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Family Caregivers of Individuals with Intellectual and Developmental Disabilities: Experiences with Medicaid Managed Care Long‐Term Services and Supports in the United States

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Journal of Policy and Practice in Intellectual Disabilities

Published online on


A majority of individuals with intellectual and developmental disabilities need the support of a family caregiver. In the USA, more states are transitioning to a managed care model to provide long‐term services and supports (LTSS) and family caregivers are vital partners in the successful management of LTSS. This study's purpose is to illustrate the lived experience of receiving LTSS in a managed care model from the family caregiver perspective. In‐depth semi‐structured interviews were completed with 16 caregivers in four states with Medicaid managed LTSS (MLTSS). The themes include the importance of the family caregiver as supported and active partners in the provision of MLTSS, the family caregiver experiences with care coordination and access to services in MLTSS, and the family caregivers’ overall impression of MLTSS. Results indicate caregiver advocacy is critical to coordinating needed MLTSS and family support services help caregiver's maintain their vital role in the MLTSS system. Access to services and care coordination in MTLSS varies depending on state of residence. Some caregivers experienced less flexibility in the provision of services and supports and limited access to services making it more complicated for them to feel supported in their caregiving role. Care coordination in MLTSS was largely seen as paperwork processing function. Family caregivers can provide a wealth of knowledge from lived experiences on best practices for MLTSS. Given the move to more home and community‐based services, the role of the family caregiver as an active partners in MLTSS will remain the reality for many individuals with IDD. Family caregivers are a key component in MLTSS and more needs to be done to encourage their involvement in the design and oversight of MLTSS. More research is needed to explore best practices for effective stakeholder engagement in the provision of MLTSS.