VT MCH continues to leverage substantial federal grants for systems and programs to complement the significant existing CSHN work accomplished by Title V funds for the past many years, along with the systems changes created by the CSHN SIG activities begun in 2008. Vermont’s CSHN programs have been able to move towards population-based and enabling services to support families, a model that more thoroughly supports children and families by supporting comprehensive, coordinated, clinical service delivery, while utilizing traditional payment models. VT is currently one of 16 recipient states of the State Implementation Grant for Enhancing the System of Services for Children and Youth with Special Health Care Needs through Systems Integration. VT is working on developing and implementing the first-ever State Plan aimed at integrating services for CYSCHN. Ongoing efforts to refine data collection and analysis help identify gaps in and barriers to the system, to achieve a comprehensive, coordinated, integrated system of state and community services and supports for CYSHCN and their families.
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 Leadership Education in Neurodevelopmental Disabilities (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.
Twelve VT pediatric medical homes have participated in the 2 cohorts of the PCCLC. Recruited pediatric and family medicine primary care practices formed practice-level working groups including a physician, other health care professionals, identified care coordinator, and parent partner, and each has identified up to 25 children for whom a comprehensive integrated plan of care is necessary. Through four in-person learning sessions (most recent held in March 2017), and facilitated monthly webinars, the collaborative curriculum emphasizes shared planning, data collection and evaluation, as well as continuous quality improvements, to share strategies for effective care coordination, partnering with families, and improving connections to community partners. On average, cohort practices expressed an increase in their consistent use of PCCLC strategies. All 12 of the practices now use a Shared Plan of Care. All participating practices are conducting care conferences with families and health care teams to improve the coordination and collaboration of care delivered to a child with special health care needs. As of January 2017, 102 out of 163 CYSHCNs (62.6%) receiving care coordination at cohort 2 practices has a shared plan of care. In addition, the VCHIP-designed Family Experience of Care Coordination self-report questionnaire continues to be administered as a baseline when the family enrolls in the care coordination pilot and again as a post-pilot assessment, evaluating outcomes including utilization of ER, satisfaction with care and improved communication, continuity of care and access to resources. Follow-up questionnaires are still being gathered and analyzed by VCHIP.
In the fall 2016, CSHN received consultative evaluation from two MPH graduate students from the Harvard School of Public Health, in collaboration with the CDC. The consultants provided a preliminary review of the overall CSHN program, and focused on the role of the CSHN medical social workers in care coordination, across systems of care including both medical homes and community-based services. Using a Logic Model approach, the consultants gathered qualitative reflections of a wide variety of stakeholders, providing CSHN with process and content guidance for a next-steps evaluation of the CSHN program and specifically the CSHN care coordination model.
Best practice for transitions for CYSHCN into adulthood health care systems is gaining national attention and definition; although not explicitly identified as one of Vermont’s NPM, transition has been a focus of our efforts this year. VCHIP facilitated a Transition Summit this reporting year, 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.
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.
The CSHN program continues to meet with VT Medicaid leadership to improve collaboration with Medicaid’s Chronic Care case management initiatives. Although targeted to adults with certain chronic conditions, some children with respiratory illnesses are also included. 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. Because of CSHN’s collaboration with Medicaid, reimbursement for in-home nursing services for Vermont’s most medically complex children was increased last year by 28%, improving recruitment and retention of nurses to provide services to the high needs population of children, and thereby reducing need for accessing out-of-state facilities and the emergency departments. The CSHN program now manages the consolidated implementation of previously separated Medicaid programs, high-tech nursing for children, Children’s Personal Care Services, and Palliative Care for children.
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.
CSHN’s Child Development Clinic continues to provide regionally-delivered, multidisciplinary developmental pediatrics/psychology/medical social work evaluations for young children with suspected developmental conditions in all regions of the state, accessible to families and their community teams. Efforts to reduce the time from referral to kept appointment include streamlining CDC appointment procedures, adding clinical staff to increase capacity, and increasing outreach to pediatric medical homes through CSHN care coordination. Improvements in the operations of CDC continue to be refined.
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.
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