The United States needs more home care than ever before. Nearly half of Americans over the age of 65 need at least some assistance with daily living and 75 percent of them—roughly 27 million people in 2020—received that care at home. As the population ages, the need for home care is only projected to continue expanding. In reaction, the state plays an increasingly crucial role in providing long-term home care. On the one hand, the state is doing far too little, continuously relying on unpaid family caregivers. On the other hand, when the state provides care, predominantly through the Medicaid system, it delivers care and compensation for care work through a mode of governance featuring task-list enumeration, documentation, individual beneficiary framing, and professional supervision. This rigid, functional approach to valuing care is often at odds with home care’s relational, fluid, and person-centered dimensions. This tension is paramount when Medicaid programs increasingly recruit family members to provide home care.
Admittedly, any public effort to support care will face the almost-universal governance challenge of mediating the tension between the bureaucratic system’s ideal of across-the-board universality and the specificity of care as a form of labor with personal, relational, and spontaneous dimensions. Some form of bureaucratization is inevitable and even desirable. In my forthcoming article “The Care Bureaucracy,” however, I argue that the current public care system chooses a highly disciplinary bureaucratic system in reaction to this challenge due to the particular political economy of care that features distrust and fragmentation. While the current care bureaucracy offers certain benefits, such as deterring fraud and enabling some pro-worker boundary-drawing, it imposes under-recognized yet significant costs on care recipients—vulnerable elders and people with disabilities, their families, and direct care workers, who are often expected to fill the gap between bureaucracy and care with their unpaid, invisible labor.
The bureaucratization of home care
When families and care workers turn to the public care system for the life-enabling service of home care, both groups encounter a highly disciplinary bureaucratic system that fragments a continuous care relationship into a list of physical tasks, meticulously quantifies the value of care work through procedures enforced by medical professionals, and requires exacting documentation to prove the need and occurrence of care.
Structured around the medical, functionality-based definition of “Activities of Daily Living” (ADLs) and “Instrumental activities of daily living” (IADLs), state Medicaid home care programs often employ nurses and other medical professionals to assign each applicant a dependency index on each ADL and IADL task through functionality tests, interviews, and in-home observations, and then use a task-to-time conversion table to calculate the duration of care that the applicant needs. This assessment becomes a seemingly objective basis for other health and social work professionals in Medicaid agencies, and increasingly managed care plans — for-profit health insurance firms contracted by Medicaid — to scrutinize the patient’s home care needs, suitability, and cost-effectiveness before authorizing the care plan.
While this functionalist approach of defining and measuring care needs satisfies the administrative need for standardization and quantification, it creates tensions with the recipients’ and providers’ experiences of the relational, spontaneous, and holistic dimensions of home care. First, the medical definition of home care strictly defines the Medicaid patient as the sole beneficiary and prohibits the program from intentionally benefiting other parties involved. In reality, many family caregivers turn to state-provided care to get some relief from care duties, yet the system perceives them at best as incidental beneficiaries and at worst fraudulent free-riders.
Second, the task-based, durational measurement of care disregards the fact that many tasks spontaneously flow from the rhythm of everyday life and cannot be easily consolidated. For example, an elder might not perform any ADL task for the 2 hours between dinner and bedtime but the 15 minutes of bed preparation cannot be provided in isolation. This functional measurement of care duration either leads to under-service, where the patient is put in bed early and stays there for as long as 15 hours. Alternatively, home care workers can provide the flexibility of task completion only by offering extra unpaid work and extra commuting. Nor do most Medicaid home care programs recognize the value of “passive” or emotional care work, such as monitoring the safety of a patient with mental illness or providing emotional companionship.
Third, when a patient contests or applies to change the service duration, the system demands documentation, often medical documentation, combined with medical re-assessment, to prove the change of their care situations, including both health conditions, such as increasing incontinency, and non-health conditions, such as unpaid caregivers’ schedule changes. This procedural demand puts medical professionals in charge of not only the recipient’s bodily privacy but also family privacy matters.
Fourth, direct care workers — who are usually most familiar with the recipient’s conditions and demands — are commonly excluded from the decision-making process and lack any institutionalized communication with the professionals (nurse assessors, independent physicians, social workers, and healthcare plan administrators) in making the care plan.
These features of the disciplinary care bureaucracy manifest in not only how the state authorizes care services, but also how it supervises the delivery. Federal legislation passed in 2016 mandates that all state Medicaid home care programs require direct care providers to install Electronic Visit Verification (EVV) systems on their mobile devices. Through the EVV system, the home care worker — including paid family caregivers — must verify their GPS location every few hours, log every care task, and sometimes upload pictures or audio clips of the care recipient in order to receive the payment for each visit. This mandatory digital surveillance tool not only raises privacy concerns, but also alters how care is provided on the ground. Some care workers refrain from assisting the patient outside their home, worried about a wrong GPS pin and the risk of wage loss. In such case, the procedural regulation of the care bureaucracy directly contradicts the right to community integration that home care programs are designed to enforce.
The political economy of the disciplinary care bureaucracy
Concerns about fraud are the most common justification for accumulating bureaucratic tools. Nevertheless, both fraud concerns and the current fraud prevention system arise in the particular political economy of public care in the US. I lay out two dynamics here: first, the welfare system’s distrust in both recipients and providers of home care leads it to understand accountability exclusively as fraud prevention; second, the fragmentation of the public care system causes state actors to prioritize procedural compliance rather than deterring substantive fraud and abuse.
First, the current public home care system is structurally intertwined with means-tested welfare programs that serve both of its recipient and provider constituents, and continuously operates in the shadow of poverty law’s culture of distrust. Public long-term home care is a healthcare service mostly reserved for Medicaid recipients, while direct care providers are predominantly low-income women of color and immigrant women with few professional credentials, over half of whom receive some public assistance themselves. The scenario in which a low-income woman of color is working in the private home of a low-income individual with disability without any direct supervision almost automatically spurs the question of fraud to the welfare system. Throughout the program’s history, the Department of Health and Human Services has repetitively declared home care programs “particularly vulnerable to fraud,” making the concerns about “fraud, abuse, and waste” the top — and almost exclusive — priority in program design and enforcement.
The lack of recognition of home care’s positive values also contributes to the system’s obsession with fraud prevention. The major legislative justification for funding long-term home care is that it provides a cheaper alternative to nursing homes, which Medicaid is required to cover. With the value of home care negatively defined, there is no consensus about the positive values of home care that can be systematically encoded into the incentive and accountability machine to counterbalance the goal of cost control. Thus, accountability has been equalized with fraud prevention in the administration of public home care.
Second, layers of fragmentation exist in the public care system between its beneficiary (care recipients) and the payer (federal and state governments). First, like most paid care arrangements, the person who pays for the service does not immediately receive the service and often lacks effective communication with the recipient, complicating the common consumer feedback mechanism. Second, like most welfare delivery programs, Medicaid home care is funded by federal and state governments and operated by state and county agencies or managed care plans, resulting in another divergence of fiscal interests where local actors might be incentivized to provide more services than federal government’s parameters allow. Third, work law, including labor law and training and licensure regulations, constructs direct care workers serving Medicaid recipients as “not full-fledged public workers” nor part of the medical profession, resulting in another perception of divergence between the delivery workforce and the medical/social work professionals who operate the care bureaucracy.
The ultra-fragmentation of public home care not only heightens the perceived fraud concerns but also drives the system to rely on auditing for fraud prevention. Its methodology — ex post document reviews — can only catch procedural defects, such as a missing time sheet, rather than substantive fraud, such as non-delivery of care, which circularly leads the system to conceptualize fraud through procedural incompliance. For example, the CMS’s estimated improper payment rate for personal care services is 17.4 percent. However, this number refers to the number of payments lacking full compliance with Medicaid’s procedural rules, the majority of which are not estimated to be substantive fraud or abuse. The auditing process’s focus on procedural incompliance often leads to demands for more procedural safeguards. In short, because of pervasive distrust and fragmentation, the public care system prioritizes fraud prevention over other values, and procedural incompliance over substantive fraud. Ultimately, it leads to the accumulation of bureaucratic tools, often at the expense of access to and quality of care.
As the state expands public responsibility for care, there will be more encounters between care and bureaucracy. Institutional changes, minor and systematic, can move the public care programs from its disciplinary, overburdensome mode to be more supportive of the relational, integral, and flexible dimensions of home care. These changes will allow the care bureaucracy to more holistically recognize and realize the value of care. Drawing from public care programs for veterans with service-related disabilities, I identify in my article several features of what a more supportive care bureaucracy could look like: recognizing the interconnectedness between care recipients and providers, viewing both as intentional beneficiaries, supporting more holistic care services that includes non-medical care, and offering a more stable payment structure for care providers, such as monthly payments with healthcare coverage and mental health support that do not demand minute-level calculation and supervision. Fundamentally, cultivating the system’s trust in care recipients and direct care workers and mitigating fragmentation can provide the alternative political economy that enables such a supportive care bureaucracy.