Background

The Centers for Medicare & Medicaid Services (CMS) provided an important opportunity for beneficiaries, and their advocates, to convey experiences and concerns about the devastating lack of access to Medicare-covered home health aides, especially for individuals living with chronic and longer-term disabilities.

In the recent 2024 Notice of Proposed Rule Making (NPRM) for Home Health Care, CMS issued a Request for Information (RFI) seeking responses to 8 questions about access to Medicare-covered home health aides.

Comment

My comment is in response to one of the eight questions posed by CMS in this RFI: “What are notable barriers that home health agencies experience relating to recruiting and retaining home health aids?”. When funds are spread thin, the people who suffer most aside from the consumers are the frontline workers. In no industry is this more true than in home and community based service provision. 70% of paid aids and caregivers make less than $30,000 per year. 88% of them are female, and over half are Hispanic or Black. These demographics shift significantly for unpaid caregivers, which are usually people who leave the workforce or significantly cut their hours in order to stay home and care for a family member. The vast majority of unpaid caregivers are white, likely because families of color are more likely to live in poverty and less likely to be able to give up the income of a household member. The Kaiser Family Foundation conducted a focus group with both paid caregivers and unpaid family caregivers of people receiving HCBS in the summer of 2021. Here are a few direct quotes from caregivers that highlight the day-to-day struggles on the job caused by low pay, long hours, lack of appropriate training, and lack of equipment: “Some Tuesday mornings when I think I’m going home at six, the owner would call and say, two of them had to go to the doctor, so I would never come home until Wednesday night.” – 51-year-old female paid caregiver in Florida “With my company there is no real career advancement… there is no training program to move you into let’s say a managerial role… [I]t’s not like. . . somebody ever sits me down for my annual review and says. . . okay, where do you see yourself in two or three years. . . I’ve never had a conversation like that. . . I don’t think those conversations are typical.” – 42-year-old male paid caregiver in New York “We’re over worked and underpaid. And it’s not really an easy job. . . This job is not for the weak. You have to love what you do.” – 51-year-old female paid caregiver in Florida “The physicals demands. . . include the transporting of the. . . patients. . . who were bedridden [to the bathroom]… we didn’t have the bed lift to really lift them up, we would have to do it ourselves and. . . it would be a lot.” – 21-year-old male paid caregiver in New York These conditions have created a dire staff shortage that, unlike in other industries, has not rebounded over the course of the pandemic. 25 states reported the permanent closure of at least one HCBS provider, and that was just of the 38 states that responded to this particular Kaiser survey. The Bureau of Labor Statistics projects a 37% increase in vacant home health aide positions by 2028. In order to fill those vacancies, serious changes in the way our country pays, values, and treats home healthcare workers is needed. These conditions directly impact the safety and wellbeing of disabled people receiving care.