Report: CHSN

It is important to note that throughout this past grant year, the vast majority of CSHN staff were deployed full time to the COVID-19 emergency response. Most were deployed as contact tracers or to support the School/Child Care response team. While this significantly impacted our ability to move CSHN-specific work forward, the skills of the CSHN team were integral during the COVID-19 response. For example, CSHN social workers were swiftly identified as leaders in contact tracing; supporting COVID cases and their contacts access resources that would have otherwise created barriers to following guidance; and working with culturally diverse Vermonters impacted by COVID. All CSHN staff deployed to the Contact Tracing team quickly rose to leadership roles, either as Clinical Leads or COVID Care Coordinators. Clinical Leads were available 7 days a week, acting as a resource, mentor and subject matter expert in all things related to isolation and quarantine guidance. The COVID Care Coordinator position was created largely due to CSHN social workers identifying a need for an added layer of support for certain cases and contacts. They developed, implemented and filled this role throughout the pandemic, and continue to function as consultants for the contracted vendor who since took over this work. The COVID Care Coordination work dovetailed closely with the Health Equity response to ensure our most vulnerable populations were well-resourced and supported.

A small handful of CSHN staff were spared from deployment, primarily to focus on the key functions within CSHN would continue, which they did with very little interruption. Those functions include Newborn Bloodspot and Hearing screening, administration of medically necessary Medicaid services, and lastly an access point for providers needing consultation or families seeking care coordination.

Some key priorities were continued despite the pandemic, and in thanks to the tireless efforts of the CSHN staff and our strong partnerships.

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).

After more than 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 were 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 26% 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 of April 2021, over 56 hours of consultation had been provided to care teams and providers needing assistance. Activities related to trainings and collaborative problem-solving were mostly put on the backburner given the pandemic. However, being forced to function in a more remote environment pushed some collaborative relationships forward.

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 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 sharing 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 medical 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.

With so much of the healthcare field focused on emergency response efforts, our systems improvement work around CYSHN care coordination was paused. However, it was an opportunity to highlight how medical homes and providers with access to high functioning and well-established care coordination were able to pivot and support their patients and families during this pandemic, where less-resourced providers were perhaps less able to do so. We heard this directly from families who were engaged by our contracted Family Engagement Coordinator. All 700 families actively enrolled in CSHN were surveyed about their experience receiving care coordination generally, with various themes related to COVID highlighting strengths and opportunities. Of those 700 families surveyed, nearly a dozen volunteered to participate in focused workgroups to map some visions of an improved system of care coordination. This work is ongoing, and will be shared with partners at VCHIP, OneCare Vermont, Blueprint for Health and our state partners committed to this work.

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.

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.

Significant resources by way of a committed team from Vermont Medicaid have been dedicated to crafting a reformed payment model for High Tech nursing. Throughout 2020 and ongoing, this team has conducted extensive modeling and stakeholder engagement to focus in on a model that might provide funding for services up front to agencies. This funding would be intended to help them manage their budgets more predictably (instead of waiting for reimbursement months after services are delivered) and ultimately improve recruitment and retention of nursing staff.

CSHN leadership has been invited to participate with cross-agency partners to plan for the 10% increase in Home and Community Based Services (HCBS) funding. Although early in the planning stages, CSHN is closely aligned with partners to commit this one-time funding to projects and opportunities that will sustainably lift and strengthen our services across the population.

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 leadership has continued to work with Medicaid policy on the possibility of allowing the continuation of paid family caregivers beyond the emergency. This work will be ongoing throughout 2021 and likely beyond.

MCH/CSHN again contracted with a Family Engagement Coordinator, 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 continues to capture national attention and definition and has been identified as one of Vermont’s NPM. 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 provides 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 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). The long-standing VDH Child Development Clinic was shuttered when the COVID pandemic hit Vermont and there is no intention to reopen programming, with the small exception of a “tail” of families that were already enrolled prior to March 2020. 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.

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.