“Navigating Social Security Employment Supports: The Experiences of Young Adults With Intellectual Disabilities Who Want to Work”

Abstract

The number of youth and young adults with intellectual disabilities requiring social security assistance is growing rapidly, but utilization of available employment support programming (i.e., work incentives) is not. There is a paucity of research examining why young adult beneficiaries are not accessing available employment supports. This study seeks to answer the research questions: (1) “How do young adults with intellectual disabilities become aware of, and receive accurate information about employment support programs for which they are potentially eligible?”; (2) “What barriers have young adults with intellectual disabilities encountered to accessing appropriate employment support programs?”; and (3) “How does the complexity of employment support programs affect the willingness of young adults with intellectual disabilities to work?” We explore these questions with phenomenological research methods to understand the lived experience of young adults with intellectual disabilities and their families in the United States, while drawing parallels to similar systems in other countries. We found the most common way families became aware of employment support programming was informally through other parents. Young adults relied heavily on their parents to coordinate employment support program requirements, but parents were confused by program complexity and frustrated with available communication processes. Young adults were undeterred in their work trajectories but reported backtracking in other important areas of independent living skills like budgeting and paying rent.