Overview

An estimated 311,138 children and youth with special health care needs (CYSHCN) ages 0 to 17 reside in Washington State, which is an estimated 19 percent of the population of this age group (National Survey of Children’s Health [NSCH] 2017-2018). The CYSHCN program at the Department of Health (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 federal fiscal year (FFY) 2019 we concentrated much of our work on the medical home and adequate insurance national performance measures for CYSHCN.

 

According to the NSCH (2017-2018), the percent of CYSHCN in Washington State with a medical home is only 45.3 percent, close to the previous 2016-2017 survey data of 45.7 percent. This is significantly less than the percent of children without special health care needs who have a medical home, 54.8 percent. The limited data available show significant variance in access to a medical home among CYSHCN in Washington between racial/ethnic subgroups.

 

The NSCH (2017-2018) shows the percent of children with adequate insurance in Washington State is 67.9 percent. However, among CYSHCN it is only 61.5 percent. Often parents describe barriers related to access to skilled providers. Services may be limited or non-existent to provide for a complex medical or behavioral health need in a location that is easily accessible to the family. Travel to a distant provider location results in additional expense, is sometimes impractical for families, and there are often bottlenecks in clinics that serve CYSHCN from a large region of the state. The complexities of health care financing provide 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 that of healthcare financing in general, to adequately meet the needs of CYSHCN and their families without unreasonable out of pocket expenses or financially motivated barriers to accessing needed services.

 

The 2015-2020 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 is 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 comparable enhanced care coordination services as those offered to adults with chronic diseases, with providers incentivized for successful outcomes.

 

The CYSHCN program’s block grant work includes two priority areas – medical home and adequate insurance. The following sections describe progress made and programmatic highlights during federal fiscal year (FFY) 2019 for these 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 Healthcare Transformation efforts and work to incorporate value-based care and alternative payment models, there in 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 is 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 (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.

 

The 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 will continue 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.

 

The database administrator position in the CYSHCN Program was realigned to a higher position classification and an additional focus was added in the position description to focus on process improvement and stakeholder engagement around the data collection needs of the program and the utility and future opportunities in using the new cloud-based CHIF database.

 

More broadly, the CYSHCN program, through a partnership with the University of Washington (UW), supported technical assistance on Community Asset Mapping (CAM) to local communities to build capacity for early childhood systems, and in particular, around the continuum of supports and services related to the screening, identification, diagnosis, and intervention of autism spectrum disorder and other developmental disabilities (ASD/DD). CAM is a process that identifies, organizes, and makes it possible to integrate a community’s existing resources, strengths, and gaps around health services for young children, their families, and the professionals who serve them.

 

The CYSHCN program contracted with the Washington State Medical Home Partnerships Project (MHPP) for CYSHCN to support the medical home national performance measure (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 children and family advocates who are working 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 0.2 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 (AAP); 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 been crucial in promoting the sustainability of the Pediatric – Transforming Clinical Practice Initiative (P-TCPi) Engagement Team and Physician Champions Team to engage patient’s families in brief, structured discussions of family decision-making around going to the emergency department (ED) versus their medical home with urgent health issues. They organized and led Zoom calls and email review where public health nurse regional care facilitators and family leaders helped pediatrician leaders think through both materials and the process of engaging with families on ED use.

 

MHPP has also been a key partner in our CARES autism grant work. They have 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.

 

The SMART team model was developed in one CAM county and has been replicated in four additional counties. Three other counties are exploring its adoption. 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 (PCP) and school team, who sees the child every day and engages the family. The SMART tool, available on line, and customized to each community, is available in English and Spanish.

 

The SMART process has been shared on multiple occasions as the quality improvement efforts have yielded new and exciting things to share with Title V communities, including as part of our Autism Spectrum Disorders and Other Developmental Disabilities (AS3D) Community of Learners, which is comprised of the four state grantees receiving Health Resources and Services Administration (HRSA) funding for autism systems improvement and care coordination through August 2019.

 

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 the 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 Team 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 Autism in Missouri in August 2018 to help partners figure out how to provide ongoing, deeper support 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 (Extension for Community Healthcare Outcomes) 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.

 

The Project ECHO Autism Washington leadership group plan to request additional funding for a SMART ECHO after establishing the value of the individual provider ECHO. 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 forward to bringing comprehensive, reliable evaluation for autism spectrum disorder closer to home for every child and family that needs it.

 

The launch of a new in-person COE training in southwest Washington in March 2019, followed by the start of the Autism ECHO model in late 2019 for participating COEs, heralds the start of a more robust COE system in our state. 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. The past half year has seen many separate strands come together to begin forming the outlines of 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.

 

It is now 10 years since the first Community Asset Mapping coalition began in Lewis County. Since then, MHPP has facilitated or participated in 14 CAM projects covering 18 counties.  Most of the coalitions with an autism and other developmental disabilities focus have flourished. 

 

Although federal autism grant funds supported much of this work with communities 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 CYSHCN program has worked, along with our partners, to identify opportunities to enhance culturally and linguistically responsive services to families for whom English is not their primary language. MHPP partnered with Open Doors for Multicultural Families (ODMF) to use Title V CYSHCN funds to pay for additional printed copies of transition resource documents in English, Spanish and Chinese for ODMF to distribute. There are five booklets in each language, and the booklets are available in other languages online.

 

The CYSHCN program met 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 a more statewide opportunity. LEND is increasingly involved in CAM/Autism/SMART activities and providing support to the teams and through Project ECHO Autism Washington.

 

The CYSHCN program has explored offering fellowships or internships with the CYSHCN program to support LEND fellows to learn about the important work of Title V and especially CYSHCN. A challenge has been to clearly identify a project that aligns with the scope of a LEND fellowship. Many aspirational ideas were discussed and the CYSHCN program hopes to continue to explore this in partnership with other MCH funded entities.

 

Washington’s CYSHCN program is one of ten states participating in a HRSA-funded Collaborative for Improvement and Innovation Network (CoIIN) for children with medical complexity. The Complex Care CoIIN 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.

 

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. For example, through P-TCPi work, we helped identify and adapt a toolkit from North Carolina for PCPs to aid them in helping families avoid unnecessary ED visits. The toolkit includes recommendations and language for how providers can promote their hours and availability to access a child’s PCP when there are emergent health questions.

 

The CoIIN grant also ties into and can build on the work of several of the P-TCPi regional care facilitators, who identified their regions were seeing major care coordination gaps between neonatal intensive-care unit (NICU) discharge and establishing primary care. 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 has a strongly clinical pilot as its focus so the HRSA funds were awarded directly to Seattle Children’s Hospital as the principal investigator. The CYSHCN program provides in kind staff support. In addition, the majority of the partners outside of the hospital are funded by Title V CYSHCN dollars, 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.

 

There seems to be an increasing awareness by state agencies, medical providers, and families of Early and Periodic Screening, Diagnostic and Treatment (EPSDT) efforts in Washington, however 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.

 

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 CoIIN work to support children with medical complexity, or resource development efforts to align with universal developmental screening (UDS) work in communities. We continued to promote infrastructure and capacity building, including community-based registered dietitian nutritionist (RDN) skill development and building of interdisciplinary models of care (maxillofacial review boards, neurodevelopmental centers [NDCs], feeding teams, and early intervention). This work was supported through a variety of contracts and partnerships.

 

In November 2018 a two-day training in CYSHCN nutrition was conducted, with attendance by 14 RDNs and one nutrition LEND trainee. This capacity building work increased the number of RDNs with training in CYSHCN as part of a statewide network to 221, with at least one member serving 35 of the 39 counties. There are 30 interdisciplinary feeding teams with an RDN participating in the CYSHCN feeding team network, with 13 counties having at least one feeding team. The figure above is a state map of where nutrition network RDNs and feeding teams serve CYSHCN in Washington. A nutrition needs assessment conducted in 2017-2018 indicated the need to continue to grow these community-based services through trainings, referrals, and improved provider/family communications.

 

We continue work to address community feeding supports for fragile infants transitioning from hospital to home. This fiscal year three Washington feeding teams were able to travel and attend an intensive training on fragile infant feeding. Two of the three teams were supported for this by state contract funds. Additionally in September 2019 the contract supported Seattle Autism Center’s Pediatric Feeding Program psychologist and RDN to provide five telehealth trainings on addressing avoidant restrictive eating in CSHCN (e.g., autism, prematurity) to an interdisciplinary feeding team in a rural area of Washington. Training of teams around the state using an ECHO model reduces location barriers to CYSHCN needing multidisciplinary treatment for this complex atypical eating behavior.

 

We partner with the UW Center on Human Development and Disability Nutrition Program and provide MCHBG funding by contract as well. Partnership work through this 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. In June 2019 this workgroup identified the need to build community capacity to support fragile infants. 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.

 

Three of four maxillofacial review boards (MFRB) in Washington State 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. Each of the three teams serves children from 9-10 counties in the east, central, and southwest portions of Washington. Typically their caseload of ~200 children is 75% or more Medicaid insured.

 

The maxillofacial team coordinator supported by these funds is an allied health professional that 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, have access to Medicaid services, and to help identify gaps in service.

 

Much progress has been made on strategies to increase provider capacity to deliver culturally and linguistically appropriate care coordination. One example is that, as a direct result of partnership with our program, the Center for Children with Special Needs (CCSN) negotiated with Seattle Children’s Hospital’s provider education program to add a common cultural responsiveness nursing objective to each Seattle Children’s Hospital Regional Grand Rounds presentation. Each presentation will be evaluated to measure the success of the cultural responsiveness objective. The CYSHCN program does not fund the Grand Rounds presentations and therefore does not have access to the evaluation data. The positive outcome, made possible through the CCSN contract’s federal MCHBG funds, is the structural change of the addition of the cultural responsiveness objective and evaluation.

 

National Performance Measure 15 – Adequate Insurance

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

 

The NSCH 2017-2018 shows that the percent of children with adequate insurance in Washington State is 67.9 percent. However, among CYSHCN it is only 61.5 percent, 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 and 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 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 (CHDD) 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 decision package request from the legislature to cover anticipated cost matches to the Medicaid covered service. This is 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. The program has also increased collaboration with the DDC to partner together in improving systems. For example, the Informing Families newsletter and resource guide published by the DDC includes links to DOH’s genetics Down syndrome resource and information page and has featured articles in their newsletter with contributions from the CYSHCN program.

 

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 NDC directors as they developed priorities and strategies for the shift from fee-for-service to managed care and worked to achieve the Centers of Excellence in Neurodevelopmental Services designation recognized by HCA, which allows them to initiate services without prior authorization and affords them use of special billing codes. Technical assistance topics included contract language from other states and how a Center of Excellence designation works.

 

Most of the CYSHCN program’s assistance to providers this year was about helping providers with billing questions. 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, 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 the belief among providers that they don’t have time and can’t understand billing. It is helpful for them to understand the criteria to reduce the billing error rate. Unfortunately over the years, the CYSHCN program has assisted in problem solving billing, but there does not seem to be consistent improvement among community partners in their ability to address their rates of claims denial. 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. This further reinforces our program goal to address healthcare financing as a key barrier to CYSHCN and their families – one that often keeps them from getting access to skilled providers.

 

Through our AS3D program, we identified Medicaid system issues that were corrected to ensure that providers could bill and get paid for services provided via telehealth. We continue to look for innovative and evidence-based strategies to improve access to comprehensive, coordinated systems of care and services for CYSHCN.

 

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).

 

Key strategies in the AS3D grant work plan focused on maximizing implementation of federal and state health laws, rules, and regulations to improve access to care for this population, partnering with HCA to pursue full implementation of all state Medicaid benefits for individuals with autism, and clarifying and maximizing autism benefits for those with private insurance. CYSHCN program staff who were partially paid through federal MCHBG funds contributed to this work by initiating and leading two ad hoc groups comprised of a cross-section of stakeholders and state agencies: (1) an “Access to Health Benefits” policy ad hoc group that focused on improving access to adequate public and private health insurance for CYSHCN through targeted efforts to promote payment/reimbursement reform, and (2) an “Applied Behavior Analysis (ABA) Workforce Development” ad hoc group that focused on identifying and pursuing strategic policy and partnership solutions to increase workforce and system capacity for identification, diagnosis/evaluation, early intervention and family support services for children with ASD/DD and their families.

 

We have completed a telehealth capacity assessment and strategic plan through our AS3D program. Additionally, we have worked with partners to leverage telehealth as a strategy for access to Medicaid covered services. Our telehealth strategic plan has been shared widely. Continued efforts are underway to sustain that work through partnership with our Office of Rural Health and identify opportunities to continue to address barriers and support communities to build telehealth capacity and infrastructure.

 

Our grant partners have worked with schools to ensure children with ASD/DD receive services outlined in their individualized education programs (IEPs), as well as exploring 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 timely 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 CYSHCN Director worked with the National Maternal and Child Health Workforce Development Center (WDC) to conduct a three-hour skills building session at the 2019 Association of Maternal and Child Health Programs (AMCHP) conference. The skills building session was a culmination of a WDC intensive technical assistance project completed the previous year. During that time, the CYSHCN program completed a structured business analysis on the needs of the Title V program to increase family and professional partnerships. A number of recommendations were made, with some directed to internal process improvement, and some recommendations focused on increasing the capacity of family leaders and family-led organizations to understand the programmatic goals of the Title V CYSHCN program and the MCHBG.

 

To prepare for the skills building session, the CYSHCN program adapted the business analysis into a replicable toolkit based on the process that was developed in our program. The toolkit resulted in a template for a 12-step process to develop a business analysis on family engagement. See the Family Partnership section for more information on our activities.

 

System Coordination and Collaboration

The need for coordination and collaboration across systems of care for CYSHCN is diverse and varied. It is the position of the Academy of Nutrition and Dietetics (AND) that nutrition services provided by 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). The CYSHCN Nutrition Consultant conducted a statewide needs assessment related to nutrition services for CYSHCN in 2017-2018. Due to staff retirement and hiring to fill the vacant position, work was resumed on the Assessment of Nutrition Services for CYSHCN in the fall of 2019 and the report was published online in early 2020.

 

Significant time, effort, and resources were committed to conducting key informant interviews and focus groups that included CYSHCN families and pediatric health care providers, as well as surveying pediatric dietitians across the state. Existing data on nutrition risk criteria from the Women, Infants and Children Nutrition Program (WIC) were used to estimate the number of CYSHCN seen at Washington state WIC clinics.

 

The needs assessment identified that families and healthcare 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 criteria, up to 26 percent (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 October 2018 the publication Cleft Lip and Palate: Critical Elements of Care was revised. This publication was produced by the CYSHCN program in collaboration with Seattle Children’s Hospital Craniofacial Center. It was created by a cleft lip/palate consensus team of primary care physicians, specialty providers, regional cleft lip/palate team coordinators, parents, and third-party payers. A central principle of the document is that children with cleft lip/palate are best cared for by an interdisciplinary team of specialists with experience in this field (this is the function of the maxillofacial review boards mentioned earlier in this document). The publication is an excellent example of coordination and collaboration across systems to support positive outcomes for CYSHCN and their families.

 

The CYSHCN program hosted three quarterly Communication Network meetings in FFY 2019 (the July meeting was cancelled due to scheduling conflicts). More than 40 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 the subjects of inclusion in child care, after-school programs and community participation, with a focus on the work of School's Out Washington. Another meeting focused on cross-systems ombuds and included presentations from the ombuds of mental health, developmental disabilities, and education systems. A Community Café style discussion convened to create “frequently asked questions” documents on the roles and services offered from the ombuds to support systems access and address barriers. The spring meeting focused on the maternal and child health five-year needs assessment, and Title V staff facilitated group discussions to gather input for the needs assessment.

 

These meetings are opportunities to meet with partners and problem solve issues people are experiencing 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.

 

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., data matching with Medicaid to identify CYSHCN and increase access to care coordination; activities such as 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 effectiveness of some state program activities, including projects led by CYSHCN program staff, as well as other contract activities, and as this capacity grows, so does our understanding of what’s working and what isn’t.

 

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.