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Consumer Voices Matter: Meaningful Engagement of Consumers and Caregivers in Long-Term Care

Patient-centered care is responsive to the needs and values of the individuals receiving care, and is one aspect of a high-performing, high-quality health care system. The Centers for Medicare & Medicaid Services (CMS) recently issued a final rule that gives Medicaid managed care consumers and their family caregivers a seat at the table by requiring states to include consumer and family caregiver perspectives in the design, implementation and oversight of state-managed long-term services and supports (LTSS) programs.

States should view the new requirement as an opportunity to provide supports to consumers and their representatives so that they can make meaningful contributions that lead to important improvements in states’ LTSS programs. States can achieve this goal by:

  • Ensuring a broad range of perspectives by engaging a variety of individuals receiving or supporting those who receive LTSS. States should be willing to provide appropriate supports for people with special needs, like interpreter services or wheelchair access.


  • Empowering consumers and family caregivers by providing them with educational opportunities. Include content that addresses the following topics: how managed care works, how the state designs and implements its managed LTSS program, a description of person- and family-centered care planning and consumer-directed care, and other topics that support robust consumer and family caregiver participation in the development and oversight of managed LTSS programs. Learning materials should be available at appropriate grade levels and in all common languages.


  • Supporting consumers and family caregivers by identifying a point person within the state agency that patients and family caregivers can connect with if they have questions or concerns. To reduce burden on the point person, this individual could be made available during established times, much like an “office hours” arrangement.


  • Providing opportunities for consumers and family caregivers to discuss issues and concerns related to their participation on advisory groups among themselves through secure internet-based chat rooms or in person if possible. This strategy can help consumers and family caregivers bond with and empower one another.


  • Identifying ways to recognize the important contributions that consumers and family caregivers make to help the state and the managed care companies improve their ability to deliver high-quality, consumer-centered LTSS. For example, the state and managed care companies could sponsor an annual banquet to recognize and honor the important contributions that consumers and family caregivers make.


As the movement to place consumers and family caregivers at the center of care gains momentum, it is important to develop processes to support meaningful consumer engagement in health care, including LTSS. Going forward, CMS should take advantage of other opportunities to better support family caregivers, like requiring states to survey family caregivers about their experience of care if they are part of the person-centered service plan.


Photo Courtesy of iStock




Lynda Flowers is a senior strategic policy adviser with the AARP Public Policy Institute, specializing in Medicaid issues, health disparities and public health.




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Olivia Dean is a policy analyst with the AARP Public Policy Institute. Her work focuses on public health, mental health, health disparities and healthy behavior.





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