Children and Youth with Special Healthcare Needs
Plan for the application year: Oct 2023 - Sept 2024
The NPM for the CYSHCN Domain is the percent of children with and without special health care needs having a medical home. This NPM reflects WCFH work to improve access to health care, including continuous, coordinated services that provide both preventive care and specialized treatment for CYSHCN. In addition to access to medical and specialty care, the needs assessment also identified child abuse and neglect as an area of concern for CYSHCN. When children receive care in a medical home, meaningful relationships can be established with health care providers. Through these relationships, medical and social needs of a child can be addressed, thereby increasing a child’s chance of growing up in a safe, stable, and nurturing environment.
The ESM for this domain, number of CYSHCN, their family members, health care and community professionals who complete trainings for the first time on various healthcare topics and report a change in knowledge after the training, aims to improve engagement and consistency in healthcare services for CYSHCN. By increasing knowledge and understanding of healthcare systems, prevention and treatment needs, patients, families, and providers can be better prepared to partner for care. Education can also improve the quality and cultural responsiveness of care and create positive patient, family, and provider relationships. This in turn can improve patient and family healthcare experiences and increase access to care.
11.1: Promote statewide coordinated intake and referral services (CIRS) for families and primary care providers of CYSHCN.
The Early Childhood Coordinated Systems (ECCS) grant first received by WCFH in 2018 enabled the state to begin developing a CIRS in three Alaska communities using the Help Me Grow National model. Since then, this service has expanded statewide and has changed from being early childhood and developmental screening focused to serving 0-26 years, offering resources and care coordination services to families to improve access to medical and specialty care. Medical providers are also supported by the CIRS through education that increases their knowledge and access to resources used to assess and treat pediatric medical, developmental, and behavioral needs. The components of this strategy align with increasing the number of children in a medical home by offering continuous and coordinated support to families as they seek to obtain appropriate health care for their children. This directly addresses the needs assessment results identifying access to medical and specialty care as an issue. The needs assessment also addresses the impact of child abuse and neglect as an area of concern, by linking families to healthcare services and social service resources in their home communities. As the service has expanded through a statewide non-profit, WCFH’s direct involvement in the service has decreased as other groups assume a role in the sustainability of these services.
The Partnership Access Line-Pediatric Alaska (PAL PAK) partnership between Division of Behavioral Health and Seattle Children’s Hospital offers prescribing pediatric providers in Alaska support with questions on child and adolescent mental healthcare. Assistance includes diagnostic clarification, medication adjustment, and treatment planning. This initiative is in direct response to the lack of psychiatrists available in Alaska to treat pediatric patients with mental health needs. When prescribing and non-prescribing providers request assistance with support and resources for children, adolescents, and families this is offered through Help Me Grow Alaska who offer care coordination within Alaska through the CIRS. This project is in the final year of a 5-year HRSA grant. A new 3-year continuation grant application was submitted by WCFH in June 2023, with the plan for WCFH to assume responsibility for this project if the continuation grant is awarded. The CYSHCN Director will assume the role of PAL PAK Project Director, which aligns with the state priorities to seeks ways to offer equitable access to pediatric specialty care and connect families to supports and resources for behavioral/ mental health services.
This strategy focuses on adolescent coordination of care and developing skills to manage healthcare needs and navigate healthcare systems. As adolescents prepare to leave pediatric and enter adult care, it is necessary for them to understand how this process works, and what tools are needed to access care and make healthy life choices. This strategy aligns with increasing the number of children in medical homes, as establishing a medical home for care provides adolescents with the opportunity to receive transition services, ongoing education, and ask questions of their primary healthcare providers on a regular basis. In addition, the process of learning about and planning for healthcare is also an important component of emergency preparedness. The transition worksheets and checklists offered as learning tools to plan for care in the future, can also be used to plan for care in the event of an emergency.
Adolescent healthcare transition work has been ongoing since 2018, when the CYSHCN Director began working at WCFH. This work is funded by Title V. There will continue to be a collaboration between the CYSHCN Director and the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) program to offer adolescent transition information to all adolescent eligible for EPSDT services. This work has been delayed as EPSDT focus on Medicaid renewals as the Public Health Emergency has ended. By partnering with EPSDT, it is hoped adolescents and their caregivers will increase their knowledge about services and benefits available to help them manage their healthcare needs as they move towards adulthood. They will also be encouraged to establish care with a healthcare provider who can guide them through this process. This plan offers adolescents a process for learning how to access health insurance and medical, specialty, behavioral health, pharmacy, and other services needed to live a healthy life.
Trainings by the CYSHCN Director will continue and there is a plan to continue partnering with Stone Soup Group around transition education to offer adolescents, families, and providers, expand the level of knowledge and understanding of all that is involved in the process of adolescent healthcare transition. Topics such as understanding health insurance, privacy, and confidentiality will be offered. An evaluation will also be included to determine if there is a change in knowledge for those taking the training.
11.3: Partner with the University of Alaska Anchorage Center for Human Development (UAA CHD) to implement Project ECHOs to increase caregiver and provider knowledge and skills.
Project ECHO is a learning model that uses real time videoconferencing technology to connect a team of interdisciplinary specialists with health and community service professionals, educators, and community members. Using a hub and spoke model and “moving knowledge, not people,” Project ECHOs provide access to expert information from professionals across the state and country, building capacity to implement best practices and improve outcomes. Specialists serve as mentors and colleagues and create ongoing learning communities, breaking down walls between primary care, specialty care, community partners and families. WCFH has a key role in leadership and funding for ECHO projects, a model which is a good fit for Alaska and has proven successful. Originally Project ECHOs were a partnership with Tribal Health who launched ECHOs using their own video conferencing platform. Since then, the University of Alaska Anchorage (UAA) Center for Human Development (CHD), which is also Alaska’s University Center of Excellence for Developmental Disabilities (UCEDD), has become an ECHO Super Hub and can facilitate ECHO clinics with fidelity to the model. This was possible with general funds from WCFH.
In the coming year, WCFH will continue its leadership role in supporting collaborative learning through Alaska Project ECHOs, with the Family ECHO focused on the CYSHCN population. This ECHO will allow providers, educators, case managers, family advocates and self-advocates and focuses on the family experience and learning about complex behavior and transition challenges. This ECHO is part of the UAA Alaska LEND Without Walls (Leadership Education in Neurodevelopmental and related Disabilities) program’s family experience, which is an integral part of the LEND learning model.
The Neurodevelopmental Disabilities ECHO, which was one of the first ECHOs available in Alaska, completed the final cohort in Spring 2023. This ECHO was centered around enhancing statewide primary care and early intervention knowledge, screening, and management of autism spectrum disorders (ASD) and related disabilities. It was determined that this ECHO had met the intended goals and was no longer needed. The Behavioral Interventions for Early Childhood (BIEC) ECHO also ended in Spring 2023 and is no longer in the plan for upcoming year. Resources instead were allocated to created webinars for families and providers, along with creating a resource library.
This strategy to improve family and professional partnership, is part of the strong commitment WCFH has to family engagement and leadership. A critical part of family centered care is ensuring parents are engaged and supported, and training and mentorship opportunities provide parents with the skills and resources they need to be involved in healthcare planning, development, and implementation at multiple levels, including individual, community and policy. Supporting parent leaders invested in care for CYSHCN can also help improve access to medical and specialty care in Alaska, through shared knowledge and capacity building in local communities.
In 2019, with first year funding from Alaska’s Preschool Development Grant (PDG), the Department of Early Education and Development (DEED) partnered with WCFH to develop a Family Engagement and Leadership Training (FELT). This training includes an asynchronous training consisting of 20 online learning modules that families can complete at their own pace and a facilitated ‘book club’ format for families to meet and discuss the modules. The goal of FELT is to give families the tools they need to actively participate in their own advocacy as well as the wide variety of workgroups, coalitions, committees, and boards related to childhood, systems change, monitoring and improvement that need a family voice and representation. There have been 4 FELT cohorts with attendees from across the state engaged in a variety of coalitions and advocacy workgroups. New modules have been developed to add to the original FELT course to introduce parents to the principles of Continuous Quality Improvement (CQI) and the Plan-Do-Study-Act (PDSA) method or change testing. This will give parents tools to be involved at systems level CQI initiatives. In 2023, with funding from WCFH, FELT moved to its new home at the University of Alaska Anchorage Center for Human Development (UAA CHD) as part of sustainability efforts. UAA CHD is Alaska’s University Center of Excellence for Developmental Disabilities (UCEDD) and family engagement and advocacy are part of their mission, which makes them a good partner in the work to give families the knowledge, skills, and support they need to be vocal and active participants in systems change and improvement. FELT will continue to grow with the inclusion of funds from the Preschool Development Grant Birth through Five Renewal, which was awarded to the Alaska Department of Health in January 2023.
This strategy is a continuation and seeks to improve access to medical and specialty care for CYSHCN by improving the timeliness of referrals for hearing loss services. Referring infants and families for services earlier, makes for timelier interventions and better coordinated care. There is potential to reduce child abuse and neglect when therapeutic services can be accessed before more significant developmental and communication deficits develop.
Children who reside in communities outside of Anchorage have limited or no local access to pediatric audiology, Ear, Nose, and Throat (ENT), and other follow up health care providers. This lack of access often leads to greater delays for these children to receive hearing screening follow-up according to the Joint Commission in Infant Hearing (JCIH) 1.3.6. recommended timelines, compared to children who reside in Anchorage and surrounding communities. To address the access to services issue, the newborn hearing screening program database will continue to be utilized to automatically send monthly reminders to birth screening or audiology providers when a child at risk needs follow-up hearing testing. The database reminder system is also used when a child with a documented hearing loss does not have documented Early Intervention (EI) enrollment. This tool is a safety net to increase communication about any children who may have slipped through the regular follow up processes and may need additional resources to navigate the barriers to care. It is hoped that by developing a provider-family relationship through the referral and reminder process, utilization of the medical home for children with hearing loss will improve. The program is also exploring implementing new methods of outreach to primary care providers to further improve follow up for children at risk who need follow up.
The Early Hearing Detection & Intervention (EHDI) Advisory Committee, which includes the EHDI Family Navigator, EI staff, audiologists, self-advocates, and parents, will continue to collaborate on improving pediatric audiology services in Alaska. When audiologists did not send a referral to EI, they indicated that in Alaska the eligibility criteria are higher than other states. A child who has mild or unilateral hearing loss often are not eligible for services due to the eligibility criteria that require additional risk factors which could lead to a 50% or greater delay in one or more areas of development. The team will reach out to the State EI office to explore having joint outreach to encourage that all children identified as deaf or hard of hearing receive referrals.
The EHDI program will also continue to partner with Stone Soup Group (SSG) to provide family navigation to families with a child diagnosed with a hearing loss, or at-risk of hearing loss after failing their newborn hearing screening, The EHDI Parent Committee reviews all SSG resources and scripts to assure the materials are up to date, accurate, and communication neutral. The EHDI program also partners with UAA CHD on a parent survey of their experience with EHDI. Parents of children who are deaf or hard of hearing are trained to administer the survey to help foster connection and rapport. Parents who deliver the surveys receive a stipend for their participation in this research project.
11.6: Promote workforce capacity, systems integration, and healthcare infrastructure for primary and specialty care.
Alaska needs the healthcare workforce to offer care to all children to realize progress on the national performance measure related to children receiving care in a medical home. Strategies need to be developed that increase healthcare workforce capacity and help retain providers providing care in Alaska. WCFH is a key member of several statewide initiatives that seek to improve Alaska’s healthcare infrastructure, support healthcare providers, and look for ways to improve the systems of care used by CYSHCN.
The CYSHCN Advisory Committee continues to be a venue to bring partners from across the state, governmental, non-profit, those with lived experience, and others interested in where and how pediatric primary and specialty care is offered and delivered. The focus is the systems of care used by CYSHCN, the gaps and strengths. This committee created the current State CYSHCN 5 Year Plan 2022-2027 and continue to review and focus on ways to meet the goals and objectives of the Plan through priority strategies.
The All Alaska Pediatric Partnership (AAPP), is a public/private partnership that links healthcare and community-based services with government, healthcare entities, social services, and payers for children and family healthcare. The goal is to improve the health of all children in Alaska. Many Title V staff attend monthly AAPP meetings and WCFH continues to be an active member of this organization and their projects.
WCFH continues to be involved in the Pediatric Subspecialty Workgroup focused on creating a sustainable plan to deliver specialty to care to all children and young adults across Alaska. This is a statewide initiative led by AAPP and the Rasmussen Foundation who provide consultation services and brought together providers and health systems to look at ways to create an equitable system of care for pediatric specialty needs. WCFH will continue support for The Alliance, a group formed under the leadership of Recover Alaska to utilize funding from the alcohol tax to prevent harm from alcohol use. WCFH work to support the alliance has shifted from providing data, planning, and identifying resources, to providing smaller scale support for systems of care and services for pregnant people and families with infants who are impacted by substance use disorders.
Several staff from WCFH are working with CHIP, Medicaid, and the Alaska Children’s Trust to develop strategies aimed at reducing the rate of uninsured children in Alaska. This work overlaps with Medicaid and Denali KidCare going through the participant redetermination process after the ending of the Public Health Emergency. Alaska in general has suffered with a shortage in workforce to process Supplemental Nutrition Assistance Program and Medicaid/ Denali KidCare applications in a timely manner. The Department of Health has set a target of clearing up to 50% of the current backlog of applications by October 2023, but this means a significant number of families are finding it difficult to access food and health care because they have not been determined to qualify for assistance. Additionally, as the backlog is reduced and data is available, it will be possible to see how the uninsured rate has changed from the beginning of the COVID-19 pandemic to this point and what strategies are needed to reach those who are eligible but not covered, in the coming year. Work in this area links with the focus of seeking ways to create safe, stable, and nurturing environments for children, advancing health equity, and developing equitable access to healthcare care as needed by CYSHCN, their families, and support systems.
The Behavioral Health Roadmap Steering Committee includes advocates and associations, tribal Child Welfare, Tribal Behavioral Health, the Department of Health, and the Department of Family and Community Service, who are focused on addressing the overwhelming need for appropriate behavioral health services for children and youth across Alaska. This group began meeting in Spring 2023 in response to the Department of Justice report that found the State of Alaska unnecessarily institutionalized children and youth because the State failed to provide adequate community-based services to meet their mental health needs. Every year hundreds of children and youth, especially Alaska Native youth, find themselves moving from their home community to receive treatment in institutions, hundreds, or thousands of miles away. While hundreds more are sent out of state for care, where they also lack access to their traditions and culture in addition to their support system, which further removes them from things that offer resilience in difficult situations. The CYSHCN Director has been attending the public meetings to learn more about the plan to hold regional meetings across Alaska to get input on what is being experienced and what is needed to redress the situation. Stakeholder meetings are planned for the next few months and findings from these meetings will be used to inform the next Legislative Session in 2024. The findings of these meetings will be published by the end of 2023 and has the potential to inform work being done in WCFH, especially regarding making PAL PAK services sustainable and part of the continuum of care for behavioral health services for children and youth in Alaska.
11.7: Continue to provide limited gap-filling pediatric specialty clinics and family navigation services as needed and as resources allow.
This strategy addresses concerns raised in the 2020 Title V Block Grant Needs Assessment about access to specialty care. Much of the work done at WCFH focuses on identifying needs and creating partnerships to improve access to care for CYSHCN seeking healthcare. This is both an effective approach to finding sustainable ways to meet needs and to overcoming the problem of limited resources within WCFH for extensive specialty care.
The Metabolic Clinic sees patients three times a year at in-person clinics in Anchorage and Fairbanks, in January, April, and September. Patients are also able to be seen through telehealth as needed. Children and adults can be seen, and the same physician consultant and dietitian also offer ongoing metabolic consultation services for abnormal metabolic results found by Alaska’s Newborn Bloodspot Screening Program in conjunction with the Iowa State Hygienic Lab. This Lab is contracted to analyze all of Alaska’s newborn bloodspot screenings. When a baby is confirmed to have a metabolic condition, they are referred for ongoing care at the metabolic clinic.
The CYSHCN Director and Office Assistant in WCFH are the main points of contact for physician and dietician services. They work with patients and families as needs arise, and contact health insurance companies to get approval for prescriptions, and formulas that need physician orders. They also follow up with referring providers, pediatricians, and primary care providers to ensure clinic notes, treatment plans, and recommendations are available for those offering patients continuing care.
There are three pediatric neurodevelopmental diagnostic centers in Alaska. All are in the Anchorage and the Mat-Su area, and one center only serves Alaska Native beneficiaries. When rural Alaskan patients need pediatric neurodevelopmental diagnostic services, they must travel to receive services either in Anchorage or outside of Alaska. To address equitable access to neurodevelopmental diagnostic services for patients and families living in rural Alaska, WCFH offers a gap filling outreach clinic that travels to rural areas. In prior years, there was capacity for in-state neurodevelopmental providers, which supported WCFH’s contract with Southcentral Foundation (SCF) and Providence Medical Group to staff the State’s Neurodevelopmental Outreach Clinic with Pediatric Neurodevelopmental Specialists (PND). Unfortunately, due to a change in capacity, only PNDs from SCF will be available for the clinic next year. The PNDs will work alongside the clinic coordinator at WCFH, and a Title V Block Grant funded Parent (Family) Navigator to offer neurodevelopmental clinics in rural Alaska. Children from 12 months to 9 years old, and their families, will be served through a mixture of in-person and telehealth clinics. Services include screenings, evaluations, and diagnoses, follow up referrals, and recommendations for treatment, care, early intervention, and education. In addition, the PNDs and a Neurodevelopment Partners Group, facilitated by WCFH, will continue to use a Multi-tiered Autism Diagnostic Process to streamline how to determine where and how children with an unambiguous neurodevelopmental diagnosis should be treated. The Neurodevelopmental Outreach clinics are scheduled during times of the year that do not conflict with family traditions such as fish camp, hunting, and school schedules. This work is funded using State of Alaska general fund mental health dollars. A Program Manager and Office Assistant within WCFH are the main points of contact for this clinic. They coordinate the clinic and ensure final reports are sent to families and referral providers with recommendations for continued care. They work closely with the parent navigator from Stone Soup Group to ensure the families and/ or caregiver(s) of the child have the support they need before the appointment and the information afterwards to follow up with recommendations made during the visit.
Alaska is one of the few states where medical care is paid through a fee-for-service model. Often this means that care coordination, an important component of a medical home, is not offered because these services are not currently reimbursable. Peer-to-peer Family Navigation services fills this component of a medical home specific to CYSHCN populations, by offering family-centered, coordinated assistance to access and advocate for needed medical and specialty care. Stone Soup Group (SSG) is a non-profit that has been providing support for families raising children with special needs since 1992 and is Alaska’s HRSA funded Family-to-Family Health Information Center (F2F). Part of their services includes Family Navigation, which they provide for a variety of medical services through support from Block Grant funds. WCFH meets with SSG quarterly and at that time reviews services offered and assesses for ongoing needs.
In addition to services offered at the Neurodevelopmental Outreach Clinic, SSG also provides Family Navigation services for the Cleft, Lip, and Palate clinic offered at Southcentral Foundation. While funding from the Office of Substance Misuse & Addiction Prevention pays for Family Navigation at the Fetal Alcohol Spectrum Disorder (FASD) clinics in the state. These navigators have been an important part of the continuum of care for families for more than a decade and provide valuable information and support for families at a crucial time.
The focus previously was on developing an integrated early childhood data system. However, the focus has now shifted to facilitating data sharing agreements relevant to the population in general, to ensure efficient and timely sharing. Increased data sharing can enhance childhood screenings aimed at improving health and development in young children and reducing the risk of child abuse and neglect, by improving the identification of children at risk for maltreatment so they can be provided programs and services that support improved social and health outcomes.
The MCH Epi Unit and early childhood program staff will continue to provide leadership on several initiatives aimed at removing barriers to data sharing. WCFH will continue to seek ways to enhance early childhood systems building and demonstrate improved outcomes in population-based children’s developmental health and family well-being indicators, through groups like the Universal Developmental Screening Advisory Committee (UDSAC). The purpose of the UDSAC is to bring key stakeholders together to ensure that all children and their caregivers have access to developmental screening in Alaska. Coordinating data sharing is an important way the purpose can be achieved.
WCFH staff also plan to continue working on a foster care health linkage project in partnership with the Office of Children’s Services and the Alaska Mental Health Trust Authority. In SFY24, the Mental Health Trust will be providing funding for a Research Analyst (or similar job class) who will work closely with both OCS and the MCH Epi Unit to conduct these data linkages and analyze the data. The Office of Children's Services estimates that approximately 50% of the children in their care have a special health care need or a complex medical condition. This does not include mental health disorders, for which the rate is much higher. The Foster Care Health Linkage Project will support a Long Term Non-Permanent staff position to automate a vexing problem within the state system - providing timely data on children’s health care needs and prior diagnosis to case workers and medical professionals working with the child, and improving the health, safety and wellbeing of children who are in state custody. When the state assumes custody of a child, it is obligated to ensure that the health, safety, and wellbeing of that child is secure. To provide adequate and efficient health care, a complete health record is necessary. Currently the health information collected and maintained is fragmented and often incomplete. While OCS is in the process of developing a new data system, an intermediary step is to continue to put the Long Term Non-Permanent staff in place to conduct the health record linkages. The staff would also partner with legal and continue stakeholder engagement to identify the technical needs of data holders and to refine the design of the new data system within OCS.
WCFH has also been invited to partner with OCS to provide stakeholder input into the development of the new data system, which is expected to be built over the next five years. The initial research of the foster care health linkage project will be used to inform this project and is considered a baseline in which OCS can refer to.
The CYSHCN Director submitted a HRSA grant application for a three year-continuation grant for the Partnership Access Line – Pediatrics Alaska (PAL PAK). PAL PAK is currently in the 5th year of a 5-year grant being managed by the Division of Behavioral Health and is a pediatric healthcare provider access line for assistance with behavioral health needs for children and youth in Alaska. If the grant is continued, the main focus will be working on a sustainability plan to ensure these services continue after the grant ends and to ensure these services become part of the continuum of care services for children and youth with mental health needs. Data from this program will be essential to show how these services impact those who use them and how they help with the need for pediatric behavioral health services across the state.
The Alaska CUBS program conducts ongoing surveillance of the three-year-old population in Alaska, collecting self-reported survey data from parents who previously responded to the PRAMS survey after their child was born. The CUBS survey includes several questions designed to collect information about 3-year-old children with special healthcare needs and inform programs and systems serving this population. These include four “screener” questions (whether the child needs or uses more medical care than usual or is limited in their abilities to do things, and if these conditions have lasted more than 12 months), as well as questions related to well-child checks, barriers to getting health care and childcare, enrollment in EI or ILP, and developmental screening. The survey also includes many other questions related to the child’s experiences and health and the family’s socio-economic status and home environment. During 2015-2019, 7.6% of mothers of 3-year-olds indicated that their child either needed more services or was limited in their abilities compared to other 3-year-old children, and this was due to a long-term condition lasting at least 12 months. In FY24, the CUBS Coordinator plans to analyze 2020-2021 CUBS data to develop an Epi Bulletin or other publication to highlight and describe experiences of this group and associated outcomes. This publication will include system improvement recommendations to address any issues that may be highlighted in the data. Multi-level analyses of CUBS responses could also include information on the region where the respondent lives from the Alaska Health Equity Index, which maps to each region certain socioeconomic and demographic factors that affect the resilience of individuals and communities (from the Census Bureau’s American Community Survey).
The Alaska Birth Defect Registry (ABDR) has some common data interests with both the Early Hearing Detection and Intervention (EHDI) and the Newborn Bloodspot Screening (NBS) programs. This overlap presents an opportunity for collaboration and quality assurance for certain conditions because each program relies on distinct reporting systems. These three programs have developed data sharing protocols that allow for insight into missing reports, which is one of the most difficult aspects for any screening, or surveillance program to measure. This process has already produced valuable information to the EHDI program and improved focus of its resources. The ABDR will regularly incorporate (on a semi-annual basis) data from NBS and EHDI as a quality control measure of ADR’s reporting completeness.
The ABDR will also continue its work on two critical perinatal projects that aim to understand the rising rates of congenital syphilis and neonatal abstinence syndrome (NAS) in Alaska. Based on our previous work, both conditions appear to have overlapping risk factors, including maternal substance use, inadequate prenatal care, and a lack of effective contraception. Future work will validate the prevalence rates of congenital syphilis, describe the trends and the specific populations affected, and work to develop recommendations to reduce the number of cases and mitigate the effects of the exposure.
To Top
Narrative Search