Vermont Children with Special Health Care Needs

Overview

The Vermont Title V/Children and Youth with Special Health Care Needs (CYSHCN) team is determined to increase the number of CYSHCN in their state receiving care through a well-functioning system. The team implemented an innovative approach by providing staff, resources, and support to practices implementing the medical home model throughout the state. The team then collected feedback from staff and families within these practices to examine and address policy to improve the system. The Title V/CYSHCN team is now taking lessons learned from these community efforts to move toward wider health reform efforts in Vermont.

Recommendations

Recommendations for entities interested in implementing a similar project to improve the systems of care through the medical home lens:

• Be flexible with your goals.
  • The system providing care and support for CYSHCN is complex. Being flexible allows a more responsive pathway to engage with and streamline the efforts of several entities who may be implementing similar work. Additionally, remaining flexible allows a program to adjust and shift as information is learned along the way.
    • Example: Several entities within Vermont have worked separately on improving coordination of care for CYSHCN. As the Vermont team connected with these entities, they remained flexible to account for different mandates and funding requirements.
    • Example: Early efforts in this work included interviews with family partners. As themes and trends from these interviews emerged, the Vermont team adjusted to incorporate feedback from the family partners to have program goals that addressed things that were more important to families.
• Engage “boots on the ground” partners and stakeholders early in the process.
  • Partners for this work include those providing care coordination, families accessing care coordination, and CYSHCN self-advocating for needed care coordination services. Engaging with these partners highlights areas of shared understanding of barriers and what is working. Engage with partners during informed project planning to establish themes to provide direction for the work.
    • Example: Learnings from family interviews early on in this work (as mentioned above) continued to provide guidance on project planning. Because of this connection to family partners early in the process, the Vermont team did not overburden families by going back to them repeatedly.

Data/Outcomes

• The program’s core objectives include:
  • By 2024, increase by 20% the percentage of children and youth with special health care needs receiving coordinated care
  • By 2024, increase by 20% the percentage of primary care practices that use the comprehensive, universal plan of care to share information and coordinate care with specialists and the entire care team
  • By 2024, increase by 20% the percentage of primary care providers with proficiency to facilitate transitions from pediatric to adult care.
• The Vermont CYSCHN team is in the process of evaluating this work based on the objectives outlined above. There is no available data to share at this time.

Project Background

• Prior to implementation in 2020, the Vermont Title V/CYSHCN team has been building up to the evolution of its care coordination program from various projects and initiatives since 2013.
  • In 2020, the team began implementing a program in which regional Children with Special Health Needs (CSHN) social workers, employed by Title V/CYSHCN, were embedded, or affiliated within medical homes throughout the state.
  • The social workers provided care coordination, resource and referral, provider education, and transition planning for adolescents, all focused on the population of CYSHCN.
  • Full implementation was limited by staff engagement due to the state’s COVID-19 response efforts.
• Social workers within practices operating as medical homes remained connected to the Title V/CYSHCN team to share pain points and opportunities for improved efficiencies within the system of care.
  • The Title V/CYSHCN team was able to take these lessons learned to improve policy in the state to better support families of CYSHCN.
• These efforts have had a profound impact on the provision of services for CYSHCN. Examples of changes in policy, clarification of policy, and streamlined pathways for families include:
  • Coverage of supplies through early and periodic screening, diagnostic, and treatment (EPSDT) Medicaid benefits.
  • Ease of use and access for transportation covered by Medicaid. These efforts additionally included education for providers to support and share with families, particularly for non-emergency transportation.
  • Payment for families and caregivers providing personal care services to CYSHCN; a waiver of authority to pay families and caregivers for personal care services began during COVID-19.
    
    • In partnership with Vermont’s Medicaid program, this option was included in the state’s 1115 Global Commitment to Health waiver. Input from families was collected to inform this action. Additional policy development is underway.

Funding Mechanism

• The work of the Vermont Title V/CYSHCN team is funded and sustained through Title V and Medicaid federal funds.

Key Partnerships

• The Vermont Title V/CYSHCN and Medicaid offices have had a long-standing collaborative relationship.
  • This partnership has been a key component to enacting policies that best support CYSHCN and their families. The Title V/CYSHCN program has a staff person within their department who provides technical assistance for all Medicaid inquiries, reducing burden on their Medicaid partner.
  • By serving as a Medicaid resource for families in the state, the Title V/CYSHCN program provides a direct link between barriers for families and offers opportunities for improvement.
• Provision of pediatrician education is the main objective of the initiative.
  • Partnership with the American Academy of Pediatrics (AAP) chapter gives a direct linkage to pediatricians in the state for provision of education and for obtaining feedback on improving access to resources and referrals.
• The Vermont Title V/CYSHCN and the Vermont Child Health Improvement Project – Children’s Chronic Care Initiative/Care Coordination Collaborative.
  • This partnership focuses on improving the care coordination system and pediatric to adult healthcare transitions.

Next Steps

• The Vermont Title V/CYSHCN team has been moving from direct service to a population health model for several years.
• Through this transition, the team has sought to find a way to move the social worker/care coordination model further upstream to be more population-health focused.
• This new model, the Care Consultation and Health Systems model, invests staff time and expertise to reach a wider population by provision of support and technical assistance to care coordinators within pediatric practices, data collection, educational initiatives, and networking across the system of care.
  • Care consultants will track and stratify care coordination requests regionally (who is making the request, what is the request for) to develop and distribute resources and supports addressing the needs of the regions.
  • The care consultation model has not yet been fully implemented and there is no data or outcomes to report at time of publication.

Related American Academy of Pediatrics (AAP) Policy

• The work of this promising practice aligns with recommendations and evidence outlined in the AAP policy, “Patient- and Family-Centered Care Coordination: A Framework for Integrating Care for Children and Youth Across Multiple Systems.”