Changing Pediatric Hospice and Palliative Care Through Medicaid Partnerships.

Since its inception in 2010, the Concurrent Care for Children Provision of the Affordable Care Act has enabled seriously ill pediatric patients and their families to access comprehensive, supportive hospice services while simultaneously receiving ongoing treatment-directed therapies. Although this groundbreaking federal legislation has resulted in improvements in care for vulnerable pediatric patients, the implementation of the law has varied from state to state through Medicaid programming. The pediatric professional community is called to consider how Medicaid services can more effectively be delivered by leveraging legislative mandates and collaborative relationships between clinicians, Medicaid administrators, and policy makers. In this article, we examine ways concurrent care has been executed in 3 different states and how key stakeholders in care for children with serious illness advocated to ensure effective implementation of the legislation. The lessons learned in working with state Medicaid programs are applicable to any advocacy issue impacting children and families .

A Methodologic Approach to Conducting a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources.

CONTEXT: Prior studies have indicated that pediatric palliative care (PPC) resources vary across states and within regions in a state. Evaluating the current status of PPC and pediatric hospice care through a community needs assessment (CNA) can help address the gaps that exist to improve and increase access to PPC for children in need. OBJECTIVES: Using the state of Georgia as an example, the process, methods, lessons learned, and limitations in conducting a statewide PPC CNA are described. METHODS: A mixed-method descriptive design with multiple stages incorporating different methodological approaches was used. These included literature review, community profile, survey and interview questionnaire development, windshield survey, identifying and interviewing key informants, and quantitative survey of the state's hospice organizations. Key themes (providing PPC, PPC environment, collaboration, and future of PPC) and subthemes emerged, which were then triangulated across all existing data collection techniques to provide recommendations of varying feasibility and importance. RESULTS: Described in a subsequent article (Johnson K.A. et al.). CONCLUSION: This approach can be used by other state organizations, coalitions, governments, or national organizations looking to perform a CNA of palliative care, hospice resources, or could be applied to other geographical settings or types of care.