Vermont’s CSHN program has worked diligently to focus more on population-based and enabling services versus direct care and supports. Our programs and services continue to follow many children and youth from infancy into adulthood, from health newborns to some of the most medically fragile children in the state. Both the Newborn Screening and Early Hearing Detection and Intervention programs are housed within CSHN and are discussed elsewhere in this report. CSHN also continues to offer supports and services via our network of Medical Social Workers who provide care coordination for children with medical complexity and/or neurodevelopmental disabilities, as well as participate in systems-based work within their regional communities. Through an interagency agreement with Medicaid, CSHN administers the Children’s Personal Care Services (CPCS), Pediatric High Tech Nursing (HTN) Program, and Pediatric Palliative Care Program (PPCP). In line with the mission to fill gaps in the infrastructure, we continue to contract with a network of registered dietitians and one physical therapist to provide both consultation to partners and a small degree of direct services to CYSHN in need.

CSHN has worked for years to transition the delivery of medical clinics to our reginal medical centers that are better equipped to deliver these services now. The Cleft Lip and Palate clinic was the last clinic to be administered by CSHN, and after a year of planning and preparation with UVM Children’s Hospital, the clinic was officially transitioned in January 2019. CSHN is still available to these families for the provision of care coordination, systems navigation, and insurance access.

As reported last year, CSHN underwent an evaluation of our Care Coordination services in the summer of 2017, the recommendations from which continued to drive many of our programmatic improvements in concert with MCH national priorities. The first phase of the evaluation focused on medical home providers and their care coordinator staff. Medical home providers and care coordinators we interviewed using standard questions, and early qualitative analysis showed the following sample themes:

In July 2018, CSHN launched a new care management system developed with the Vermont Department of Health. This home-grown application is the product of a yearlong endeavor to capture much of the work our program does, drive our work towards best-practice, and allow us to proactively assist clients and families throughout their time enrolled within our program. In addition to basic information such as demographics, providers, and diagnostic information, the application is also equipped with the functionality to trigger tasks based on age or responses to certain questions. For example, as a client approaches adulthood, many time-based tasks are generated that prompt us to initiate conversations about transitioning to adult services with families, assist in identifying adult service providers, review options around guardianship, employment, and other essential elements of assisting youth to thrive as young adults. The second release of the application (slated to start in 2020 or 2021) will allow us to finetune some of the functionality and build out the reporting features that will allow us to more effectively communicate who we serve and how we serve them. Historically, our data system did not capture reportable data related to language preference, communication preference, cultural considerations, or racial and ethnicity data. Collecting and monitoring this data will be paramount in our future efforts to continually outreach and support our diverse population.

In October 2018 we successfully completed an 8-month technical assistance opportunity through UNC Chapel Hill to create an implantation plan for EPSDT Outreach and Informing efforts. Through an agreement with Vermont Medicaid, Outreach and Informing efforts have long been the responsibility of the MCH Division. Upon completion of the implementation plan, we developed an evaluation plan for our efforts through an opportunity with the CDC and Harvard School of Public Health. The evaluation will be conducted this summer by two MCH Interns. This work has involved ongoing commitment and collaboration between MCH, CSHN, Vermont Medicaid, and Vermont Family Network. The evaluation will include telephonic interviews with 500 Medicaid beneficiaries, an endeavor which will be conducted collaboratively with our VT Medicaid partners. In order to ensure a variety of voices are heard, we will also be conducting focus groups with youth advocates, CYSHN, migrant farm families, Native American/American Indian families, as well as New American families through the assistance of a cultural broker at Vermont Family Network.

The CSHN leadership continues to meet with VT Medicaid leadership to improve collaboration with Medicaid’s Chronic Care case management initiatives. In October 2018, Medicaid case management began actively outreaching newly enrolled Medicaid beneficiaries over age 18. The outreach involved a call from a nurse case manager, a 13-question screen, and appropriate referral and follow-up as necessary to ensure all connections were made successfully. Materials are also sent out as follow-up to both those where telephonic contact is successful or not. MCH/CSHN will be developing the screening tool and referral guidance for newly enrolled Medicaid beneficiaries who are less than 18, with a pilot date scheduled for September 2019 and full implementation by January 2020. Medicaid will also be tracking data specific to utilization of their benefits after successful outreach so we can continue to track if the methods are successfully driving newly enrolled Medicaid beneficiaries to access their benefit. This opportunity will allow us to connect Medicaid beneficiaries upstream to valuable resources such as Help Me Grow, WIC, CSHN, to name a few.

CSHN leadership continues to facilitate Vermont’s Medicaid Exchange Advisory Board’s EPSDT workgroup, comprised primarily of parents and caregivers, as well as advocacy organizations and state representatives, which is charged with identifying gaps in the EPSDT system, organizing recommendations, and providing feedback directly to Medicaid leadership to inform improvements.

Nursing services for children who are significantly medically complex, continues to be a priority area of improvement in Vermont. Utilization had improved somewhat with a rate increase in 2014, but has since stalled. Under MCH leadership and through robust stakeholder involvement, 4 innovative strategies are being explored to improve delivery of care to these medically fragile children and youth. All require significant leadership buy-in and representation from MCH and Medicaid, and thus far the efforts have been positively received. The strategies being explored include 1) Paid Family Caregivers, 2) Family Managed Services, 3) Hub Model Delivery, and 4) Payment Reform. All of these strategies are well underway in exploration, and the first two should be implemented by September 2019.

Collaborative efforts to improve delivery of EPSDT with Vermont Medicaid has been one of the most intensive pieces of work at CSHN this past year, and unquestionably one of the most exciting as well. After months of work to understand the current state of EPSDT within Vermont Medicaid, a strategic plan was created, first and foremost, to educate and refresh the most critical units within Medicaid, and then provide technical assistance around necessary improvements. One example that has come out of this work, is the development of a new EPSDT policy review process for any requested service where the medical necessity is in question or if it is determined medically necessary and covered by EPSDT, but no current mechanism for payment exists. This process has been piloted using PDSA cycles since January 2019 with the two primary units that authorize services for children, including CYSHN. Since, no services have been denied based on lack of medical necessity without an interdisciplinary review, nor have they been denied based on technical or systems issues. Furthermore, this information will be used to inform if certain services and supports should be considered as part of the regular Medicaid fee schedule.

VT remains committed to the enhancement of its Medical Home/CSHN Care Coordination Model, whereby we redefined and redeployed care coordination efforts by placing medical social workers, from the CSHN program, into medical homes. This re-designed CSHN medical social worker role emerged from the recent structural/system-wide redirection of the CSHN mission, away from fee-for-service-financial assistance and condition-specific clinics, towards a goal of supporting families and their children’s service providers in the coordination of family-centered care. This activity is coordinated with the Blueprint for Health expansion in its scope to include pediatric populations, Early Intervention (Part C), and the medical home training projects of the Leadership Education in Neurodevelopmental Disabilities (LEND) program at UVM.

The Pediatric Care Coordination Learning Collaborative (PCCLC), which emerged from Vermont’s work on the Lucille Packard Foundation grant (2012), has since been continued through the SIG. Led by primary care pediatrician Dr. Jill Rinehart (AAP chapter president) and supported by the VT Child Health Improvement Program (VCHIP) at UVM, this innovative collaborative brings many local resources together in both its planning and implementation including the American Academy of Pediatrics VT chapter, VCHIP, VT-LEND, Department of VT Health Access (Medicaid and health reform), and the MCH Division. The work of this PCCLC collaborative is to implement and evaluate the impact, sustainability, and financial implications of effective care coordination among VT’s participating pediatric and family medicine primary care practices, with meaningful engagement of patients, families, and representatives from community-based agencies and organizations. The PCCLC evidence-based curriculum for improving the practices’ care coordination efforts is built upon the foundation of several key works that outline the standards for effective care coordination.

The role of the CSHN social worker has now been well-established for years, and the impact of various grant-funded activities around Medical Home implementation continues to evolve and improve. The environment of care coordination for CYSHN also continues to morph and grow, and as such, our program continues to regularly engage in work to improve the delivery of services. The care coordination delivery system for CYSHN has in some ways become more confusing as new services and supports have been introduced. Care coordination is offered through the Blueprint, Medicaid, Medical Homes, for ACO attributed beneficiaries, with the children’s specialty center, Part C Early Intervention, and so on. In an effort to understand the new era of care coordination, CSHN engaged with a variety of families in different forums to gain their perspective on the quality of care coordination services they received, and what makes care coordination successful. What we learned from families can most succinctly be summarized by stating that one primary care coordinator is always preferable, and that their skills must align with the needs of the child (i.e. nurse care coordinators for those who are medically complex, social work care coordinators for those with social emotional support needs). Additionally, multiple care coordinators often make more work for families, rather than alleviate burden and provide the intended assistance. Engagement of care coordinators from a variety of organizations and roles demonstrated very similar impressions as those shared by families. Care coordinators shared that they often feel unsure of who is the “lead” coordinator working with a family, and this leads to confusion and potential redundancy or tasks slipping through the cracks. It has been the impression from this work that the adoption of care coordination for CYSHN has been excellent in Vermont, and now some refining of roles is required. Thankfully, both families and care coordinators have an appetite and interest in doing this work, and this will continue to be a high priority area for the coming year. MCH and CSHN Leadership are partnering closely with ACO and VCHIP Leadership to identify opportunities for improvement.

Best practice for transitions for CYSHCN into adulthood health care systems is gaining national attention and definition and has been identified as one of Vermont’s NPM. VCHIP facilitated a Transition Summit in 2016, bringing together stakeholders and interested parties to work in small groups, and resulting in efforts to hold hospital-wide discussions about transition from pediatric specialty care to adult specialty care. Education materials are planned for patients, families and providers to support transition of care, centered on specialty care practices at UVMMC. In addition, another collaborative VCHIP effort is utilizing small tests of change within “champion medical homes,” to develop and pilot a system for transitioning CYSHCN into the adult system of primary care. Through a grant to VCHIP, UVMMC was able to do patient experience mapping with transitioning youth and their caregivers, visually delineating some of the differences in need and perceptions of readiness in transitioning. As such, new techniques have been piloted with transitioning youth in a small number of the UVMMC Children’s Specialty Clinics, namely messaging bots. These messages go directly to the youth’s phone with reminders about appointments and suggested resources. Early data analytics showed significant engagement and the pilot has now expanded to three different specialties with the UVM Children’s Specialty Center. The project team also presented at the Transitions to Adulthood national conference in Houston in October 2018.

Other efforts to support Transitions to Adulthood have included statewide engagement in the regional Transition Teams. Based out of the VocRehab division of the Department of Children and Families, these transitions teams have historically been education and employment focused. With the integration of CSHN as a regular partner at the regional and leadership level, there’s been opportunity to grow necessary transition planning more holistically, while de-duplicating efforts that may be happening within the Medical Home. There is now an annual statewide transition summit for each regional team to attend together for the purposes of learning and improvement, and youth engagement has been such a priority area, that this year a Youth Summit specific to transition was planned and lead by and for transitioning youth.

CSHN continues to provide ongoing support to the VT Family Network (VFN), a statewide system of family support, by families to families, through: a support line, informational/ educational materials, support groups, “sib shops” workshops for siblings of CYSHN, training and education to empower families and caregivers to engaged in system of care improvement (the Family Leadership Series), enhanced financial and technical assistance to families statewide, and family engagement with the Medicaid Exchange Advisory Board and the Autism work group. Annual VFN conferences continue to bring several hundred VT families, providers, and policy makers together. Using Title V funding, CSHN provide a small grant to VFN to provide oversight and administration of the Supplemental Assistance Fund; awards are made to families when there are no other financing options. In addition, small allocations for respite care are made to families based on need, as determined by CSHN policy and administered by the CSHN Respite Committee.

VT is committed to cultural competency and outreach strategies to the New American and immigrant populations. CSHN continues to include funding in our annual grant to the VT Family Network to continue their VT Leadership Series, with the goal of growing and sustaining a strong group of passionate family leaders who will be engaged in a variety of state boards and councils within the system of care for CYSHCN. The Leadership Series trainee groups continue to be culturally, linguistically, and geographically diverse, rich in perspective and knowledge, supported by a grant performance measure demonstrating at least 10% racially diverse participants.

Vermont’s Birth Information Network was established by enabling legislation in 2002 and began with births occurring in 2006. CSHN continues to work closely with Division of Health Surveillance to follow up with families whose newborns have been born with any of the more than 40 specified health or developmental needs, contacting every identified family, ensuring connection to services and coordination.

For many years, CSHN has been the recipient of cycles of two newborn hearing screening grants, an MCHB EHDI grant, and a CDC EHDI cooperative agreement. These funding streams support the stability, quality, and effectiveness of the VT EHDI system, including universal in-hospital newborn hearing screening; universal outpatient follow-up through the hospitals for babies who were missed or need a repeat screen; accessible, in-state, non-sedated auditory brainstem response (ABR) for diagnosis of infants by the age of 3 months; mutual cross-border collaboration with EHDI programs in neighboring states; individual case management to assure completion of screening, diagnosis, and entry into early intervention; integration of EHDI program management and processes with Newborn Bloodspot Screening through their co-location in CSHN; and, electronic data integration through the VT Child Health Profile—accessible to Medical Homes. In addition, an expanding number of medical homes are now providing in-office OAE, with training and instruments provided by the EHDI team. Lay midwife practices have also received placement of and training in the use of OAE screening instruments; lay midwife practices deliver most of the about 200 VT babies born at home who, hitherto, did not receive hearing screening as newborns. As these non-hospital providers screen babies and children, the screening results are recorded in the statewide Child Health Profile, along with the data from birth hospitals.

We collaborated with UVM Medical Center (UVMMC) Department of Pediatrics in the successful recruitment and hiring of a Developmental-Behavioral pediatrician, with the long-term goal of transitioning Child Development Clinic functions to UVMMC, while maintaining its public health mission of early identification, diagnosis, and access to treatment in collaboration with families and community partners. The new UVM DBP arrived in April 2018. In preparation for the opening of her clinical practice, VDH and UVMMC created a new, blended, unified point of referral, triage and intake for the diagnostic evaluation of Vermont children with concern for developmental conditions. VDH re-designated its own Child Development Clinic clinical manager position, filled by a medical social worker with years of experience in direct clinical service in CDC, care coordination, and management, to lead the single point of entry for referral sources. Referral and intake paperwork have been redesigned. This single point of entry now serves the new UVM DBP program in Burlington, as well as the Title V/Medicaid-funded UVM Autism Assessment Clinic (AAC) in the Division of Child Psychiatry-Vermont Center for Children, Youth and Families (VCCYF), and the long-standing VDH Child Development Clinic (now with “hubs” in Barre and Rutland, serving the regions of the state that are the greatest distances from Burlington). VDH/Title V has also begun to fund a full-time medical social worker position at the UVM DBP program, while continuing to support the VDH/CSHN regional medical social worker positions that provide care coordination to children with special health needs, including children with developmental disorders, in a gap-filling model. In summary, at the end of CY 2018, the VT statewide network of comprehensive developmental pediatric evaluation services provided evaluations for children with developmental disorders (such as autism spectrum disorder, global and specific developmental delays, and conditions at risk for developmental disorders such as syndromes, seizures, brain injuries, and prematurity).

In 2019, the UVM developmental-behavioral pediatrician (DBP) began to see referrals, in a collaborative part-time partnership with the neuropsychologist from VDH CDC. The VDH CDC developmental pediatrician provides evaluations at the Barre and Rutland hub sites, together with contractors (a masters-level psychologist or an educational doctorate early developmental specialist, depending on site) or the CDC neuropsychologist. The target populations continue as described above, with age range from birth to age eight years. With the establishment of the UVM DBP program at the end of 2018, VDH no longer provides the CDC developmental pediatrician to staff the NICU follow-up clinic.

Since the inception of Part C, CSHN medical social workers in VT have had an integrated role to ensure streamlined navigation and care coordination for families. They work directly in CDC in the evaluation of children with ASD/DD; regionally based, they provide care coordination to families of children with a wide range of special health care needs; and, they also are core members of the regional Part C Early Intervention teams. Participating in care conferences in the Medical Home has further integrated these roles and reduced categorical/programmatic silos and fragmentation.

CSHN continues to participate in the leadership of re-invigorating efforts towards improving the system of care for children with ASD (autism spectrum disorder) and other developmental disabilities. Although VT continues to improve in our screening and evaluation of children at risk, like many states, we are experiencing a lack of access and capacity in treatment services. In response, the state’s Integrating Family Services leadership, in partnership with Children’s Disability Services and CSHN, continues to energize the VT Autism Workgroup, comprised of a multidisciplinary cross-section of stakeholders from across the state, including parents of children with ASD. The group is revising the State Autism Plan.

The Community Nutrition Network continues to be managed through the CSHN program. Comprised of a statewide network of contracted registered dieticians with expertise in pediatric nutrition, the program provides services related to weight, feeding issues, slowed growth, nutritional deficiencies, tube feedings, failure to thrive, inborn errors of metabolism, and complications related to co-morbid conditions. Title V and Part C have long been the only willing payors in VT for pediatric nutrition services delivered in community-based and family home settings (rather than hospital-based settings).

Partnerships

As described above, the Vermont’s CSHN program works in concert with a number of other state and community partners, including: VT Family Network; Children’s Integrated Services/Early Intervention; UVM Medical Center and VT Children’s Hospital; children’s divisions within the Departments of Mental Health (DMH), Children and Families (DCF), and Disabilities, Aging and Independent Living (DAIL);  Agency of Education; VT Child Health Improvement Program, VT Leadership Education in Neurodevelopmental Disabilities, the VT Chapters of the American Academy of Pediatrics and Family Medicine. CSHN actively participates on the Medicaid Advisory Committee and adds an important voice for children with complex medical needs that must be fully understood when making insurance policies within the changing landscape of health care reform.