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Recognition of Family Caregivers in Managed Long-Term Services and Supports

This report, based on a study of managed long-term services and supports (MLTSS) programs, examined provisions in MLTSS contracts that are important for the support of family caregivers. The study comprised the review of 31 MLTSS programs for older adults and adults with physical disabilities in 23 states in 2019. Using key search terms, we identified a considerable amount of contract language that sheds light on elements of state contracts that help ensure family caregivers’ inclusion and support in MLTSS programs.

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Key findings include:

  • Nearly all state MLTSS programs include family caregivers in service planning and care coordination (upon the member’s consent) and provide some services and supports (such as respite care or caregiver education and training) targeted to members’ family caregivers.

  • Most state MLTSS programs include family caregivers in their quality assessment and performance improvement (QAPI) programs and on member advisory committees.

  • A minority of MLTSS programs assess (or reassess) the well-being and support needs of their members’ family caregivers, or allow for family caregivers to be paid as a provider in consumer-directed models of care
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States that have clearly defined requirements in their contracts to include and explicitly support family caregivers send a strong message to all MLTSS stakeholders to improve the culture of care and promote person- and family-centered care as a standard focus of practice.

State Summary Tables  

Each state summary table is a user-friendly, print-ready document that provides state-specific analysis. 

ArizonaNew Jersey
CaliforniaNew Mexico
DelawareNew York
IdahoRhode Island
IowaSouth Carolina

Author-Led Webinar

On May 14, 2020, a free author-led webinar shared further insights from this report and the research it came from. During the webinar, report authors from the AARP Public Policy Institute (PPI) and IBM Watson Health examined the issue from all angles—providing an overview of family caregiving, discussing why MLTSS matters to family caregivers, reviewing the report’s methodology, and highlighting key findings and recommendations. 

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Suggested citation:

Kasten, Jessica, Elizabeth Lewis, Sari Lelchook, Lynn Friss Feinberg, and Edem Hado. Recognition of Family Caregivers in Managed Long-Term Services and Supports. Washington, DC: AARP Public Policy Institute. April 2020.