Taking Charge: Lessons from Letting Older Adults Self-Direct Their Care

As the number of care options available for older adults has grown, many older adults and policymakers are championing the concept of self-direction—the idea that even older consumers with severe disabilities could be in charge of their own care. An evaluation of one program based on the principles of self-direction (the Cash and Counseling Demonstration) has shown that self-directed older adults were not only more satisfied with services, but also safer and healthier than those using agency-based services. Recently, researchers evaluating this program wrote about five lessons that they have learned.

The first lesson: Quality is achieved as a result of choice, not in spite of it. They find that consumers will choose quality when they have the option. The second lesson: consumers can take on the primary responsibility to make decisions that ensure that they receive quality services. Should the consumer need or want assistance, representatives such as unpaid family caregivers can help with decision making. In order for these two lessons to be achievable, it is critical that consumers have the support they need. The third main lesson is that programs can be designed to maximize consumers’ ability to receive high quality services. Consumers can be provided training materials to assist their decision making; such supports are now mandated for self-direction programs by the Centers for Medicaid and Medicare.

The fourth lesson is that monitoring and accountability are necessary; consumers don’t want their autonomy to come at the expense of their health and safety. Lastly, the authors note that since consumers themselves should have an important role in quality management, programs need to reinforce this role from the moment a consumer enters the program, rather than waiting until the point that services begin. The authors suggest that the prevalent inspection system, while necessary, should be “in a supporting role rather than the dominant act.”

The authors conclude “it is impossible to have a high-quality system that does not have a robust mechanism for hearing the voices of consumers and involving them in the design, implementation, and evaluation of the program.” With proper supports, the authors suggest that such an approach can succeed across the spectrum of long-term services.

Source:

Applebaum R and Mahoney K. Expanding self direction and its impact on quality. Public Policy Aging Report (2016); 26(4): 138–142.

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