Consumers’ and workers’ perspectives about consumer-directed services in the United States

Jamie G. Swaine, B.A.; Susan L. Parish, Ph.D., M.S.W; Leah Igdalsky, B.A.; Robyn M. Powell, J.D.
Lurie Institute for Disability Policy, The Heller School for Social Policy and Management, Brandeis University, Waltham, MA, USA
Disability and Health Journal, July 2016 Volume 9, Issue 3, Pages 464–471


Consumer direction is a service delivery model that shifts decision-making from agencies to the individuals they serve. Using government funding, consumers hire, supervise, and schedule their own staff and maintain control over the delivery of their services.


This study sought to understand the process of consumer direction as well as the experiences and perspectives of both the consumers and employees. The study also sought to better understand if and how consumer direction allows the consumer to direct his or her life, the impact consumer direction may have on the individual’s health and health care, and how employment in consumer directed programs impacts the workers providing direct care services.


This qualitative study included interviews with consumers (N = 20) and workers (N = 15) in Virginia, a southern state in the US. Semi-structured phone interviews were conducted by one member of the research team and transcribed and coded for themes by the research team using grounded theory methodology.


Consumers reported greater control over their services and increased access to health care, compared to what they previously received with traditional services. Conversely, consumers reported challenges in managing their staff and fulfilling the role of an employer. Employees reported a lack of training prior to starting their jobs, as well as an inability to live off on low hourly wages. Still, the majority of employees reported job satisfaction and fulfillment.


Policymakers should expand and strengthen the consumer directed program.