November is National Family Caregiver Month, and the Commonwealth Fund released a timely report outlining ways Medicare could be improved to better support family caregiving. These short-term and long-term policies fall into four categories: covering services and supports in the home, providing financial support, enabling better access to information, and promoting research on family care.
Millions of people with Medicare need long-term services and supports (LTSS) to help with activities of daily living such as bathing and dressing, medical care, managing prescriptions, housekeeping and other tasks, transportation, and other supports to live safely and independently.
However, Medicare generally does not cover this care, forcing many beneficiaries to pay out of pocket, rely on family and unpaid caregivers, or both. The program also lacks coverage for most caregiver support, leaving many families struggling to afford and provide the care they need. People enrolled in Medicaid, including those who also have Medicare, usually have access to some financial and structural assistance, including payments for family caregivers. But this and other Medicaid LTSS coverage, especially for home and community services (HCBS), can be limited and difficult to navigate.
And the stakes are high. Without community care, some Medicare-only beneficiaries may be forced to spend on Medicaid to qualify for assistance. Even then, because Medicaid HCBS is grossly underfunded, they, as well as Medicare beneficiaries who can privately pay for institutional long-term care, may have to leave their homes and communities to live in a nursing home.
Family caregivers play a critical role in preventing these outcomes. The previous analysis explains that the vast majority (92%) of people with LTSS needs living outside institutions receive unpaid help from family and friends. This workforce caring for 38 million people provides services with a staggering estimated economic value of over $600 billion annually. This value is not created without cost. Almost 80% of family caregivers report spending a quarter of their own income (on average) on providing these services; Black and Latino families spend even more, with expenses amounting to 34% and 47% of their income, respectively. Many also face employment costs; six in ten have experienced at least one negative impact or change in their employment situation due to caregiving.
The Commonwealth’s release summary highlights the many changes that could be made to the Medicare program to enable families to better cope with home care needs. For example, the brief recommends eliminating home-related conditions in Medicare home health assistance and better ensuring that people with complex or chronic needs have access to home health. This is an important and necessary change. The definition of homebound currently causes confusion for both users and service providers because it does not mean that a person is literally unable to leave their home; elimination in home health would increase access to this vital care.
In the second section, the summary describes ways Medicare could help pay for caregiver services, mirroring some of the payments available through Medicaid. Other policy options include modernizing Medicare benefits, reimbursing families for out-of-pocket care costs, and collecting better data to analyze caregiver burden. Several policies appeared in recently proposed rules by the Biden-Harris administration, including a recommendation that Medicare Advantage plans do more to educate enrollees about additional benefits.
Throughout the report, the Commonwealth highlights areas where Medicare lags behind other programs and beneficiary needs, creating a system that locks out too many people when they need more help, not less. At Medicare Rights, we know how devastating this can be and that family caregivers are a vital component of many beneficiary care teams. We will continue to urge policymakers to provide support throughout the health care system while pushing for changes to the underlying policies that limit needed care.
Read the release summary.
Read more about gaps in Medicare coverage around long-term services and supports.
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