Presidential candidate Kamala Harris' recent Medicare long-term care proposal has the potential to reshape how we approach aging and disability care in the US. The proposal states the potential impact clearly:
Virtually all seniors and many people with disabilities are covered by Medicare—over 67 million people, with roughly 4 million Americans enrolling every year—and 105 million Americans are currently acting as caregivers for loved ones.
Despite clear naming of family caregivers as beneficiaries of the plan, their role is left undefined. Particularly, Harris' plan does not yet specify whether family caregivers—who are often the backbone of care at home—would actually be brought in to the fold, and compensated for their work. Thankfully, the proposal details the openness to the partnership of private sector innovators:
This initiative will draw upon best practices across Medicare plans as well as the private sector to expand the home care workforce.
At Givers, we touch over 1 million family caregivers every year. We've tapped into something both broad and deep. People who care for loved ones want, and need, to get paid for the work that they do.
Because we understand this problem intimately, we asked ourselves what the thoughtful and diligent inclusion of family caregivers in Medicare at Home would look like.
For the uninitiated, family caregivers are the unseen workforce of the healthcare system, quietly providing more than an estimated $600 billion worth of unpaid care annually across the United States. These caregivers are often family members who support loved ones with activities of daily living like bathing, dressing, and eating.
While this care is priceless, it comes at a significant cost to caregivers themselves, both financially and personally. According to Givers' annual Current State of Caregiving Report, 41% of caregivers report being financially strained, up significantly from 18% in 2020. More than 1 in 3 caregivers have reduced income, taken on debt, and/or stopped saving while navigating a system that doesn't compensate them for their work. The burden is especially hefty for those who cannot afford professional care or are forced to deplete their assets, spending down into poverty just to qualify for Medicaid support.
Medicaid, which offers pathways for family caregivers to be compensated, has proven to be a lifeline for many. However, it only covers a fraction of those providing care. The process is complicated and available to caregivers only if their loved one qualifies for Medicaid, which often means they must have very limited financial resources. This leaves most caregivers without compensation for their work despite their important role in keeping loved ones out of cost-prohibitive institutions. It's a system that, while helpful for some, overlooks the families caught between making too much to qualify for Medicaid but not enough to pay out of pocket.
There is precedent for including family caregivers in federal programs. A 2018 proposal under the House Democrats' Medicare Long-Term Care Services and Supports Act sought to create a public benefit within Medicare that would, for the first time, pay family caregivers. Though the proposal did not pass, it laid meaningful groundwork.
With Harris' Medicare at Home proposal on the table, the question surfaces again: could family caregivers be brought into the fold, not as an afterthought, but as integral parts of the healthcare system?
This is not simply an issue of valuing care, or philosophical progression on the role of family members. Family caregivers must be included in any long-term care policy on an economic and workflow basis.
The U.S. is currently facing a severe shortage of paid caregivers. It's projected there will be an estimated 9.3 million total job openings in direct care from 2021 to 2031, far exceeding the available workforce. This shortage will only intensify as the population ages, putting more pressure on an already strained care infrastructure.
Family caregivers are an untapped resource. Medicaid programs have already demonstrated the potential to add approximately 4 million caregivers into the caregiving workforce. Extending this model to Medicare—serving an even broader base—could mobilize millions more. This isn't just a question of familial duty—it's about meeting the skyrocketing demand for care with a reliable, sustainable workforce.
Even if there were enough direct care workers, there are no shortage of challenges that are solved by family members. High turnover, limited understanding of diverse cultural backgrounds, and inconsistent quality can disrupt care and erode trust between direct care workers and care recipients.
A recent report from Activated Insights' found that the turnover of professional home care workers has increased by more than 12% over the past two years, bringing the industry-wide turnover rate to 79.2%.
With high turnover comes a lower quality of care. "Most patients crave a sense of continuity," says Health Economist Amanda Kreider, "How can you build trust if a different person shows up each day? Without trust, you won't have positive outcomes."
Family caregivers are deeply invested in the well-being of their loved ones and can provide more consistent, culturally sensitive care.
A Boston Consulting Group (BCG) study shows that formalizing family caregiving into the healthcare system could save billions in Medicaid and Medicare spending by reducing the need for expensive long-term institutional care. In 2022, the U.S. spent over $131 billion on institutional long term services and supports like residential care facilities and nursing home care. And hospital readmissions cost the U.S. healthcare system around $26 billion annually. Keeping loved ones at home, with proper familial support, can translate into 14% lower hospital readmission rates and fewer nursing home placements.
As mentioned above, including family caregivers also addresses the workforce shortage. By compensating caregivers, the government would incentivize more families to formalize their caregiving roles, easing the current strain on the direct care workforce.
On a broader scale, integrating family caregivers into Medicare could also reduce the economic strain on safety net programs like Medicaid, as fewer families would be forced to spend down assets, putting them in the medically needy category to qualify for care coverage.
In 2022, nearly 92 million people were enrolled in Medicaid, at a total cost of $824 billion (including administrative costs, accounting adjustments, and the U.S. Territories). If medically needy beneficiaries represent about 5 percent of the entire Medicaid population and account for 11 percent of total spending, this means somewhere around 4.6 million beneficiaries were enrolled as medically needy, at a total cost of $90.6 billion.
This shift to Medicare at Home would make caregiving more sustainable and equitable, providing the government with long-term savings while addressing one of the most pressing issues in eldercare.
For American families, including caregivers in Medicare means both economic empowerment and better health outcomes. Many families currently shoulder the dual burden of providing unpaid care while managing their own financial and career obligations. Compensation for caregiving would not only relieve some of this economic strain but also uplift millions of women and minorities who are the majority of unpaid caregivers, creating a more equitable system where those who provide care are no longer disproportionately penalized by lost income and retirement savings.
Personalized care from family members could improve the overall quality of life for seniors and individuals with disabilities. 84% of family caregivers report noticing health changes in their loved one before a healthcare professional. These caregivers, who know their loved one's health history intimately, are better positioned to provide personalized, attentive care. Studies have shown that home-based, family-provided care leads to fewer hospitalizations and better management of chronic conditions.
The broader system would benefit. With more caregivers in the workforce and fewer individuals needing institutional care, long-term care services would be less overburdened. This model offers the potential for a more resilient and equitable healthcare system that supports and compensates all caregivers while reducing costs for the government and improving outcomes for care recipients.
By building on successful models, such as Medicaid's existing Structured Family Caregiving programs, we can address the needs of care recipients and the structural challenges in long-term care.
Eligibility for the program would be available to people who meet the functional disability criteria, meaning they have been determined unable to perform two or more activities of daily living (i.e., bathing, toileting, eating) by an independent clinical reviewer. Many state Medicaid programs already use this standard, which could be evaluated annually in a pilot program to ensure consistency in functional assessments over time.
This family caregiver program should integrate seamlessly with the existing home care infrastructure to complement professional services without replacing them. Caregivers would (a) be eligible to provide support for daily living activities alongside or in place of paid home health aides, and (b) coordinate care with home health agencies when more specialized medical care is required (i.e., skilled nursing or therapy).
Family caregivers would undergo mandatory training to ensure quality care and consistency. Certified provider agencies will provide training for basic medical and personal care assistance such as hygiene assistance, medication management, and mobility support. Ongoing refresher courses or performance evaluations will be implemented to maintain program integrity.
The compensation model should be transparent and fair daily stipends.
Reimbursement would be contingent upon adherence to care plans established with case managers or healthcare providers.
Quality control and monitoring mechanisms need to be in place to maintain program integrity and prevent waitlists.
Implementing a family caregiver option within Medicare long-term care would require coordination between multiple stakeholders.
CMS would serve as the primary architect of the program, responsible for the policy framework, regulations, and oversight.
Medicare and Medicare Advantage plans would need to integrate caregiver services into their offerings.
Case management agencies would oversee caregiver-client relationships and ensure care plans are followed.
Provider agencies like Givers would play a crucial role in supporting family caregivers by providing:
Speculating on the cost of a family caregiver program under Medicare, we can look to Medicaid's long-term services and supports (LTSS) spending as a benchmark.
Structured Family Caregiving programs are more cost-effective, often costing less than half the price of institutional care per participant. Nationally, Medicaid spent around $400 billion on long-term supports and services in 2022, with more than half going to home and community based services (HCBS). The exact portion spent on Structured Family Caregiving varies by state and waiver participation rates.
For example:
If Medicare were to adopt a similar approach to directly compensate family caregivers, the cost of the program could be significant—but ultimately cost-effective.
Expanding Medicare to cover long-term care at home could cost around $40 billion annually, a figure projected by the Brookings Institution. However, this number does not account for the potential savings from negotiating lower prescription drug prices under Medicare, which could help offset some costs.
Medicare is currently on track to save $31 billion annually from the Medicare Drug Price Negotiation Program and other drug price provisions. If Congress implemented an even more aggressive negotiation program, it could generate over $450 billion in savings for Medicare in the next decade.
At the outset, Medicare would need to invest in pilot programs to understand the true cost implications, assess healthcare outcomes, and refine payment structures.
Now is the time for lawmakers and advocates to champion the importance of compensating family caregivers under this new Medicare long-term care proposal. This is not just a policy adjustment; it's a structural transformation that could profoundly impact the U.S. healthcare system.
Addressing the long-term care crisis requires a solution that is as bipartisan as it is practical. Compensating family caregivers offers a sustainable and equitable path forward. It would alleviate the financial strain on families, close gaps in the care workforce, and save billions by reducing the need for institutional care.
Since day one, our mission has been to ensure that family caregivers get the support and pay they deserve. As we look to the future, this initiative presents an opportunity to redefine caregiving in America and secure the future of care for millions. We are prepared to support policymakers in designing and implementing this much-needed change.
As a voice for the millions of caregivers across the US,
Founder & CEO, Givers
