth and family members/caregivers to attend the annual Arizona Department of Education Transition Conference. Arizona’s Annual Transition Conference is a collaborative, cross-stakeholder, professional development for state and local Special Education Directors, Education Specialist, Teachers/Professors, School Psychologists, Secure Care Education Personnel, College and University Disability Resource Services Personnel, and Adult Service Agency Personnel, youth, young adults and family members aimed at providing meaningful and pertinent information needed in the transition-planning process for youth and young adults with disabilities. Session content is structured around three (3) topical strands: (1) strategies for enhancing youth success, (2) family involvement, and (3) interagency/community collaboration.

Adolescent Wellness Champion Model—Families continue to voice concern that children and youth are often seen as their ‘condition’ or ‘disability’ and are not supported in daily wellness activities and programs. To that end, OCSHCN has been working to improve the overall health and access to appropriate care of CYSHCN.

Adolescents are a uniquely vulnerable patient population with health care needs that differ greatly from other age groups. While they are less likely to access critical primary care services than any other age group and more likely to engage in high risk behaviors – including sexual activity, substance abuse, interpersonal violence, and suicide – less than 20% of adolescents receive recommended screening and counseling on risky behaviors from their healthcare provider.  CYSHCN represent a subset (20%) of that adolescent population. Even when adolescents do seek health services, health care professionals and practices are not always equipped to meet the needs of this population.  National surveys of physicians, nurses, social workers, and other health professionals have identified gaps in self-perceived skills, competencies, and training related to adolescent health.

OCSHCN worked in collaboration with staff at the University of Michigan, System Model Adolescent Health Initiative, to incorporate some of the transition strategies into a learning module called a “SPARK” to help guide physicians and other healthcare professionals in meaningful engagement with CSHCN.  A full description of the Champion Model can be found in the Adolescent Report and application.

Arizona Community of Practice on Transition (AzCoPT)— OCSHCN was an active and involved member in the Arizona Community of Practice on Transition (AZCoPT), a partnership among the Arizona Department of Education, Rehabilitation Services Administration, Division of Developmental Disabilities, AHCCCS, Raising Special Kids, and Tribal Vocational Rehabilitation Services including two Young Adult Advisors, to promote collaboration among agencies, nonprofits and other stakeholders to assist youth in transitioning to adulthood. OCSHCN’s participation as a team member ensures that the healthcare needs of YSHCN are considered in school and post school transition plans.

The AzCoPT Arizona Transition Leadership Team ATLT provides a mechanism for creating a statewide structure for youth with special health care needs (YSHCN) to receive supports and services early enough to develop skills and knowledge that assist them in voicing choices about the acquisition of academic, vocational, and social skills, real work opportunities, achieving economic self-sufficiency, and sustaining healthy and satisfying adult lives to assist youth in transitioning to adulthood.

The ATLT created a statewide support structure that includes the active involvement of family and YSHCN.  This structure promotes organizational collaboration among twenty-five (25) community, and state agencies or organizations of which OCSHCN along with the Arizona Department of Education, Rehabilitation Services Administration, Division of Developmental Disabilities, AHCCCS, Raising Special Kids, and Tribal Vocational Rehabilitation Services including two Young Adult Advisors.  Members work to promote collaboration among agencies, nonprofits and other stakeholders to assist youth in transitioning to adulthood.

Arizona Youth Leadership Forum (AzYLF)—The Arizona Youth Leadership Forum (AZYLF) for Students and Young Adults Who Have Disabilities held two forums during the year.  OCSHCN provided support to the Arizona Youth Leadership Forums by providing health care organizer binders for the young adults to receive training in managing their health. The youth in return were asked to present the results of using the HCOs at the 2018 Arizona Department of Education Transition Conference.

 

POLICY INITIATIVES

OCSHCN increased its advocacy and involvement in policy development for families with children and youth with special health care needs, to bring awareness of the needs and concerns of CSHCN to the councils, coalitions, advisory boards, etc.  Below are highlights from some of the initiatives.

Hearing Evaluation Services—Revision of the Arizona Revised Statutes (A.R.S.) § 36-899.01 A.R.S. § 36-899.02, Hearing Evaluation Services were developed this year.  The rules provide for systematic screening by Arizona’s public, private and charter schools of the student population (preschool through grade 12), allowing for early identification of hearing loss and appropriate intervention to eliminate or reduce the effects to a child’s learning and development.

OCSHCN changed the rules to: add new definitions; update outdated screening requirements, screener qualifications, terms and definitions; 6 new Sections were established that include standards and regulations for trainer eligibility; instruction, examination, and observation; certificate of completion; continuing education, and renewal for individuals who wish to be a hearing screening trainer and trainers who wish to renew their certificate of completion.  The intent of the Rule revisions was to make hearing screening criteria and requirements consistent with current national standards and best practices; and simplify hearing screening population, notifications, records and reporting, and equipment standards.  Approximately 100 stakeholders provided their input regarding revision of the Rules either in person or online. 

Eyes on Learning—The Eyes On Learning (EOL) Vision Coalition is comprised of state, local, and national organizations that share a commitment to vision health and learning success for all Arizona children. OCSHCN is a member of the Advisory Board.  EOL is dedicated to making sure that children with vision problems are identified early and receive an eye exam and follow-up treatment to achieve better vision health.  The Coalition worked to affect policy by introducing legislation mandating vision screening of children in schools.

Arizona’s Comprehensive System to Meet the Developmental Needs of Children—OCSHCN has been actively involved developing a high-quality early childhood system that supports the development, health and early education of all Arizona's children birth through age five.

Members of Councils

OCSHCN staff and Family and Young Adult Advisors were active and contributing members of councils, advisory boards, and committees, to promote and ensure the inclusion of children with special health care needs in policies and processes developed systems of care impacting families.

Interagency Coordinating Council, First Things First Children’s Health, Children’s Action Alliance on Children’s Health, ASPIRE, TakeACTion for Children with Medical Complexity, Northern Arizona University CAC, EHDI, NCHAM Advisory, Empower Advisory Council, HRPP Planning Committee, Newborn Screening Partners, Emergency Preparedness, Arizona Pediatric Disaster Coalition, Arizona Developmental Disabilities Planning Council, Navajo County Advisory Council, Eyes on Learning Advisory Committee, and Improving Children’s Vision.

 

SYSTEMS OF CARE COLLABORATION

Supporting health systems and leveraging other funding such as community health centers, Healthy Start, WIC, autism, SCHIP and Medicaid, the Title V MCH Block Grant invests in needs assessments, planning and policy development, quality assurance and standards development, training, collection of healthcare data and analysis, and development of information systems that complement health care services and promote prevention for all populations. Close coordination with other health programs assures that funding is maximized and services are not duplicated.

Mountain States Genetics Regional Network (MSGRN)—OCSHCN participated in the Mountain States Regional Genetics Network’s Underserved Project, focusing on facilitating access to genetic services for underserved populations on tribal lands in Arizona and New Mexico.

Early Intervention and Developmental Screening—Interagency Coordinating Council (ICC)—OCSHCN will continue to participate in the Governor’s Interagency Coordinating Council (ICC) on Infants and Toddlers, a federally mandated advisory council for the Arizona Early Intervention Program (AzEIP); and will continue to assist AzEIP in developing family friendly resources and updating forms related to insurance and funding for AzEIP services.

HRPP Community Health Nursing—OCSHCN supported the High Risk Perinatal Program / Newborn Intensive Care Program (HRPP/NICP) in several ways. OCSHCN funded a portion of two FTEs in the HRPP/NICP program and funded community health nurse visits to CSHCN who are identified as a result of a NICP home visit. The funds allow for six months of follow-up and are intended to guide families to needed care and community resources.

Newborn Screening Program—OCSHCN partnered with the Newborn Screening Program to educate and inform families regarding the results of the newborn screening panel that may impact their newborn/infant.

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

 

Sources:

1.  Children’s Action Alliance. Arizona Kids Count Databook.; 2019. http://azchildren.org/wp-content/uploads/2019/02/KIDS-Count-2019-final-web.pdf. Accessed July 9, 2019.

2.  Johnson T. Improving Systems of Care for Children with Special Health Needs.; 2017. http://www.ncsl.org/documents/health/ChildrenSpecialNeeds17.pdf. Accessed July 9, 2019.