Improving Medicare’s Home Health Benefit: Beneficiary Experiences and Priorities

Abstract

Issue: Medicare’s home health benefit provides skilled nursing and therapy services to eligible homebound beneficiaries, yet it is not well understood.

Goal: To collect firsthand perspectives from Medicare beneficiaries and their caregivers on their experiences with home health services.

Methods: We conducted 20 interviews in October 2025 via Zoom with beneficiaries and caregivers of beneficiaries who were referred to home health services.

Key Findings: Interviewees typically had limited awareness of the benefits prior to referral but viewed the services as extremely valuable for recovery and preventing future issues. Choice of agency was generally limited and determined by a hospital-based or primary care provider. Agency satisfaction correlated with the quality of care delivered. Mental health needs were often present but unaddressed. Caregivers often filled gaps in care delivery.

Conclusion: The Medicare home health benefit plays a critical role in supporting recovery, independence, and safety for beneficiaries posthospitalization and for those in the community. While most experiences were positive and home health was highly valued, gaps remain in beneficiary knowledge, informed choice, care coordination, and access to the full range of services. Improved patient and provider education, patient-centric navigational tools, and workforce investments could help expand access and improve quality.

Introduction

Medicare’s home health benefit provides skilled nursing, or care delivered by or under the supervision of licensed nurses, and therapy services like physical therapy to eligible homebound beneficiaries. However, the benefit’s availability, scope, and duration are not well understood, and services can be difficult to access.

Both traditional Medicare and Medicare Advantage (MA) beneficiaries are eligible for home health benefits. They may be referred for such services following a hospitalization or skilled nursing facility (SNF) admission, or they may be referred from the community to manage chronic conditions at home. In addition to covering skilled nursing care and physical therapy, the benefit also covers occupational therapy, speech-language pathology services, and home health aides for personal care services (see box). For traditional Medicare beneficiaries, there is no cost sharing for these services, while MA enrollees may have cost sharing.

Beneficiaries referred for home health services after hospitalization have the freedom to choose an agency from a list of Medicare-certified home health agencies in their area. Hospitals are required to present a list of agencies to patients discharged home and referred for home health services as part of their discharge planning requirements.1 The Centers for Medicare and Medicaid Services (CMS) provides online home health information2 and tools like Medicare Compare3 to help beneficiaries select a quality-rated home health agency in their ZIP code. However, whether beneficiaries use these resources has been unclear. Further, home health advocates have raised concerns about misunderstandings about the scope, duration, and eligibility for services. Lack of information may lead to lack of choice, lower utilization of benefits, or missed opportunities for care.

We conducted 20 interviews with beneficiaries who had received a Medicare home health referral or with their caregivers. These interviews revealed the following findings about their experiences with home health services.

Findings

Home health was viewed as highly valuable. Most interviewees reported positive experiences and described home health as pivotal to recovery. In fact, almost all provided the top rating for their home health services, with physical therapy and nursing care as the most valuable. Most preferred home-based care over institutional care and were generally pleased with the quality of the home health staff who met medical needs and provided education and support during stressful events, such as after emergency surgery or a quick discharge from the hospital.

Beyond clinical care, beneficiaries highlighted the emotional and psychological value of home health care. Several expressed emotional vulnerabilities, including fear of falling and rehospitalization, depression, anxiety when left alone, and trauma from prior hospitalizations. Receiving reassurances from clinically trained professionals monitoring their progress built their confidence and sped their recovery. Patients living alone or with limited caregiver support described home health services as the difference between safety and danger, or between staying home and entering institutional care.

Some MA enrollees said they paid out of pocket for their home health care, but most beneficiaries appreciated the lack of cost sharing and stated they could not otherwise afford out-of-pocket costs on a fixed income. However, some worried about potential surprise bills due to confusion about their coverage.

Beneficiaries had limited knowledge of the benefit. Prior to referral and even after starting services, most were not aware of the full range of services. Most reported that they didn’t have to seek out the home health services themselves but instead were told by hospital staff or their physician that they “needed” it. Few recalled receiving an explanation of the benefit or its scope and duration. Beneficiaries typically accepted the referral because they trusted their providers, were exhausted, or had no knowledge of alternatives. The referral was usually from their treating physician or surgeon, who generally coordinated with their primary care physician.

Beneficiaries were satisfied in accepting the services recommended by their referring physician but were unaware that the home health benefit covered other types of assistance like personal care services. Those who received personal care services said it relieved their caregivers from assisting with activities like bathing and toileting. Others had caregivers help with care not provided by the agency.

Interviewees generally said they received little support in navigating services or coordinating care and that there was a lack of communication and coordination between the home health agency and their physician. While some mentioned follow-up phone calls from their physician’s office during their home health care episode, others said that care was provided in “silos,” putting the burden on beneficiaries and caregivers to coordinate their home health care services.

Beneficiaries generally did not independently choose an agency or evaluate the agency’s quality beyond the provider’s direction. Few mentioned getting a list of home health agencies from the hospital, but those who did received no context about the list. Usually, hospital staff suggested a single agency, and beneficiaries assumed that the provider’s selection was based primarily on proximity to the beneficiary’s home.

Beneficiaries’ reliance on the provider’s agency selection was also due to having a difficult time physically or mentally after a stressful event like unplanned surgery for a broken femur. Beneficiaries rarely used Medicare Compare for home health agency selection, as it was largely unknown to them. One individual with knowledge of the site said there was comfort in knowing the government had agency information, because it showed approval by Medicare.

Provider endorsement — such as “we work with them all the time,” sometimes reflecting a relationship with hospital-affiliated agencies — was a major factor shaping agency selection and was viewed as a sign of quality. It is unclear whether the provider-directed selection complied with Medicare rules around notifications of financial ties to the health agency.

Satisfaction with their home health agency was linked to how beneficiaries viewed the quality of staff and care delivered. Most beneficiaries rated their quality of care as high and said the service duration was sufficient. However, one felt that the services only stabilized their condition and did not aid in recovery — and even felt that services were being rationed. Another said they experienced a long wait time for services to start. One beneficiary was surprised that the agency personnel were ill-prepared and lacked the type of equipment required for their rehabilitation. That caregiver ultimately switched to a rehab facility.

Overall, agency satisfaction appeared to correlate with the perceived quality of the staff’s care delivery. While most found their providers to be high quality, some experienced staff turnover and lacked continuity of care. Rotating aides, multiple physical therapists, or inconsistent nursing visits caused frustration, reduced trust, and required patients to repeatedly retell their story.

Some reported dissatisfaction with the agency and the care provided. Some of the complaints suggest potentially poor quality of care and a lack of providing patient-centric care. For example, a few experienced language barriers and a lack of sensitivity by home health workers to the patient’s schedule and wait times for services. Another had their agency ignore their stated preference for a female home health worker in the home. While these complaints were not universal among those interviewed, it is worth noting for future research.

Mental health needs were often unaddressed. Often, home health workers asked beneficiaries how they were doing. Some responded that they were not doing well mentally but did not receive treatment. Several reported feelings of depression and emotional vulnerability while recovering but didn’t receive care for mental health concerns. One beneficiary said that a nurse acknowledged her depressive symptoms but provided no follow-up, deeper assessment, or referral for mental health services.

Another beneficiary, whose initial assessment included mental health supports, said that those services ended when the home health benefit ended, and she had to seek out new mental health providers to address ongoing needs. One person who received mental health services said it was incredibly important to their well-being and recovery.

Policy Priorities

Based on what we heard from beneficiaries and caregivers during these interviews, we have identified four areas for policy improvements:

Strengthen beneficiary education and navigation. The Centers for Medicare and Medicaid Services (CMS) could create more user-friendly resources on the full array of benefits available to educate beneficiaries and caregivers before services are needed. The agency also could develop patient-centric tools that clearly explain what is covered under traditional Medicare and their Medicare Advantage plans (including the scope of personal care services), the expected costs and duration of services, and how to change care providers. To provide more navigational support, CMS could consider modernizing tools that reflect how consumers seek quality information today, such as through online patient reviews, testimonials, and social media.

Support and enforce choice of home health agency. Most interviewees said they did not receive a list of available home health agencies from their hospital or provider. CMS could focus on hospital and provider education on these requirements and ensure advance information is provided to beneficiaries so they can make an informed choice. CMS could also monitor and conduct audits to ensure compliance with beneficiary choice of agency and financial disclosure notification requirements.

Improve care delivery through better coordination and provider education. Surgeons and other referring physicians may lack a full understanding of patients’ broader health needs, highlighting the importance of coordination with the primary care physician. Better provider education could help address care delivery and communication “silos” and lack of coordination between the treating physician, care team, and home health agency.

Address quality and access gaps. To ensure high-quality care delivery, workforce investments like higher wages and better staff benefits could help reduce agency turnover and maintain continuity of care. Telehealth can continue to supplement but not replace certain in-person gaps in care. Quality of care delivery could be strengthened by matching staff to patients’ preferences and improving home scheduling practices and systems. Initial assessments could focus on potential gaps in care through identification of mental health conditions, the patient’s language preferences, and social needs, such as more personalized support for an individual living alone. Ongoing care could include timely referrals and follow-up when concerns arise. While family caregivers often fill gaps in home health services, a well-trained, reliable home health workforce is better equipped to train and support beneficiaries in the community.

How We Conducted This Study

We conducted 20 60-minute in-depth interviews via Zoom in English or Spanish between October 15 and October 29, 2025, with Medicare beneficiaries and caregivers of beneficiaries who had been referred for home health services from either the community or posthospitalization. Interviewees represented a mix of beneficiaries based on the following characteristics: traditional Medicare versus Medicare Advantage, region, gender, racial/ethnic background, language, and health conditions.

We asked interviewees to describe their knowledge and experience with the Medicare home health benefit, including the referral process, choice and quality of home health agency and staff, and satisfaction with the care received. Additionally, we asked them to tell us what they would share with policymakers to improve Medicare’s home health benefit.

Perry Undem managed the recruitment of respondents and interview moderation. The appendix below has selected beneficiary quotes that highlight these issues.