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 healthy 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 January 2020, we transitioned our last medical clinical the University of Vermont Medical Center Children’s Hospital. As discussed later here, contracted work for direct service delivery of nutrition and physical therapy has also been transitioned away from requiring Title V funding; two small but significant changes allowing our program to continue focusing on the entire population of CYSHN. The only remaining direct service program at CSHN is the Child Development Clinic, which will be discussed further under the Action Plan.

After over a year of planning and in partnership with the provider network and Vermont Medicaid, CSHN successfully transitioned the payment for nutrition services for CYSHN to our state’s payors effective July 1, 2020. Nutritional services are medically necessary and fit within the scope of the Medicaid Act and fall under the EPSDT statute. Registered dietitians were an existing Medicaid provider type and the code and fee structure was already established. The transition was seamless, thanks to years of establishing a strong understanding within Medicaid about EPSDT.

In calendar year 2019, 156 children between the ages of newborn through 21 received services provided by this network of registered dietitians. Of the 156 children who received services in CY2019, 89% had Medicaid as either primary or secondary insurance - 74% of them had Medicaid as primary, and 27% of them had Medicaid as secondary. There were less than 10 individual children identified as having private health insurance or being un- or underinsured. For children and families who encounter any difficulty in accessing nutrition services, we will provide both financial technical assistance and maintain a medical necessity supplemental fund to bridge access to services until adequate insurance coverage can be established. Every Registered Dietitian who had previously been contracted with CSHN was successfully enrolled as a Medicaid provider in advance of the transition.

CSHN remains committed to supporting the existing infrastructure and increasing capacity of current Registered Dietitians caring for CYSHN. Clinicians or care teams providing services for CSHN will now have access to consultation and technical assistance of two Registered Dietitians who have training and expertise in addressing the nutritional and dietetic needs of children and youth with a variety of diagnoses, including those with complex medical conditions and developmental delays. Consultants will do the following:

• Develop and maintain an inventory of statewide nutrition services and supports that are available to CSHN
• Provide technical assistance and consultation to clinicians and teams caring for CSHN
• Conduct regional trainings for providers and teams caring for CSHN
• Engage in collaborative problem-solving around specific needs of CSHN with representatives of statewide agencies

As previously reported, 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. We continue to return to this feedback and build upon it as we engaged a wide variety of stakeholder in different ways to ensure that our work is evolving to meet the needs of our communities. 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 will allow us to finetune some of the functionality and build out the reporting features that will allow us to communicate more effectively who we serve and how we serve them. This is on hold due to the pandemic and IT resources devoted elsewhere. 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.

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.

Much of 2019 was focused on socializing ideas about the future of CSHN care coordination to decrease burden on families and support massive transformation efforts underway. Vermont’s single accountable care organization, OneCare Vermont (OCV) has for years, been trying to establish strong expectations for comprehensive care coordination in the medical home and invited MCH/CSHN participation to inform the pediatric care coordination reimbursement model for 2020. The outcome was that for children attributed to the ACO, the lead care coordinator assigned to that child can draw down monthly funds based on the care coordination activities accomplished. Of the nearly 700 children receiving care coordination through CSHN, over 90% are attributed to the ACO, thus eligible to reimbursable care coordination through their medial home. It seemed, that this would be an ideal time to encourage the delivery of care coordination for CYSHN through the Medical Home (vs. CSHN, a public health program), and instead support the medical home in doing so versus being an additional service provide for families and teams to have to coordinate with. For this to be successful, medical homes must have adequate staffing to do the care coordination and document that activities in the OCV platform to draw down associated funding. CSHN engaged in a pilot with one pediatric practice, where a care coordinator is fully embedded in the practice to build capacity and test if with a fully staffed team of care coordinators to do and document the work, will the promised funds sustain the staffing. Additionally, families at that practice will no longer receive direct CSHN Care coordination from outside the medical home because the resources are now embedded within the practice. We are 6 months into the pilot now, and due to the pandemic, it has been hard to measure impact, but preliminary reporting from families and the practice have been positive. Most notably, it has been reported that there is great relief that there is less differentiation for care coordinators that “specialize” between mental health, developmental disabilities, behavior health and medical complexity. The skillset to coordinate care is applicable across many different patient populations and having one who is comfortable in working with a variety of families and circumstances has been far more beneficial for practices and families alike.

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.

Collaborative efforts to improve delivery of EPSDT with Vermont Medicaid continues. In 2018 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 then, 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.

CSHN was invited to participate in a review of the current Disabled Children’s Home Care (DCHC) application process. In partnership with mental health and disability experts, the eligibility process was reviewed and refined to ensure that the process clearly identifies those children who are eligible for DCHC. VT has historically had a very inclusive enrollment however inconsistency in decision making has led to difficulties for families and providers in understanding who this waiver is intended to support. Ultimately, this negatively impacts families and children because the guidance, process and eligibility are unclear. CSHN was eager to participate in this process as one of the primary organizations that supports families in the DCHC process.

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. In October 2019, similar outreach began to newly enrolled beneficiaries less than 18 as well, using a screening tool and referral guidance developed by MCH/CSHN. The outreach involves not only reaching out to the guardians of the beneficiaries, but the minors themselves so they may gain some exposure in learning about their healthcare benefits. This process was informed by a youth advisory council who focuses on empowering youth to advocate and navigate the healthcare system. Medicaid is 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 were identified 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. In October 2019, two major policy changes went in to effect: paying parents/guardians who are Registered Nurses to provide services to their children, and a 40% increase in rates to the family managed nursing services allowing parents/guardians to recruit and hire their own nurses independent of an agency. Both policy changes have been applauded by advocates and families alike, and early utilization data shows a meaningful impact.

In response to the pandemic, CSHN partnered with Medicaid policy to obtain a waiver provision to allow parents and caregivers to draw down funding intended to pay for Personal Care Attendant services through our Children’s Personal Care Services program. Historically, paying parents to perform these duties has not been allowable under CMS, however given that many families were unable to access these services due the Covid-19 and were now providing all care and support on their own, temporary access was granted through the state of emergency. CSHN and Medicaid’s response to this crisis was swift, getting this in place by early April, followed by a Town Hall in collaboration with VFN to promote the option and answer any questions families had.

MCH/CSHN contracted with a Family Engagement Coordinator this past year, during which a division-wide assessment was conducted to understand the current state of family engagement and identify opportunities for new or further engagement. A committee worked together to assist in the development of a Family Engagement Toolkit, which will be used by programs across MCH to engage family partners in all aspects of work moving forward.

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. Since March 2020, CSHN and VFN have partnered closely to bring information to families about changes in access to care related to the pandemic and we expect this will continue throughout the pandemic response.

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.

It has been two and a half years since 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. 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).

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.

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; VT Federation for Families; 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.