Policy Options to Support Family Caregiving for Medicare Beneficiaries at Home

Abstract

• Issue: Current Medicare policy overlooks the significant challenges facing tens of millions of family members caring for Medicare beneficiaries at home. Without improved support from Medicare, the need for home-based services will continue to outpace the ability of family caregivers to provide care.
• Goals: Identify specific changes to Medicare policies to promote a more equitable system of home-based care that supports beneficiaries and their family caregivers.
• Methods: Interviews with 20 aging, disability, and health policy experts, as well as six focus groups and an online survey of 1,000 family caregivers.
• Key Findings: We identified a range of short- and longer-term policy options to better support family caregivers and improve care for Medicare beneficiaries at home. These policies seek to: 1) increase Medicare coverage of in-home services and supports for family caregivers; 2) provide financial support for family caregivers; 3) expand the availability and accessibility of resources and navigational support for families; and 4) conduct research on ways to advance equity, alleviate caregiver burden, and reduce disparities in access to home-based services.
• Conclusion: A wide range of Medicare policy changes could help families care for beneficiaries and create a more equitable system of home-based care.

Introduction

The Medicare program, which covers much of the medical and hospital costs for those age 65 and older and younger people with disabilities, does not cover many of the costs associated with care at home. Medicare policy overlooks the financial, emotional, and physical pressure on the millions of family members providing home care to beneficiaries who are sick, frail, or limited by disability.¹ They typically work without payment, recognition, or in-home paid care assistance.

The number of family caregivers needed will only increase as the population ages and people can remain at home as a result of advances in technology, such as remote monitoring services. Beneficiaries also have expressed a growing preference to be cared for at home rather than in institutions, amplified by the pandemic.

This policy brief highlights administrative and legislative actions that Medicare could take to better recognize and support family caregivers. We based our recommendations on interviews with 20 aging, disability, and health policy experts who examined ideas suggested in six focus groups and an online survey of 1,000 family caregivers of differing genders, ages, races, and ethnicities (see “How We Conducted This Study” for further details on our methods). Highlights from the caregiver survey are summarized in a companion data brief, including that as many as two-thirds of family caregivers feel overwhelmed, anxious, and depressed about their work, and they are often unsure of where to turn for help.

Key Policy Options

Cover In-Home Services and Supports for Family Caregivers

1. Eliminate the homebound requirement in the Medicare home health benefit and provide equitable access to existing in-home services. With limited exceptions, Medicare reimburses in-home health services only if beneficiaries are confined to the home. In the short term, the Centers for Medicare and Medicaid Services (CMS), the federal agency that administers the Medicare program, could promote more equitable access to the home health benefit. For example, CMS could ensure that its prospective payment system for home health does not restrict access to medically complex beneficiaries and underserved populations² and to others who are qualified, like those without a prior hospitalization.³ CMS also could provide more accessible information on benefits, rules, and appeal rights. Further, the agency could encourage testing in the ACO REACH model, a newly redesigned, equity-focused, value-based payment model that permits accountable care organizations (ACOs) to waive the Medicare homebound requirement for access to home health services, and could add similar flexibility to other models.⁴

An interim option for CMS is to offer greater flexibility in considering who is homebound.⁵ Over the longer term, Congress could eliminate the homebound requirement and add other improvements to the home health benefit.

2. Incentivize Medicare Advantage organizations to offer broader supplemental benefits to beneficiaries and their caregivers, like food and respite care, which allows caregivers a short-term break. Half of all Medicare beneficiaries are enrolled in Medicare Advantage plans. In the short term, CMS could use regulatory and payment mechanisms to encourage Medicare Advantage organizations to offer more comprehensive supplemental benefits, such as respite and adult day care, and nonprimarily health-related benefits like food and nonmedical transportation, to reduce caregiver burden and families’ out-of-pocket expenses for home-based care.⁶ CMS also could incentivize plans to offer additional benefits that address the nonmedical drivers of health, especially in areas with higher levels of underserved populations.

Over the longer term, Congress could expand eligibility for special supplemental benefits beyond the statutorily defined chronically ill population. This expansion would make more beneficiaries eligible for nonmedical benefits like meals and groceries, which may positively affect health outcomes.⁷ Expanded eligibility could include those with low-income subsidy eligibility who can currently receive nonmedical supplemental benefits in plans offered under the Medicare Advantage Value-Based Insurance Design Model.⁸

3. Increase opportunities for ACOs to provide benefits that support beneficiaries and their caregivers at home. Through the current ACO REACH Model, policymakers can learn from testing whether care management home visits prevent hospitalizations or whether waiving the Medicare homebound requirement improves access to home health services.

Additionally, the 2023 physician fee schedule offers incentives for new ACOs in the Medicare Shared Savings Program, one of CMS’s original value-based alternative payment models, to receive funds to address the social needs of people with Medicare that could help underserved beneficiaries and caregivers at home.⁹ Some Medicare ACOs already offer services that help caregivers manage beneficiaries’ care like case management, health and functional assessments, mobile technologies, and 24/7 clinical support. Over the longer term, the annual physician fee schedule could encourage more ACOs to provide other services that support beneficiaries and caregivers at home.

4. Use the annual Medicare physician fee schedule to increase beneficiary and caregiver services in traditional Medicare, in-home support services, and education and training. An example of a recent service, added by the 2023 fee schedule, is coverage of some dental services because they are inextricably linked to the clinical success of an otherwise covered medical service.¹⁰ Accordingly, CMS could propose other services that help beneficiaries and caregivers at home.

Use of currently available codes for providing services, like assessments of caregiver health risk and their ability to care for a beneficiary with dementia, could be increased through greater provider education and awareness. These caregiver-specific services may not be sufficiently publicized in existing provider resources such as the Medicare Learning Network or tip sheets.¹¹ New codes finalized for 2024, including the code to provide payment when practitioners train and involve caregivers to support patients with certain diseases or illnesses (e.g., dementia) in carrying out a treatment plan,¹² require provider outreach and education to ensure their use. In addition, agencies also could ensure caregivers receive the required training. For example, home health agency conditions of participation require caregiver preparedness training.¹³

5. Use the CMS Innovation Center, which tests new payment and delivery models, to assess the quality and cost of in-home services to accelerate Medicare’s future coverage of these benefits. For example, the CMS Innovation Center has recently developed the GUIDE Model, a dementia care model that tests patient- and family-centered care, including the needs of caregivers, over a period of years.¹⁴ The model includes respite care but could include other supports for family caregivers. Caregiver supports could be tested more broadly beyond dementia, in other models as well.

6. Expand Medicare coverage of additional benefits for beneficiaries and their caregivers. Traditional Medicare provides little to no coverage of stand-alone benefits like home health aides, personal care services, adult day care, mental health services for caregivers, and home safety modifications like grab bars. Health benefits for beneficiaries like vision, dental, and hearing that could help ease the burden on caregivers are also generally not covered, nor are nonmedical benefits like meals and transportation¹⁵ that help support home-based care. One short-term strategy is to ensure that community-based organizations are fully funded and their social benefits are accessible to all Medicare beneficiaries. Over the longer term, expanding such benefits in traditional Medicare would require congressional action.

Provide Financial Support for Family Caregivers

Interviews and survey responses revealed that caregivers experience significant financial difficulties as a result of their work, often jeopardizing their own financial security to support Medicare beneficiaries at home.¹⁶ The following policy recommendations are aimed at easing some of this financial pressure.

1. Test payment options to compensate family caregivers for services provided in the home. Providing compensation or a stipend has precedent in other federal programs, including Medicaid and Veterans Affairs (VA) health care.¹⁷ Currently, some Medicare Advantage plans offer family caregivers limited reimbursement for the hours of care provided at home. Over the short term, CMS could encourage or incentivize these plans to offer better caregiver reimbursement. The CMS Innovation Center also could test compensation or a stipend under a Medicare model. Over the longer term, including caregiver compensation in traditional Medicare would require congressional legislation.

2. Provide financial assistance for paid help and/or reimburse caregivers’ out-of-pocket expenses paid on behalf of the beneficiary, like durable medical equipment, transportation costs, and housing assistance. Over the short term, Medicare Advantage plans can provide broader special supplemental benefits including help with cost sharing for covered services as long as they fall under the limited Special Supplemental Benefits for the Chronically Ill statutory definition. As noted elsewhere, without a legislative change to broaden eligibility for these nonmedical benefits, they are not available to all Medicare Advantage enrollees. Over the long term, financial assistance or reimbursement to caregivers would require congressional legislation.

Make Informational Resources and Navigational Support Available and Accessible

Survey findings suggest that most family caregivers spend significant time looking for information on covered benefits and services under their family members’ health insurance plans. Similarly, some focus group participants said they struggled to find the information they needed. The following policies could make information more readily accessible to caregivers.

1. Create an office within CMS to identify, train, and prepare culturally sensitive and accessible health care advocates. These advocates could help beneficiaries and caregivers access Medicare and community services, avoid unnecessary out-of-pocket payments for covered services, and coordinate care between Medicare and community-based organizations. The final 2024 physician fee schedule responds in part to this need by including a principal illness navigation service that would help patients with cancer or debilitating illness and their caregivers identify and access providers. The final rule also includes a community health integration service that would refer families to community health workers who could provide services to address unmet social needs.¹⁸

2. Incorporate easy-to-understand and relevant information about caregiving benefits into Medicare publications and other resources for beneficiaries and providers. Over the short term, CMS could modify existing print and online publications to include caregiving benefits and training information using the VA’s Program of General Caregiver Support Services (which provides peer mentoring to caregivers of veterans) as a model.¹⁹ CMS also could update the Medicare Beneficiary Ombudsman webpage to recognize caregivers and provide more helpful links to resources for caregivers.²⁰

3. Ensure that Medicare Advantage plans provide enrollees with information on supplemental benefit offerings each year and that enrollees understand how to access and use benefits. In the short term, CMS could enforce requirements that plans inform beneficiaries of available Medicare Advantage supplemental benefits, including those that impact caregivers, during open enrollment and during the coverage period. CMS also could ensure that Medicare Advantage plans promptly communicate all benefits information — including social benefits such as meals, in-home supports, and caregiver respite and compensation — to beneficiaries and their caregivers. In addition, MA plans could ensure enrollee understanding of the benefit and its delivery by tracking utilization and performing outreach to enrollees where uptake is low.

4. Establish a centralized resource that links caregivers to other benefits programs. Other programs that can help support Medicare beneficiaries and their caregivers include Medicaid, the Supplemental Nutrition Assistance Program, the Medicare Savings Program, and the Low-Income Subsidy program. The Administration for Community Living’s MIPPA program provides grants to states that support information on programs that help to save on Medicare costs, particularly for low-income beneficiaries.²¹ This resource could serve as an example for establishing a centralized resource hub for caregivers.

5. Include caregivers in the development of beneficiaries’ care plans and identify the caregiver in the medical record. Over the short term, CMS could enforce existing rules to ensure caregivers are included in care transitions across all care settings. Similarly, the White House’s executive order on caregiving directs the HHS Secretary to ensure that hospitals actively include family caregivers in the discharge planning process.²² Additionally, the Caregiver Advise, Record, Enable (CARE) Act model legislation, enacted in 42 states, the District of Columbia, Puerto Rico, and the U.S. Virgin Islands, requires hospitals to record the name of the family caregiver on the medical record; inform the family caregiver when their loved one is to be discharged; and provide the family caregiver with education and instruction of the medical tasks to be performed for the patient at home.²³ Finally, the 2022 Recognize, Assist, Include, Support, and Engage (RAISE) Act Strategy points out that medical records increasingly include documentation of names, support, abilities, and preferences of caregivers, so caregivers will be included on the beneficiary’s care teams.²⁴

Promote Research to Advance Knowledge About Caregiver Burden and Address Disparities

1. Collect quality, patient satisfaction, and outcomes data to analyze caregivers’ burden. CMS could increase use of existing data or collect more caregiver data through the National Health and Aging Trends Study and the National Study of Caregiving and other databases to better recognize caregivers and their needs.²⁵ Consistent with the CMS Framework for Health Equity 2022–2032, CMS could collect and compare data on the availability and use of home-based services and differences in quality outcomes between populations, including underserved populations.²⁶ The CMS Innovation Center also could require its model participants to collect beneficiary and caregiver data to access to home-based services, differences in quality, and caregiver burden.

As CMS develops broad quality measures to support its goals, policymakers could determine if existing performance measures for Medicare home-based services are adequate.²⁷ Agencies also could incorporate caregiver questions into all Medicare patient satisfaction surveys, like the Consumer Assessment of Healthcare Providers and Systems.²⁸

2. Make access to telehealth services and other technologies more equitable. Telehealth supports beneficiaries’ care at home and can reduce the burden on caregivers. For example, telehealth may provide an alternative to transporting a beneficiary to the doctor’s office. As use of telehealth and “hospital at home” services continue to increase post-pandemic, data on their impacts across underserved populations will become available.²⁹ CMS could use these data to identify gaps in access by income, geography, and underrepresented populations.³⁰

Discussion

We found that policymakers have a range of short- and long-range options to support family caregivers providing care for Medicare beneficiaries at home. Many options do not require congressional action to better recognize caregivers and pay for services that support them. The Centers for Medicare and Medicaid Services, for example, could increase the availability and uptake of the Medicare home health benefit, assuring that the full range of services is provided. The agency could use the annual physician fee schedule, regulatory and payment mechanisms for Medicare Advantage and ACOs, and the Innovation Center’s authority to accelerate Medicare’s future coverage of benefits and services to support beneficiaries and their family caregivers. And CMS could provide resources to help Medicare beneficiaries and their caregivers navigate medical and support needs at home and access home-based services, including emerging technologies. In providing home-based services and caregiver supports, CMS also could build on the efforts and experiences of other programs, including Medicaid, Veterans Affairs, and the Administration for Community Living.

Beyond these short-term efforts, Congress could add a home-based benefit and take legislative action to help ensure equity in services for all Medicare beneficiaries. Such actions could help recognize the pivotal role of family caregivers and reduce the significant burdens they face.