“Person-centered” care in home care: A view from the ground up

The Affordable Care Act of 2010 (ACA) supports consumer choice, independence, and service integration for persons with disabilities through the delivery of person-centered long-term services and supports (LTSS) in the home and community. Yet, little is known about the meaning and experience of person-centered care from the consumer's point of view and how such definitions change over time. The Helping Older-adults Maintain independencE (HOME) project gathered in-depth qualitative data on the care networks and strategies used by a typical group of older adult consumers of publicly-financed LTSS in California over a one-year period. We investigated how 33 older adults, dually-eligible for Medicare and Medi-Cal, managed a fragmented network of informal and formal care to continue to live independently at home. Interviews with older adults and their caregivers were transcribed and coded to identify key themes and patterns. We found three key dimensions central to consumers' desires to be actively involved in their LTSS. The first is the desire to remain at home as long as possible regardless of level of disability. The second is the meaning of independence and a “good life” that reflects a sense of competence and control. Finally, we describe the challenges they face managing the services and resources needed to remain at home. Policy implications include the need for a national focus on building a more responsive LTSS system that is person-centered and allows persons with disabilities to remain in the least restrictive environments that they prefer.