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

Abstract

The health and healthcare of vulnerable populations is an international concern. In 2011, a Midwesternstate within the U.S. mandatorily transitioned 38,000 Medicaid recipients from a fee-for-service systeminto 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 andunnecessary hospital admissions, the goals of the managed care program (MCP) included: (1) access to amore functional support system, which can support high and medium risk users in the development ofcare plans and coordination of care, and (2) choice among competent providers. The population transitionedwas a high-need, high-cost, low-income, and low-power group of individuals. The evaluation researchteam used focus groups as one of many strategies to understand the experience of users during the firsttwo years of this complex change effort. The article explores empowerment in terms of users and theirfamily 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 andproviders. While the change was not optional for users, a disempowering feature, there remainedopportunities for other empowering and disempowering processes and outcomes through the transitionand new managed care program. The results are from 74 participants: 65 users and 9 family caregivers in11 focus groups and six interviews across two waves of data collection. MCP users felt disempowered by aninitial lack of providers, difficulty with transportation to appointments, and challenges obtaining adequatemedication. They felt empowered by having a choice of providers, good quality of transportation servicesand clear communication from providers and managed care organizations. Recommendations forincreasing prospects for the empowerment of healthcare users with disabilities within a managed careenvironment are presented.