Children and Youth with Special Healthcare Needs

Report for the application year: Oct 2021 - Sept 2022

NPM 11: The percent of children with and without special healthcare needs having a medical home

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

As the only coordinated intake and referral service (CIRS) in Alaska, Help Me Grow Alaska (HMG-AK) is an important partner to WCFH in connecting the CYSHCN population to the services and resources they need. The Help Me Grow model allows for no wrong door to the CIRS, with no cost or insurance requirement. Translation services are available for all families who call in, while equity was prioritized in their annual strategic planning and evaluation process.  As such, HMG-AK constantly grew last year to meet the increased demands on the system by families, educators, and providers. This included doubling the number of the family support specialists from three to six. These family support specialists are the professionals that staff the call center and work diligently to gather information on why each person is calling and what they need. HMG-AK has built a comprehensive database of vetted and locally available information and resources that were consistently updated for the family supports specialists to use with every caller. In addition to the work the family support specialist provided, HMG-AK were a valuable partner in promoting and providing universal developmental monitoring and screening to help increase early identification and intervention of the CYSHCN population. See the children’s domain for more information on those activities.

HMG-AK diligently provided outreach and education on their services through weekly outreach provider connection meetings, conference presentations, and other presentation opportunities during the year. Highlights of successful outreach included presentations such as a keynote at the All Alaska Pediatric Symposium, presentations at various ECHO sessions and the Maternal Child Health and Immunization Conference, and an annual update to the Alaska Early Childhood Coordinating Council (AECCC). The Early Childhood Systems Program Manager also arranged for HMG-AK staff to present at various regional Office of Children’s Services staff meetings to educate and remind them of the importance and value of partnership with HMG-AK when working with families.

HMG-AK maintained active partnerships with Early Intervention (EI)/ Infant Learning Programs (ILP) and the Governor’s Council on Disabilities and Special Education this year. They sat on a wide range of advisory committees, including the CYSHCN Advisory Committee, the Universal Developmental Screening Advisory Committee (UDSAC), and the interagency coordinating council (ICC) that serves as the advisory committee to Part C EI/ILP services. They continued to develop culturally responsive and respectful services by regularly partnering with Alaska Native Tribal organizations. A highlight of this is the relationship established with the Tlingit and Haida tribe in Southeast Alaska to create an Ages and Stages Questionnaire (ASQ) companion document, providing developmental monitoring and screening training, and creating a developmental screening toolkit for Head Start agencies, including Tribal Head Start.

Strategy 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.

Resources and education for adolescents, parents, families, caregivers, and healthcare providers are needed to ensure adolescents with special health care needs can successfully transition from pediatric care to adult health care services. The CYSHCN Program Manager continued to offer presentations and resources to individuals and agencies interested in receiving this information. Two presentations were offered in the past year. A presentation to caregivers was given as part of Stone Soup’s Transition Series. This was a virtual presentation due to COVID-19 precautions which prevented the presentation being given in person. Two parents of adults with pediatric onset chronic conditions attended, along with an administrator from an Anchorage school. All participants expressed a change in knowledge after the presentation, and there was discussion about how this information could be very beneficial in the school setting. Currently healthcare transition is not part of the Individual Education Plan (IEP), as the Individuals with Disabilities Education Act (IDEA) does not prescribe healthcare be part of the transition curriculum offered to students as they make post-secondary education plans.

The second presentation was offered in the summer to Community Health Workers (CHW) involved in an apprenticeship with the Alaska Primary Care Association. The presentation was virtual and below is a graphic of the pre and post survey results showing what participants knew before and after the presentation.

The survey results showed most participants had no knowledge about adolescent healthcare transition prior to the training. After the presentation there was an increase in knowledge on this topic, including the barriers that make transitioning difficult and having resources to help with the process.

While the presentations have been positively received when offered their reach tends to be limited to the few participants connected with an agency or group invited to attend. It has been challenging with all the different needs adolescents, their families and caregivers, and healthcare providers have faced over the last two years to have a lot of engagement around addressing healthcare transition needs. However, increasing the knowledge of CHW on this topic targets improving health equity, as some of the clients served by this group of CHW are refugees, whose first language is not English, while other clients receive healthcare services at a Federal Qualified Healthcare Center (FQHC). The focus of the CHW has been to provide education and support around the COVID-19 pandemic and learning about vaccinations and precautions to prevent the disease spreading.

To improve access and equity to resources for healthcare transition, the CYSHCN and Early Periodic Screening, Diagnostic, and Treatment (EPSDT) Program Managers engaged in planning during the report period for future collaboration to share adolescent healthcare transition information with those eligible for services through EPSDT. The plan is to include adolescent healthcare transition information with the monthly EPSDT newsletters sent to families and caregivers, beginning with the annual mailing to be sent out in January 2023.

Strategy 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 (Extension for Community Healthcare Outcomes) was developed at the University of New Mexico (UNM) to improve access to specialty care in rural and underserved communities. In 2016, after training with the UNM ECHO Institute, the University of Alaska Anchorage (UAA) Center for Human Development (CHD) launched as an ECHO Hub. In 2019, with funding from Women’s Children’s and Family Health (WCFH), CHD was designated as an ECHO Superhub.  As a Superhub, CHD is authorized to provide replication training & technical support for new ECHO Hubs. Alaska Project ECHO topics have included autism and neurodevelopmental disabilities, behavior analysis, challenging behaviors, head injury, pain and opioid management, and family advocacy.

During the past year Alaska’s first ECHO project, the Autism/Neurodevelopmental ECHO, continued to offer pediatric providers information on developmental disability screening, surveillance, diagnosis, interventions, and treatment. While the Perinatal ECHO, which was rapidly developed in 2019 to share information relating to the COVID-19 pandemic, transitioned to an ongoing monthly series. One topic shared at this ECHO related to the Alaska Critical Congenital Heart Defects (CCHD) Continuous Quality Improvement Project (funded by NewSTEPs). The WCFH Epidemiology Unit coordinated an analysis of the Alaska statewide CCHD screening data from 2014-2018 and developed observations and recommendations regarding data on screens/missed screens. This work was completed in collaboration with a physician from the Alaska Children’s Heart Center who also presented at the ECHO. Both these ECHOs continued to make accessible relevant information to a variety of providers who live and work across a vast landscape.  

Alaska’s MIECHV program received approval to use MIECHV American Rescue Plan funding to launch a home visiting ECHO that began in January 2022. This was the first MIECHV funded ECHO in the country. The Alaska Home Visiting ECHO included home visiting and infant learning staff and families with home visiting experience from across the state in public, non-profit, and Tribal programs. The Home Visiting ECHO series ran for 6 sessions from February 15, 2022 - June 21st, 2022. Each session was 60 minutes in length with one special 90-minute session in March. The six sessions included information about substance use among pregnant persons, intimate partner violence screening, developmental health, and professional support tools. Nursing Contact Hours, Alaska Early Childhood Training Hours, and Foster Parent Training Requirement Hours were offered. A total of 303 participants attended with 90% indicating they were satisfied with the training and technical assistance. Comments included:

• Being a new home visitor, I was able to see a case study done and presented by an actual home visitor and was able to see what kind of information she looks at while home visiting.
• I will remember to keep an open mind when working with parents. I will also remember that I have pre-judgements and I need to check myself before dealing with families because I am intitled to my own opinion but so are others, and I am not here to push my opinions on others.
• This is an excellent cohort. Please continue these sessions. My staff are learning and growing. I am going to use the case studies to review during our staff meetings.
• LOVED having the parent perspective today -- that was one of the most valuable ECHO moments I've had in ages, THANK YOU to the two parents who were willing to share their thoughts and experience.

The second AK Home Visiting ECHO series launched in September 2022 with a presentation on Safe Sleep from a WCFH Perinatal Nurse Consultant. There is funding available to continue this ECHO through September 2024. This ECHO helped improve health equity and addressed issues of racism by offering education that speaks to the challenges many people in need of services find themselves in. This knowledge helped home visitors understand the context within which someone lives and experiences life, which is especially important for home visitors when seeking to build trusting relationships with clients in their own home.

Strategy 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.

Alaska does not have an Early Childhood Data System (ECIDS). Therefore, innovative approaches using data were undertaken to understand different populations. The foster care health information linkage project is a partnership between WCFH and the Office Children’s Services (OCS). It is an initial pilot project to support systems integration for the vulnerable sub-population of children in foster care. Currently, data shows over a 1/3 of children in state custody are under the age of four.

A significant concern for children and youth in foster care is the ability to fully share the child’s medical history when placed in a foster home. Sadly, the current system does not often provide a complete picture of a child’s medical history, which disrupts continuity of care. Though a foster parent may receive a copy of the “red folder” with some medical information, this folder does not contain enough information to connect the child with their original providers. Limited information about current medications or the developmental, behavioral, or physical needs the child experiences, also make it difficult for a foster parent to provide appropriate care to the child.

In the summer of 2020, WCFH approached OCS about the possibility of conducting research on this issue. A contractor with the ECCS grant held a series of focus groups to hear from foster parents, medical providers, and state-level leadership on their experiences with medical care for children in care and how an integrated health information data system might improve the situation. As a result of this research, a pilot project was created and launched in December 2020. Medicaid records and child health data accessible to WCFH were matched with a subset of OCS children in foster care to create more complete records. The results were encouraging and highlighted the potential and importance of building an integrated data system to improve continuity of care.

Information from this pilot project was shared with OCS staff in April 2021 and although there was a delay in the project due to OCS staff turnover, there was significant interest in expanding this project and seeking additional funding to develop it further. As a result, the Alaska Mental Health Trust Authority offered to pay for a long-term non-permanent staff member, beginning State fiscal year 2024, to provide the data connection for OCS and WCFH that was found to be so helpful for children in foster care. This arrangement will remain in place until OCS can build the data linkage project into a new database system. Work began on this when key staff from WCFH were invited to join initial meetings with OCS and a database system contractor to provide insight into what is needed to continue building upon the current data sharing in place between OCS and WCFH. This project seeks to not only improve health equity for those in foster care but has the potential to improve health outcomes by ensuring necessary healthcare information is relayed to foster parents, caregivers, and healthcare providers in a timely manner, especially when I child first comes into care or moves homes.  

To support Alaska communities in building up their early childhood data, the Early Childhood Systems Program Manager provided technical assistance to the Alaska Early Childhood Network (ECN). Help focused on data collection and synthesis for the purpose of building community early childhood needs assessments that can be used in grant applications and systems building, like early childhood coalition strategic planning. Staff from MCH-Epidemiology also provided support to the ECN when they showed members how to access community level data through State of Alaska resources and systems.

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

Family Navigation services were provided by Stone Soup Group (SSG) over the past year, as Alaska’s Family to Family Health and Information grantee. SSG are a statewide agency that supports families caring for children with special healthcare needs and have provided peer-based parent training, support, and navigation for more than 30 years. Funding from a HRSA and grant awarded to the Early Hearing Detection and Intervention (EHDI) program ensured a family navigator provided support to families of a child with a diagnosis of hearing loss. Families who needed to access follow-up services for infants who received a “refer” on their newborn hearing screen prior to a diagnosis were also supported. The goal of this support is to improve timely evaluation by audiology in accordance with Joint Committee on Infant Hearing (JCIH) 1-3-6 guidelines. These guidelines seek to have all babies screened before one month, diagnosed with hearing loss before 3 months, and receive early intervention by 6 months as needed.

Family Navigation services for the Neurodevelopmental Outreach Clinic were also part of this grant. WCFH uses state general fund-mental health dollars to fund a gap-filling clinic that brings autism/neurodevelopmental diagnostic services to rural communities in Alaska. This navigator has been part of the diagnostic team for many years and walks alongside families throughout their diagnostic journey, from referral to follow-up on diagnostic recommendations. Due to the ongoing COVID-19 pandemic, the navigator offered services virtually again this past year. Nevertheless, the services remained a critical component of the diagnostic team and helped ensure families were guided as they decided how to get care for their child before and after diagnosis.

In response to demonstrated success in offering Family Navigation services, the Alaska Office of Substance Misuse, Addiction & Prevention (OSMAP) approached WCFH to coordinate Family Navigation services for the State-funded Fetal Alcohol Spectrum Disorder (FASD) clinics. Family Navigation to the FASD clinics began in November 2021. A Navigator with lived experience was hired and trained and provided direct support and navigation at one clinic and received referrals from a second. This Navigator offered information and outreach to providers and families and was actively involved in the 2022 statewide September FASD Awareness Month activities which has a long history in Alaska.

Expanding Family Navigation services into the FASD clinic has helped improve health equity in this area, given the stigma and challenges some people face seeking services for FASD. The Navigator’s presence is both de-stigmatizing and facilitative, by relating to the clinic participants’ experiences and by offering insight and support in overcoming barriers and working through difficult situations. It also offered healthcare providers the opportunity to improve practices and understanding by working alongside a person with lived experience who can center the perspective of accessing/attempting to access services.  

Strategy 11.6: Develop and implement Family Engagement training.

WCFH engages with families and partners with community agencies to support professional development, mentorship, and leadership opportunities among parents, caregivers, and community members. By committing to supporting family leadership through a variety of opportunities, parents and caregivers develop the skills and resources needed to be involved in healthcare planning, development, and implementation at multiple levels. Over the past year in WCFH, family leaders helped inform a variety of program areas including: the Alaska Perinatal Quality Collaborative (AKPQC); Newborn Bloodspot and Hearing Screening; CYSHCN; and home visiting.

In 2019, with funding from Alaska’s Preschool Development Grant (PDG), WCFH worked with a parent advocate/contractor to develop a Family Engagement and Leadership Training (FELT). This training addresses the need to support equitable family and community partnerships in decision-making by increasing support to family professionals statewide. FELT is comprised of 20 online learning modules that families complete at their own pace paired with a facilitated “book club” format for participants to meet and discuss the modules. Modules are offered in 15-minute increments and the training evaluation offers participant’s the opportunity to provide feedback that helps improve the training.

In summer 2021, WCFH and HMG-AK partnered to establish the first cohort of parents and/or primary caregivers who tested the FELT modules. Attendees came from across the state and engaged in a variety of coalitions and advocacy workgroups. This cohort’s feedback and evaluation were incorporated into the training and during this reporting year, FELT was continued and expanded. A second cohort of perinatal and early childhood professionals took and evaluated the training. A third mixed cohort of parents and professionals recruited by the Early Hearing Detection and Intervention (EHDI) program also completed the training. The parent participants feedback was that they wanted opportunities for additional training, while professionals were more specific and indicated that they would like parents to have additional training on Continuous Quality Improvement (CQI). New modules were developed to add to the basic FELT course to introduce parents to CQI and the Plan-Do-Study-Act (PDSA) method of change testing. These modules were tested on a small cohort of participants from the previous three cohorts.  The CQI modules were rated almost as highly as the core FELT training which has consistent positive feedback. 

The FELT training, with funding from WCFH, is now hosted by the UAA Center for Human Development (CHD) as part of their training series. Planning has occurred for two parent cohorts during FFY 2022-23. The goal is to train 2-5 parent trainers to lead FELT training and to link FELT graduates to further advocacy training opportunities like the Family Engagement ECHO.

Strategy 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.

The EDHI program and EI updated their data sharing MOU to include informed consent and for ILP grantees and staff to receive additional training and technical guidance about EHDI. The updated agreement was signed on April 26, -2022.  Though the agreement was signed, the EI Database was offline until August 2022 as the result of a Cyber Attack on the Department of Health & Social Services. Data sharing later resumed in October 2022 with EI when the new database was online, and the EI grantees had time to enter the backlog of data.

The EHDI Program Manager, an EI Grantee, and an audiologist who both serve on the EHDI Advisory Committee, conducted outreach on the recommendations/position statement that all children should receive EI services at the Perinatal ECHO. The outreach presentation and case study generated lively discussion and suggestions. The EHDI Program Manager also presented at the Home Visiting ECHO on the value of EI services for children who are diagnosed with atypical hearing.

An MCH Epidemiology Fellow from the Council of State and Territorial Epidemiologists began working with the EHDI program to conduct an evaluation of the EHDI-information system process. It is expected the evaluation, analysis and resulting recommendations, will be used to inform decisions on process changes to enhance the EHDI program’s ability to coordinate with EI on referrals and enrollment.

Strategy 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).

The Alaska Birth Defects Registry (ABDR) and newborn screening staff have finished a two-year project investigating critical congenital heart defect (CCHD) detection and prevalence in Alaska. Critical congenital heart defects are a group of heart defects defined by their timely need for medical intervention. The impetus for this project was the alarmingly high prevalence estimates of numerous CCHD conditions from reported (unconfirmed) CCHD diagnoses to Alaska Birth Defects Registry (ABDR). With the help of local pediatric cardiologist, this project was able to either confirm or rule out nearly every reported case of CCHD to ABDR between 2007 and 2018. This process allowed ABDR and NBS to calculate accurate and validated prevalence estimates that were more in line with national CCHD estimates. Additionally, prevalence trends, geospatial mapping, and demographic breakdowns were developed for all twelve CCHD conditions. Reports for each CCHD condition are freely available to the public on the ABDR website. Some Alaskan healthcare providers have long suspected a higher incidence rate of CCHD cases in certain parts of Alaska. Therefore, geospatial analysis was performed on an aggregate of all twelve CCHD conditions. However, no geographic clustering of CCHD cases in Alaska was identified.

Critical congenital heart defects can be detected either 1) prenatally, 2) at birth, 3) by 24-hour screen, or 4) later when symptoms of adverse health outcomes present. Therefore, year two of this project focused on the methods and timing of CCHD detection of confirmed CCHD cases. Through these efforts, it was calculated that just over 46% of cases were diagnosed prenatally, roughly 25% were diagnosed at birth, 3.6% were detected by CCHD pulse oximetry screening, and just over 23% were not identified until after adverse health outcomes developed. These findings are illustrated below:

During this analysis, it was also identified which of the twelve CCHD conditions were missed at the highest frequency, as portrayed in the below figure. Prenatal detection of CCHDs often allows for the best possible health outcomes, as preparations can be made well before the birth of the child.

The proportion of prenatally detected CCHD cases in Alaska has gradually increased from 2007-2018. However, this trend appears to be largely driven by the more urban areas of the state creating considerable geographic disparities in CCHD detection (see below).

The ABDR and newborn screening programs now have a clear understanding of the prevalence of all twelve CCHD conditions in Alaska. The Alaska Birth Defects Registry (ABDR) and newborn screening staff have focused their efforts on sharing the findings. Results from this project were presented at the Statewide Perinatal ECHO in the fall of 2021, and an Epidemiology Bulletin that Is sent (via email) to medical providers and stakeholders across the state and posted on the Section of Epidemiology website was published in May of 2022. ADBR staff also presented a summary of their CCHD work at the national level at the Association of Public Health Laboratories (APHL) NewSTEPs CQI National Meeting in August of 2022. Staff is currently working on a number of publications around CCHD reporting accuracy and healthcare cost and utilization of CCHD patients. Future work that utilizes these data will likely focus on closing the geographical gap in prenatal CCHD detection, resulting in improved outcomes for rural individuals with critical congenital heart disease.

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

To support the mental health of young children statewide, the Early Childhood Systems Program Manager led a learning collaborative with Zero to Three and the Packard Foundation to coordinate and align infant and early childhood mental health consultation (IECMHC) statewide. Partners in this collaborative included the Head Start collaboration office, EI/ILP, the Alaska Association for Infant Mental Health, the Alaska Mental Health Trust Authority, the University of Alaska Anchorage (UAA), the Child Care Program Office, and Southcentral Foundation. This work aligned with the work the Program Manager did as an advisory board member for Project BLENDS at UAA. Project BLENDS is a new interdisciplinary, advanced training program designed to prepare graduates in four related service disciplines to work collaboratively to support infants, toddlers, and preschool-age children with high intensity social-emotional needs and their families.

During the year, the Early Childhood Systems Program Manager sat on the state planning team for implementation of the Pyramid Model statewide. The Pyramid Model is a conceptual framework of evidence-based practices for promoting young children’s healthy social and emotional development. It builds upon a public health approach to providing universal supports to all children to promote wellness, targeted services to those who need additional support, and intensive services to those who need them.

She also facilitated a learning collaborative with the Center for Health Care Strategies in the Aligning Early Childhood and Medicaid Initiative. Partners in this work include OCS, the Division of Behavioral Health, Medicaid, staff from the Department of Health Commissioner’s Office, and other staff from WCFH. The initiative aimed to foster opportunities to align Medicaid and early childhood policies, funding mechanisms, and program implementation strategies that can drive strategic investments of COVID-19 fiscal relief funds. These efforts helped increase the capacity and quality of programs provided to families, improve linkages and coordination across programs, and worked to inform new family-focused services to address unmet needs. This initiative also focused on early intervention and early childhood mental health; maternal substance use disorder supports and home visiting programs; and expanded care teams that include community health workers, doulas, and early relational health staff. This initiative is scheduled to end in March of 2023.

Strategy 11.11: Continue to provide limited gap-filling pediatric specialty clinics as needed and as resources allow.

The State of Alaska through WCFH continued to host gap filling clinics for patients needing metabolic and neurodevelopmental services. The metabolic clinic sees both pediatric and adult patients from across the state and offers clinics three times a year in January, May, and September. The January clinic was held via telehealth, while in person clinics resumed in May for the first time since February 2020. Patients were seen in Anchorage and Fairbanks and patients, families, and providers all welcomed the opportunity to meet again in person. During the reporting year, the metabolic consultant saw 54 patients, and the metabolic dietitian saw 45 patients. Telehealth visits continued as needed and were well received by new parents of infants identified with a metabolic condition from the newborn bloodspot screening program seen in between clinics.

The Neurodevelopmental Outreach Clinic continued to serve patients, families and guardians in rural Alaska using neurodevelopmental physicians located within Alaska. Patients must reside outside Anchorage and the Mat-Su Borough (where there are already diagnostic practices) and be under the age of 6 years old to qualify to be seen. Clinics were offered via telehealth and patients lived in Ketchikan, Cordova, Petersburg, Juneau, Homer, Utqiaġvik, Soldotna, North Pole, Fairbanks, and Central. There were 40 referrals made to the clinic during the year, with 22 children seen and 20 children who received autism diagnoses. Because of a vacancy in the clinic coordinator position, no new clinics had been held for SFY23 as of 9/30/22.

Strategy 11.11: Convene a committee on priorities and coordination of services for CYSHCN including representation from rural areas.

The CYSHCN Advisory Committee met in December 2021, and in March and June 2022 to work on developing the role of the Advisory Committee and finalizing the new CYSHCN 5-Year State Plan. The Committee agreed on the following Vision, Mission, and Values:

At the heart of the vision, mission, and values are the needs of all children and youth with special health needs. In creating this focus the Committee believed all work aimed at improving services and resources for this population, should be family-centered, well-coordinated, and encompass all the needs of the child or youth, their family, and support systems of care too. While in seeking to improve equity in access to care and empower those with lived experience to become an essential part of the change process, led to a strategic framework that begins with three broad strategy areas for focus for the next 5 years:

1. Equitable Access to Care

2. System Growth and Improvement

3. Network Building and Partnerships

These strategy areas also reflect the overarching priority identified during the 2020 Title V Needs Assessment for CYSHCN, to increase or promote equitable access to medical and pediatric specialty care and family supports for Children and Youth with Special Healthcare Needs (CYSHCN).

Below is the strategic framework, which outlines the goal statements for each strategic focus area, and the priority strategies and key indicators that will help the CYSHCN Advisory Committee measure progress towards the goal statement. The CYSHCN 5-Year State Plan will be reviewed and updated annually, as progress is made or needs change.

In addition to the CYSHCN 5-Year State Plan being completed during the reporting year, a CYSHCN Summary of Data document was completed in March 2022. The document describes the CYSHCN population in Alaska, the types of conditions they experience, and how social determinants of health impact CYSHCN and their families. This document was also used to help guide the CYSHCN Advisory Committee define the focus for the CYSHCN 5-Year State Plan.