Children and Youth with Special Healthcare Needs

Plan for the Application Year: October 2021 - September 2022

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.

NPM Strategies:

11.1: Promote a shared resource for families and primary care providers of CYSHCN using the Help Me Grow Alaska centralized system model.

This strategy focuses on offering resources and care coordination services to families through the Help Me Grow Alaska (HMG-AK) centralized system model, to improve access to medical and specialty care. Medical providers are also supported through education that increases their knowledge and access to resources used to assess and treat some 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, which can be addressed by HMG-AK when they link families to healthcare services and social service resources in their home communities.

As mentioned in 7.1.2, HMG-AK is a system that connects children and families with the services they need. The plan is to continue expanding outreach statewide with increased opportunities for supporting communities through tangible support for a network of community contacts, community champions, and HMG Community Liaisons. This will be accomplished by co-facilitating the Early Childhood Network (ECN) with the ECCS Program Manager working in WCFH. The purpose of the ECN is to bring together the leads of our statewide early childhood coalitions and other child-focused groups for the purpose of networking, resource sharing and specific didactic training. The ECN will continue to meet monthly (virtually) to foster deeper connection and communication amongst those working in the field of early childhood and to provide opportunities to develop and share ideas for this work. There are currently 14 participating communities with plans to expand this network.

HMG-AK will also continue to focus their outreach efforts with providers across Alaska by hosting weekly provider connection meetings. Through these meetings providers of all types (medical providers, home visitors, early childhood educators, etc.) will meet HMG-AK staff and learn more about services offered and how to partner with them. These weekly meetings will increase the capacity for families to receive care coordination in the community where they live.

See 7.1.2 for more information of developmental screening training modules, in relation to supporting providers with the CYSHCN population, as well as information on the UDSAC and the Learn the Signs. Act Early projects for developmental milestone monitoring.

HMG-AK will continue to be a resource for the Partnership Access Line-Pediatric Alaska (PAL-PAK), which is a partnership between Division of Behavioral Health and Seattle Children’s Hospital PAL line. PAL-PAK aims to offer prescribing pediatric care providers in Alaska support when they have questions about child and adolescent mental healthcare. Assistance offered includes diagnostic clarification, medication adjustment and treatment planning. This initiative was in direct response to the lack of psychiatrists available in Alaska to treat pediatric patients with mental health needs. If non-prescribing providers call for assistance, they will be directed to HMG-AK for community resources. HMG-AK continues to offer provider outreach and education about PAL-PAK through a variety of in-person meetings and educational conferences and webinar opportunities with the PAL-PAK team. The Title V-funded CYSHCN Program Manager will remain on the advisory committee for PAL-PAK and help promote PAL-PAK and HMG-AK’s services.

Finally, if there is a need to provide support during the COVID-19 pandemic, HMG-AK will continue to produce a live document accessible to Alaska families, early learning professionals, and health care providers, which offers reliable resources on a variety of topics. Topics will include but not be limited to talking to children about COVID-19, managing mental health, supportive resources, and activities for young children. This effort will continue, particularly since the pandemic has highlighted the need to focus on strengthening systems and community partnerships to address CYSHCN needs during emergency situations. Emergency preparedness is also part of the WCFH priority area for all domains and given the number of potential natural disasters on offer in Alaska, continuing to develop resources focused on planning for and managing daily needs in an emergency is essential.

HMG-AK will also continue to participate in many state-level advisory committees that support work being done to support the CYSHCN population. This includes the CYSHCN Advisory Committee, and the Governor’s Council on Disabilities and Special Education Early Intervention Committee (EIC). The committee works on priority issues and activities related to the effective operations of Alaska's family-centered Early Intervention/Infant Learning Program (EI/ILP). Committee members may be involved in workgroups that are conducting research, planning, monitoring and advocacy.

HMG-AK will also continue to participate on the Alaska Interagency Coordinating Council (ICC). The ICC is an advisory body to the Governor’s Council on Disabilities and Special Education and Part C of IDEA Program Office – Early Intervention/Infant Learning Program (EI/ILP). The purpose of the ICC is to advise and assist these agencies to enhance the performance of the statewide early childhood comprehensive system (Part C of IDEA) and transition to Preschool Special Education (Part B/619) services to eligible children,0-3 and their families. The functions of the ICC include advising and assisting Part C/ILP on meeting its responsibilities for the statewide ECCS by identifying sources of fiscal and other supports for early intervention services and recommending financial responsibility arrangements among agencies. The ICC also advises on and promotes interagency agreements, and develops strategies to encourage full participation, coordination, and cooperation of all appropriate agencies, including data collection and analysis. The ICC collaborates with the Department of Education and Early Development (DEED) regarding the transition of toddlers with disabilities to preschool and other appropriate services, gathering information about problems that impede timely and effective service delivery, and taking steps to ensure that any identified policy problems are resolved.

As the current ECCS grant opportunity is ending in August 2021, WCFH will continue to work with the expanded HMG-AK services in an advisory capacity and through other grant related opportunities

11.2: Develop resources for adolescent healthcare transition to adult care and increase education for adolescents, their caregivers, educators, and medical providers on this topic.

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 gives adolescents 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 Program Manager began working at WCFH. This work is funded by Title V. In the coming year, plans are being made by the CYSHCN Program Manger to create online adolescent healthcare trainings that will be hosted on the State of Alaska Health and Social Services training website. Trainings will be created for adolescents, families, and providers and include information from presentations previously given in person over the last two years. Topics will be added to help 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 and privacy and confidentiality will be offered. An evaluation will also be included to determine if there is a change in knowledge for the trainee after 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. WCFH lead the Alaska Project ECHO Workgroup, which also included participation from tribal health, until the state of the COVID-19 pandemic. WCFH would like to reconvene this workgroup to discuss further coordination of this model use in Alaska.

The University of Alaska Anchorage (UAA) Center for Human Development (CHD) is Alaska’s University Center of Excellence for Developmental Disabilities (UCEDD). Through funding from WCFH, they are now certified as an ECHO Super Hub. Two new ECHOs were developed almost overnight in 2020 in response to the COVID-19 pandemic; COVID-19 for Medical Providers ECHO and Covid-19 Perinatal ECHO. In a moment of crisis, these ECHOs rapidly reached hundreds of professionals across the State. We plan to continue offer them for the upcoming year.

The Neurodevelopmental Disabilities ECHO will continue to focus on enhancing statewide primary care and early intervention knowledge, screening, and management of Autism Spectrum Disorder (ASD) and related disabilities. The interdisciplinary team includes a developmental pediatrician, child neuropsychologist, advanced nurse practitioner, licensed clinical social worker, and a parent advocate. In response to COVID-19 and the changing landscape of telehealth, this ECHO now includes best practices for diagnosing neurodevelopmental disorders using telehealth.

The Behavioral Interventions for Early Childhood (BIEC) ECHO launched in 2020 and is very well attended and will continue beyond 2021. It focuses on providing learning for early childhood professionals supporting children birth through five, who have challenging behaviors and need additional supports. Providers participating in this ECHO include childcare, preschool, and early intervention professionals.

WCFH also sponsored a Family ECHO which launched in 2020. This virtual learning network for family members and providers incorporated experts including family members, social workers, behavior analysts and family navigators. Learning occurred by presenting cases and didactics on family challenges including complex behavior and transition challenges. This ECHO has now become a part of the UAA Alaska LEND Without Walls (Leadership Education in Neurodevelopmental and related Disabilities) program and is being sustained through UAA funds. WCFH will continue to take a leadership role in Alaska Project ECHOs which include important topics such as dental, school health, neurodevelopmental disabilities, opioid use disorders, mental health treatment, head injury, palliative care, and perinatal information.

11.4: Collaborate with state, private, and non-profit programs to remove barriers to data sharing and centralized data collection to create an integrated early childhood data system.

Increasing the number of children receiving care in medical homes aims to improve children’s access to both preventive care and treatment. The development of integrated early childhood data systems is a strategy that would enhance the care received in the medical home. By creating systems that offer coordinated and comprehensive medical information, medical providers, and other early childhood providers, will have the opportunity to enhance childhood screenings aimed at improving health and development in young children. Integrating data can also reduce the risk of child abuse and neglect, by targeting children at risk for maltreatment with programs and services aimed at improving social and health outcomes.

WCFH will continue to provide leadership on several initiatives aimed at removing barriers to data sharing and centralized data collection to create early childhood data systems. The Early Childhood Comprehensive Systems (ECCS) grant program, funded through HRSA MCHB, is one such initiative. Although the current iteration of the ECCS program is ending in August 2021, the goal to enhance early childhood systems building and demonstrate improved outcomes in population-based children’s developmental health and family well-being indicators, will continue.

For example, to sustain the success in growth in developmental screening efforts beyond the life of the ECCS grant, WCFH will be facilitating the newly formed Universal Developmental Screening Advisory Committee (UDSAC). The purpose of the Universal Developmental Screening Advisory Committee is to bring key stakeholders together to ensure that all children and their caregivers have access to developmental screening in Alaska. The Advisory Committee will accomplish this through:

1. Streamlining efforts to maximize efficiency
2. Coordinating data sharing
3. Ensuring access to training on developmental screening and screening tools for all voluntary or mandated screeners, including early childhood education, home visitors and health care providers
4. Providing stakeholder input on the statewide ASQ Online system
5. Increasing family-focused education on developmental screening

WCFH staff also plan to continue working on a foster care health linkage project. In recognition that the State has an obligation to provide a certain standard of care for the children in custody. The Foster Care Health Linkage project is an attempt 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 who are working with them.  Expected outcomes for this system could include an increase in equitable access to quality health care for youth in foster care, as well as systemic improvements that increase the health, safety, and wellbeing of children in foster care. 

Another initiative aimed at building comprehensive early childhood systems is the Alaska Early Childhood Coordinating Council (AECCC). The purpose of the AECCC is to promote positive development, improve health outcomes and school readiness for children prenatal through age eight. This will be achieved by creating a unified, sustainable system of early care, health, data, education, and family support for young children and their families. The Council is co-chaired by the Department of Education and Early Development (DEED) and the Department of Health and Social Services (DHSS), and has a wide variety of members spanning the early childhood sector, including public, Tribal, private, and non-profit representatives. WCFH is represented on this council and provides leadership and organizational support. The AECCC will continue to serve as the advisory board for Alaska’s Head Start, Child Care Assistance, and the Maternal Infant Early Childhood Home Visiting (MIECHV) grants. WCFH staff will continue to be the lead DHSS staff to this Council.

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 allowed EHDI to improve focus of its resources and identified gaps in reporting for ABDR. Partly to improve communication between these programs, the Research Analyst of both NBS and EHDI now works in the MCH Epidemiology Unit. During the upcoming year, these programs will work to optimize their scheduled data sharing intervals to make sure this mutually beneficial opportunity is timely enough for all programs.

11.5: Partner with statewide agencies to provide Family Navigation services for families of CYSHCN.

Alaska is one of two remaining 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 fill 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.

The EHDI program partners 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. 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). The EHDI Parent Committee reviews all SSG resources and scripts to assure the materials are up-to-date and accurate.  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.

SSG also provides Family Navigation services at the Cleft, Lip, and Palate clinic offered at Southcentral Foundation, and the State-sponsored Neurodevelopmental Outreach Clinics. The grant for navigation services are partially funded by the  Title V Block Grant In the upcoming grant year, family navigation services will be expanded to include the Fetal Alcohol Spectrum Disorders (FASD) clinics. This is a new partnership with funding coming from the Office of Substance Misuse Addiction & Prevention. There are quarterly meetings between WCFH and SSG to discuss Family Navigation services and assess for additional needs.

WCFH will also partner with the CHD to provide Family Navigation training for providers and their staff. To better meet the needs of pediatric providers and families, this training integrates the principles of pediatric care coordination, with the more family systems approach of navigation.

11.6: Develop and implement Family Engagement training.

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 training. Subsequently, WCFH continued and expanded this training, which includes two components and evaluation tools. The first part of the training is an asynchronous consisting of 20 online learning modules that families can complete at their own pace. This part of the training was tested using a Beta Group cohort of young parents in June 2021. Having a Beta Group to test the training was possible because the module developer was able to leverage Early Childhood Comprehensive Systems (ECCS) grant funding for this group to participate.  The second aspect of this training is a Family Engagement ECHO and serves as the “practicum” for parents giving them opportunities to participate in professional skill building activities.  This ECHO began in 2020, and has proven so successful, that even though Alaska did not receive year two PDG funding, the project has become part of the UAA LEND (Leadership Education in Neurodevelopmental and related Disabilities) program’s family experience as the Family ECHO.  There is a lot of interest in the newly trained parents to work our network of coalitions, committees, and boards, which gives parents and caregivers meaningful advocacy opportunities for further involved in healthcare systems change, monitoring and improvement. 

11.7: Partner with parents, audiologists, and Early Intervention to increase referrals and enrollment by 6 months of age for children diagnosed with a hearing loss.

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 rural communities with limited medical services must travel by air for follow up audiology services when they are screened at birth and determined to be at risk for hearing loss. Unfortunately, since the COVID-19 pandemic began in 2020, travel in Alaska has been greatly disrupted. Many communities across rural Alaska stopped or reduced air travel to and from their communities. While ultimately protecting the overall health of these communities, lack of air travel had a disproportionally negative effect in access to audiology or hearing screening technology for affected children. As vaccination rates in rural Alaska increase and air travel resumes, it is hoped in the coming year more children in need will be able to access appropriate services again.

The OZ system will continue to be utilized to automatically send weekly reminders to providers when a child at-risk needs follow up hearing testing. The OZ 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 this will improve utilization of the medical home for children with hearing loss.

EHDI program staff and parent leaders will continue to offer presentations each year to Alaska EI grantees through in-person or webinar meetings. The 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. The focus will remain on quality improvement initiatives to increase referrals and enrollment by 6 months of age for children with diagnosed hearing loss.

11.8: Conduct or support special studies related to identification of community protective factors and barriers to accessing care (i.e. GIS mapping of access to care; comparative study of military and Tribal Health systems and non-military/non-tribal health systems; CCHD study).

Since the 2015 Title V Block Grant needs assessment, access to medical and specialty care for CYSCHN in Alaska has been identified as an area of great need. Many factors affect access to care including difficulties recruiting medical specialists to Alaska, the rate of reimbursement for specialist services, patient’s health insurance coverage, and the practical challenges of travelling from rural Alaska for medical care to a larger community or out of state. To appropriately address access to care needs and understand the burden associated with specific health conditions, it is necessary to conduct or support special studies that describe these issues. Gathering data that quantifies the problem is necessary to understand where and how gaps in care exist and offer a road map to effective design strategies to improve systems of care.

The Alaska Birth Defects Registry (ABDR) and Newborn Bloodspot Screening (NBS) programs are currently nearing the end of a project that aims to better understand the burden of Critical Congenital Heart Disease (CCHD) in Alaska and the efficacy of screening. This two-year project utilizes a pediatric cardiology specialist and medical record review of all CCHD cases reported to ABDR over twelve years (2007 through 2018) to more accurately measure the prevalence rate of CCHD in Alaska and detect the geographic differences in diagnosis and screening. Insights gleaned from this project are already producing observations and recommendations to improve CCHD screening, detection, and tracking in Alaska. During the coming year, the project team will work to disseminate the findings to all stakeholders in Alaska and nationally. Further outreach and recommendations will be made as programs aim to find solution to the challenges identified. Ultimately, the information gained will benefit both the NBS and ABDR programs for years after the completion of this project. It in anticipated that findings and recommendations from this work will be disseminated through the Alaska Perinatal Quality Collaborative and presented through the WCFH-led Perinatal ECHO.

The COVID-19 pandemic is a public health emergency that has greatly affected access to care not only in Alaska, but across the nation and the world. As routine medical services were reduced to curb the spread of the virus, alternative ways of providing healthcare are evolving. Almost overnight, Medicare, Medicaid and private health insurance companies began changing reimbursement policies and, at least in the short term, waiving barriers for telehealth services to facilitate ongoing healthcare access for patients. As a result, the emergency yielded an opportunity to explore how medical, behavioral, and therapeutic telehealth services are delivered, and how such approaches could be continued and expanded in the future to reduce gaps and barriers to specialty care for CYSHCN across Alaska. In the coming year, ways to expand clinical services across the State will be explored.

11.9: Participate in workgroups related to workforce capacity, systems integration, and healthcare infrastructure for primary and specialty care.

Alaska needs the healthcare workforce capacity 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 and support healthcare providers.

The Alaska Healthcare Transformation Project consisted of several focus groups of policy makers, state and healthcare leaders and administrators, patient advocates, and private payers who were working to collectively improve Alaska’s healthcare system. The vision of this group ‘is to improve Alaskans’ health while enhancing patient and health professionals’ experience of care, while lowering the per capita healthcare cost growth rate.’ The work of this group is complete and the proposal to put in place an All Payer System in Alaska for health insurance providers to share data was brought to the Legislature during the 2021 Legislative Session. The Bill was introduced but no decisions were made before the end of the session. During the next Legislative Session, the proposal will again be presented to the Legislature for consideration.

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. The Title V Director is a member of the AAPP Board, and many working in WCFH attend monthly AAPP meetings. WCFH continues to be an active member of this organization and their projects.

WCFH has been involved with two ad-hoc committees convened by the Governor’s Council on Disabilities and Special Education, Alaska’s Developmental Disability (DD) Council (The Council), for several years. Both the Autism Ad-Hoc Committee and the FASD Ad-Hoc Committee, brought together stakeholder groups focused on improving health outcomes and access to healthcare for children affected. The work of these committees aligned with the CYSHCN focus in WCFH. In 2021, the Council developed a new 5-year strategic plan which moved their focus from early prevention, screening, diagnosis, and treatment to supported decision making and self-advocacy. As a result, the Council will no longer host the Ad-Hoc Committees for Autism and FASD. The stakeholders who were part of these committees have indicated a deep commitment to this work and are looking for sponsoring agencies to assist.

WCFH will continue 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 Rasmuson Foundation that is providing consultation to bring together providers and health systems to look at ways to create an equitable system of care for pediatric specialty needs. There are also two new areas where WCFH will work with partners in the coming year. The first is with The Alliance where work has already begun. WCFH and The Alliance, a newly formed group under Recover Alaska, will work to develop strategies focused on preventing harm from alcohol use. While 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. 

11.11: Continue to provide limited gap-filling pediatric specialty clinics 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.

Prior to 2021, the State of Alaska Metabolic Clinic has been offered three times a year in February, June, and October. Pediatric and adult patients are served, while infants are referred for care when an abnormal result from their newborn bloodspot screen results in a metabolic diagnosis. During the rest of the year, metabolic consultation services are being offered remotely to patients, families, and medical providers by the physician consultant and dietician. This includes covering metabolic consultation for abnormal results identified by Alaska’s Newborn Bloodspot Screening Program in conjunction with the Iowa State Hygienic Lab who are contracted to analyze all of Alaska’s newborn bloodspot screenings. After the success of being able to offer clinics via telehealth during the COVID-19 pandemic, in the coming year the Metabolic clinic will move to being in person in May and September. The January clinic will be offered via telehealth, as telehealth makes it easier for patients to attend clinic regardless of the Alaskan winter. Telehealth was also successfully used for the first time to connect with newly diagnosed newborns with a metabolic condition, and their families, outside of clinic. In the coming year, newborns in need of metabolic services outside of clinic will continue to be offered care through telehealth.

A Program Manager and Office Assistant in WCFH are the main points of contact for physician and dietician services and help coordinate prescriptions refills and medical foods orders. They also contact health insurance companies to discuss coverage and eligibility for specific treatments and obtain prior approval for clinic visit, as needed.

There are three pediatric autism diagnostic centers in Alaska, all are in the Anchorage and Mat-Su area, and one center only serves Alaska Native Tribal beneficiaries. In the past, when rural Alaskan patients needed pediatric autism diagnostic services, they had to travel to receive services in either Anchorage or outside of Alaska. To address this challenge, WCFH contracted with Seattle Children’s Hospital and the University of Virginia Children’s Hospital for Pediatric Neurodevelopmental Specialists (PNDs) to travel with the Neurodevelopmental Outreach Clinics to rural areas of Alaska. This work is funded using State of Alaska general fund mental health dollars. Due to the COVID-19 pandemic, for a time it was not possible to travel to Alaska from outside the state, nor travel to rural areas once in state. This led to the clinic being successfully transitioned to offering assessments via telehealth for the first half of 2021. This success and the increased capacity for in-state neurodevelopmental providers to offer services has led to the decision to contract with the Alaska Native Medical Center (ANMC) and Providence to staff the clinic with Pediatric Neurodevelopmental Specialists (PND). The PDNs will now work alongside the clinic coordinator at WCFH and a Parent Navigator. Children from 12 months to 8 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 use a Multi-tiered Autism Diagnostic Process to streamline how to determine where and how children with an unambiguous neurodevelopmental diagnosis should be treated. Outreach clinics are scheduled during times of the year that to not conflict with family traditions such as fish camp, hunting, and school schedules.

11.12: Convene the CYSHCN Advisory Committee to review program from current State Plan and identify statewide system priorities for the next State plan.

The current 5-Year State CYSHCN Plan runs through the end of 2021. To create a new plan and understand the current needs, protective factors, strengths and gaps that exist for CYSHCN across Alaska, a contractor will be hired to identify what key stakeholders believe are the priorities for the next 5-Year Plan. The assessment process will include creative ways of understanding the lived experience of CYSHCN, what the assets of this group are, and what resources would be most helpful in improving individual and community needs forward. Input from CYSHCN, their parents, families, caregivers, agencies working with them, medical providers, and local and state agencies will help in not only identifying but creating thoughtful ways to move the work forward in the coming years.