"Too few, too far away, for what is paid": Consumer voices about the personal assistance worker crisis.

Abstract

Background: The growing gap between demand and supply of personal assistance service (PAS) workers presents a significant burden to those who use services. The intensity and duration of hardship is growing, and consumer voices need to be heard and incorporated into the national dialogue.

Objective: This paper explores how PAS worker shortages manifest themselves in the daily lives of people with disabilities using or needing PAS services in the United States.

Methods: We used thematic coding of qualitative data from the 2022 National Survey on Health and Disability. Respondents (n = 330) provided open-ended responses to the prompt "Briefly explain the types of problems or issues you have had finding PAS or support workers."

Results: Three themes emerged regarding consumer perspectives and experiences with worker shortages (1) low pay, few benefits, and undervalued work, (2) demanding working conditions and logistics, and (3) low quality workers. In combination, these themes informed a fourth theme (4) impacts for PAS consumers characterized by substandard care and additional stress and workload for those who direct their own care.

Conclusions: As a society, we have taken steps to increase opportunities for community living and created policies to uphold choice and independence for people with disabilities. In the absence of an adequate workforce to support these policies, however, we convey an empty promise. Without tangible steps to resolve these problems at the policy level, such as improved worker pay and protections, hope for resolution to these issues remains elusive.