Children and Youth with Special Healthcare Needs
Plan for the application year: Oct 2022 - Sept 2023
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 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 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 Early Childhood Systems Specialist working in WCFH. The purpose of the ECN is to bring together the leads of 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 21 participating communities with plans to continue to formalize and sustain this group through strategic planning sessions.
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.
HMG-AK will continue to provide up-to-date and reliable resources on a variety of topics to Alaska families, early learning professionals, and health care providers through a variety of platforms including websites, social media, newsletters, outreach events, etc. Topics include but are not limited to, talking about child health and development, social and emotional resources, prenatal and newborn resources, and other activities for young children.
HMG-AK 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 Interagency Coordination Council (ICC). The ICC advises and assists Alaska's family-centered Early Intervention/Infant Learning Program (EI/ILP). ICC members may be involved in workgroups that are conduct research, planning, evaluation, and quality improvement.
HMG-AK are a part of 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 – (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 EI/ILP on meeting its responsibilities for the statewide early childhood comprehensive system 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.
To sustain the great efforts and forward movement of the Early Childhood Comprehensive Systems (ECCS) grant that ended in 2021, WCFH continue to work with the expanded HMG-AK services in an advisory capacity and through other grant-related opportunities.
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 Program Manager began working at WCFH. This work is funded by Title V. In the coming year, the CYSHCN Program Manager will work with the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) program to offer adolescent transition information to all adolescent eligible for EPSDT services. The plan is to begin mailing out this information at the beginning of each year, so adolescents have the opportunity to learn how to manage their own healthcare before they age out of EPSDT services. 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 Program Manager will continue to be offered to adolescents, families, and providers, 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, 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 which include important topics such as, school health, challenging behaviors in young children, neurodevelopmental disabilities, opioid use disorders, mental health treatment, head injury, family advocacy, and perinatal information. A few of the ECHOS are highlighted below.
The Neurodevelopmental Disabilities ECHO is one of Alaska’s first ECHOS and 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 Hub team includes a pediatric neurodevelopmental specialist, neuropsychologist, advanced nurse practitioner, licensed clinical social worker, and parent advocate. This ECHO includes best practices for diagnosing neurodevelopmental disorders using telehealth, as well as other topics related to screening, diagnosis, co-occurring disorders, treatment, and interventions related to pediatric neurodevelopmental delays and disabilities, such as autism. It also offers the opportunity to increase specialty knowledge across Alaska treating patients in their home communities.
The Behavioral Interventions for Early Childhood (BIEC) ECHO launched in 2020, fills an important role and is well attended. BIEC focuses on providing learning for early childhood professionals supporting children birth through five, who have challenging behaviors and need additional supports. The goal is to prevent early suspensions and expulsions from programs. Providers participating in this ECHO include childcare, preschool, and early intervention professionals. The plan is to offer this ECHO again in 2022-2023.
WCFH sponsors a Family ECHO for 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.
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 integrated 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 has ended, 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 facilitates the 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:
- Streamlining efforts to maximize efficiency
- Coordinating data sharing
- 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
- Providing stakeholder input on the statewide ASQ Online system
- Increasing family-focused education on developmental screening
WCFH has also been invited to partner with the Office of Children’s Services to provide stakeholder input into the development of a 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 the Office of Children’s Services can refer to.
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 DOH staff to this Council.
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 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.
The EHDI program partners with 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. SSG also provides Family Navigation services for the Cleft, Lip, and Palate clinic offered at Southcentral Foundation and the State-sponsored Neurodevelopmental Outreach Clinics. 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.
In 2022, with funding from the Office of Substance Misuse & Addiction Prevention, a new navigation service was started, providing family navigation for the Fetal Alcohol Spectrum Disorder (FASD) clinics in the state. The intent is to provide additional supports for the diagnostic teams and families and help standardize practice from clinic to clinic. It is planned this navigation service will be available for the FASD clinics in the coming year.
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 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 3 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 will move 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.
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 access to pediatric audiology, Ear, Nose, and Throat (ENT) and other follow up health care providers in their local community. 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. Further, the COVID-19 pandemic has led to a greater strain on the health care system and made accessing specialty care even more challenging. To address the access to services issue, the OZ system 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 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, 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 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. The EDHI Staff and Advisory Committee members will also offer presentations to primary care providers of case presentations and data on the status of newborn hearing screening in Alaska through a webinar or in person format.
11.8: 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 Title V-funded CYSHCN Program Manager was a part of the workgroup for this effort. 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. It is anticipated 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.
The Partnership Access Line-Pediatric Alaska (PAL-PAK) offers prescribing pediatric providers in Alaska access to psychiatric consultation services as needed during business hours, to manage the behavioral health needs of pediatric patients in Alaska. This program began in 2018 and is funded through a 5-Year Health Resource and Services Administration (HRSA) grant that ends in September 2023. The PAL-PAK Advisory Committee is currently working on a sustainability plan for the Access Line so pediatric providers can continue to consult when they have patients with behavioral health needs. Seattle Children’s Hospital psychiatrists offer this service to Alaska currently, while through a different contract these same psychiatrists staff a second-opinion psychotropic medication review and oversight service for Alaska, also through the Access Line. A new contract for the second-opinion review and oversight service is currently at the stage of interviewing perspective contractors who responded to a Request for Proposal (RFP) released in May 2022. The new contract begins on May 1, 2023 and will focus on ensuring high value pediatric psychiatry and psychopharmacological care is provided to children enrolled in Medicaid, particularly children in state custody. The second-opinion reviews help ensure prescribed medication regimens are appropriate for a child’s diagnosis. The RFP also offers a Value-Add assessment, where the prospective contractor offers ideas or suggestions not mentioned within the RFP, but which they feel will benefit the State of Alaska and the project. Value-Add allows for innovative approaches previously not realized, to be offered in Alaska. These ideas are discussed and incorporated into the contract once the award has been made. The Title V-funded CYSHCN Program Manager is a member of the PAL-PAK advisory committee and is also part of the Health Care Services workgroup and on the interview panel for the new contract for second-opinion services.
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. These committees – the FASD and Autism Ad Hoc Committees – ended in 2022, as the Council turned its attention towards adult self-advocacy and no longer participates in activities relating to children. At this time no sponsoring agency has been found to assume the role these committees played in FASD and Autism advocacy. WCFH voiced concerns about the needs of children to the Council leadership after these decisions were made.
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 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, in January, May, and September. The clinic returned to in-person in May 2022, after being held remotely since June 2020 due to the COVID-19 pandemic. The success of seeing patients remotely during the pandemic led to the decision to keep this service as an option. Being able to continue offering metabolic clinic services via telehealth has greatly improved access for these specialty services. Both children and adults are seen, and the same physician consultant and dietitian also offer ongoing metabolic consultation services for abnormal 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.
A CYSHCN Program Manager 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 this challenge, WCFH contracted with out-of-state Pediatric Neurodevelopmental Specialists (PNDs) to travel with the Neurodevelopmental Outreach Clinics to rural areas of Alaska for many years.
At the beginning of the COVID-19 pandemic, it was not possible to travel to Alaska from outside the state, nor to travel to rural areas once in state. There were no clinics in the latter half of 2020 but by 2021, neurodevelopmental assessments were being offered via telehealth with out-of-state providers. At the same time, increased capacity for in-state neurodevelopmental providers to offer services led to the decision to contract with the Alaska Native Tribal Health Consortium and Providence to staff the clinic with Pediatric Neurodevelopmental Specialists (PND) in 2021-2022. In the coming year, the PDNs 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 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 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 with 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. This is an effective partnership to ensure the patient and family get the care they need. As with the EDHI program, obtaining appropriate care for neurodevelopmental needs early in a child’s life has the potential to prevent abuse and neglect and offer children and families the social support and skills needed to develop healthy relationships, in safe, stable, and nurturing environments.
The CYSHCN Advisory Committee reconvened in August 2021 after a break in meetings due to the COVID-19 pandemic. At that time, the Committee worked with a contractor to discuss the previous 5-Year State Plan achievements and challenges and select ongoing and new strategies. The focus for the next 5-Year Plan is as follows:
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Strategic Focus Areas |
1. EQUITABLE ACCESS |
2. SYSTEM GROWTH and IMPROVEMENT |
3. NETWORK BUILDING and PARTNERSHIPS |
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Goal Statements |
All CYSHCN in Alaska, regardless of community, can access the health services they need from well trained, culturally competent providers. |
CYSHCN and their families are aided by a robust and extensive system of support services covered by health insurance/Medicaid. |
Organizations and individuals who support CYSHCN work effectively together and share information. |
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Priority Strategies |
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Action Plans have been created around each priority strategy and during CYSHCN Advisory Committee in the coming year each Action will be reviewed and updated as needed. Title V funds paid for a contractor to help us facilitate and create the updated Alaska State Plan for CYSHCN.
During the CYSHCN Advisory Committee meeting in August 2021, foster parents caring for children and youth with medical and behavioral health needs was identified as a group in need of additional support. In the coming year there are plans to develop a training curriculum for foster parents caring for a child or youth with complex healthcare needs and a mentorship program that pairs new foster parents to those more experienced. The training curriculum and mentor program will offer resources that develop the skills and knowledge foster parents need to care for children and youth with complex needs, as well to support and retain those with experience. The underlying reason for developing these resources is to provide those in foster care a safe, stable, and nurturing environment in which to grow, while also offering social supports and tools focused on developing healthy relationships.
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 FY23, 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.
The CYSHCN Summary of Data was completed in March 2022 and is shared with partners to highlight who CYSHCN are in Alaska and the types of needs and concerns they experience. This summary of data will be updated annually to ensure information about this population is accurate and available when needed. The Title V-funded CYSHCN Program Manager plans to send out a newsletter twice a year that promotes the work being done for CYSHCN and to highlight CYSHCN strengths, resources, and ongoing needs. The goal of the newsletter is to increase awareness of resources available, in addition to the needs and accomplishments of CYSHCN to encourage development of safe, stable, and nurturing environment for CYSCHN to live and grow up in.
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