By the Centers for Medicare & Medicaid Services (CMS)
Family caregivers play an essential role in providing care to and supporting adults with intellectual and developmental disabilities (IDD) to remain in their homes and communities. However, most family caregivers provide this care without financial compensation or adequate support, even though their contributions are essential to the health and stability of our care systems. Research consistently indicates that when family caregivers receive appropriate assistance to meet their needs, the well-being and quality of life of the caregiver and the person for whom they provide care improves.
Most adults with IDD qualify for Medicaid and Medicare, and many of their family caregivers are also eligible or will become eligible for these programs. These public programs can offer access to long-term services and supports, including home and community-based services (HCBS). These services can be obtained through state HCBS waiver programs, which allow states to provide services beyond standard Medicaid offerings to support both individuals with IDD and their family caregivers. HCBS waivers are critical for enabling individuals with IDD to live outside of institutions and thrive in their communities.
This report outlines state-level strategies to support family caregivers of adults with IDD. It encourages states to expand their Medicaid programs to include HCBS waivers. HCBS waivers often include services that support unpaid family caregivers, such as respite care, expanded home health services, person-centered services, educational trainings, emotional support, and peer-to-peer support.
When implemented correctly, HCBS waivers have the potential to reduce hospitalizations and nursing home services, decrease overall state spending on long-term services and supports due to lower rates of institutionalization, and decrease the workload on the already overstretched direct care workforce.
This report also urges states to simplify the process of navigating existing care services for family caregivers by fostering strategic planning and collaboration among Medicaid agencies, IDD agencies, community-based organizations, and family caregivers. Improved coordination can help caregivers more easily identify and access the services and supports available to them. Additionally, this report highlights different types of HCBS waivers, real-world examples of state implementation of HCBS waivers and other supports for family caregivers, and additional resources for stakeholders to meet the needs of family caregivers to adults with IDD.
Report published: June 2023