Introduction
The United States needs more long-term, home-based care for elders and individuals with disabilities (hereinafter “home care”) than ever before because of its aging population and the trend moving away from institutional care (Zhang Reference Zhang2024). Family members—especially female ones—provide the predominant majority of home care in the US, but most intra-family care is unpaid, invisible, and not legally recognized as work (Hoffman Reference Hoffman2016). Legal scholars find that the predominant ideology of unpaid family caregiving—a presumption that care between family members is altruistic and not economic—persists in keeping care “private” in at least two ways: judges constantly invalidate contractual transactions that involve intra-family, intimate labor (Hartog Reference Hartog2012; Hofri-Winogradow and Kaplan Reference Hofri-Winogradow and Kaplan2018; Kohn Reference Kohn2019; Antognini Reference Antognini2021) while the welfare state relies on supposedly “cost-free” family caregiving and refrains from expanding public support for care (Levitsky Reference Levitsky2014; Eichner Reference Eichner2020; Cahn, Huntington, and Scott, Reference Cahn, Huntington and Scott2023).
Since the Supreme Court’s Olmstead v. L.C. decision in 1999, which validates the right to community integration for individuals with disabilities,Footnote 1 a growing number of states have expanded Medicaid home and community-based services (HCBS) programs to publicly fund home care for eligible patients, some of which have recently expanded to compensating family caregivers (many excluding spousesFootnote 2 ) as employees, redrawing the boundary between the public state and the private family. The expansion of public responsibility into some family caregiving has primarily occurred through the mechanism of medicalization, which seeks individualized medical solutions for a potential social problem (Crossley Reference Crossley1999, 649–51) and often integrates medical professionals, knowledge, and documentation into the definition and the administration of welfare rights (Stone Reference Stone1984; Dorfman Reference Dorfman2017; Macfarlane Reference Macfarlane2021). In the context of home-based disability care, these Medicaid programs often authorize welfare services within the boundary of a “care plan”—a document that a medical professional produces in consultation with the patient and the state representative through a clinical procedure.Footnote 3 Furthermore, the legal system relies on the same “care plan” to define the boundary between legal work and non-work. The Department of Labor (DOL) stipulates that when the paid caregiver is a family member, the portion of labor recognized by Medicaid’s “care plan” constitutes a legal employment relationship that the Fair Labor Standards Act (FLSA) protects. By contrast, the rest of care falls into familial, non-legal “natural support.”Footnote 4 In other words, when these Medicaid programs employ family members to provide home care, two layers of private/public boundaries—between family and state fiscal responsibilities and between legal work and non-work—collapse on the same clinical document of the “care plan.”
Despite the sizable expansion of these Medicaid programs, little literature examines the reconfiguration of the public/private boundary of care or analyzes the outcome in a new regime that publicizes some family caregiving through medicalization. To fill this gap, I ask two interrelated research questions: 1) How does Medicaid’s expansion redraw the boundary between private, familial, unpaid “labor of love” and public, state-benefit, compensated work in healthcare services? 2) How does the state’s reliance on medical professionals and clinical protocols influence the way the state sees the value of care?
Inspired by James Scott’s classic notion of “seeing like a state” (Scott Reference Scott1998), I propose to understand the medicalization of home care as a state legibility project. In this process of administering public care through a medical model, the medical professionals become the state’s eyes, and clinical protocols become the state’s scope; they provide the metrics to measure and gatekeep the state-sanctioned health value of home care through supposedly “scientific” and “objective” metrics that quantify the complicated lived experience of care to be suitable for standardized management (Albrecht Reference Albrecht1992; Scott Reference Scott1998). The promise of “scientific” legibility introduces a mechanism to make some care visible, which establishes legitimacy and deservingness for state-provided disability care, especially in a political climate of persistent suspicion of fraud concerning care, disability, and welfare programs (Dorfman Reference Dorfman2020; Zhang Reference Zhang2024). Thus, the reconfigured public/private boundary can only be understood through the gains and losses in the visibility of care.
Specifically, this article studies the medicalization of intra-family home care as a state legibility project by examining the fair hearing records arising out of New York State’s Consumer Directed Personal Assistance Program (CDPAP)—a sizeable and heavily medicalized HCBS program. In these hearings, care recipients, their caregivers, and various agents of the state Medicaid system dispute service authorization decisions based on clinically produced “care plans,” contesting the legal scope of public responsibility and paid work in the context of home care.
Examining this novel dataset of fair hearing records, I find that medicalization has enhanced the state’s capacity to recognize the health and economic value of family caregiving labor, which has long been economically invisible prior to the Medicaid expansion. The introduction of medical metrics enables a limited circumvention of the ideology of unpaid family caregiving, and thus expands public recognition and responsibility for care. Meanwhile, the state’s incorporation of the medical profession’s function-based, rehabilitation-oriented understanding of disability and disability care restricts itself to seeing the value of care work via the clinical lens of a functional task list. This medicalized vision of care simultaneously renders invisible other health and non-health values of home care, as voiced by care recipients and caregivers, such as caregiver presence and harm reduction, which are often more deeply embedded in the care recipient’s relational environment. The welfare state continues to rely on the private family to fill this gap between the medical measurement and the experiences of disability care needs. Thus, this article supports a more contextual approach to rendering the relational dimension of care legible to the state.
Literature review
The ideology of unpaid family caregiving and economically invisible care
The ideology of unpaid family caregiving has played a foundational role in how the state structures the care economy, manifesting in two dynamics. First, judicial decision-makers persistently undervalue the economic worth of caregiving labor between family members and intimate partners when they adjudicate the line between gratuitous and compensable care labor (Hasday Reference Hasday2005; Hartog Reference Hartog2012; Hofri-Winogradow and Kaplan Reference Hofri-Winogradow and Kaplan2018; Kohn Reference Kohn2019; Antognini Reference Antognini2021). In his book examining intergenerational care transactions in the late nineteenth century, Hendrik Hartog (Reference Hartog2012) finds that the younger caregiver relatives often (but not always) failed to prevail in their legal claim to inheritance based on agreements with the deceased to exchange the provision of old age care for a share of the inheritance. The court especially struggled to recognize the exchange value when the younger caregiver was female and did not have the alternative of other wage jobs. Albertina Antognini (Reference Antognini2021) finds that contemporary courts also routinely invalidate agreements between nonmarital couples that exchange property for homemaking in separation litigations, finding that an intimate or quasi-familial relationship creates the presumption of an altruistic caregiving duty inherent to the relationship. Even though a parent and adult child or unmarried couples do not owe a legal duty to each other in family law, the courts continue to exceptionalize intra-family caregiving from the general presumption that service labor needs compensation. Even when performing the same labor of personal care, the law treats family and non-family caregivers dichotomously: judges generally do not grant explicit compensation for family caregivers but are more likely to uphold favorable testamentary transfers while granting explicit market compensation for non-family caregivers and treating them as employees (Hofri-Winogradow and Kaplan Reference Hofri-Winogradow and Kaplan2018). The same ideology of unpaid family caregiving carries into Medicaid HCBS programs despite their premise of compensating all care providers. Nina Kohn (Reference Kohn2019) finds that in Medicaid eligibility adjudications, judges and administrative law judges (ALJs) typically attach little or no monetary value to long-term care provided by family members outside the HCBS system, presuming it has its roots in “love and affection,” and routinely treat private caregiving transactions as fraudulent property transfers to cheat the welfare programs through “Medicaid planning.”
Second, regarding social welfare rights, the ideology of unpaid family caregiving also reinforces and justifies political regimes in which the state provides only limited public support for care, leaving it predominantly to private, familial responsibility (Cooper Reference Cooper2017; Eichner Reference Eichner2020; Cahn, Huntington, and Scott Reference Cahn, Huntington and Scott2023). The state continues to presume that family members, especially female family members, are available and willing to function as the care safety net—providing costless caregiving when needed (Hoffman Reference Hoffman2016). This ideological presumption reduces policymakers’ perceived need to provide public services for long-term care, despite the reality that long-term caregiving incurs negative economic and health costs for family caregivers and destabilizes the workforce and the economy at large (Coe and Van Houtven Reference Coe and Harold Van Houtven2009; Van Houtven et al. Reference Houtven, Harold, Coe and Skira2013; Hoffman Reference Hoffman2016). This ideological association between care and the private realm of the family further reinforces the idea of state non-intervention in the area (Harbach Reference Harbach2015; Cooper Reference Cooper2017; Eichner Reference Eichner2020). The ideology of unpaid family caregiving also has a hegemonic dimension. Sandra Levitsky (Reference Levitsky2014) finds that most family caregivers share, self-enforce, and identify with this moral norm of familial support to the extent that it, along with the lack of collective identities among family caregivers, curbs the social movement to secure more robust public support for long-term care.
The state’s refusal to recognize the economic value of family caregiving and care’s highly invisible status in the current legal system mutually reinforce each other. The invisibility of care comes from a regulatory blind spot in the home: the sphere of family privacy shields home-based care work—including work that performed by domestic workers hired through market channels—from the full spectacle of the regulatory state (Smith Reference Smith2007; Zhang Reference Zhang2025). When care labor happens between family members inside private homes, the state can hardly count, regulate, or verify the occurrence of such care labor. More importantly, this invisibility comes from the state’s general incapacity to see the economic value of “work” outside a market relationship (Zatz Reference Zatz2011). Without the device of a “market price,” the legal system cannot find a mechanism to certify the objective value of highly personal care labor that is independent of its subjective valuation by the care recipient—whose physical and emotional dependence on their caregiver and the familial ties between them can and often do influence their judgment (Kohn Reference Kohn2019; Antognini Reference Antognini2021). The invisibility of care’s economic value gives rise to persistent concerns about fraud, including scenarios such as when the caregiver defrauds the care recipient or when the two collude to defraud the welfare state (Kohn Reference Kohn2019; Zhang Reference Zhang2024). In other words, the state lacks the means to make care legible, leaving intra-family care largely to a legal void.
Against this perpetual invisibility of the economic value of intra-familial care, medicalizing it has created new possibilities for the state to value care through a health lens while destabilizing the public/private boundary described above. On the one hand, the healthcare framework has reinforced the home as the spatial marker of private, familial responsibility. Federal Medicaid regulations mandated the state’s provision of institutional care to eligible patients while leaving home care to optional and often haphazard state programs and unpaid care (Hoffman Reference Hoffman2020). In this sense, the medicalization of long-term care has implicitly relied on unpaid family caregivers (Kaplan Reference Kaplan2018). On the other hand, the medicalization of long-term care has also enabled some expansion of the state’s fiscal and regulatory responsibility into home care, enhancing the state’s recognition of the health value of home care. Since the Olmstead decision, which established the right to community integration for individuals with disabilities, Medicaid has increasingly expanded HCBS programs to “rebalance” services from a preference for institutional care to home care. Moreover, through various “consumer-directed programs,” Medicaid programs enable recipients to hire eligible family members as their care providers, transforming some invisible intra-family care into the realm of public healthcare (Ottmann, Allen, and Feldman Reference Ottmann, Allen and Feldman2013; Kohn Reference Kohn2019). However, how the state is redrawing the public/private boundary of care remains under-examined, especially in terms of how it “sees” the economic value of care—a gap that this article aims to fill. The next section will discuss the advantages and disadvantages of doing so through the mechanism of medicalization.
Medicalization as a restrained mechanism to expand public responsibility
These Medicaid home care programs offer another context for examining the gains and losses of expanding public welfare rights through the mechanism of medicalization, a widely debated topic among disability and health law scholars. As disability law scholars have widely observed, while the text of the Americans with Disabilities Act has gone beyond the medical model of disability, the administration of disability rights—especially when through the welfare law—re-entrenches the medical model of disability rights (Crossley Reference Crossley1999; Areheart Reference Areheart2008; Dorfman Reference Dorfman2017; Macfarlane Reference Macfarlane2021). While medicalization may expand public responsibilities, transcending some traditional ideologies, it may also introduce a new knowledge-based system of medical gatekeeping in public service—both related to legibility and legitimacy for the state.
The medical model of disability contrasts with the social model in both its epistemological conceptualization and social policy implications. In the medical model, a person’s disability is a personal, biological problem requiring an individualized medical solution, and thus, people who have disabilities face no “group” problem caused by society that needs social policy responses. Accordingly, the medical model prioritizes individual-based rehabilitation efforts over structural societal changes (Crossley Reference Crossley1999, 649–53). In contrast, various social models of conceptualizing disability start with the distinction between impairment as a bodily condition and disability as a construct that arises from the interaction between persons with impairments and the social structure, with the unacknowledged assumption that everyone is healthy, nondisabled, and young (Crossley Reference Crossley1999, 653–59). Accordingly, the classical social model generally leads to policy responses that prioritize changing social structures. More updated social models de-emphasize the body and instead conceptualize disability as “an interactive process between the individual, the impairment, the person’s body-mind, and the environment,” advocating for both structure-oriented and health-oriented policies (Dorfman Reference Dorfman2022, 1793–96).
The medicalization of disability is deeply entangled with the welfare state’s perceived need to gatekeep its need-based benefit distributive system and combat the concerns about fraud through an “objective” standard of disability. According to Deborah Stone (Reference Stone1984), the definition of disability as a medical phenomenon expanded congruently with the US welfare state system, which has increasingly relied on disability as an administrative category of need as the major path to public aid. As a welfare state system assigns some people to a secondary need-based distributive system, while maintaining the dominance of the primary distributive system of the labor market, the definition and administration of the assignment criteria must counter society’s pervasive fear of the “disability con”—popular perceptions that disability claims contain fraud and fakery (Dorfman Reference Dorfman2019). Thus, the challenge here is one about legibility and legitimacy: to transform the social experience of disability and need into a standardized, medical version through a legitimate scientific process—in other words, a “seeing like a state” question (Scott Reference Scott1998).
Through this lens, the medical model has the appeal of both legitimacy and legibility building (Macfarlane Reference Macfarlane2021). As a medical conceptualization of disease has developed to absolve the individual from control over, and thus, responsibility for a medical condition, it gives legitimacy to claim social aid as an exception to, rather than a challenge to, the primary system of individual responsibility (Stone Reference Stone1984). Removing individual control makes it easier to earn sympathy from the public, circumvent certain ideological obstacles, and depoliticize social and economic entitlements, leading to the expansion of public provisions with minimal political contestation (Konnoth Reference Konnoth2020). For administering public benefits, the medical model promises that medical professionals, through clinical protocols, can correctly distinguish genuine disability from feigned ones and, thus, “genuinely” needy individuals from those “unworthy” of benefits (Crossley Reference Crossley1999; Macfarlane Reference Macfarlane2021). This clinical certification of disability construes the medical evaluation of impairment as an objective test, separable from subjective and value-laden judgment (Stone Reference Stone1984). The promise of legibility also reduces concerns about fraud and increases the perceived “deservingness” of public service (Dorfman Reference Dorfman2020, 591–94). Nevertheless, the promise of “objectivity” is, of course, not unconstrained. Scholars argue that the medical concepts of “normativity” and “disability” are ultimately social constructs; the definition and administration of the medical disability are elastic and open to constant expansion pressure and backlash reactions on all levels (Konnoth Reference Konnoth2020; Tani Reference Tani2022).
While the medicalization of disability enables the expansion of some public benefits, it redistributes epistemological power away from individuals with disabilities and often punishes individuals or experiences that do not fit the medical narrative. Core to the medical model, medical professionals, not individuals with disabilities or the disability community, control the production of knowledge about disability (Wendell Reference Wendell1989; Crossley Reference Crossley1999; Dorfman Reference Dorfman2017). Furthermore, the state endorses medical professionals’ knowledge of disability by assigning them to legally certify the identity of disability and to act as gatekeepers for the public benefits flowing from that identity (Areheart Reference Areheart2008; Dorfman Reference Dorfman2017; Macfarlane Reference Macfarlane2021). Conversely, medicalization renders people who do not align with the clinical definition of disability “lazy,” “dependent,” and “unworthy of benefits” (Belt and Dorfman Reference Belt and Dorfman2020). When individuals with disabilities have to pass through professional medical gatekeepers to access public aid, the state induces normalization of the medical model’s vision of disability, regardless of the individual’s own experience, knowledge, and identity (Dorfman Reference Dorfman2017). Putting medical professionals in the role of benefit gatekeepers also blurs the boundaries between their medical expertise and their role as administrative bureaucrats, and between medical information collection and state surveillance (Zhang Reference Zhang2024).
Epistemologically, the medical model constrains the state’s vision of disability. The medical model focuses on the individual’s body function and dysfunction at the organismic level rather than the individual’s full personhood or collective lived experiences (Colker Reference Colker2023). It presumes a statistical approach to define the “normal human being” and labels outliers as disabled, implying that an absolute, measurable standard of normalcy in human structure, functioning, and physical ability exists (Crossley Reference Crossley1999, 657). Studying medical testimonies in tort lawsuits, Bloom and Miller (Reference Bloom and Steven Miller2011) find that the medical experts’ pathological descriptions of people with disabilities over-emphasize the physical aspects of disability and repeatedly portray them as “less than whole,” reinforcing disempowering stereotypes about disability in legal procedures.
In summary, the promises and perils of medicalization as a mechanism to expand public provision stem from the medical model’s promise of legibility and the fallacies of this promise. However, disability law literature predominantly focuses on how medicalization affects disability as an identity, remaining mostly silent on the question of disability care. As this study will demonstrate, shifting the focus to care—and its baseline as often economically invisible labor—illuminates both the capabilities and constraints of medical metrics and clinical procedures as a legibility device and value-generating process within the welfare state system.
Methodology
I conducted an in-depth analysis of how New York State’s Consumer Directed Personal Assistance Program (CDPAP) defines and administers the boundary of publicly compensated home care work to answer the two research questions as outlined in the introduction. In this section, I will briefly introduce CDPAP, outline my data collection and analysis strategies, and then provide a statistical summary of the dataset.
An overview of NYS’s CDPAP
In response to the local independent living movement, New York State—similar to many other states—adopted the CDPAP program in the late 1990s to enable people in need of long-term care to recruit their own family, relatives, or friends as the paid caregiver instead of relying on an agency-assigned worker or institutional care. The CDPAP vastly expanded in the late 2010s when the state comprehensively introduced for-profit Managed Care Plans (MCP) to administer its Medicaid long-term care system because CDPAP workers—often family members—have lower overhead costs, more scheduling and location flexibility, and much lower union density compared to the traditional agency model of home care.Footnote 5 The MCP receives Medicaid funding to cover the recipient’s long-term care needs, and is legally bound to pay for all care services to which the state regulations entitle the recipient.
According to CDPAP regulations, a Medicaid recipient in need of long-term care must first obtain a physician’s note attesting to the patient’s functional loss and need for daily assistance and then make a service request to the MCP. Then, the MCP sends an independent nurse to assess the recipient’s needs and issue an assessment report, which often contains a recommendation for care hours and forms the foundation for the “care plan.” The “care plan” determines the maximum weekly duration of CDPAP service that the patient may receive, and the MCP will authorize payment for it. The recipient selects, hires, and trains their own paid personal assistant (PA), while a for-profit or non-profit fiscal intermediary agency processes the payment from the MCP and facilitates the recipient’s management of the PA. The recipient and the fiscal intermediary serve as the joint employer of the PA, while the MCP—the party who authorizes CDPAP hours—does not directly have a legal relationship with the PA.
If the recipient is unsatisfied with the care plan’s coverage, they may request a re-assessment or initiate an internal review of the care plan by the MCP. If the MCP’s internal review does not meet the recipient’s demands, the recipient may further appeal the MCP’s decision to the Office of Temporary and Disability Assistance, whose ALJ issues a decision after a fair hearing. Figure 1 shows the fair hearing records in the structure of the CDPAP system. The recipient can further appeal the ALJ’s decision to the judiciary, but this very rarely happens.
FIGURE 1. The structure of NYS’s CDPAP.
Given Medicaid’s federal-state structure, state programs demonstrate wide variation in program design while sharing some general trends in regulatory structure (Michener Reference Michener2018; Zhang Reference Zhang2024). I chose the NYS program because it is one of the two largest long-term home care programs (along with California’s In-Home Supportive Services system) and relies more heavily on medical professionals than other programs. For example, the NYS CDPAP mandates a nurse-conducted assessment of care needs, whereas the California program relies on social workers to create similar care plans. Variations by state raise questions for future research about the involvement of different professionals in a similar welfare administration process.
Data collection and analysis strategies
The primary empirical dataset comes from the fair hearing records related to CDPAP. The fair hearing records provide a rare opening into mundane yet life-changing contests over the boundary of publicly compensable care labor among recipients and their allies and an array of state and quasi-state actors—medical professionals, MCP agents, and the ALJs—in a realm that is otherwise heavily shielded behind legal protections of family and medical privacy. This provides a valuable source of data to understand the everyday political interactions of ordinary patients and their families with the state (Michener Reference Michener2018). I also supplement the fair hearing records with document research on regulations, court adjudications, guidelines, training videos, and government reports related to CDPAP, as well as public health literature on long-term care assessment. Additionally, I conducted background interviews with seven stakeholders related to CDPAP (see Appendix). These supplemental materials aim to provide a holistic understanding of CDPAP that the micro fair hearing records may miss.
I collected all the publicly available ALJ fair hearing records from NYS’s Office of Temporary and Disability Assistance between November 1, 2010 (the starting date of the online database) and August 31, 2022, that contained the terms “CDPAP” or “CDPAS” in the record’s facts or discussion sections, yielding 3,954 documents. Considering that the Medicaid program does not consistently distinguish between family and non-family CDPAP workers and that the records suggest various levels of family engagement, I chose to analyze all the CDPAP hearing records instead of further selecting the files. Most of these fair hearings dispute a single issue—the duration of the home care service for which the MCP has authorized payment. The care recipient and other actors on their side commonly demand more hours, the MCP defends the shorter duration authorization, and the ALJ makes a decision that supports one side’s duration, fully or partially. The document records testimonies, evidence from both sides, and the ALJ’s reasoning.
As Figure 2 outlines, I conduct a mixed-methods analysis of the fair hearing records, which aligns with socio-legal research on similar materials (Mor and Pikkel Reference Mor and Pikkel2019; Kohn Reference Kohn2019; Kazyak et al. Reference Kazyak, Burke, Behrendt and Oliver2024). First, I employed textual analysis using Python codes to capture basic information about the 3,954 files, including information about the parties, family involvement, dispute issues, and ALJ decisions. The results were then verified by hand-checking a sample of cases. This provides a statistical summary of the dataset. Second, I used NVivo to conduct an in-depth thematic analysis of a randomly selected sample, comprising approximately 10 percent of the dataset, which yielded 398 cases. To analyze the research questions regarding medicalization, the public/private boundary, and the value of care, I, with the help of three research assistants, conducted a thematic analysis on the sample set: I began with open coding, developed three sets of coding families, and then close-coded all the files. The first set regards medical knowledge, clinical protocols, and professional documentation of care needs, as well as related ALJ reasonings. The second set involves unpaid care, voluntary care, caregiver-recipient relationships, and related state actors’ perceptions. The third set involves the narratives of lay actors about the need for and value of care, as well as their understanding of the state’s responsibility for paid care. I further divided the sample cases by the type and result of the cases and analyzed the coding accordingly.
FIGURE 2. Methodology summary.
Instead of interpreting narratives from care recipients and allies as genuine expressions of their feelings, I interpret their recorded narratives as strategic representations of their care needs to secure more state-funded services. Despite the incentives and procedures that may have assimilated their narratives into the state’s vision of care (Dorfman Reference Dorfman2017), I still observe a significant divergence between recorded lay narratives and the state’s vision of care; the divergence from their authentic personal narratives would be even more pronounced.
This study has three limitations. The first is about the representativeness of ALJ decisions. The number of ALJ decisions (3,954 cases over ten years) represents a very small portion of the over 200,000 recipients enrolled in the CDPAP program.Footnote 6 It only represents families who disagree with the state authorization and have the capacity to participate in the potentially deterring fair hearing procedures (Kohn Reference Kohn2019). Second, this set of ALJ decisions is written in a standardized format and does not report information about the specific ALJ, which restricts the possibility of a more in-depth analysis of the potential divergence among ALJs’ decision-making. Third, my analysis treats the care recipients and providers as one analytical unit, which I refer to as the “recipient cluster,” and does not separate them, unless otherwise noted, due to limitations in the data. The ALJ procedure does not formally designate the PA as a party to the dispute and, instead, allows the recipient’s family or non-family PA, other family, and, in rare cases, professional advocates (care managers and lawyers) to participate on the recipient’s side. The records do not consistently distinguish when these actors are acting as representatives of or just testifying in support of them. While various tensions may arise between care recipients and caregivers and/or among caregivers (Cranford Reference Cranford2020) and even occasionally surface in the documents analyzed here, this dataset does not enable a systematic analysis of them.
Statistical summaries
The textual analysis of all 3,954 records provides an overview of the collection of fair hearings. Tables 1, 2, and 3 show the breakdown of the dataset and sample by issue, year, and patient age, respectively. The increasing volume of disputes from the late 2010s is also in line with the massive expansion of CDPAP around the same time.Footnote 7 When divided by the ALJ, in 2,010 out of the 3,954-case dataset and 214 out of the 398-case sample, the ALJ reversed the MCP’s decision and ruled in favor of the recipient, with a winning rate of just over half. Among the 398 cases in the sample, only fifteen cases involved a professional representative, such as a case manager or an attorney, while the rest were handled by the recipients and their family members or caregivers.
TABLE 1. Breakdown of fair hearing records (2010.1–2022.8) by common issue
TABLE 2. Breakdown of fair hearing records (2010.1–2022.8) by year
TABLE 3. Breakdown of fair hearing records (2010.1–2022.8) by patient age
Noticeably, there is no confusion about the gendered nature of family involvement in the CDPAP. As Table 4 shows, many more cases mention female kin terms than their male counterparts, except for uncle/aunt. The number of fair hearing records containing the word “daughter” more than doubles that of the term “son.” Although the textual analysis tool cannot distinguish the family member’s role in the care arrangement, it is evident that daughters, mothers, and sisters are more frequently present in the CDPAP system than their male counterparts.
TABLE 4. Number of fair hearing records (2010.1–2022.8) mentioning each kin term
Findings
I divide my findings into three sections. First, I synthesize the fair hearing data, regulatory research, and public health literature to describe the medicalization of disability care in Medicaid programs. Second, I examine how CDPAP has, within certain limits, disrupted the ideology of unpaid family caregiving and expanded public recognition of care. Third, I reveal the limitations of medical measurements of care by exploring the tension between the state’s vision of care and lay participants’ care narratives.
Finding I: Medicalization of home care as a state legibility project
The state has adopted the medical model of disability care into its definition and administration of public responsibility through three facets that emerge in this analysis: the welfare state’s adoption of gerontologists’ activities of daily living (ADLs) and instrumental activities of daily living (IADLs) indexes as its metric of care needs, the nurse assessors becoming the eyes of the state, and an overall trend that state’s legal actors (ALJs) rely on medical documentation and clinical measurement of care in administrative decisions. I also unpack how the formation and implementation of medical metrics (ADL/IADL indexes) are mutually constitutive with the welfare state’s administrative and political demands by integrating the clinical and ideological conceptualizations of “independence.”
ADL/IADL indexes as the metrics of welfare rights
The medical concepts of ADL/IADL provide the fundamental structure for Medicaid’s long-term care programs. Federal Medicaid regulations define the scope of coverage for “medically necessary services” based on the list of functional tasks found in ADL and IADL.Footnote 8 In the 1950s, drawing from child development theory and based on their clinical experiments with hip fracture patients, the team of gerontologist Dr Sydney Katz first introduced a graded index to provide standardized, scientific measurements of functional (in)dependence in a list of clinically essential human functions: bathing, dressing, toileting, transferring, and eating. The ADL index was based on primary biological and psychosocial functions that reflected the adequacy of neurological and locomotor responses. In the late 1960s, gerontologists expanded the measured range of household activities to include IADLs that were perceived as being core to independent living.
This medical measurement of a patient’s need for long-term disability care—like any professional knowledge production—is by no means free from the social understanding of “normality.” Constructed according to the gendered understanding of a “normal” man and woman’s self-care capacity at the time, the original IADL scale covered five functions for men and an additional three (housekeeping, laundry, and food preparation) for women. In addition to this gendered origin story, the IADL index is criticized for its inadequate consideration of environmental and social factors, such as the patient’s lifestyle, that may influence the definition and assessment process (Albert et al. Reference Albert, Bear-Lehman and Burkhardt2009).
Despite these critiques, the state has adopted ADL/IADL indexes as the administrative lens to understand long-term disability care and as its baseline for social welfare entitlement to such care. Following the advice of Dr Katz and other gerontologists, Medicare and Medicaid widely adopted the two indexes to define and assess service needs in long-term care (Noelker and Browdie Reference Noelker and Browdie2014). Typical of Medicaid HCBS programs, the NYS’s CDPAP defines program eligibility by the patient’s “ability to accomplish ADLs and IADLs.”Footnote 9 The statutory basis for the CDPAP program also defines its scope of “personal care services” by codifying the list of ADL and IADL tasks and defines “medically necessary” services as assistance with these tasks.Footnote 10 The only exception to such task-based authorization is for patients in need of 24-hour care due to their unscheduled nighttime needs. Even in this scenario, the threshold for qualifying for this type of full-time care still depends on the type and frequency of these unpredictable tasks and whether medical causes exist.Footnote 11
Correspondingly, the DOL also uses these two indexes to define the work of care provision. The FLSA exempts workers from providing “companionship services” to adults from the regulations of minimum wage and overtime provisions, which had historically been interpreted to cover almost all home care workers.Footnote 12 When the DOL adopted a narrower regulatory definition in 2013, it defined the FLSA-exempted “companionship services” as the provision of “fellowship and protection.”Footnote 13 By contrast, the DOL defines the provision of care that does not fall under the companionship exemption as “assisting the patient with ADLs and IADLs.”Footnote 14 This new regulatory boundary between FLSA-covered care and FLSA-exempted “companionship” also impacts the state Medicaid program’s service coverage.Footnote 15 In other words, the state employs the medical indexes of ADLs and IADLs to draw the public/private boundaries between state and family responsibilities and between work and non-work.
Nurse assessors as the eyes of the state
As disability law scholars have observed, the adoption of a medical model of disability also prompts the state’s procedural reliance on medical personnel, clinical protocols, and medical documentation in administering and gatekeeping disability benefits (Dorfman Reference Dorfman2017; Macfarlane Reference Macfarlane2021). In the case of the CDPAP, it means the turn to nurse assessors and ADL/IADL-based assessment tools. Since 2013, New York’s long-term care program has mandated that a licensed nurse perform a “Uniform Assessment System” (UAS) to assess the Medicaid patient’s eligibility for care services and the amount of care needed, consolidating both clinical and social assessments. The UAS comprises clinical information about the patient’s medication and disease diagnosis, a community assessment report, and optional functional and mental health supplements. Through a home visit or a phone call (during COVID-19), the nurse assessor, prompted by the UAS software, asks detailed questions to the recipient and their present family member and/or caregiver, performs functional tests, observes the recipient performing certain tasks, and fills in the UAS software accordingly. The UAS software then produces an assessment report that scores the recipient’s overall dependency index, calculates their dependency levels on each ADL and IADL task, the estimated weekly frequency for each task, and the available care resources, including voluntary support, other care program participation, and supportive equipment. The UAS generates a recommended duration of care accordingly. Then, based on the UAS’s recommendation, the MCP authorizes a weekly paid service hour, upon which the recipient, their paid PA, voluntary caregivers, and the MCP create the document of “care plan.” As mentioned above, the care plan sanctions the scope of social welfare entitlement for the care recipient and the scope of publicly paid employment for the paid caregiver. This document constitutes the basis of almost all fair hearings.
The nurse-produced UAS reports that MCPs submitted to the fair hearing records illustrate the procedural power of the clinical assessment for a state legibility project where the nurses act as the eyes of the state to objectively “see” care needs and care work through standardized software. For example, to assess whether an elderly man’s request for more care hours was medically necessary, the nurse observed him “ambulating with cane, gait slow and unsteady” and “unable to raise both hands fully above head,” but “knowing all meds.” The nurse also recorded that the PA “assists with medications pickup, escorting to medical appointments and bank,” while a supportive daughter “visits and provides support on weekends and when he needs it.” The assessment also reported that the man lived in a clean “1-bedroom apartment on the 2nd floor of a house with no elevators and handicap access” that took “27 stairs to enter the member’s apartment.” Based on these observations and the interview, the nurse determined that the patient needed “set-up help only” for most of the ADLs and IADLs but limited assistance for “meal preparation” and “stairs—performance” and extensive assistance with “ordinary housework,” “stairs—capacity,” “shopping,” and “transportation.” The UAS used the standard conversion table to calculate the frequency and duration of these covered tasks and produce a “medically necessary” length of weekly service. For example, the table suggested that the patient needed ten times per week of stair assistance for ten minutes, one weekly off-site laundry visit for 110 minutes, and one weekly kitchen clean for thirty minutes, accumulating a total of 5.17 hours of “medically necessary care.” Based on these three tables and the nurse’s observation reports, the MCP decided to mildly increase the weekly authorized hours from five to nine hours.Footnote 16
The state’s eyes also see and measure unpaid intra-family care through the same medical metric. In the same assessment, while the patient only described the daughter as “provides support on weekends and when needed,” the nurse assessor, applying the same task-list breakdown and conversion tables, produced a table reporting that the daughter offered voluntary assistance with seven ADL/IADLs on the weekend for a total of 7.17 hours of medically necessary care.Footnote 17
This clinical protocol quantified the elder’s request that he would like more assistance with a number of concrete healthcare services through a numeric method while minutely documenting the living environment of care from a functional perspective (e.g., the twenty-seven stairs). Moreover, the clinical procedure also attached a number to the medical value of the daughter’s unpaid care to a family member in a private home—a notoriously hard-to-measure activity outside the market that has long been labeled as an activity of “love and affection” with no public value (Kohn Reference Kohn2019).
Again, the medical conceptualization of long-term care, as illustrated in the ADL and IADL indexes, and its implementation in the CDPAP program are not free from ideologies and interactions with other legal and policy concerns. The medical ideology of long-term care shapes the scope of state responsibility in two ways. First, it provides a clinical justification for providing home care in a limited manner and, in addition, metaphorically justifies the program’s reliance on unpaid familial care. The clinical assessment starts with an assumption of what a “normal” adult is physically capable of and thus responsible for in terms of major self-care and independent living functions. When clinically documented impairments reduce this baseline functional capability, the loss of self-care functions makes functional performance assistance “medically necessary.”Footnote 18 As the ADL index was originally developed to restore hospitalized patients to as much independent functioning as possible, it intentionally safeguards against both the overuse of services that could result in inappropriate dependency and the underuse that could result in unmet needs (Noelker and Browdie Reference Noelker and Browdie2014). Thus, there is deemed a correct amount of care that objectively reflects the patient’s medical needs. In enforcing this vision of care, the state’s assessment protocol encourages a “strength-based assessment” that supports rather than supplants or disregards the abilities and independence of recipients, identifying existing “positive resources” and “informal support” before authorizing publicly paid care.Footnote 19 Here, the clinical definition of bodily “strength” and “independence” extends to the availability of private resources within the patient’s family. Thus, the medical ideology that over-provision of physical support will impede patients from regaining functionality expands, metaphorically, to gatekeeping against the over-supply of state resources when the family has some resources to provide care. Meanwhile, this supposedly clinical procedure meant to measure an objectively correct amount of needed care enforces both the clinical and the metaphorical definition of “strength.” It is the nurse’s medical knowledge of the clinically appropriate functional division of labor between patient and physical caregiver that justifies her role in delimiting not only the medical care but also the legal division of responsibility between the recipient cluster and the state.
Second, informed by their origin as rehabilitation tools, ADL and IADL indexes focus on the functional tasks performed by the patient, rooting the health value of caregiver labor in assisting the patient to complete these physical tasks. This task-centric conceptualization manifests in the medical assessment process: the level of dependency and time needed is calculated for the patient’s tasks from the ADL and IADL lists. Conversely, the NYS Medicaid regulation defines uncovered home care—safety monitoring, companionship, and cognitive cueing for tasks performed by the patients—as passive care, and thus “not medically necessary”; as a result, these fall back into the recipient cluster’s private realm.Footnote 20
Beyond ideologies, structural and administrative concerns also influence medically legible care. Although the nurse assessor’s evaluation is generally considered a scientific measurement of the duration of “medically necessary” care and a legal basis for welfare entitlements, these nurse assessors are bound not only by their medical training but also by their structural role in the procedure. They are contracted by the MCPs, which receive a flat per-recipient fee from Medicaid while covering the actual costs of home care; thus, they face structural cost-saving incentives to restrain public fiscal responsibility.
ALJs on ADL/IADL tasks and nurse assessment
The medicalization of disability care also conditions the ALJs—the legal actors who often produce the final decision from the state—when they scrutinize whether the MCP has fulfilled its legal obligations to provide “medically necessary” public service to the eligible recipient. Most of them show strong deference to nurse assessment and medical documentation in certifying care needs, and incorporate ADL/IADL indexes into their decision-making regarding the scope of public responsibility. Table 5 lists the common ALJ reasonings in the 347 cases from the sample that dispute an adult’s care plan and contain clear ALJ reasoning,Footnote 21 separated by case results.
TABLE 5. Common ALJ reasonings, separated by ALJ holdings (out of 347 cases with some ALJ reasonings)
The nurse’s assessment plays a crucial role in the ALJ’s decisions. Most of the cases where ALJs rule in favor of the recipient (159 out of 188) reach such a decision with some support from the nurse assessment. Almost all ALJs support the recipient’s claim when the MCP’s care plan directly contradicts the UAS assessment. First, in all 76 cases where the MCP reduced authorized care hours from a previous care plan without a nurse assessment to support the reduction, the ALJs cited the lack of clinical evidence to rule against the MCP’s reduction. Typical of this type, in a case where the MCP shortened the weekly care duration from sixteen to twelve hours without conducting a nurse assessment, the ALJ ordered them to reinstate the previous care plan, reasoning that the MCP “did not submit any medical documentation to establish that her medical condition had improved.”Footnote 22 Second, in all of the 34 cases where the MCP authorized a service duration shorter than the recommended hours in the UAS report, the ALJ adjudicated the MCP to increase service authorization to at least match the UAS recommendation and, again, justified such a decision with the legitimacy of the medical professional’s expertise. In one such case, the ALJ reasoned that “the assessing nurse is entitled to significant deference based on her training and firsthand observations, absent significant divergent evidence,” and reversed the MCP’s authorization that was shorter than the nurse’s recommendation.Footnote 23
Even in cases where the nurse assessment does not contain a recommendation of care hours longer than the MCP’s authorization, many ALJ decisions reason that the nurse assessment contained some clinical information that supports the recipient’s request. For example, in a case where the recipient requested an increase of hours for intensifying mobility issues, the ALJ found the recipient’s claim “persuasive” because the most recent nurse assessment recorded that “functional status changed from limited assistance to extensive assistance with regard to walking, locomotion, toilet use and toilet transfer,” in comparison to an assessment five months ago. The ALJ ruled that this functional deterioration, as recorded in nurse assessments, entitled the recipient to an increase in care time to complete the named tasks.Footnote 24 In contrast, in only a small minority of cases where the ALJ ruled in favor of the recipient (19 out of 188), the ALJ’s reasoning criticizes the nurse assessment report, most of which contain some obvious inconsistencies or procedural errors. In one such case, the ALJ supported the recipient’s request for increasing hours above the assessment’s recommended hours because “the assessment establishes needs that required daily assistance, but for unexplained reasons, services were calculated only for three days weekly.”Footnote 25 In some cases, the records produced by other medical professionals are enough to persuade the ALJ. In one such case, two supportive physician notes and one record of nursing home intake convinced the ALJ that the recipient’s care needs could no longer be met by the hours recommended in the last nurse assessment.Footnote 26 However, in only a few (11 out of 188) cases where the ALJ rules in favor of the recipient, the ALJ reaches such a decision without any supportive medical documentation.
On the other hand, in the 159 cases where the ALJ ruled against the recipient’s claim, the ALJ tended to find that the recipient’s claim did not align with the medical vision of disability care. Indeed, the most common types of ALJ reasoning against recipients fall under two lines. The first line regards medical documentation. ALJs ruled against the recipients because they deferred to nurse assessment (86 out of 159) about care needs and/or because the recipient’s claim lacked support from medical documentation (55 out of 159). The second type of reasoning regards the clinical measurement of ADL/IADL tasks. This includes reasonings such as “failure to establish unmet needs of ADL/IADL” (105 out of 159) and the “claim is for supervision, companionship, or other care not involving ADL/IADL tasks” (76 out of 159). In one example, combining both lines of reasoning, the ALJ denying the recipient’s demand for more hours reasoned that “the MCP properly relied on the May 2021 UAS and Tasking Tool when it evaluated the Appellant’s need for an increase in services. Task time was allotted for all ADL and IADL, including going to the bathroom and managing medications. Thus, there was no medical necessity for an increase.”Footnote 27
In many cases, whether the ALJ ruled in favor of (85 out of 188) or against (79 out of 159) the recipients, they reached such a decision by acknowledging the credibility of the recipient clusters’ testimonies. In a noticeable number of rulings against the recipient (41 out of 159), the ALJ even expressed some sympathy for the recipient cluster’s care challenges. In one such case, the ALJ wrote that “while the daughter’s testimony regarding the recipient’s condition is credited as straightforward, detailed, and heartfelt, the recipient did not submit any clinical documentation (i.e., physician records or updated nursing assessment records) to verify that changes in medical condition have necessitated” an increase of hours.Footnote 28 In other words, most ALJs do not deny the existence of care needs outside the medical vision of disability care. However, bound by regulations, they rely on medical professionals and clinical indexes to draw the public/private boundary of care. Some ALJs justified the decision by noting that Medicaid, as a public healthcare plan, is limited to “providing adequate, not optimal, care.”Footnote 29 I will elaborate in Finding III on the substantive tension between the recipient clusters’ lay narratives of care needs and this task-centric medical measurement of disability care that the state actors have incorporated into their decision-making.
Finding II: Enhanced visibility of the health value of family caregiving
As clinical indexes and procedures provide scientific tools to make the value of nonmarket care relationships in private homes—a highly private, economically invisible activity—legible to the state actors, the state can limitedly retreat from its old marker of the public/private boundary—the relational identity of the caregiver. I find that the public home care system withdraws, with some exceptions, from the explicit regulation of the identity of paid caregivers. Nevertheless, it continues to induce and sometimes enforce voluntary care from family members. Moreover, the state charges medical professionals with the administrative power to recognize and certify family members’ unpaid voluntary support.
The limited erosion of the ideology of unpaid family caregiving starts from the federal Medicaid regulations, which permit states to allow care recipients to hire family members as paid PAs, as long as they are not legally responsible relatives (spouses, parents of minor children, and legal guardians).Footnote 30 If a state provides home care through a Medicaid waiver, the federal regulation further allows them to pay legally responsible relatives. In practice, the continuous shortage of home care workers in the labor market also pushes state Medicaid programs to recruit family members into the public care system.Footnote 31
NYS CDPAP regulations have slightly relaxed the rules around PA identities while adopting more thorough medical assessment procedures in the past decade. While the NYS CDPAP program, following federal regulations, excludes spouses, parents, and legal representatives from serving as paid PAs, it permits any other adult relatives.Footnote 32 A 2015 legislative change expanded the pool of eligible PAs to parents of adult (twenty-one or older) children with disabilities.Footnote 33 Another bill sat in the state senate to include parents of individuals between eighteen and twenty-one in response to the care worker shortage.Footnote 34 In conjunction with the expansion of paid family PAs, the 2021 regulatory change required a physician’s order from an independent practitioner who is not the individual’s attending physician before authorizing the home care service.Footnote 35 It also required the recipient to demonstrate a minimum need for assistance and codified the exclusion of supervision and social cueing without any enumerated tasks from authorized services.Footnote 36
Mirroring the trend in CDPAP regulations, the fair hearing records show that both MCPs and ALJs rarely contest the familial identity of the PA as a reason for disenrollment or payment reductions. All four of the exceptional cases from the 398-case sample where the MCP raises concerns about the paid PA’s familial relationships involving some allegations of fraud. In the first case, the paid PA was the mother of the care recipient’s daughter, who also represented the recipient in the ALJ procedure. The ALJ found a violation of program regulation and disenrollment. In the second case, the mother of a 21-year-old son with cognitive conditions gave up the Supplemental Security Income payee status on his behalf in order to become a paid CDPAP. The ALJ found the mother ineligible to be a PA because she had formally acquired the status of a legal guardian. Thus, she was directing care on her son’s behalf while being paid as the care provider, leading to a conflict of interest. In the other two cases, the ALJ dismissed the identity concerns and ordered the agencies to hire the recipient’s chosen PA, who was a family member.
In addition to the absence of disputes explicitly litigating the paid PA’s familial identity, the under-enforcement of two CDPAP regulations concerning the caregiver-recipient relationship suggests the system’s withdrawal from enforcing universal unpaid family caregiving in practice. First, the NYS regulation allows the patient to hire “a family member not residing with the care recipient or residing with the care recipient because of care needs.”Footnote 37 Nevertheless, only two out of 398 cases raised residency-related concerns, even though the fact pattern of many files clearly suggested that the family caregiver had always resided with the recipient. Second, the NYS regulation stipulates that the recipient must be willing and able to select, hire, and train the PA or have a designated representative to do so. The designated representative cannot also work as the PA.Footnote 38 The MCP or the ALJ raised some concerns about the overlapping role of the paid family member in three cases, and only one resulted in disenrollment. Meanwhile, in many more cases, the paid PA comprehensively represented the recipient with some cognitive disability throughout the assessment and fair hearing procedures, indicating that the paid PA at least informally acted as the recipient’s designated representative of self-directing without sabotaging their program eligibility. The under-enforcement of both rules offers families more flexibility in care arrangements.
While the state actors have largely retreated from scrutinizing the paid caregiver’s familial identity, they continue to solicit, maintain, and even enforce unpaid family caregiving when the family member consents to it, including implied consent by already doing it without pay. The NYS regulation requires the assessment process to exhaust voluntary, informal support before authorizing paid CDPAP hours. The nurse assessor must “survey the potential contribution of informal supports from family and friends, including the number and kind, ability and motivation, extent, future availability, and acceptability of such support.”Footnote 39 In other words, even though the CDPAP program is designed to pay family members for some of their care, it continues to operate on unpaid caregiving from a similar group of caregivers. Three dynamics from the fair hearing records further reveal the system’s reliance on this hegemonic dimension of unpaid family caregiving.
First, when a family member is present in the recipient’s life, the MCP, the ALJ, the care recipient, and the family member tend to presume some unpaid care contribution until another legitimate activity rebuts such a presumption. A large amount of the presumed voluntary assistance stays beyond the scope of dispute, even when the recipient cluster requests more paid hours for other reasons: 113 out of 398 cases mentioned unpaid care support from family and acquaintances. The unpaid voluntary support flows from spouses, other family members who are eligible but not currently enrolled, and those who are currently paid PA during other hours. Their voluntary assistance ranges from periodical assistance, such as taking the recipient to medical appointments,Footnote 40 to routine ones that are officially built into a weekly care schedule, from social activities that the CDPAP program does not cover, such as “stopping by to help,” Footnote 41 to medically necessary ADLs and IADLs, such as turning and positioning the recipient at night.Footnote 42 Noticeably, both state actors and recipient clusters tend to use more general, non-medical language to describe voluntary assistance than paid home care, such as “some informal support,” “care for,” “help with everything,” and “actively involved in all aspects.” They also refer to the amount of assistance by less accurate time-related terms, such as “on the weekends”Footnote 43 and “when the [caregiver] gets home.”Footnote 44 In addition, the recipient clusters commonly volunteer information about family members’ paid jobs, health issues, other care charges, or living conditions to justify their unavailability for unpaid caregiving. Even though these family members do not have a legal duty to provide care, family members feel the need to offer justification for their unavailability, prompted or unprompted by state actors. The presumption of unpaid family care can encroach on the scope of state-paid care. In 84 out of the 398 cases, the MCP listed family members’ voluntary assistance, as recorded in the medical assessment, as a reason for fewer hours.
Nevertheless, following the regulation, the presumption of voluntary assistance is not irrefutable, especially when the family member provides a justification. For example, in one case, the MCP cut hours because “family members can help the Appellant with such things as grocery shopping and cleaning since they must do these things for themselves whether the Appellant is there or not.” When the cohabitating wife cited her own extensive medical problems to justify her inability to do her husband’s share of housework, the ALJ held that “even if other relatives lived with the Appellant, they are not required to help the Appellant with such things as grocery shopping and cleaning” and the recipient is “entitled to receive the ADL help for which he is entitled.”Footnote 45 Most ALJs guard against the MCP’s fiscal incentives to maximize unpaid care from family members when the family member clearly declines such duty with reasonable justification.
Second, despite many ALJs quoting the regulatory language that “informal assistance is voluntary and cannot be coerced or required in any manner whatsoever,” an authorization dispute subjects the recipient cluster to procedural gatekeeping and sometimes substantive scrutiny when a family member withdraws their voluntary assistance in the hope of more state-paid care time. In other words, the performance of unpaid care constitutes consent to continuing this care with the legal effect of excluding public payment. In some cases, the ALJ’s deference to the nurse assessor’s epistemological authority also extends to voluntary assistance, constituting another procedural gatekeeping of withdrawal of care. For example, when the daughter and paid PA of an 88-year-old woman with Alzheimer’s demanded increased time because the recipient’s other daughter quit caring for the mother, the ALJ found the daughter’s testimony “detailed” and “sympathetic” but ruled that it did not contradict the nursing assessment finding that the other daughter voluntarily assisted with ADL and IADL tasks on weekends since the alleged withdrawal of voluntary help occurred after the assessment. Instead, the recipient cluster needed to request another nurse assessment to record the change of voluntary help that would warrant an increased authorization.Footnote 46 In this scenario, the ALJ did not deny the testimonial value of the family members’ own description of the care changes, or argue that the assessors’ medical professionalism gives them a better epistemological capacity to evaluate consent from an unpaid caregiver. Rather, it is the administrative procedure that gives the nurse assessor the power to certify a change of voluntary service on behalf of the state.
In addition, in cases where the withdrawal of voluntary support is partial or uncertain, ALJs generally find that recipients continue to have voluntary support. In one such case, where a recent fall significantly increased the recipient’s clinically assessed need for walking assistance, the recipient requested more paid time from her daughter/PA. However, based on the facts that “the daughter was not seeking to return to work outside of the home” and she had helped the recipient “with everything as needed both during aide hours and after hours voluntarily” and the recipient’s testimony that the daughter “sometimes has her ways but still helps at the end of the day,” the MCP and ALJ found that the daughter PA has the capability and willingness to absorb the increase of personal care tasks without the need for any additional pay.Footnote 47 In other words, the family PA’s consent to care constitutes a generic commitment that includes new care needs.
Beyond procedural gatekeeping, the existence of unpaid care also generates paradoxical evidentiary value for the need for more paid hours when the same caregiver withdraws voluntary service. On the one hand, the fact that another person has spent time assisting the care recipient beyond the service authorization supports the recipient cluster’s claim of needing more care. On the other hand, the past availability of voluntary support also implies the continuation of voluntary support into the future, negating the need for more public support. Straddling between the two, ALJs arrive at different decisions depending on various factors, such as the nature of the care tasks and the certainty of the withdrawal from unpaid care. In one case, the ALJ found the recipient’s testimony that “her daughter moved to New Jersey four months ago and no longer aids” and “she will help, but only if paid” contradictory and unreliable and ruled that the contested care need could continue to be met by voluntary help.Footnote 48 In another case involving a disabled minor, the ALJ accredited the statement that the previously informal caregiver who helped with nasogastric tube feeding and replacement—which the ALJ found to be “specialized care”—was “available temporarily on an unpaid basis and is only available to continue providing such care if she is paid so she has income,” and ordered the authorization of paid care hours.Footnote 49 In contrast to these mixed findings regarding past unpaid care, in all four cases where the recipient clusters had paid out of pocket for additional care outside the state authorization, the ALJs found that the past payment established the need to increase publicly paid PA hours.
Third, many ALJs assume some scheduling flexibility from a cohabitating family PA. Thus, the state only pays for the exact duration when the family PA performs a specific personal task, not for the time blocks around these tasks. In other words, there is a presumption that the family PA’s ubiquitous presence around the care recipient is not worth payment. For example, when the daughter PA of an elderly woman requested an increase of hours because the tasks of medication management before bedtime fell out of the planned hours, the ALJ rejected such a request, reasoning that “as she lives with the (recipient) and therefore, even when the daily CDPAP hours have passed she, or another available family member, will still assist the (recipient) with her medication.”Footnote 50
In sum, the state has withdrawn from strictly enforcing the separation between familial relationships and paid care while continuing to rely on the hegemonic dimension of unpaid family care.
Finding III: Tensions between clinical and lay visions of care
The best way to appreciate the construction of a state legibility project is to understand “what fell out of its field of vision” (Scott Reference Scott1998, 12). Since medical professionals like nurse assessors and clinical protocols like UAS software have become the eyes of the state to “see” the health value of home care through a list of functional tasks, what alternative visions of valuable care lie outside or against this scope? Through a thorough examination of the recipient clusters’ testimonies, this section unpacks these lay visions of disability care through the three most common themes: caregiver presence, harm and risk reduction, and reaction to health decline. These lay narratives exhibit both tensions and overlaps with the medical measurement that centers on patient-performed tasks.
Caregiver Presence
Most of the recipient cluster narratives on unmet care needs describe a time gap where another caring human being is not present during some part of the recipient’s schedule, routinely leaving the recipient alone. Conversely, the presence of an assisting body per se constitutes valuable care that deserves state support, regardless of whether it is tied to a specific physical movement of either the recipient or the caregiver. Representative of this narrative, the daughter/PA testified on behalf of a disabled elder that “she is with (her mother) until 2:00 PM and then her sister arrives to care for (the mother) but not until 7:00 PM and, therefore, (the mother) is alone for five hours daily … They requested at least a few additional hours between 2:00-5:00 PM because ‘she [the mother] is very sick, she is not capable of even opening doors on her own and cannot be left alone” (Testimony A).Footnote 51 In a similar but more task-oriented narrative, the niece/representative of a disabled elder testified that “the PA arrives at 7:00 a.m. and leaves at 3:00 p.m. so the recipient fails to receive assistance with dinner, preparation for bedtime and any other task needed after 3:00 p.m.” (Testimony B).Footnote 52 Thus, she argued for an increase in authorized hours to enable dinnertime care.
This thread of narrative focusing on caregiver absence as the basis for more paid care work raises two tensions with the medical measurement of care needs. The first tension is over the method for calculating time. The nurse’s UAS software calculates the duration of service authorization, while most caregiver presence narratives describe the gap in terms of scheduling time. The medical measurement calculates the absolute length that one average person would take to finish a list of tasks in assistance with or substituting for the patient. In the lay narrative, in contrast, the temporal gap of caregiver absence flows from a rhythm of the routine in which the ADL/IADL tasks are embedded. Thus, the time spent on dinner assistance is distinct from and cannot be easily consolidated with the time spent on lunch assistance, even when no other stand-alone tasks occur between the two, and an absolute durational measurement is adequate to cover both tasks. Some caregiver presence narratives also describe the care gap in relation to the schedules of other, often unpaid, caregivers, whose presence is constrained by competing missions, such as paid jobs outside the home. In doing so, they implicitly or explicitly justify the absence of unpaid caregivers and envision the state’s responsibility as the supplemental bodily presence after the family exhausts the available caring bodies in the cluster.
The second tension lies in the presumption of the recipient’s independence vis-à-vis dependence. Many of the caregiver presence narratives carry a presumption that the recipient—due to a combination of age, physical or cognitive impairment, and other factors—is so physically, cognitively, or socially vulnerable that they constantly depend on another person to live a life. This includes addressing unpredictable or even unspecified needs for assistance that living with functional impairments entails. In contrast, the medical measurement of disability care by both nurse assessors and ALJs starts with the opposite presumption that an adult patient is independent until a clinical test definitely proves their loss of functional capability to perform such a task. Even then, the adult patient only needs assistance with regard to completing specific tasks, but does not demand help or supervision in general.
Across the cases, caregiver presence narratives that include specific incomplete ADLs/IADLs, like Testimony B, are more likely to receive a supportive ALJ decision than those without, like Testimony A. However, even among cases where ALJs find an unmet ADL/IADL task, some of them order the recipient clusters to distribute the CDPAP time flexibly in response to the scheduling gap rather than increasing the CDPAP time, which speaks to the tension between durational and scheduling measurement of care time.
Harm and Risk Reduction
Many of the recipient cluster narratives also illustrate their care needs by describing various types of harm and risks that the recipient cluster has endured, expects to endure, or is afraid of enduring because of inadequate care time. Conversely, the value of care labor derives from the health and environmental harm that more publicly paid care may prevent or reduce.
Many of the harm prevention narratives raise accumulating bodily suffering, symptoms, or new illnesses that the recipient had endured as a direct result of missing ADL/IADL assistance. In one case, the recipient cluster testified that the recipient was put to bed at 4 pm due to the shorter authorized hours, leading to deteriorating body strength.Footnote 53 In another example, the daughter and unpaid caregiver of a 92-year-old elder testified that due to not receiving 24-hour care and the fact that the daughter lacked the physical strength to reposition the elder every two hours at night, the elder incurred an untreated bedsore wound on her buttocks, even though she lived with the daughter.Footnote 54 In most of these cases, especially when the recipient submits medical documentation of these harms, ALJs rule that a longer service authorization is “medically necessary” because the recipient clusters sufficiently established the existence of unmet needs with ADL/IADL tasks.
Meanwhile, some of the harm reduction narratives raise more tension with the medical vision of disability care. For example, in a detailed testimony, the recipient who received twelve weekday hours of paid care but four hours on weekends requested an additional twelve hours during the weekend. The recipient testified that she needed these hours because she “does not want her daughter (the unpaid caregiver) to stay with her on the weekends, because she is worried about the daughter. An ambulance had to be called for the daughter once while she was at the her home due to the daughter needing medical assistance” (Testimonial C-1). The daughter/unpaid caregiver also testified that she was disabled herself and “wants these hours for herself, so she can shop, go to her own appointments, get her own medicine, and to cover for her if she does not feel well” and that she “leaves the mother with fear of whether the mother will be okay” (Testimony C-2).Footnote 55 In another example, the daughter of an Alzheimer’s patient requested three additional CDPAP hours per day, stating “the family always makes sure that someone is with the recipient because the recipient becomes hysterical and cries and the family is scared that she may start the fire. She is paranoid and recently forgot that she locked the door and thought that she was locked out; refuses to use the walker and it is better if someone assists when she walks because [she] can trip on the walker and/or cane; and that [she] does not want to use bedside commode because she says she is not old….with no one there to watch over [the recipient], she would end up injuring herself or burning down the house” (Testimony D).Footnote 56
Recipient cluster narratives like these two examples conceptualize home care’s harm reduction value in divergence from the state’s vision in the following three ways. First, the subject of the harm at stake is more expansive than the individual patient’s body. Testimonies C-1 and C-2 identify the harm in care labor’s materialized burden on the unpaid caregiver’s health and the recipient’s and the caregiver’s mutual concern about each other’s health conditions. This micro dynamic only reflects the broader societal phenomenon that the provision of long-term care results in negative health consequences for caregivers (Hoffman Reference Hoffman2016) and that the providers of disability care are often individuals with disabilities themselves (Nishida Reference Nishida2022). Similarly, Testimony D locates direct harm from the caregiver’s absence in the destruction of the living environment in addition to the patient’s body. The second tension lies in the actor who performs certain tasks to prevent harm. Especially as Testimony D demonstrates, even when the recipient is not completing any designated ADL/IADL task, the caregiver is not free from active labor. Instead, caregiver presence may demand physically active labor from the caregiver to comfort the recipient, hold the recipient while she walks, and stop her from standing up without using the commode. The third tension involves the relationship between the direction of care provision and regaining function. A clinical justification for adopting ADL/IADL indexes is that by accurately measuring the amount of assistance that a patient needs, the indexes protect against over-provision of care. According to gerontologists, if the caregiver unnecessarily replaces tasks that the patient is physically capable of performing, over-provision of care may impede the patient’s course of regaining functionality (Noelker and Browdie Reference Noelker and Browdie2014). As Testimony D exemplifies, contrary to this belief, a longer duration of caregiver presence can also enable the patient to gain or keep mobility and perform more functions safely, precisely because of the risk prevention value of care.
In most of the cases like these two, where the recipient narratives describe harm and risks but do not connect them to the patient’s ADL/IADL tasks, the ALJs ruled against the recipient, reasoning that their demands constitute “safety monitoring, companionship, and cognitive cueing” with no ADL/IADL assistance, which CDPAP regulations exclude from “medically necessary” care. Especially in the cases that narrate harm to caregivers, such as Testimony C-1 and C-2, the ALJ directly stated that the fact that the recipient cluster demanded more care for the caregiver’s sake showed that the request for more hours was not “medically necessary.”
Thus, the state sees the harm prevention value of care when it is corroborated with documented deterioration of the patient’s health caused by a missing ADL/IADL assistance. Meanwhile, the medical model’s presumption of disability that locates the incompetence in an individual’s diagnosed loss of specific functionality leads the state to “unsee” the value in reducing other health and safety harm caused by the recipient or the care relationship—harm that is often embedded in the relational and social environment surrounding the recipient.
Reaction to health decline
A third theme in lay narratives describes the recipient’s worsening health conditions as a basis for an increase in “medically necessary” home care. Most of these narratives connect the deteriorating health to functional losses in ADL/IADL tasks. For example, the caregiver of an ailing elder testified that the nurse assessment “failed to take into consideration his doctor’s additional diagnosis of neurogenic bowel, as well as the increased toileting and bathing hours that correlate to this new diagnosis.” In addition, the nurse assessor was wrong to claim that he “could self-administer his medications by relying on timers…they’ve tried using alarms; however, he frequently sleeps through the alarms because of his [medical conditions] and thus misses dosages [after the caregiver left].” (Testimony E)Footnote 57 Some narratives suggest that the worsening health conditions change the content or frequency of a given ADL/IADL task and extend its duration beyond assessment. In another example, an ailing elderly woman, with the help of her two adult children, vividly described interrelated health decline, increasing need for ADL/IADL tasks, and the harm resulting from the care gap: “due to pain in her legs and tremors in her hands, she cannot use the walker unassisted…and the walker does not fit through the doorways in her house, causing her to enter the bathroom without any device.” Also, due to the pain, “she sleeps only two to three hours at a time and is then up for several hours…and must use the bathroom several times per night,” Lacking authorization for nighttime care, all these declining health conditions “have resulted in many nighttime falls since the June denial of increased services” (Testimony F).Footnote 58
The health decline narratives of care needs raise some tension not with the ADL/IADL task list, but, rather, with the impairment-to-task translation in the clinical assessment. As these narratives demonstrate, how a diagnosed physical or cognitive impairment translates to the amount of care needed depends on environmental factors (such as the home’s infrastructure) and social factors (such as living alone) beyond the functional measurement of the patient’s bodily capacity.
In reaction to these cases, most ALJs rely on medical professionals and medical documentation to establish the connection between health decline and increased needs for ADL/IADL assistance. In most cases where the health decline narratives receive ALJs’ support, the recipient also submits a nurse assessment or other medical records, such as a doctor’s note, to corroborate their account. For example, in the case containing Testimony E, the ALJ supported the request regarding toileting needs considering the evidence of a new diagnosis submitted by the recipient’s treating doctor while rejecting the request regarding medication administration because the recipient did not submit any medical evidence to “establish a causal relation between his medical conditions and an inability to be awakened by alarms or timers.”Footnote 59 In the case containing Testimony F, the ALJ found that the records of hospital visits may indicate the medical needs for a longer duration of care, but that a new nurse assessment was needed to confirm the specific amount of need for nighttime assistance.
Overall, in contrast to the clinical vision that prioritizes the functionality of the patient’s body (e.g., a diagnosis list) and the mechanic living environment (e.g., a list of care equipment) in measuring care needs, recipient clusters’ narratives tend to describe care needs in relation to more fluid relational and inter-personal factors, and envision a responsibility for the state to enable a more expansive, contextual scope of care. As these care narratives show, the value of home care—the care work that an individual needs to sustain life—is not merely a functional reaction to physical and mental impairment but deeply embedded in various conditions of their living environment, including the economic, social, and health conditions of the caregivers. In addition, how physical and mental impairment gives rise to a need for care also responds to social, structural, personal, and subjective factors.
These lay accounts of care are by no means always opposing or outside the current ADL/IADL task-centric care measurement. None of the three lay narrative themes identified in this section has a noticeably higher or lower likelihood of receiving ALJ support. Rather, the results of the cases generally depend on how well these narratives substantively align with the individual-oriented, task-list clinical vision of “medically necessary” personal care and are corroborated by medical documentation. In other words, through the scope of medicalization, the state unsees a substantive part of the more contextual accounts about the value of care that the care recipients and caregivers voice and envision as the responsibility of the state. These narratives suggest an alternative approach to conceptualizing, measuring, and making legible the health and non-health value of home care in a more expansive and embedded manner.
Conclusion: Towards relational legibility of care’s value
In summary, in this study of CDPAP, the state has employed the mechanism of medicalization to transform some parts of private family caregiving into the realm of public healthcare work. The state program relies on medical concepts, such as ADLs/IADLs, and clinical procedures such as nurse assessment, to define, examine, and certify the needs and value of care and redraw the public/private boundary of care accordingly. Legal actors, such as ALJs, further reinforce the state’s reliance on medical professionals and medical knowledge in the fair hearing process, where care recipients and caregivers both utilize and contest these clinically produced documents to assert their rights to public care. On the one hand, this process of making care public sheds light on the health value of home care, including intra-family care, whose economic value the legal system has long failed to recognize. On the other hand, the state’s reliance on medical professionals, medical concepts, and clinical protocols for defining and measuring care limits its scope to functional task lists, overlooking other health and non-health values for personal care that are often embedded in social and relational contexts.
Thoroughly examining CDPAP fair hearing records, this article makes two contributions to the literature about care, disability, and the welfare state. First, it provides an updated account of the current public/private boundary of care after the state’s limited yet significant expansion of public responsibility into home care over the last few decades, which paints a more nuanced picture of how the legal system values and undervalues care, transcending the ideology of unpaid family caregiving. Second, it contributes to the debate about medicalization among disability law scholars by outlining the medical model’s gains and limitations as a state legibility project. Especially for traditionally undervalued social goods such as care, medical metrics provide a lens to make visible their value despite being highly constrained.
NYS’s CDPAP is one among the many Medicaid programs proliferating across the US that blur the boundary between family and paid care. The variation among these state programs offers us a rich field to further study the contemporary landscape of care, disability, medicalization, and the welfare state. Comparing these programs along factors such as the professional identity of the care assessor (nurse vs. social worker), the coverage of care services (whether the program covers supervision and companionship), and the scope of covered family members (whether it pays spouses) can further test and expand the findings of this article. Future research may also examine whether and how this article’s observation about a means-tested Medicaid program differs from how private long-term care insurance plans targeting middle-class families make care legible.
Understanding medicalization as a legibility project leads us to examine the specific metrics as normative devices in the administration of the welfare state. Even in a welfare service program premised on valuing home-based care work, limitations in clinical measurements and residues of the unpaid family caregiving ideology continue to undervalue care. To some extent, any state legibility project unsees some of the holistic aspects of lived experiences and the “whole person,” as an intended consequence of any standardized measurements (Scott Reference Scott1998). Nevertheless, this study has theorized about the value of care from lay narratives to offer insights into valid health and non-health values of home care that systematically fall outside the current metrics. Nevertheless, these metrics that the welfare state employs also constitute a potential site of change. The common themes from lay narratives, such as caregiver presence and harm reduction, offer some starting points, not all of which are ungrounded in medical expertise or impossible to reflect in a metric. For example, the value of caregiver presence finds resonance in the then US Surgeon General’s 2023 advisory report, “Our Epidemic of Loneliness and Isolation,” which argues for the healing effects of social connection and the urgency to develop “pro-connection policies” and metrics for social connectedness. Thus, future policy research could also build on these findings to further explore the relational dimension of care and alternative legibility mechanisms that may more holistically recognize the value of care that lies in the care relationship and the social environment of such a relationship.
Appendix: List of background information interviews
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