63 million Americans are family caregivers for adults or children with a serious medical condition or disability. Caregivers come from every age group, income level and community, and they provide support for a range of needs — from personal care and complex medical tasks to meals, transportation and financial management.
Caregiving requires significant time, skill and energy, and it often comes at a personal cost. Among family caregivers of adults, eighty-one percent are unpaid, and about half report negative financial impacts due to caregiving such as taking on more debt, leaving bills unpaid or paying them late or borrowing money from family or friends. For millions of families, Medicaid support is the difference between the ability to care for a loved one at home or facing difficult choices about institutional placement.
As the nation’s largest payer for long-term services and supports (LTSS), Medicaid helps make caregiving more sustainable by:
- Supporting care at home through home- and community-based services (HCBS),
- Reducing burnout through caregiver training and respite care,
- Providing health coverage for 7.3 million caregivers ages 18-64, and
- Offering flexibility that, in most states, allows family caregivers to be compensated.
MMA partners, the National Alliance for Caregiving and AARP, lead Caregiving in the U.S., a robust data project that provides a comprehensive picture of family caregiving. Data from the report offers important context for understanding the role Medicaid plays in supporting caregivers and sustaining care in the community.
- For Carolina, Medicaid made it possible for her parents, who are both in their 90s and have serious health needs, to remain in their home after hospitalization. Medicaid helps Carolina sustain her role as a direct care worker for her parents while also caring for her disabled veteran husband.
- Medicaid support has been equally critical for Brittany, the primary caregiver for her son Camden, who has cerebral palsy and requires around-the-clock assistance with breathing, feeding, mobility and medical care. Medicaid provides Camden with skilled nursing support from a direct care worker at home and at school, and has provided a stipend for Brittany when the family lost a previous caregiver.
As states implement Medicaid changes included in the One Big Beautiful Bill Act (OBBBA), careful design and execution decisions will be essential to ensure family caregivers maintain access to Medicaid health care coverage and benefits.
Although OBBBA exempts family caregivers from new community engagement requirements, exemptions do not apply automatically. MMA partner AARP outlines several actions states can take to reduce the risk of coverage disruptions for caregivers, including:
- Clearly communicating new requirements and caregivers’ exempt status,
- Providing clear guidance on how to claim and document compliance or exemptions, and
- Using existing data sources to automatically identify exempt caregivers when possible.
- Such data sources may vary by state, but could include electronic health records and health system data, Medicaid HCBS applications and care plan data, Medicaid self-directed program data, state caregiver tax credit records and more.
As OBBBA is implemented, policymakers should continue to recognize and preserve family caregivers’ crucial roles by ensuring they are able to access and maintain benefits like health coverage and LTSS and supporting eligibility processes that maximize simplicity and flexibility.
To learn more about Medicaid’s vital role, visit https://modernmedicaid.org/.