III.E.2.b.v.c. State Action Plan Narrative by Domain

Children and Youth with Special Health Care Needs Domain Annual Report

Overview

The Children and Youth with Special Health Care Needs (CYSHCN) unit at the DOH resides in the Thriving Children and Youth section of the Office of Family and Community Health Improvement in the Division of Prevention and Community Health. The CYSHCN program promotes a family-centered, integrated, collaborative, coordinated system of care that is equitably accessible to all children and youth with special health care needs (CYSHCN) and their families. 

 

The Washington state CYSHCN program endeavors to serve the broad population of CYSHCN in our state and adopts the federal definition of CYSHCN in determining eligibility for services. 

In 2021, an estimated 350,000 CYSHCN aged 17 and younger lived in Washington state. This is an estimated 21% of the population of this age group. This percentage is not statistically significantly different from the national rate of 19%. (NSCH) The Washington CYSHCN program serves this population through:

• Grants to local health jurisdictions for local CYSHCN coordinators that work on systems improvement for CYSHCN in their local communities as well as offering enabling and direct services to children and their families.
• Technical assistance to providers via the CYSHCN Communication Network meetings and other trainings and contracts with the University of Washington Center for Human Development and Disability’s Medical Homes Partnership Project and Nutrition Network.
• Support for family engagement and leadership through the Washington State Leadership Initiative (WSLI) and contracts with family-led and family-serving organizations.
• Collaboration with other state agencies and providers on statewide systems enhancements to improve the system of care and care coordination for CYSHCN.
• Utilizing state funding to support a network of Neurodevelopmental Centers of Excellence (NDCs) and Maxillofacial Review Boards (MFRBs).
• Supporting education and outreach on Medicaid services for CYSHCN through an interagency agreement with our state Medicaid agency, the Health Care Authority (HCA).
• Utilizing a HRSA Pediatric Mental Health Care Access grant to expand resources for youth and families in crisis.

 

The Child Health Intake Form (CHIF) system, which tracks CYSHCN receiving direct services through MCHBG and NDC funding, captures an increase from 10,961 children served in 2016 to 14,268 children in 2021, a 32% increase. A small percentage of CYSHCNs receive direct services tied to MCHBG funding with most of the population benefitting from systems level improvements.

 

The 2020 needs assessment identified 2 priority needs:

• Identify and reduce barriers to needed services and supports for children and youth with special health care needs and their families.
• Promote mental wellness and resilience through increased access to behavioral health and other support services.

 

The state action plan for the CYSHCN population domain was designed to address these needs and is aligned with the evidence-based and -informed Standards for Systems of Care for CYSHCN. The CYSHCN program also engaged in a strategic planning process with families and partners in 2021. We developed goals aligned with the national Blueprint for Change’s 4 key areas: access to services, financing of services, health equity, and quality of life and well-being. Our first 4 goals address the first priority need: improving the overall system of care, providing equitable access, developing sustainable funding strategies, and enhancing family navigation and care coordination. Our final goal addresses the second priority need: providing concrete supports for the well-being of CYSHCN and their families. 

 

Training and support on medical homes and community-based supports are needed for primary care practices and other providers, especially those serving medically underserved populations. Families and providers need training, tools, and supports to build strong family-professional partnerships and address cultural and linguistic barriers to effective partnerships and care. Greater coordination and collaboration are required among state agencies and organizations, local community agencies and organizations, families, and other stakeholders to assure quality and increase access to needed services. The financing strategies of the health care system need to carve out a pediatric model that provides CYSHCN and their families enhanced care coordination services, such as those offered to adults with chronic diseases, with providers incentivized for successful outcomes.

 

The following sections describe progress made and programmatic highlights during FFY22 for our identified priority need to Identify and reduce barriers to needed services and supports for children and youth with special health care needs and their families. National Performance Measures associated with this need are Medical Home and Adequate Insurance.

 

National Performance Measure 11 – Medical Home

Percent of children with and without special health care needs, ages 0 through 17, who have a medical home.

 

The CYSHCN program at DOH works to increase access to comprehensive, coordinated, family-centered, and culturally responsive health care and related services needed for CYSHCN and their families. To accomplish this, we must address the gaps and weaknesses in the primary and specialty care systems that directly impact if and when a child gains access to needed services and supports. In FY22, we concentrated much of our work on the medical home national performance measure (NPMs) for CYSHCN.

 

In the 2020-2021 NCHS, 45% of CYSHCN in Washington state had a medical home. This percentage has remained relatively stable for the last five years. The percentage is not statistically significantly different from the % of children without a special health care need, 55%. 

 

Medical Home

Acronym	Meaning
COE	Center of Excellence
ECHO	Extension for Community Healthcare Outcomes (Project ECHO model)
HCA	Health Care Authority
LHJs	Local Health Jurisdictions
LEND	Leadership Education in Neurodevelopmental and Related Disabilities
MHPP	Washington State Medical Home Partnerships Project
NPM	National Performance Measure
SMART Teams	School Medical Autism Review Team

 

 

The CYSHCN program contracts with the Washington State Medical Home Partnerships Project (MHPP) for CYSHCN to support the medical home NPM. The MHPP is a Washington state Title V-funded technical assistance center for medical homes for CYSHCN and for promotion and replication of comprehensive coordinated systems of care in communities for CYSHCN with autism and their families. The MHPP is co-located and works closely with the University of Washington Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program. They provide support and workforce development to pediatricians, developmental clinicians providing habilitative services, as well as child and family advocates who work collaboratively to develop medical homes, integrated within their medical home “neighborhood.”

 

The Director of UW MHPP is funded by Title V CYSHCN dollars, as well as part of an FTE for an advanced registered nurse practitioner (ARNP) with developmental pediatric expertise. They have public health, nursing, developmental behavioral pediatric, and family expertise on staff, and collaborate closely with many state and local partners, including the Washington Chapter of the American Academy of Pediatrics (WCAAP); Partnerships for Action, Voices for Empowerment (PAVE), the Title V Family to Family Health Information Center (F2F); Medicaid; and the DOH CYSHCN program, to support and leverage local initiatives that improve care and decrease health inequities. MHPP maintains a website, MedicalHome.org for medical home resources to support providers, families, and CYSHCN partners statewide.

 

The CYSHCN program, through the partnership with MHPP has long supported technical assistance on Community Asset Mapping (CAM) to local communities to build capacity for early childhood systems. This work has identified a common community need around the state to improve the continuum of supports and services related to the screening, identification, diagnosis, and intervention of autism spectrum disorders and other developmental disabilities (ASD/DD). Therefore, much of our medical homework has focused on improving medical home for children with autism.  This work enhances the understanding of local services and statewide resources for CYSHCN and additional staffing that can support the needs of additional subpopulations of CYSHCN beyond those with autism.  It also brings historically siloed systems that serve CYSCHN (e.g., health care, schools, public health, and social services) together to collaborate on a more coordinated and integrated system of care.

 

The CYSHCN program continues investigate with UW MHPP and UW LEND ways to better leverage Title V dollars to benefit CYSHCN in our state. As the CYSHCN program continues to identify workforce development needed to increase expertise in our state to address the needs of CYSHCN, LEND is exploring expanding their program to reach more parts of the state. LEND is increasingly involved in autism-related initiatives outlined in the following section.

 

Autism Identification, Diagnosis, and Connection to Services System Development

With support from Title V funding, MHPP has led the state in enhancing communities’ ability to diagnose and refer CYSHCN for autism through CAM, supporting the School Medical Autism Review Team (SMART) model, facilitating the Autism Centers of Excellence work, and leading the Project ECHO (Extension for Community Healthcare Outcomes) Autism initiative.

SMART Model

The SMART model was created with Washington’s first autism grant (2008-2011), sustained with MCHBG funds after the completion of the grant, and then expanded and enhanced with the 2016 CARES autism grant. This program continues to be sustained through Title V funding now that the CARES autism grant has ended.

 

The SMART process brings community providers together with school and medical resources to provide a comprehensive diagnosis of autism spectrum disorder (ASD) for a child. It provides a close link between a child’s primary care provider and school team, which sees the child regularly and engages with the family. The SMART tool, available online, and customized to each community, is available in English and Spanish. The SMART model was developed in one CAM county and has been replicated in 15 additional counties. Three other counties have been developing teams, and an additional five counties have expressed interest in the model.

 

MHPP hosts SMART networking zoom calls monthly. Here communities with SMART teams or coalitions, or partners such as Yakima Children’s Village, share ideas and tips about what’s working and what they need help with.  In addition to MHPP attending, we usually have experts from the Seattle Children’s Autism center there, DOH representation, and HCA partners from the ABA program.

 

FY 2022 has been a dynamic year for the SMART network.  Teams in rural communities Okanogan and San Juan have started up.  Jefferson and Kitsap coordinators and clinicians have actively recruited colleagues to join the September and December Autism Center of Excellence (COE) trainings and will have enough COEs to begin in 2023.  MHPP staff attend the Pacific/Grays Harbor and San Juan SMART team monthly meetings and have been helping Jefferson and Kitsap get off the ground.  Clallam County is reforming and expanding with a new COE and 2 new Speech Language Pathologists from the Port Angeles school district who are now attending the SMART networking calls.  15 teams/coalitions received a total of $11,000 in support for their work.

 

Autism Centers of Excellence (COE) and Project ECHO

Many primary care providers are hesitant to diagnose or care for children with special needs, especially autism, because they feel they do not have the necessary skills or support. HCA began contracting with Seattle Children’s Autism Center in 2013 to provide Autism Center of Excellence (COE) certification training to interested community primary care providers in rural and other underserved areas to increase access to an ASD diagnosis for children with Medicaid.

 

Participation in this training allows primary care physicians to assess and diagnose children with autism, bill for the assessment, and refer to Applied Behavior Analysis (ABA) therapy that will be covered by Medicaid. In more recent years, Seattle Children’s faculty also promoted the SMART model as a practical strategy to help primary care physicians access interdisciplinary evaluation expertise and provide technical assistance to SMART teams.

 

With Title V support, MHPP oversees the organization of the COE trainings, recruits speakers and manages the logistics.  MHPP staff helped Seattle Children’s Autism Center faculty organize the regional trainings in 2018, drawing in CAM leaders and other community partners for recruitment and logistical support. This increased regional recruitment and attendance at the trainings. However, many qualifying providers report hesitancy to diagnose because of lack of confidence in their skills.

 

To address this, Seattle Children’s Autism Center used Autism Cares funds from the CYSHCN program through the MHPP to host a training with Dr. Kristin Sohl, the Project ECHO (Extension for Community Healthcare Outcomes) Autism in Missouri in August 2018.  The training focused on helping partners figure out how to provide ongoing, deeper assistance to providers willing to evaluate and diagnose children if they had more resources and support. In partnership with community leaders statewide, Seattle Children’s and UW LEND leaders, successfully received funding from the state legislature through the HCA for a two-year Project ECHO Autism Washington pilot in 2019-2021.

 

When enhanced with the ECHO model, COE training provides a collaborative space for the primary care providers to staff cases, receive ongoing education, and develop their expertise in diagnosing and supporting CYSHCN with autism. This is a key workforce development effort in response to the lack of diagnostic services available in many communities. The COE and ECHO trainings are integrated with the SMART model, with many SMART teams participating in COE and ECHO training. These efforts form the new INCLUDE collaborative - Interdisciplinary Network of Community Leaders focusing on Underserved and Disability Education. The active interest and concrete support of HCA and Seattle Children’s Autism Center to collaborate with and expand the SMART team model in conjunction with COE trainings is an exciting step toward bringing comprehensive, reliable evaluation for autism spectrum disorder closer to home for every child and family that needs it.

 

During FY22, the program continued to grow and increase integration. There are now 2 cohorts of the Autism ECHO -- one focused on younger children and the other on the lifespan. The MHPP lead is part of the Hub team for Project ECHO as the public health Community Connector. Project ECHO meets twice a month for 90 minutes. The Hub team includes 10 interdisciplinary faculty (including a self-advocate and 2 parent advocates/resource navigators) and 85 community primary care providers/psychologist “spokes.” MHPP staff participate as Community Connectors in the 2 ECHO cohorts. At each meeting, they discuss a patient case presented by a spoke and listen to a short didactic lecture. Many spokes are also currently part of SMART teams, others have been part other DOH/MHPP initiatives in the past, so MHPP involvement helps to support the ongoing Title V public health connection. MHPP is working with family leaders, self-advocates, and LEND faculty to identify community and other resources for ECHO participants.

 

There is a lot of connection between SMART teams and ECHO participants.  Most SMART teams have one or more COEs involved in ECHO.  MHPP involvement with both activities strengthens this synergy.  We have also been able to bring learnings from the Diversity, Equity, Inclusion, Justice Team to ECHO work. This includes explicitly naming the diversity, equity, and inclusion barriers and challenges families and communities face as part of the case presentation and discussion. 

 

The ECHO Intellectual/Developmental Disabilities (I/DD) Resources Navigation project started in March 2022. MHPP staff joined the Hub team to provide systems, parent/family support expertise, and to help with recruitment. The UW also supports other parent/self-advocate Hub team members. The Resources ECHO meets once a month. We have grown to over 240 registered participants and usually have 85-100 people at each meeting. Most SMART teams have one or more members participating in the Resources Hub, including the local CYSHCN coordinators. There is great potential to collaborate and leverage the learnings from the care coordination work described below.

 

 

The Project ECHO Autism Washington team surveys all identified COEs about their confidence levels about various topics, including serving as a medical home for children with autism. This survey is repeated annually with COEs going through Project ECHO and all other COEs. The MHPP secured an agreement from the UW LEND program, where Project ECHO is based, and the COE training leads at Seattle Children’s to share the data about the medical home question over the next 5 years. These data are the basis of our ESM: Percent of primary care providers participating in the ECHO Project who indicate they can provide a medical home to their patients.

 

The University of Washington’s LEND program encountered some changes in the administration of their ECHO Autism program resulting in delays in providing the pre- and post-intervention surveys this past year. As a result, there were data from only 9 primary care provider trainees who completed the survey in the same manner as prior cohorts. All 9 individuals rated themselves as either “confident” or “highly confident” in their ability to provide a medical home for their patients with an autism spectrum diagnosis. At the time of submission, the program is preparing to send another round of surveys to program participants. We expect to have results in the next few months.

 

Nutrition Support, Workforce Development, and Systems Improvements

CYSCHN Nutrition and Feeding Networks

A key element of our Title V CYSHCN work is to improve nutrition services and supports for CYSCHN through the development and ongoing support, training, and technical assistance for the statewide CYSHCN Nutrition Network and Feeding Teams. We partner with the UW Center on Human Development and Disability Nutrition program and provide MCHBG funding to support this work. We partner with the UW Center on Human Development and Disability Nutrition program and provide MCHBG funding to support this work.

 

The figure below is a state map showing where Nutrition Network RDNs and feeding teams serve CYSHCN in Washington. In the CYSHCN Feeding Team network, there are currently 29 interdisciplinary feeding teams with an RDN participating, with 17 counties having at least one feeding team.

  

The UW Nutrition program provides technical assistance to these teams, identifies areas of need, and helps support the development of new feeding teams.

• Some examples are:
  The UW Nutrition contract holders hosted a discussion with Jefferson County Public Health on their CYSHCN work plan on increasing referral resources for children needing nutrition-related services. They also held an interview feeding team in Spokane to determine eligibility to be supported by contract activities and introduced Clallam County feeding therapists to Nutrition Network dietitian in Spokane to form feeding team through telehealth.
• TA was provided to Island and San Juan Counties’ Feeding Team Development with 6 attendees to discuss and identify an RD to serve on community feeding team serving these counties.
• In October 2021, the contract holder provided a presentation to WA state programs serving CYSHCN on new pediatric feeding disorders ICD-10 code and nutrition and feeding resources in WA state.
• Finally, WA PAVE asked for reliable resources to share with families affected by the infant formula shortage on their website and a handout with talking points for concerning infant feeding practices including informal milk sharing, illegally imported European formulas, toddler formula, and homemade infant formulas was created to share with feeding teams and nutrition network.

 

Work in this area also includes development of new resources related to CYSHCN nutrition. Our Nutrition Consultant, in partnership with our UW Nutrition contractors, is updating our "Nutrition Interventions for CSHCN" publication (also referred to as the pink book). This is a textbook for CYSHCN dietitians on the nutritional needs of children with different health conditions. Work in FFY 2021-22 involved making author assignments, getting updated chapters from authors, and editing completed chapters. There was a delay in work as one of the nutrition contractors was out on extended maternity leave with her newborn twins. We anticipate finalizing this publication during FFY 2023-24.

 

 

Supporting Nutrition Workforce Training

Training for registered dietician nutritionists (RDN) and others within the Nutrition Network related to the care and management of CYSCHN nutrition issues is a significant component of our work. Typically, we hold a 2-day virtual training each year (on pause in 2021). In May 2022, the Nutrition Network training totaled 62 attendees. The Spring Nutrition Network series covered the diagnosis topics of ‘Allergies and Gut Microbiome’ by a dietitian from Carolina Allergy and Asthma Center as well as ‘Short Bowel Syndrome’ and ‘Down Syndrome’ presented by 2 dietitians in the clinical field.  This space provided ongoing refinement of specialized nutrition skills and resources, and an opportunity to network and collaborate on relevant projects.

 

The Feeding Teams May 2022 training was attended by 24 WA State feeding teams, totaling 120 attendees including RDNs, feeding therapists, family resource coordinators, and infant mental health specialists. The topics covered ‘Supporting Fragile Infant & Parent with Feeding at the Breast/Chest’ by a Speech Pathologist (SLP) at the UWMC NICU, ‘Nutrition and Feeding Supports for the Child with a Tracheostomy’ by an RDN and SLP from Seattle Children’s Hospital as well as ‘Weaning from Tube to Food’ from a feeding team called Growing Independent Feeders.

 

Two virtual journal club options, which included Nutrition Network RDNs, were offered by nutrition trainees. The 2 articles discussed were ‘Nutritional Deficiency Disease Secondary to ARFID Symptoms Associated with Autism and the Broad Autism Phenotype: A Qualitative Systematic Review of Case Reports and Case Series’ and ‘Characterization of Information Hospitals Provide Parents on Tube Feeding, Including Tube Weaning’.

 

Enhancing Diversity, Equity, and Inclusion in the Nutrition Workforce

Diversity, Equity, and Inclusion (DEI) within the national nutrition groups were previously not at the top of the priority list. This has changed in the past several years. The Washington State Academy of Nutrition and Dietetics (WSAND) was awarded the 2022 Inclusion, Diversity, Equity, and Access (IDEA) Mini-Grant. As a result, the grant was able support free webinars and hire a Diversity Liaison. In May of 2022, the speaker, Angel Planells, MS, RDN, CD, FAND, presented on the topic: ‘Dealing with Our Differences to Come Together’. The WSAND website also has a Diversity Equity and Inclusion Resources page: Diversity - Washington State Academy of Nutrition and Dietetics (eatrightwashington.org) and Future Dietitian Diversity Guide – All Access Dietetics for members of WSAND. The clinical nutrition consultant has attended all webinars and has been a member of WSAND since 2021 and the State MCH Nutrition Council Liaison to the Association of State Public Health Nutrition (ASPHN) MCH Nutrition Council. The MCH Nutrition Council provides leadership to achieve optimal well-being through healthy eating and active living among the maternal and child health population, including those served by Title V/MCH Block Grant. They have an MCH Nutrition Council DEI Workgroup. This workgroup has worked on ‘Land Acknowledgment statements’ training and reimagined the “Integrating Health Equity into Learning Sessions” document as an educational resource for ASPHN members, committees, and Council work. ASPHN Prioritizes Diversity, Equity and Inclusion - ASPHN.

 

The local Olympia Area Dietetics Association (OADA) has also focused on diversity. They had speakers present on specific populations like LGBTQIA2S+ individuals who face disordered eating and held a panel discussion on diversity and inclusion in our practice and our profession with dietitians in the field.

 

Lastly, the Clinical Nutrition Consultant assisted in the interview process for the new WIC RDN Access Coordinator. The goal of this position is to establish long-range plans to reduce barriers and increase opportunities for Washington State’s local agency WIC staff to become Registered Dietitian Nutritionists (RDNs). The WIC RDN Access Coordinator will seek equitable pathways to strengthen the voice and representation of RDNs working in the Supplemental Nutrition Program for Women, Infants, and Children (WIC). The nutrition consultant will work with the WIC RDN Access Coordinator to help train the dietetic interns within WIC. Many bilingual non-RDNs who are WIC staff are integrated into their local community. This integration will help increase diversity within our state.

 

Addressing CYSHCN Nutrition Needs through WIC Partnership

The Assessment of Nutrition Services for CYSHCN completed in the fall of 2019 and published online in early 2020 recognized that families and health care providers value pediatric dietitians as an important part of the interdisciplinary care of CYSHCN. It also identified that Washington’s well-established CYSHCN Nutrition Network of dietitians is an advantage as we work to improve nutrition services for the CYSHCN population.  

 

Four recommendations to address gap areas emerged from the needs assessment:  

• Expand hospital and community nutrition coordination systems and referral processes. 
• Address nutrition workforce shortages and development needs. 

• Create methods for quantifying and tracking the statewide population of CYSHCN with nutritional needs.
• Facilitate innovative solutions for nutrition access (telehealth and medical home models). 

 

A key finding of the report was that based on existing data on nutrition risk factors, up to 26% (46,574 of 180,689) of infants and children participating in Washington’s WIC program in 2018 have a special health care need. This finding speaks to the benefit of CYSHCN training for WIC dietitians. It also highlights the need for coordination and communication across systems of care as CYSHCN transition from hospital to home and are seen in community settings. To better connect community nutrition and clinical nutrition for improved patient outcomes, the nutrition consultant has begun sharing dietitian contacts bi-annually as of 2022. The clinical contacts primarily come from Seattle Children’s and Mary Bridge, with a continued focus on reaching Eastern Washington. They are shared through Nutrition Network, and WIC dietitians and the list of providers. The contact sharing has received positive feedback, and Seattle Children’s reports, “It has long been a dream of mine to have a reference such as this,” and Mary Bridge, “I find myself calling and talking with WIC offices all around the region every week, but sometimes finding the correct contact info is challenging. Thank you for helping us be collaborative with each other Khim, what a great way to help our patients and each other.” 

 

In the fall of 2021, the Clinical Nutrition Consultant began brainstorming ideas with WIC staff on strategies to meet this need and implemented ‘CYSHCN-WIC Office Hours’ in early 2022. These monthly meetings are open to all 88 WIC dietitians and are led and supported by the nutrition consultant. Case studies that WIC dietitians are seeing in their community are discussed and are an opportunity to learn about resources, and recommendations are shared. The CYSHCN-WIC office hours have gained popularity, and in early 2023, nutrition education topics have been incorporated. In April of 2021, we began to discuss better ways of tracking CYSHCN nutrition diagnoses in the WIC Cascades data system but without our CYSHCN epidemiologist and the formula shortage occupying WIC state staff, this has been placed on hold in 2022.

 

Supporting Adolescent CYSHCN Nutrition

In the spring of 2022, the Clinical Nutrition Consultant completed the LEND program through as a public health trainee. She participated in 300+ hours of LEND Leadership and didactic training in academic, clinical, leadership, and community opportunities.

 

As part of her LEND training, the Nutrition Consultant learned more about adolescent health transition care gaps and services available to youth with special needs. In response to this need and interviews with community centers and dietitians teaching cooking classes, the nutrition consultant began to adapt Ram Chef Program, a culinary program that promotes health and independence for persons with disabilities and incorporates service learning for dietitians. In 2022, the DOH CYSHCN Nutrition Consultant began creating a new educator cooking module for adolescents with disabilities. The module is anticipated to be completed by the fall of 2023.

 

Improving Management of Complex Nutritional Needs of NICU Babies

Washington’s CYSHCN program is one of 10 states participating in a HRSA-funded Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity (CMC CoIIN). This grant offers great opportunities to leverage work already done through DOH-funded activities to support medical home coordination for babies with complex nutritional follow-up needs exiting the neonatal intensive care unit (NICU).

 

The CMC CoIIN grant focuses on families who have a medically complex infant with a nutrition need, such as a nasogastric (NG) tube or gastrostomy tube (G-tube). The purpose is to help them access and navigate community services after leaving the hospital. The federal funders have added a large data emphasis on medical home impact. This project was aligned with the ongoing work of the CYSHCN program and our community partners.

 

The CoIIN grant has worked to address major care coordination gaps identified by Title V between NICU discharge and establishing primary care, early intervention, and community supports. Through ongoing communication with the CYSHCN coordinators in each local health jurisdiction (LHJ), we hope to build on their initial findings and solutions. The CMC CoIIN focuses on a clinical pilot, so the HRSA CoIIN funds were awarded directly to Seattle Children’s Hospital as the principal investigator. During the 2021-22 extension year, PAVE (our F2F) has taken over the contract to work on dissemination and sustainability. The CYSHCN program provides in-kind staff support. In addition, most partners outside of the hospital receive Title V CYSHCN funding, such as UW MHPP and the UW LEND Nutrition. Feedback from these partners indicates that the CYSHCN Title V program funds allow them to have the capacity to support the CoIIN work and increases sustainability for the program as the grant ended this year. We have also been researching with the HCA on potential options for Medicaid funding to continue and expand this project’s critical care coordination and family navigation components. We are leveraging our Project ACCELERATE partnership to continue this work. More information about Project ACCELERATE is available in the section below under National Performance Measure 15-Adequate Insurance.

 

LHJs provide case management and care coordination and participate in, convene, and manage systems-level partnerships and activities to improve local and regional systems of care for CYSHCN and their families. Many LHJ care coordinators participate in community-level initiatives, such as the SMART team autism work, the CMC CoIIN work, or resource development efforts to align with universal developmental screening (UDS) work in communities.

 

Improving Type 1 Diabetes Support

In spring 2022, the Type 1 Diabetes (T1D) workgroup formed after a CYSHCN Coordinator noted an increase in diagnoses, diabetic ketoacidosis hospital admissions, near fatalities, and Child Protective Services (CPS) involvement with this population and, in turn, requested additional support for working with these families. In year 1, the group has grown to 45 members who share passion, ideas, and knowledge around T1D. The statewide workgroup members include: Seattle Children’s Hospital Pediatric Endocrinologists, Endocrinology social workers from SCH, Sacred Heart, & Mary Bridge, Diabetes Educators, Department of Social and Health Services (DSHS), Health Care Authority (Medicaid), representatives from Managed Care Organizations, PAVE, Caregivers of children with T1D, School Health Services RN Consultant from  OSPI, Executive Director Type 1 United, STIX Diabetes Program President & STIX Community Outreach, multiple CYSHCN Coordinators, Dietitians, and clinicians from Valley View Health Center.

 

 

 

 

 

 

 

 

 

CDC predicts rising cases of diabetes among teens

The number of people in the US younger than 20 with Type 2 diabetes could rise almost eightfold by 2060. The number with Type 1 diabetes could rise by up to 65%, according to a CDC study published in Diabetes Care.

 

 

In the first year of this project, the main goals have been to create and distribute a provider survey to identify gaps and use responses to inform the work of the group moving forward.  The project developed a resource page: Diabetes - Family to Family Health Information Center (familyvoicesofwashington.org) and an MCO guidance document. Two main themes identified in the provider survey are the urgent need for more support around the psychosocial complexity among youth and a need for community-based peer support groups. The Clinical Nutrition Consultant, the Behavioral & Adolescent Health Consultant and the CYSHCN epidemiologist have met with multiple other states to hear what they are doing to support T1D on a public health level.  In year 2, the projects and workgroup continue.

 

National Performance Measure 15 – Adequate Insurance

Percent of children, ages 0 through 17, who are continuously and adequately insured.

 

When we created the new 5-year state action plan in 2020, we had not included NPM 15 – Adequate Insurance for 2021-2025. However, last year we decided to re-include NPM 15. There is much overlap between our and our partners’ work on medical home and our work to improve coverage and families’ use of available coverage for services.

 

The NSCH 2020-2021 shows the percentage of children with adequate insurance in Washington state was 72%. However, the insurance coverage rate among CYSHCN is only 62%, indicating the existing disparities.

Washington is a Medicaid expansion state, which allows many families the opportunity to access insurance coverage. However, for many CYSHCN, high out-of-pocket expenses continue to make their insurance inadequate for their needs. 24% of parents of CYSHCN reported that obtaining specialist care was “somewhat difficult”. Parents often describe barriers to access skilled providers. The most recent Washington Five Year Needs Assessment, reported that services for complex medical or behavioral health needs were limited or nonexistent in certain locations, making access for families difficult. Necessary travel to a distant provider location can result in additional expense and is sometimes impractical for families. This often creates bottlenecks in clinics serving CYSHCN from a large region of the state.

There is also limited access to Medicaid Home and Community Based Waiver Services in the state, which makes obtaining adequate coverage for CYSHCN whose families are over Medicaid income limits difficult and often impossible for those without intellectual disabilities. Nineteen percent of Washington families raising CYSHCN reported in the 2020-2021 NSCH survey that they stopped working or reduced working hours to provide care, compared with 3% who did not have a child/youth with special health care needs. This represents an apparent improvement over 2018-19 where 25% of Washington families reported stopping or reducing work hours. However, there is still a significant gap between families raising CYSHCN and those who do not have a child with special health care needs. The complexities of health care financing create an added barrier for families and providers. The work in the CYSHCN program to support adequate insurance has shifted from an enrollment to a focus on health care financing to adequately meet the needs of CYSHCN and their families without unreasonable out-of-pocket expenses or financial barriers to access services.

 

Medicaid Access, Payment, and Reimbursement

DOH has a Medicaid Interagency Administrative Reimbursement contract with HCA to cover staffing hours for CYSHCN program staff to assist families and providers in navigating insurance and billing issues for Medicaid. DOH maintains a log to track individual assistance provided to families whose CYSHCN are Medicaid clients. In general, the CYSHCN program continues to experience fewer direct requests for assistance from families and more requests from community providers directly assisting families. This appropriately reflects the goal to “move down the pyramid” to support enabling services, population health, and systems-building activities.

 

Over the year, CYSHCN program team members assisted families with access to and coverage for metabolic formulas. The most typical outcome is a referral to the DOH Newborn Screening Program and the Biomedical Genetics Clinic for individual assistance since this clinic has stockpiled formulas.

 

One ongoing issue for providers of these metabolic foods is navigating reimbursement processes through MCOs, which limits consistent access to necessary metabolic formula. The administrative processes surrounding the provision of these formulas are inefficient and somewhat arbitrary. These products meet the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) criteria for medical necessity and should be covered by the Medicaid state plan under the EPSDT benefit.

 

The CYSHCN Director re-initiated a conversation with the Medicaid agency Enteral Foods and EPSDT Manager to discuss the possibility of providing Medicaid reimbursement for these products. After exploration with coverage parameters at the HCA, we were permitted to continue exploring Medicaid coverage for these products. This process is complex. The CYSHCN program worked with the UW Center on Human Development and Disability Biomedical Genetics Clinic to determine if data can be made available to demonstrate the cost offset to substitute metabolic low-protein foods instead of liquid formulas, which have current coverage. Understanding the billing codes to be used for successful billing and the means of distribution of these specialty products is another challenge that will determine if coverage can be provided with existing resources or if there will need to be a legislation decision package request to cover anticipated cost matches to the Medicaid covered service. This work was delayed due to COVID-19 and staff outages. It is currently a work in progress and is a great example of deriving a policy solution to a complex problem.

 

The CYSHCN Director is our DOH-delegated representative to the Developmental Disabilities Council (DDC) and has participated in regular meetings. Much of the work this year focused on the implementation of the new five-year plan for the DDC.

 

CYSHCN program team members have helped multiple provider types understand Medicaid EPSDT rules and how these impact client access to Developmental Disabilities Administration (DDA) waiver services. The CYSHCN program provided technical assistance to neurodevelopmental centers.

 

This year, most of the CYSHCN program’s assistance to providers was about helping them with billing questions, licensing, and credentialing with Medicaid-managed care organizations. Offering a variety of ways to provide technical assistance, such as quarterly meetings with newborn screening/metabolic clinics, Nutrition Network member trainings, SMART team meetings, COE trainings, and individual provider technical assistance, seem to be the most helpful to providers.

 

A barrier for providers is understanding the different rules and procedures of the 5 MCOs and the roles played in licensing, credentialing, and billing by DOH, HCA, and the MCOs. It is helpful for them to understand the criteria for reducing the billing error rate. Over the years, the CYSHCN program has assisted in solving billing problems, but providers still have challenges in this area. The CYSHCN program has been strategizing with HCA on a more systems-based approach rather than providing individual technical assistance with no lasting resolution to these billing issues. We have also created information for providers to clarify whom to contact when they need assistance with a particular issue. The MHPP program has created a billing guide for autism screening, evaluation, and diagnosis to support providers to support providers to accurately bill so they can continue to offer this important service throughout the state. This need further reinforces our program goal to address health care financing as a key barrier to CYSHCN and their families – as it often prevents them from accessing skilled providers.

 

There is an increasing awareness by state agencies, medical providers, and families of EPSDT efforts in Washington. However, families of CYSHCN don’t understand what EPSDT is and why it is needed. They often see it as a barrier to getting services through Medicaid home and community-based services (HCBS) waivers. State agencies working to promote EPSDT seem to make parallel efforts and work in silos. The CYSHCN program will continue to work across systems and attempt to support better integration and coordination of services.

 

Care Coordination and Identification of CYSHCN

DOH’s Title V staff continued to work closely with HCA, on improved identification of CYSHCN through changes in data-sharing processes, as well as improvement of data and information sharing among other key system partners. Medicaid’s Predictive Risk Intelligence SysteM (PRISM) database, used by contracted MCOs, identifies patients who could benefit from comprehensive services in a “health home” with care coordination, based on risk factors associated with high claims and high utilization of specialty services.

 

With a shift in thinking around health care transformation efforts and incorporating value-based care and alternative payment models, there is an increasing awareness of cost-based risk models shifting more focus on adult care needs and chronic disease. While care coordination of CYSHCN increases the optimization of developmental outcomes, there are little data to show the long-term impact on overall cost savings within the already overburdened health care system. Due to the design characteristics of the current PRISM system, CYSHCN are largely under-identified, as their overall claims are significantly lower than adults with chronic disease due to their young age and therefore short time receiving services.

 

DOH has partnered with the DSHS and HCA to add a “flag” (indicator) in PRISM that identifies any child receiving services through our Title V CYSHCN program, indicated in our CYSHCN CHIF database. The addition of this CYSHCN indicator to PRISM allows the MCOs to sort client data specifically to identify CYSHCN. MCOs can then use the CYSHCN “flag” as a single data point that alerts care management staff of the increased need for these children to have coordinated and comprehensive services through their health plans. Prior to this enhancement, MCOs had no way to reliably identify CYSHCN in their data systems. We continue to work to refine our CHIF system so more CYSHCN can be flagged and to work with HCA and MCOs on utilization of the CYSHCN flag. 

 

During FFY22, we partnered with HCA and PAVE to participate in Project ACCELERATE (Advancing Care Coordination through Evidence; Leveraging Existing Relationships Around Transforming PracticE). This national project brings together Medicaid Medical Directors, MCH/Title V Directors, and patient advocates in state teams to distill the latest PCORI-supported findings related to enhanced care coordination for CYSHCN and identify strategies best suited for their state-specific landscapes for dissemination. This project has helped forge stronger partnerships with HCA and family leaders and receive technical assistance from other states and national leaders on care coordination. We have also brought in partners from our Developmental Disabilities Administration (DDA) to participate in this work.

 

Maximize Implementation of Federal and State Health Reform

Title V staff continued to work with multiple partners and stakeholders to seek, identify, and address issues as they surfaced services for CYSHCN.  We have educated and provided support for coverage of care coordination for children through efforts supporting the regional Accountable Communities of Health (ACHs).

 

Our grant partners have worked with schools to ensure children with ASD/DD receive services outlined in their individualized education programs (IEPs) and to explore opportunities for ABA to be covered for school-based health services. We have worked with our grant partners and DOH’s licensing division to ensure that licenses are processed on time so children can access services and initiate continuous quality improvement activities to improve the ABA licensing process.

 

State Performance Measure 10 – Suicidal Ideation

This section details work to address the second priority need identified in our 2020 needs assessment: Promote mental wellness and resilience through increased access to behavioral health and other support services. The state performance measure associated with this work is

SPM 10: Suicide ideation among youth with special health care needs.

 

In 2021, 38% of 10th grade students with special health care needs reported engaging in suicidal ideation in the prior year. (Healthy Youth Survey)

 

Historically, CYSHCN with primarily behavioral health needs have not been a strong focus of Washington’s program. HCA and other offices at DOH focused on injury and violence prevention primarily work in youth behavioral health.   Our work this year has been to increase our capacity in this area and develop connections with others working to improve behavioral health for children and youth in Washington. 

 

Increasing Data about CYSHCN Mental Health Needs

The first step in this endeavor was to establish better baseline data on the behavioral health needs and suicidal ideation of CYSHCN. Data for this measure come from our state’s Healthy Youth Survey (HYS). The CYSHCN epidemiologist and CYSHCN director worked closely with the HYS team and a coalition of disability organizations to improve the disability screener within the HYS. The new screener will allow us to better identify CYSHCN within the survey and differentiate the responses and needs of CYSHCN with different types of disabilities. The updated screener will be implemented in the 2024 administration of the HYS. 

 

Improving Access to Pediatric Mental Health Care

The CYSHCN team also partnered with DOH’s COVID Behavioral Health Strike Team and Seattle Children’s Partnership Access Line (PAL) to secure a HRSA Pediatric Mental Health Care Access grant in the fall of 2021. This grant is focused on expanding crisis care services to youth and families in eastern Washington (a rural and frontier area of the state with significant gaps in behavioral health care) through an enhancement of PAL and collaboration between the Seattle Children’s Crisis Care Consultation Clinic and Frontier Behavioral Health in Spokane. We have leveraged this funding by braiding it with MCHBG, state funding, and Medicaid funds to support adding a new staff member to our CYSHCN team focused exclusively on behavioral health and adolescent transition. The new staffing addition and the new partnerships created through this grant have greatly increased our capacity to address this priority need. We participate in the Children and Youth Behavioral Health Workgroup and subcommittees and have forged connections with state and regional Family, Youth, and System Partner Round Tables (FYSPRT) and regional crisis care collaboratives. We are working more closely with our HCA colleagues on Behavioral Health issues and have improved our connections with other DOH teams working on child and youth behavioral health.

 

Additional Work Supporting CYSHCN at the Local Level

System Coordination and Collaboration

The need for coordination and collaboration across systems of care for CYSHCN is diverse and varied. The CYSHCN program hosted quarterly Communication Network meetings in FFY22. More than 45 people attended each meeting, representing geographically diverse CYSHCN partners from each Medicaid-contracted MCOs, medical and community groups and providers, multiple state and local agencies, and family-led organizations.

 

The meeting topics, chosen with stakeholder input, included mental health and wellness supports for CYSHCN and their families, family navigation, peer supports, school-based services and supports, equity, and strategic planning. These meetings are opportunities to meet with partners and solve problems people experience in addressing their families’ needs. They are opportunities to hear updates about the work happening on behalf of CYSHCN around the state, receive training and information on changes and emerging issues, and network to partner and replicate successful practices across the state. These meetings were typically full-day, in-person meetings. They were transitioned to a shorter, virtual format in 2020 due to COVID-19 and have continued virtually during FFY22.

 

Family Professional Partnerships and Family Engagement

The Family Engagement Consultant (FEC) provides leadership to include family and community perspectives in policy and program development, oversees caregiver and lived-experience inclusion and outreach, and serves as a statewide subject matter expert in family engagement across Title V programs at DOH, local health jurisdictions, and contracted partners. The FEC provides navigation and connection to services to families who call or email the CYSHCN program seeking support or assistance.

 

The CYSHCN program created listening sessions with families as part of our ongoing needs assessment process during this reporting period. Local CYSHCN Coordinators also engage with families to assess local needs. For example, Clark County in Southwest Washington engaged in an extensive information-gathering effort with families. They collected feedback from a parent survey distributed to CYSHCN families receiving care coordination services and a broader sampling of families with children ages birth-5 currently living in Clark County to inform the development and maintenance of resource materials. They also conducted listening sessions to identify key themes with families of children with special needs. By early 2023, they plan to publish topical briefs on several key issues that families shared, and many briefs will have a call-out section about how that issue impacts CYSHCN, in addition to a report entirely about CYSHCN and their families. Each brief will include data from our survey and contextual secondary data, information about the importance of the issue, along with promising and innovative approaches to address the needs of CYSHCN and their families in the community.

 

The FEC continues to support the Washington Statewide Leadership Initiative (WSLI) for family leaders with PAVE. Together they serve as the backbone support for WSLI, providing funding and staff time to coordinate, facilitate, and follow-up on meetings and decisions made. PAVE provides technology support for the WSLI website and social media presence. The FEC creates a weekly newsletter of family leadership training events, advocacy opportunities, and educational resources. WSLI is a collaborative of family-led organizations and their community- and state-level partners.

 

For more information on Family Engagement efforts, see the Family Partnership section.

 

Maxillofacial Review Boards

Three of the 4 maxillofacial review boards (MFRB) in Washington receive CYSHCN program funding (state funds) to provide interdisciplinary care to children with oral facial anomalies such as cleft lip and/or palate. Our funding supports the 3 MRFB teams that operate outside a pediatric regional medical center. Our CYSHCN Clinical Nutrition Consultant supports these contracts and provides technical assistance to the MFRBs. Technical assistance included onboarding new staff, discussions of resources from the Pediatric Nutrition Care Manual (PNCM) – specific nutrition education for cleft lip/palate, guidance on interpreting growth charts and reviewing growth parameters specifically for cleft lip/palate population, a meeting with RN Consultants from Montana’s Maxillofacial program to compare processes and funding ideas, a review of 2 articles focused on bullying, discussion of learnings from the American Cleft Palate Craniofacial Association (ACPA) Team Coordinator Retreat, and 3 special guests from the Dental Program Manager with the Health Care Authority, the Program Manager & Access to Baby and Child Dentistry (ABCD) State Managing Director as well as the Outreach Specialist for the DentistLink program at Arcora Foundation. Each team serves children from 9 - 10 counties in Washington’s eastern, central, and southwestern portions. Their caseload of around 200 children is 80% or more Medicaid-insured. 

 

The maxillofacial team coordinator supported by these funds is an allied health professional coordinating individualized treatment plans developed by the review board team for children who require a combination of medical, surgical, feeding/occupational, and behavioral interventions. They frequently coordinate care among several community providers dispersed throughout their region with maxillofacial expertise and often volunteer their time and services on these review boards. Data for each child served by the 3 MFRBs are included in our CYSHCN CHIF database for tracking to ensure they are identified as a CYSHCN by Medicaid and have access to Medicaid services to help identify service gaps. 

 

All 3 MRFBs were given additional funding to accommodate the many psycho-social challenges that can accompany a diagnosis of a facial anomaly. The amendments included $3000 for each contract to go towards the use of an MSW Social Worker. The Tacoma MFRB team quickly put the money to use: “This quarter has been our biggest accomplishment. This program has never had a social worker to help provide psycho-social support. Our program was able to hire Lisa Loveland MSW in May of 2022 who has already made such a big impact. We couldn’t be more pleased with her helping families get services within Mary Bridge but also through the community. She has many years of experience in the Emergency room and has a wealth of knowledge that she brings to our team that no one else can provide. She observed the flow as well as shadowed me to see what family’s needs looked like from a clinical case manager approach. In June, she was able to call families prior to their appointments. She spent at least 30 minutes with some families hearing their stories, their struggles and helping them connect with services in their area. Many families need counseling, several of which are out by the ocean where even basic medical care is scarce. Pre- screening had a huge impact on our clinic! While many of the providers know the past medical history of the patients through a collection of information this RN provides, they are unaware of the barriers to care. Lisa was able to help share family dynamics prior to the family being seen.”

 

Neurodevelopmental Centers

The CYSHCN Team also supports grants to 19 Neurodevelopmental Centers of Excellence (NDCs) with state funding. NDCs are a group of community non-profit and hospital-based agencies who provide therapy and related services to young children with neuromuscular or developmental disorders. The centers are located across the state, each one meeting needs specific to its community. NDCs provide speech, occupational and physical therapies. They also offer consultation referrals based on a primary care provider's recommendation. Other services may include nursing, nutrition, social work, educational services, adaptive equipment, computer-assisted communication therapy, and hydrotherapy. NDC service coordinators work with families to help identify and meet their needs. They also teach families to find their way through the health care system and help coordinate care.  Many NDCs are also Part C providers for early intervention services.  Several partner with primary care Autism Centers of Excellence to support autism assessments in communities across the state as part of SMART teams.

 

 

 

Local Health Jurisdictions

All LHJ partners are required to do CYSHCN work. Most of the work by our LHJ partners in this area continues to be care coordination, resource, referral activities, systematic change efforts, managing systems-level partnerships, and activities to improve local and regional systems of care for CYSHCN and their families. The focus for most LHJ partners is increasing the number of families connected to a medical home to provide them with holistic and individualized care. Additionally, our LHJ partners work to increase access to health insurance and provide services that may not be covered by insurance, specifically access to respite services for family caregivers. The LHJ CYSCHN Coordinators serve as the connecting point for families in their county to available resources and assist in navigating complex systems of care. Many LHJ CYSHCN care coordinators participate in community-level initiatives, such as the SMART team autism work, the CMC CoIIN work, or resource development efforts to align with universal developmental screening (UDS) work in communities. Along with this continued work, our LHJ partners have also undertaken the task of understanding the impact of the pandemic on children with special health care needs and their families to better assist them in their recovery. Some pandemic impacts have emphasized the existing flaws in our systems of care and their ability to weather changing health environments.

 

During this reporting year, the CYSHCN Process Improvement Specialist worked to develop a Care Coordination Toolkit for CYSHCN Coordinators in response to feedback from coordinators about their training needs. This document provides a comprehensive training manual and reference guide for care coordinators on the system of care for CYSHCN in Washington State.  The toolkit was launched in the fall of 2022.

 

Overall Effectiveness of Program Strategies and Approaches

Many strategies and activities used to increase access to the medical home model of care and adequate insurance for Washington’s CYSHCN seem to be effective (e.g., family leadership training, resource and information sharing, and UW MHPP technical assistance contract activities for medical home and autism systems of care). We are still working to increase and strengthen our capacity to evaluate the impact of some state program activities, including projects led by CYSHCN program staff and other contract activities. As this capacity grows, so does our understanding of what is working and what is not.

 

We continue to leverage our role as convener to create connections between communities, agencies, and programs. Providing training on evidence-based decision-making, public health priorities and initiatives, and elevating the work of our community and statewide partners has helped us continue expanding our meaningful partnerships and manage our resources.