Beggars can’t be choosers: the rhetoric and reality of person-centered disability services in the United States

Abstract

This article examines the gap between the theory and practice of person-centered services for adults with intellectual disabilities in the United States. It explores the rhetoric of personalized services—it gives a history of social care, rehearses the logic of person-centered planning and outlines the tension of conflicting disability policies. Then it defines the nature of choice and explains how limited alternatives undermine choice. Next the article describes the reality of restricted service options, summarizing the conclusions of a survey of American families and a meta-review of the effectiveness of person-centered planning. After recapping the contrast between rhetoric and reality, objections to the analysis are addressed. Finally, the article offers solutions for service system transformation. While the thesis pertains to the United States, its lessons are applicable to other nations.

Points of interest

• In recent years, supports for adults with intellectual disabilities have been shifting from a system based on what is available from service agencies to an approach that is tailored to individual needs and wants.

• Choice in services requires having multiple options from which to choose.

• There is a gap between theory and practice in the United States. Laws and regulations require services based on individual needs and wants, yet in many cases this is not reality.

• Because of many social factors, people with intellectual disabilities are fit into standard service packages rather than having supports matched to their individual needs and wants.

• Change in multiple social systems is necessary to create personal supports and choice in services.

Keywords:

• Adult disability services
• choice
• disability policy
• intellectual disability
• person-centered planning

Disclosure statement

No potential conflict of interest was reported by the authors.