Peonies: Promoting Person-Centered Services for People with Disabilities

Abstract

Preamble: People who live at the margins of society--those living with physical, psychological or cognitive disability, low literacy, low income, domestic violence, or discrimination--inhabit a large but often disempowered part of US society. Several fields, including social work, nursing, and adult education serve people living at these societal margins. Each of these fields holds a person-centered (e.g., client-, patient-, learner-centered) philosophy, but in practice, professionals are far more likely to define the problem, program content, and evaluation outcome criteria and control allocation of resources. Several innovative person-centered programs have been developed, but unfortunately, there is little communication and opportunity for interdisciplinary collaboration and cross learning. The following Futures column focuses on a multi-stakeholder collaboration between a State government agency, university researchers in health policy and nursing, people with disabilities, and organizations that are responsible for coordinating and delivering person-centered care to people with disabilities. Learning is at the core of what these providers do in their delivery of care, and it is important that adult education is viewed as a partner in such endeavors. An estimated 54 million Americans, age fifteen or older have physical, mental, emotional, or sensory disabilities that make it difficult to perform routine activities (McNeil, 2001). Because many people with disabilities are under-educated and under-employed, they often live in poverty. In recent decades, people with disabilities have become increasingly powerful as self-advocates and in leading professionals, policy makers, and academics to understand the necessity of partnering with the people they serve. Thus, training of social workers and other professionals who coordinate the complex care for people with disabilities (hereafter called care planners) in the concepts and practice of person-centered services will become increasingly important. This article describes the institutional context of care and the existing paradigm that shapes how needs are assessed and services delivered for people with disabilities, and then describes an innovative program, PEONIES (PersonalExperience OutcomesiNtegrated Interview and Evaluation System) that is designed to support person-centered, outcome-driven service planning and quality. Current Service Delivery Medicaid is the joint Federal-State program that provides health services to people living in poverty. People with disabilities who are eligible for Medicaid may also receive a variety of long-term care services which help with daily activities such as personal care, hygiene, nutrition, and medication management. Most State Medicaid programs provide additional services to optimize the ability of some people with disabilities to live as independently as possible. These services are often coordinated and delivered through non-profit organizations under contract to the State. Frequently, a social worker or other professional develops, implements, and evaluates service plans for individuals. Eligibility for services and the type and amount of services provided usually are guided by an assessment to determine the person's level of disability and presumed level of need. Historically, efforts to ensure equitable distribution of resources have resulted in practices that offer the same types and amounts of services to individuals with similar levels of disability, without regard to the individual's preferences, desires, or quality of life. Federal and State measures of quality of care primarily capture medical outcomes, with little attention to quality of life. This focus on medical outcomes, the particular definition of equity, and the limitations care planners face, result in a system that fails to be person-centered. Some of these limitations include excessively large caseloads and lack of adequate resources, training, and support for individualized approaches to care management. …