Empowered and disempowered voices of low-income people with disabilities on the initiation of government-funded, managed health care

Abstract

The health and healthcare of vulnerable populations is an international concern. In 2011, a Midwestern state within the U.S. mandatorily transitioned 38,000 Medicaid recipients from a fee-for-service system into a managed care program in which managed care companies were contracted to provide recipients’ healthcare for a capitated rate. In addition to cost savings through reductions in preventable and unnecessary hospital admissions, the goals of the managed care program (MCP) included: (1) access to a more functional support system, which can support high and medium risk users in the development of care plans and coordination of care, and (2) choice among competent providers. The population transitioned was a high-need, high-cost, low-income, and low-power group of individuals. The evaluation research team used focus groups as one of many strategies to understand the experience of users during the first two years of this complex change effort. The article explores empowerment in terms of users and their family caregivers’ ability to make meaningful choices and access resources with regard to their healthcare. Specifically, factors empowering and disempowering users were identified within three thematic areas: (1) enrollment experiences, (2) access to care and (3) communication with managed care organizations and providers. While the change was not optional for users, a disempowering feature, there remained opportunities for other empowering and disempowering processes and outcomes through the transition and new managed care program. The results are from 74 participants: 65 users and 9 family caregivers in 11 focus groups and six interviews across two waves of data collection. MCP users felt disempowered by an initial lack of providers, difficulty with transportation to appointments, and challenges obtaining adequate medication. They felt empowered by having a choice of providers, good quality of transportation services and clear communication from providers and managed care organizations. Recommendations for increasing prospects for the empowerment of healthcare users with disabilities within a managed care environment are presented.