It has been nearly a decade since changes in Medicaid regulations enabled families and terminally-ill children to opt for concurrent care. The Patient Protection and Affordable Care Act of 2010 (section 2302) allows children and their families to access life-prolonging therapies, while enrolled in hospice care. Since 2010, almost every state has developed a unique plan for concurrent care implementation. While the approaches each state has chosen to take differ, most implementation began with a Medicaid State Plan Amendment (SPA) followed by changes to the Medicaid legislative guidelines. Subsequently, letters to Medicaid hospice providers might be sent explaining the implications of the change and further guidance for the practical application.

Our team created a template for comparing key points of how each state implemented concurrent care in their state

Our PedEOL Care Research Team at the University of Tennessee, Knoxville – College of Nursing sought to understand whether each individual state had provided guidance to hospices or treatment facilities in the following categories: definitions of life-prolonging or disease-directed therapies/treatments/services, payment information, staffing information, coordination of care, admission or enrollment into hospice care, hospice eligibility, age requirements, clinical guidance, and any other information for implementation. Our team created a template for comparing key points of how each state implemented concurrent care in their state through publicly available documents. This standard approach to the collection data allowed us to better understand what progress had been made since 2010. The purpose of this project was to synthesize state concurrent care documents. Our findings have important implications for clinicians and policymakers as they codify or refine their concurrent care implementation.

Data for this project was collected over the course of four months, from May 2019 to August 2019. Information from each state was gathered in alphabetical order beginning with Alabama, Alaska, Arizona, Arkansas, and so forth. Considering the collection time frame, individual updates to state plans may or may not be included in the information presented here depending on when the update was posted and when that state’s information was accessed. Although this was publicly available data and did not require IRB approval, we secured our data in the University of Tennessee, Knoxville Google Drive, so that they could be easily accessed and reviewed by all members of the research team. State-specific Medicaid Hospice Provider Manuals were the main source of information for this project, especially with regards to the categories of definitions of life-prolonging or disease directed therapies/treatments/services payment information, staffing information, and admission or enrollment into hospice care. This blog series summarizes each category one-by-one and highlights key points from some states.