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 Department of Health (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 works to promote a system of care that is family-centered, integrated, collaborative, coordinated, and equitably accessible to all CYSHCN and their families.  In our work on the overall system of care, particular areas of focus are equitable access, funding strategies, concrete supports for the well-being of CYSHCN and their families, family navigation, and care coordination. 

 

The Washington State CYSHCN program endeavors to serve the broad population of CYSHCN in Washington state and adopts the federal definition of CYSHCN in determining eligibility for services.  An estimated 327,000 children and youth with special health care needs (CYSHCN) ages 17 and younger reside in Washington state; this is an estimated 20% of the population of this age group (National Survey of Children’s Health [NSCH] 2019-20). This is a similar percentage of CYSHCN as the U.S. (19%). 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 some enabling and direct services to children and their families.
• Technical assistance to providers via CYSHCN Communication Network meetings and other trainings as well as 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 and maxillofacial review boards
• Supporting education and outreach on Medicaid services for CYSHCN through an interagency agreement with our state Medicaid agency, the Health Care Authority (HCA)

 

The Child Health Intake Form (CHIF) system, which tracks CYSHCN who receive services through MCHBG and Neurodevelopment Center of Excellence (NDC) funding, increased from 12,486 children in 2014 to 19,424 children in 2019, a 56% increase over this period.  Although the number served falls far short of the total number of CYSHCN estimated for the state, this reflects the fact that the vast majority of funded services fall higher up on the health impact pyramid than the direct and enabling services counted here.

 

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 FY 2021, we concentrated much of our work on the medical home national performance measure (NPMs) for CYSHCN. When we created the new five-year state action plan in 2020, we had not originally 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.

 

50% of CYSHCN in Washington state had a medical home. This percent has remained relatively stable for the last four years. The percent is not statistically significantly different from the percent of children without a special health care need, (53%). In addition, 55% of CYSHCN had adequate insurance, less than the percent of non-CYSHCN at 71%. 24% of parents of CYSHCN reported that obtaining specialist care was “somewhat difficult”. Often parents describe barriers related to access to skilled providers. In the most recent Washington Five Year Needs Assessment, it was 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 that serve 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. Sixteen percent of Washington families raising CYSHCN 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 numbers where 25% of Washington families reported stopping or reducing work hours, but there is still a significant gap between families raising CYSHCN and those who did not have a child with special health care needs. The complexities of health care financing create an added barrier to both families and providers. The work in the CYSHCN program to support adequate insurance has shifted away from an enrollment focus to a focus on health care financing in general, to adequately meet the needs of CYSHCN and their families without unreasonable out-of-pocket expenses or financial barriers to accessing needed services.

 

The state action plan for the CYSHCN population domain was designed to address these barriers and is aligned with the evidence-based and -informed national Standards for Systems of Care for CYSHCN. Training and support on medical homes and community-based supports are needed for primary care practices and other providers, especially for 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 needed 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 FFY 2021 for Medical Home and Adequate Insurance priority areas.

 

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.

 

Care Coordination and Identification of CYSHCN

The Department of Health’s Title V staff continued to work closely with Washington State Health Care Authority (HCA), the state Medicaid administrative agency, 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 managed care organizations (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 work to incorporate 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 long-term impact on overall cost savings on the already overburdened health care system. Due to design characteristics of the current PRISM system, CYSHCN are largely under-identified, as their overall claims are significantly lower than adults with chronic disease, and the data are not focused on long-term financial savings over the life course.

 

DOH has partnered with the Department of Social and Health Services (DSHS) and HCA to add a “flag” (indicator) in PRISM that identifies any child who receives services through our Title V CYSHCN program, which is indicated in our CYSHCN Child Health Intake Form 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.

 

Our redesign of the CHIF database began in September 2018 and the new system launched in spring 2020. DOH worked with Medicaid to help fund this database build using 90/10 Health Information Technology for Economic and Clinical Health (HITECH) Implementation Advanced Planning Document (IAPD) funding. The CYSHCN program continues quality improvement activities to ensure the ongoing quality assurance and success of data matching between the CYSHCN program and HCA to address any errors and to sustain high match rates. During FFY 2021 we developed and piloted Health Information Exchange (HIE) integration so providers that submit data to the CHIF system can do so more seamlessly from their electronic medical record (EMR).

 

Autism Identification, Diagnosis, and Connection to Services System Development

The CYSHCN program, through a partnership with the University of Washington (UW), 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.  However, enhancing medical home for children with autism also helps to support practices to better provide a medical home to other CYSHCN. 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 contracted with the Washington State Medical Home Partnerships Project (MHPP) for CYSHCN to support the medical home NPM. The MHPP is co-located and works closely with the UW Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program. The MHPP is a Washington state Title V-funded technical assistance center for medical home for CYSHCN and for promotion and replication of comprehensive coordinated systems of care in communities for CYSHCN with autism and their families. 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.”

 

MHPP provides small grants to communities to enhance systems of care for autism through autism task forces. They also maintain a website, MedicalHome.org, for medical home resources to support providers, families, and CYSHCN partners statewide. 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, and developmental behavioral pediatric 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 has led the state in enhancing communities’ ability to diagnose and refer CYSHCN for autism through Community Asset Mapping and the School Medical Autism Review Team (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 model was developed in one CAM county and has been replicated in eleven additional counties. Nine other counties have been developing teams, and an additional two counties have expressed interest in the model. 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.

 

CYSHCN partners led technical assistance projects all over the state and were instrumental in the development of a robust sustainability plan for much of the work accomplished during our previous autism grant. A key accomplishment was the collaboration between many of our CYSHCN grant partners in expanding autism diagnostic training to community providers. 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.

 

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 still did not diagnose after going through the autism COE training because they reported still feeling unconfident of their skills.

 

To address this, Seattle Children’s Autism Center used Autism Cares funds from the CYSHCN program through the MHPP and brought in Dr. Kristin Sohl, the originator of Project ECHO (Extension for Community Healthcare Outcomes) Autism in Missouri in August 2018 to help partners figure out how to provide ongoing, deeper assistance to providers willing to evaluate and diagnose children if they had more resources and support. Seattle Children’s and UW LEND leaders, in partnership with community leaders statewide, were successful in getting 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 was a key workforce development effort in response to the lack of diagnostic services available in many communities.

 

In 2020, the COE and ECHO trainings became much more integrated with the SMART model, with many SMART teams participating in COE and ECHO training. 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.

 

The program continued to grow and increase integration in 2021.  There are now 2 cohorts of the Autism ECHO with one focused on younger children and one 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 two parent advocates/resource navigators) and 72 community primary care provider/psychologist “spokes.” 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, other spokes have been part of Great MINDS (Great Medical Homes Include Developmental Screening) and 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. This will help with community resource efforts for the Collaborative for Improvement and Innovation Network (CoIIN) for children with medical complexity, medical home, and other MHPP activities, and builds on earlier Pediatric Transforming Clinical Practice Initiative (P-TCPI) work. 

 

COE trainings moved online due to COVID-19 in 2020 and engaged many new providers across the state due to the virtual format. The virtual COE trainings in February, May and September 2021 had over 160 participants, with over 120 potential COEs and other representatives from public health, schools, early intervention, and other community partners. 45-50% of trainees have already followed through to be added to the official HCA COE list. Many also signed up for the 2021 ECHO cohort. Existing CAM communities and SMART teams are helping lead the way for more colleagues in new communities to join them and state partners, including DOH, HCA, Seattle Children’s, Medicaid MCOs, UW, and more. Many separate strands are coming together to form an accessible system of diagnosis and support for children and youth with autism and their families. MHPP staff have provided technical assistance to support new and current community coalitions.

 

Although federal autism grant funds previously supported much of this work with communities on improving care for children and youth with autism, MCHBG funds also provided substantial program management support and maintenance of the programs starting September 1, 2019, as part of the grant sustainability plan.

 

The Project ECHO Autism Washington training sent a detailed survey to all identified 100+ COEs this year asking for their confidence levels around a variety of topics including serving as a medical home for children with autism. This survey will be repeated yearly with COEs going through Project ECHO as well as all other COEs. The MHPP secured agreement from the UW LEND program, where Project ECHO is based, and the COE training lead at Seattle Children’s to share the data about the medical home question over the next five 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. Data from the 2021 ECHO Autism combined cohorts focused on 1) children and youth and/or more experienced diagnosticians, and 2) young children/new diagnosticians. 89% of all medical providers who participated in the trainings, indicated that they were confident in their ability to provide a medical home for their patients with autism. This is up from 82% in the 2020 cohort. When the two 2021 cohorts were looked at individually, the cohort of those who were serving all age and/or had more experience in diagnosing autism were uniformly confident in their ability, with 100% of participants reporting confidence in providing a medical hoe. Those in the cohort working specifically with younger children and/or who had less experience in diagnosing autism, still had high levels of confidence, with 81% reporting that they were confident in their ability to provide a medical home.

Nutrition Support, Workforce Development, and Systems Improvements

It is the position of the Academy of Nutrition and Dietetics (AND) that nutrition services provided by registered dietitian nutritionists (RDNs) and dietetic technicians, registered (DTRs) are essential components of comprehensive care for all people with developmental disabilities and special health care needs (AND 2015). To reiterate the importance of an RDN’s role in CYSHCN, the ACEND proposed 2022 Educational Standards Included learning activities that must prepare students to implement the Nutrition Care Process with various populations and diverse cultures including infants, children, adolescents, adults, pregnant/lactating females, older adults and people with disabilities. We continue to promote infrastructure and capacity building, including community based RDN skill development and building of interdisciplinary models of care (maxillofacial review boards, neurodevelopmental centers, feeding teams, and early intervention). This work was supported through a variety of contracts and partnerships.

 

Of note, onboarding of the new Nutrition Consultant began in March of 2021 with a vacancy in the position three months prior.

 

The Local Health Jurisdiction (LHJ) MCH Action Plans for 2020-21 often involved nutrition as a focus area in many of the counties. Early in the pandemic, a gap was identified that food insecurity was prevalent and a community implementation of ways to support innovative strategies to improve nutrition was a priority. King County focused on the 13 regions with low supermarket accessibility. All but one of these regions are in South King County areas with the lowest income and highest racial diversity. Several LHJ’s developed strong partnerships with schools and pediatricians that were initiating conversations about social-emotional health, nutrition, and access to care beyond the COVID-19 pandemic. Partner engagement was another important consideration for LHJs and one community decided to coordinate monthly Feeding Team meetings to allow for agency resource sharing and care coordination among service and therapy providers (Benton-Franklin). In addition, they developed formal and informal agreements between the health systems, including Medicaid Managed Care Plans, and various agencies serving CYSHCN throughout the county. Lastly, a reoccurring theme was promoting practices and policies that support breastfeeding in early learning programs.

 

The Assessment of Nutrition Services for CYSHCN completed in the fall of 2019 and published online in early 2020 identified 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 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. In fall of 2021, the nutrition consultant began brainstorming ideas with WIC staff on strategies to meet this need and implemented ‘WIC Office Hours’ in early 2022.  In April of 2021, the nutrition consultant met with 3 epidemiologists to discuss a comparison of Self-Reported Medical Conditions of Infants and Children Participating in WIC 2017-2018 from WIC’s old system to the new updated system (Cascades). We began to discuss better ways of tracking CYSHCN nutrition diagnoses in Cascades.

 

We partner with the UW Center on Human Development and Disability Nutrition program and provide MCHBG funding by contract as well. Our statewide Nutrition Network for CYSHCN is supported by this contract. In January 2021, a two-day virtual training in CYSHCN nutrition was conducted, with attendance by 9 RDNs. This capacity-building work increased the number of RDNs with training in CYSHCN as part of a statewide network to, 240 with at least one member serving 35 of the 39 counties. In May 2021 the Spring Nutrition Network series covered the diagnosis topics of Eosinophilic Esophagitis and Celiac by two dietitians from Seattle Children’s Hospital as well as ‘Anxious Eaters, Anxious Mealtimes’ presented by Marsha Dunn Klein OTR/L, MED, FAOTA to provide ongoing refinement of specialized nutrition skills and resources, and an opportunity to network and collaborate on relevant projects. A subgroup of the CMC CollN Hospital to Home workgroup developed and provided a 3-day training in spring of 2021 on supporting infant feeding and nutrition and caregiver perinatal mental health during the hospital to home transition process. The training was attended by 6 WA State feeding teams, totaling 45 attendees including RDNs, feeding therapists, family resource coordinators, and infant mental health specialists. A virtual journal club, which included Nutrition Network RDNs and feeding team members, was offered on the impact of race and immigration status on quality of care. The findings suggested that providing patient-centered communication may mitigate racial and cultural differences between providers and patients and is key to reducing disparities and improving immigrant patients’ satisfaction level with medical care.

 

In spring of 2020, the Nutrition contract conducted a needs assessment among Nutrition Network dietitians about challenges in providing nutrition services via telehealth to WA state’s CYSHCN. There were many requests for a webinar on a “how-to” on tele-nutrition, which was then provided in fall of 2020. UW contract holders researched and met with a membership management company to improve process of keeping Nutrition Network member information up-to-date. They purchased a plan that would help build member database as well as manage conference registration and a discussion board that would allow members to network with each other.

 

In the CYSHCN feeding team network, there are 36 interdisciplinary feeding teams with an RDN participating, with 13 counties having at least one feeding team. The figure below is a state map showing where Nutrition Network RDNs and feeding teams serve CYSHCN in Washington. The UW Nutrition program provides technical assistance to these teams, identifies areas of need, and helps support the development of new feeding teams. For example, the UW Nutrition contract holders met with the RDN and feeding therapists from an early intervention program to learn about how they function as a feeding team. Feedback was provided on how they can further improve their teaming as well as formalize the nutrition assessment process. The team was then added to the WA State Feeding Teams roster and to the CYSHCN Nutrition website’s “Locate a Feeding Team” page. Discussions on how to integrate the RDN better into their team was also provided to new forming teams.

 

 

Partnership work through the nutrition contract includes an interdisciplinary workgroup of providers, hospitals, family, and early intervention specialists to address ways to provide feeding supports for fragile infants transitioning from hospital to home. With support from the hospital to home workgroup, the Department of Children, Youth, and Families (DCYF), the lead agency for Washington’s Part C program, has created an enhanced list of diagnoses that automatically qualify a child for early intervention services. Representatives from DCYF were also invited to present at the spring Nutrition Network meeting to facilitate further collaboration between feeding teams and early intervention. Collaboration between the nutrition contract, LEND leadership and faculty, and faculty at a university preterm follow-up clinic started in the fall of 2019 to discuss development of a training curriculum for community feeding teams on fragile infant feeding. In 2021, the CMC CoIIN was approved for an extension year of funding. The nutrition contract contributes by researching recruitment strategies to attract dietitians serving underserved locations and populations to join the Nutrition Network.

 

Three of four 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 three teams that operate outside of a pediatric regional medical center. Our CYSHCN Nutrition Consultant supports these contracts and provides technical assistance to the MFRBs. Technical assistance included discussions of DOH funding exploring such as Targeted Case Management, involvement of streamlining MFRB work/data collection into the new CHIF database and onboarding new staff. Each of the three teams serves children from nine to ten counties in the eastern, central, and southwestern portions of Washington. Typically, their caseload of around 200 children is 75% or more Medicaid-insured.

 

The maxillofacial team coordinator supported by these funds is an allied health professional who coordinates 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 that have maxillofacial expertise, and often volunteer their time and services on these review boards. Data for each child served by these three 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, and to help identify gaps in service.

 

Our Nutrition Consultant, in partnership with our UW Nutrition contractors, is also in the process of updating our "Nutrition Interventions for CSHCN" publication. This is a textbook for CYSHCN dietitians on the nutritional needs of children with different health conditions. Work in FFY 2020-21 involved making author assignments, getting updated chapters from authors, and editing completed chapters. We hope to finalize this publication during FFY 2022-23.

 

Critical Partnerships with Other Programs

The CYSHCN program continues to meet with UW MHPP and UW LEND to discuss 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 CAM and SMART activities, providing support to the teams, along with the Project ECHO Autism Washington work. Our Title V Clinical Nutrition consultant also was accepted to the LEND program for the 2021-22 program year.

 

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 focus of the grant is on families who have a medically complex infant with a nutrition need such as a nasogastric (NG) tube or gastrostomy tube (G-tube), and 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 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 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, the majority of the partners outside of the hospital receive Title V CYSHCN funding, such as UW MHPP; UW LEND Nutrition; and PAVE, our F2F. 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 is wrapping up in 2022.  We have also been researching with the HCA on potential options for Medicaid funding to continue and expand the critical care coordination and family navigation components of this project.

 

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 of the 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.

 

National Performance Measure 15 – Adequate Insurance

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

 

The NSCH 2018-2019 shows that the percentage of children with adequate insurance in Washington state is 67.3%. However, among CYSHCN it is only 55.9%, demonstrating disparities for CYSHCN. Washington is a Medicaid expansion state, which affords many families the opportunity to access insurance coverage. However, for many CYSHCN, having high out-of-pocket expenses continues to make their insurance inadequate for their needs.

 

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 for assistance from community providers who are 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 course of the year, CYSHCN program team members provided assistance to families regarding access to and coverage for metabolic formulas. The most typical outcome continues to be referral back to the DOH Newborn Screening Program and the Biomedical Genetics Clinic for individual assistance.

 

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 is inefficient and somewhat arbitrary. These products meet the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) criteria for medical necessity and should therefore 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 given permission to continue to explore 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 in place of liquid formulas, which do 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 to study for 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 development of the five-year plan for the DDC.

 

CYSHCN program team members have helped multiple provider types with understanding 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.

 

Most of the CYSHCN program’s assistance to providers this year was about helping providers with billing questions, licensing, and credentialing with Medicaid managed care organizations. What seems most helpful is to use 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. The CYSHCN program has made some progress in helping providers understand billing and new billing guidelines. There is an ongoing need to help providers understand the process to reduce the number of denied claims.

 

A barrier is understanding the different rules and procedures with the five different managed care organizations and the different roles played in licensing, credentialing, and billing by DOH, HCA, and the MCOs. It is helpful for them to understand the criteria to reduce the billing error rate. Over the years, the CYSHCN program has assisted in solving billing problems, but there continue to be challenges for providers in this area. The CYSHCN program has started to strategize with HCA on a more systems-based approach to addressing this clearly systemic barrier, 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 type of issue. The MHPP program has created a billing guide for autism screening, evaluation, and diagnosis to support providers to maximize billing so they can continue to offer this important service throughout the state. This further reinforces our program goal to address health care financing as a key barrier to CYSHCN and their families – one that often keeps them from getting access to skilled providers.

 

There seems to be an increasing awareness by state agencies, medical providers, and families of EPSDT efforts in Washington; however, there is not as much understanding from families of CYSHCN regarding 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.

 

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. We have educated and provided support for coverage of care coordination for children through efforts aimed at 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 with the licensing division of DOH to ensure that licenses are processed in a timely way in order for children to have access to services, and to initiate continuous quality improvement activities around improving the ABA licensing process.

 

Additional Work Supporting CYSHCN

Family Professional Partnerships and Family Engagement

The Family Engagement Coordinator continues to support the Washington Statewide Leadership Initiative (WSLI), alongside Partnerships for Action, Voices for Empowerment, our state affiliate Family-to-Family Health Information Center. Together they serve as the backbone support for WSLI, providing funding and staff time to set up, facilitate, and follow up on meetings and decisions made, along with providing website and social media support for the group. WSLI is a collaborative that uses a collective impact model to better enable and enhance partnership connections between family-led organizations and their community- and state-level partners.

 

For more information on family professional partnerships and family engagement, see the Family Partnership section.

 

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 FFY 2021. More than 45 people attended each meeting, representing geographically diverse CYSHCN partners from each of the 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 the needs of families. They provide opportunities to hear updates on the variety of work that is happening on behalf of CYSHCN around the state, receive training and information on changes and emerging issues, and network to better partner and replicate successful practices across the state. These meetings are typically full-day, in-person meetings, but were transitioned to a shorter, virtual format in 2020 due to COVID-19 and have continued in the virtual format during FFY2021.

 

Additional Work Supporting CYSHCN at the Local Level

Work in the area of CYSHCNs is required of all LHJ partners. Most of the work done by our LHJ partners in this area continues to be care coordination, resource and referral activities and systematic change efforts. The main focus for most of our LHJ partners is in the arena of increasing the number of families that are connected to a medical home to provide holistic, individualized care for these families. Additionally, our LHJ partners work to increase access to health insurance and provide those services that may not be covered by that insurance, most specifically access to respite services for family care givers. Our LHJ leads serve as the connecting point for families in their county with the available resources and assist in navigating complex systems of care. In addition to this continued work, our LHJ partners have also undertaken the task of understanding the impact that the pandemic has had on children with special health care needs and their families to better assist in helping families recover from the pandemic. Some of these impacts have emphasized some flaws in our systems of care and their ability to weather changing health environments.

 

 

 

Benton-Franklin- The LHJ staff participated in a call with a local branch of one of our state universities Washington State University (WSU) having them look at providing a Board-Certified Behavior Analyst degree and certification process at WSU. With the help of staff members from Discovery Behavior Solutions, a private firm that partners with this LHJ to provide applied behavior analysis services to CYSHCN families, staff from this LHJ were able to convey the local need and the shortages throughout the state for this type of degree

 

Clark - An example of care coordination offered by this LHJ is best demonstrated by the story of a family in need of services.  The child, a recent arrival from Mexico was diagnosed with autism. With collaborative support of the child’s pediatric provider, the RN from this LHJ, the child’s guardian, and school, the child was able to have their needs met.  This included being evaluated in both English and Spanish, referred for dental and vision exams, referred to ABA, speech, OT, and caught up on vaccines.

 

Kitsap - Staff from this LHJ continued to work on creating a CYSHCN extended resource list which includes resources for Mental and Behavioral Health services, Respite Care, and Sensory Friendly entertainment. As resources began to reopen with COVID precautions, the list was a helpful summary of what is available, and it supported families in navigating community-based systems of care.

 

Sea King - The CSHCN team in this LHJ has identified a shared definition of Medical Home and figured out a system for tracking Medical Homes through Epic, one of the electronic health record systems that is used throughout the state. Once in place, the LHJ staff will be able to run reports that identify clients and communities in need.

 

Additionally, staff at this LHJ have worked with the King County Help Me Grow to develop and expand the network of service linkages available to CYSHCN clients. Staff from this LHJ and from Help Me Grow have completed development of a line of two-way communication that will benefit both programs. This system will continue to develop as the Help Me Grow program expands. This successful partnership will expand referral resources and access to care for marginalized CYSHCN families across King County

 

Whatcom - This LHJ convened multiple partner groups to discuss and strategize solutions for care services effected by the pandemic, including organizing focus groups of families, child-care providers and housing service providers.

 

Walla Walla - Staff of this LHJ have been working with a multidisciplinary team, which includes the Walla Walla Valley Disability Network, in preparation to present an “Inclusion Benefits Everyone” free webinar and Childcare Provider Training (with STARS accreditation) which will be held on November 12th & 13th. This webinar training session will help caregivers feel more comfortable and confident caring for children (from birth to 6 years old) with challenging behaviors, sensory issues, mobility, and motor challenges in the childcare setting.

 

 

Thurston - This county was chosen for a mini grant from DOH for the Essentials for Childhood, Inventory of What Works project. Staff of this LHJ collected information from throughout the county using a survey to develop a landscaped asset inventory to capture evidence based, trauma informed, promising practices, policies, and programs to prevent child abuse and neglect and strengthen family resiliency. This LHJ was able to identify policy strategies with strong focus on early childhood intervention strategies that may improve the lives of CYSHCN families in Thurston County.

 

Tacoma-Pierce - Staff of this LHJ have on going meetings with Managed Care Organizations in order to help educate and inform their care coordinators about resources available to CYSHCN within Tacoma-Pierce County. Additionally, they provide outreach to local providers to help them stay informed on services available and the referral processes for those services.

 

Spokane - LHJ staff have had an approximate 140% increase in connections with families in one quarter and have increased connections with more community stakeholders through trying to find resources for families. Some of these connections are:  Informing Families, local parent/community advocates, local food/clothing banks, housing resources, autism resources, a newly formed Parents Empowering Parents group, Kindering Joy Coaching, and a Facebook group for families with children with special needs. More families are reaching out through the phone number found on the website, while some are learning about services by word of mouth and reaching out.

 

Skagit - This county works with a promotora, specifically to do outreach to their Mixteco population. This individual has been making connections with the local farmworker communities and utilizing those connections in order to provide health navigation services for children with complex needs that may not otherwise be in a system of care

 

Overall Effectiveness of Program Strategies and Approaches

Many of the 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 around 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, as well as 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 a convener to create connections between communities and between 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 to continue to expand our meaningful partnerships and leverage our resources.