Autonomy in Disciplinary Institutions

Producing autonomy is a primary aim of many disciplinary institutions including schools, prisons, and welfare programs that work to produce autonomy as a condition of citizenship, personhood, or participation in society (Haney 1996, 2010, 2018; McKim 2014). The concern for autonomy is especially salient in modern welfare programs because of the deep stigma attached to dependency (Fraser and Gordon 1994). As a result, reducing dependency as much as possible is often either a condition for services (as is the case for work requirements attached to entitlement programs) (Little 1999; Peck 2001; Wacquant 2010) or a main goal of caregiving (especially for people with disabilities) (Brisenden 1986; Morris 1993; Crewe and Zola 2001; Power 2008). In these cases, making a person “as independent as possible” serves two primary purposes. First, because Western ideals of autonomy and independence underpin other social identities like adulthood, disciplinary institutions serve a normalizing function in society by producing citizens that are self-reliant (McKim 2008; Silva 2013). Second, producing independence achieves the primary goal of the neoliberal welfare state of reducing the person’s economic burden on the government, serving the values of efficiency (Christman 1998; Wacquant 2009, 2010). A majority of research on the welfare state views this implementation of autonomy as a one-way process of forcing or inducing people to develop autonomy. In these conceptualizations, the ideals of autonomy and independence are fully formed in institutions and placed on the person who, for various reasons, complies by adopting the values imposed by the systems of social control.

In a comparative project with Guillermina Altomonte (2021), I challenged this view by showing how autonomy is an interactional accomplishment (much like gender) that requires groups to coordinate their actions toward one another to produce autonomy. While the idealized expectations about independence, which we call institutional autonomy, built into social structures are important, they form just one dimension of autonomy at play in rehabilitation programs for the elderly and disabled. In addition to institutional autonomy, we argue that caregivers, patients, and families must attend to practical autonomy, the physical and cognitive ability to perform a task independently, and moral autonomy, the individual’s desire and motivation to be independent, in their work together. All three dimensions make different assumptions about the meaning of autonomy: when and how a person should be independent.

Similarly, Altomonte (2020) has shown how multiple meanings of independence are sometimes “packaged” differently to moralize divergent economic decisions about discharge for elderly patients in post-acute care. In her analysis of discharge decisions, she finds that staff have three understandings of independence. Institutional independence prioritizes home as the ideal place to facilitate a person’s autonomy. Staff invoke safe discharge to emphasize that independence sometimes requires assistance from technologies and caregivers in order to allow a person to live in their own homes. Finally, independence as self-reliance encourages fast discharge by invoking the personal responsibility of the elderly person to be independent. By mobilizing multiple definitions of independence and packaging them in different ways, staff in a context of limited care moralize difficult and imperfect decisions about when to send an elderly person home.

Neil Gong (2019, 2024) challenges the prevailing wisdom that idealized expectations of independence are applied universally to people with serious mental illness by showing how the meaning of independence diverges for poor and wealthy clients. His comparative work shows that there are two separate structures for mental health care that prioritize independence in different ways. In the public system tolerant containment prioritizes basic harm reduction and often allows poor patients to forgo medication or other forms of mental health treatment in the name of choice. In contrast, private clinics engage in concerted constraint as they mobilize vast therapeutic and financial resources to compel wealthy patients to change their behavior. Gong’s findings complicate assumptions about social control and class in mental health care by showing how public and private clinics implement independence in vastly different ways.

In this paper I extend research on independence to show how conflicting definitions of it are implemented in interaction. That is, I study how the provinces of meaning for independence conflict within systems and how parents and staff reconcile conflict so that they can see the person in their care as autonomous. This analysis is made possible, in part, by the hybrid funding structure at MTIC in which care echoes both Gong’s concerted constraint and his tolerant containment. MTIC families pay privately for portions of the program, but the organization also bills Medicaid, so it is subject to the definitions of independence deployed by federal welfare programs. This unique system means that the multiple meanings of independence described by Gong come together at MTIC, allowing me to answer Tavory’s call to investigate the ways people engage across multiple provinces of meaning.

Funding Deinstitutionalization

Until 1950, the standard of care for people with intellectual and developmental disability (IDD, then called “feeblemindedness”) was to place them in large custodial institutions where, ideally, they would receive care and training that enabled them to work unskilled jobs in the community. The custodial institutions never quite lived up to this expectation (Trent 1994). They quickly became unwieldy, overcrowded, and underfunded, conditions that ultimately led to their closure. The Mental Retardation Facilities and Community Mental Health Centers Construction Act of 1963 (PL 88-164) detailed the terms of this “deinstitutionalization,” stipulating that smaller community facilities should replace large institutions for both people with mental illness and what was by that time called “mental retardation.” This project was funded through federal welfare programs like Medicaid, Medicare, SSI, and SSDI (Lerman 1982).

The process proceeded in fits and starts, not least because alternative community-based programs didn’t exist on a scale large enough to accommodate the vast number of people housed in institutions at the time (Bagnall and Eyal 2016). This changed in 1983 when the U.S. Congress added section 1915(c) to the Social Security Act, a provision that allowed states to repurpose Medicaid funding for non-institutional care. These home and community-based services (HCBS) waivers allow states to use Medicaid funding for an array of services including case management, homemaker services, home health aides, personal care services, adult day care, habilitation services, and respite care (Duckett and Guy 2000). As of 2020, 5.6 million people in the United States received long-term support through Medicaid; a full 76% of them used their funding for home and community-based services (Chidambaram and Burns 2023). Today, Medicaid pays for almost 70% of all home care spending in the United States (Mohamed, Burns, and Watts 2025).

HCBS waiver funding transformed the landscape of caregiving for people with intellectual and developmental disabilities in the wake of deinstitutionalization. Though it took a long time for facilities and programs to take shape for adults with IDD, the result was a relatively comprehensive system of caregiving and social support, especially compared with the system that developed for people with psychiatric diagnoses (Bagnall and Eyal 2016). For people with IDD, HCBS waivers contributed to a 36 percent increase in total system capacity between 1983 and 1999 (Braddock 1999). Of the total $49.7 billion spent annually by Medicaid on people with IDD as of 2023, approximately 77 percent comes from HCBS waivers. Today, this system overwhelmingly supports people in non-institutional settings (Tanis 2025).

Scandals in New York

In New York State, where MTIC is located, the process of deinstitutionalization was marked by a series of public scandals that shaped the ethical landscape for community-based care. Willowbrook State School, built in 1948, was the largest institution in the world for people with intellectual and developmental disabilities, housing 6,200 residents at its height (College of Staten Island n.d.). From its inception, the facility was too big to provide adequate care for its residents; William Bronston, a physician at Willowbrook, called the facility little more than a “human warehouse” (Minnesota Governor’s Council on Developmental Disabilities 2026). In addition to chronic overcrowding, Willowbrook was home to egregious abuses including a 14-year study (started in 1956) in which Willowbrook residents were purposely infected with hepatitis (Krugman 1986). Following a 1965 visit in which he found thousands of residents “living in filth and dirt, their clothing in rags, in rooms less comfortable and cheerful than the cages in which we put animals in a zoo,” Senator Robert Kennedy described Willowbrook as a “snake pit” (Minnesota Governor’s Council on Developmental Disabilities 2020). In 1972, the institution was in the national spotlight again when Geraldo Rivera produced a television exposé, Willowbrook: The Last Disgrace (Rivera 1972), putting the deplorable conditions in front of millions of viewers.

Amid public outcry, in 1975 New York State issued the Willowbrook Consent Decree, ordering that Willowbrook’s resident population be slashed to 250 by April 30, 1981. The decree established the constitutional right of Willowbrook residents (The Willowbrook Class) to be protected from harm and stipulated that residents be moved instead into community placements that provided the “least restrictive environment and most normal living conditions possible… to ready each resident, with due regard for his or her own disabilities and with full appreciation for his or her own capabilities for development, for life in the community at large.” The decree defined a community placement as “a non-institutional residence” housing 15 or fewer “mildly retarded adults” and 10 or fewer people with more complex needs (N.Y. St. Ass’n for Retarded Children v. Carey, 706 F.2d 956 1983). Reducing the Willowbrook population was a drawn-out process; the facility officially closed its doors on September 17, 1987 (Minnesota Governor’s Council on Developmental Disabilities 2024).

Shortly after the Willowbrook Consent Decree was signed, then Governor of New York, Hugh Carey, extended the constitutional protections granted to the Willowbrook Class to everyone served by the newly created Office of Mental Retardation and Developmental Disabilities (OMRDD), setting the groundwork for the steady closure of institutions across the state (Sundram n.d). In 1978, when OMRDD began operations, there were 16,477 New Yorkers residing in developmental centers (down from 27,000 in 1967). The state’s institutional population declined steadily to 11,728 in 1983, 9,240 in 1988, 4,730 in 1993, and 2,100 in 1998. Today, the number of people in placements with more than 16 residents continues to hover around 2,000 in New York State (Tanis 2025).¹

While deinstitutionalization addressed many of the most egregious abuses that took place in the institution, the current system for service provision is far from perfect. In 2011, a series of articles in The New York Times documented widespread abuse and neglect at the state-run group homes that replaced Willowbrook and other large institutions (Hakim et al. 2011). A 2012 state report titled “The Measure of a Society: Protection of Vulnerable Persons in Residential Facilities Against Abuse and Neglect” (Sundram 2012) confirmed a system in extreme disarray. Indeed, in 2010, there were approximately 8,400 reported allegations of abuse and neglect in OMRDD-funded programs; 44 percent were substantiated. This investigation was spearheaded by Clarence Sundram who, in 1975, served as Assistant Counsel to Governor Hugh Carey and was tasked to create the Commission on Quality of Care which oversaw community-based programs in the wake of Willowbrook.

To address the findings that OMRDD had insufficient training standards and unreliable reporting systems, Sundram’s report suggested four areas for improvement in the current system:

1. A strong, well-trained, and committed direct support staff.

2. Clear and intelligible standards of expected conduct.

3. Simple and reliable incident reporting systems.

4. Effective implementation of preventive, corrective, and disciplinary actions.

In response, the newly renamed Office for People with Developmental Disabilities (OPWDD) reorganized and launched a number of initiatives to improve caregiving and increase system oversight (Burke and Cuomo 2012).

First, OPWDD restructured professional development for agency staff members, adopting the National Alliance for Direct Support Professionals’ Code of Ethics and developing a set of “core competencies” required for all direct support providers. These competencies emphasized the need to “put people first” by supporting health, safety, and community involvement for “consumers” of OPWDD services. Critically, the competencies frame personal choice on the part of consumers as a condition of ethical caregiving: “The culture in which supports are provided for people with I/DD has evolved to become increasingly person-centered with a strong emphasis on personal choice. In addition, a greater emphasis has been placed on ethical practice and a high level of competence when providing support” (Office for People with Developmental Disabilities n.d.).

To improve oversight of voluntary agencies, OPWDD consolidated their 13 existing service offices to 5 regional offices and restructured their funding model, switching to a managed care model that would streamline access to services, improve care coordination, and standardize rates through a “fee-for-service delivery system.” The investigation also provided the impetus to create the New York State Justice Center for the Protection of People with Special Needs (hereafter, the Justice Center), a new law enforcement agency tasked with investigating allegations of abuse and neglect against people with disabilities and elderly people who receive any state-funded services (Cuomo and Wise 2013; Bailly 2020). In the first ten years, annual reports to the Justice Center more than doubled, reaching 86,700 reports in 2022. Of these, 3,282 were substantiated; 65 percent of those substantiated cases concerned people served by OPWDD. Today, more than 1,000 people have been barred from working with vulnerable populations as a result of the Justice Center’s investigations (NYS Justice Center for the Protection of People with Special Needs 2023).

At the same time that it was restructuring, OPWDD grappled with criticism regarding its lengthy waiting list for residential services (Office for People with Developmental Disabilities 2016). In a 2016 state-wide review, the more than 11,000 people on the Residential Request List faced an average 7-year wait for a placement. A majority of those on the list were young adults (ages 21–35) with low to moderate support needs; over 90 percent expressed interest in learning about residential options other than those with 24/7 staffing.

Process of Research

This paper draws on 18 months of ethnographic observation at an independent living program for adults with intellectual and developmental disabilities. I call the program Moving Toward Independence in Community (MTIC). At the time of my research, MTIC supported around 60 adults (all over the age of 21) with mild to moderate intellectual disability and low daily support needs. During my observations I took detailed field notes by hand which I later transcribed into a long-form narrative. This paper also draws on interviews I conducted with 35 parents and siblings of program participants. These interviews ranged from 1–2 hours and were mostly conducted in person. Interviews were transcribed by an outside transcription service. In this paper, I have returned to specific questions related to how parents found the program and why they chose it over other alternatives.

MTIC is a non-residential program meaning that participants live in their own, market-rate apartments spread across several buildings in the central part of a small city. The program provides “push-in” services—periodic visits from social workers and direct support workers who provide training in the activities of daily living—and optional monthly programming including internships, support groups, and informal social events. Each participant at MTIC is assigned a dedicated social worker or mental health counselor (a “program specialist”) with whom they meet weekly to coordinate their care. They are also assigned a Medicaid Service Coordinator (MSC) who applies for and manages their public benefits (SSI/SSDI, Medicaid, SNAP benefits, energy reimbursements, job support funding, accessible transportation, etc.). Most participants also receive at least four hours of direct support through community habilitation (ComHab) which teaches independent living skills like cooking, cleaning, socialization, self-care, and travel.

When it comes to funding, MTIC is a bit of a hybrid. The program itself is private-pay, and families pay an annual fee to MTIC to access a program specialist, a 24-hour emergency phone line, and the various internships and social activities on offer. At the time of my observations, the program fee was $10–15,000 per year. About half of the participants had disabilities that qualified them for Medicaid and services through the OPWDD, which reimbursed MTIC for ComHab, MSC, and job support services through HCBS waivers. Participants who weren’t “OPWDD eligible” paid $35/hour for ComHab, MSC, and sometimes job support. With the exception of a few, including one with a trust fund from a medical malpractice lawsuit, most participants were from upper-middle to upper-class families. At the time of my research, all but one MTIC participant was white and 60 percent were male.

Because MTIC is a private-pay program and not certified by OPWDD, it operates with a wide degree of latitude in the type of support the program offers to participants and in how they negotiate boundaries with parents. Additionally, because most families are wealthy, MTIC staff and parents can leverage financial resources to induce compliance in therapeutic activities in ways that are very similar to the wealthy families in Gong’s research (Gong 2024). At the same time, the fact that half of the program participants are “OPWDD eligible” means that staff are subject to Medicaid’s strict reimbursement rules which dictate the content of ComHab goals and the methods they use to train participants to be independent. Like Gong’s public sector workers, staff at MTIC continually reflect on their inability to “force” compliance in ComHab goals aimed at making participants “as independent as possible.” MTIC’s hybrid approach meant that staff in my observations often enlisted parental support in cultivating independence at the same time that they defended participants from undue influence that “forced” their compliance with goals or otherwise “sabotaged” them by disrupting their personal motivation to pursue autonomy.

The paper engages with a key puzzle that emerged early in my observation: how staff decided when it was appropriate to intervene in a participant’s daily life. Very quickly, and very often, I heard staff accuse parents of “sabotaging” their children. Initially it seemed like staff used this word to describe instances when parents did work staff felt fell more properly into their own domain. In other words, it seemed like staff just wanted parents to stay out of the day-to-day lives of their children. As I got to know the program and learned more about participants’ relationships with their parents however, I realized this wasn’t the case. Some parents intervened a lot and yet were held up as models of how to avoid sabotage. Confused, I set aside my attempts to understand and developed an analytic code called “sabotage.” Staff didn’t always use that language to describe their frustration, so this code denoted any instance when staff were frustrated with how someone intervened in a participant’s life. Most of the time, their frustration was with parents but sometimes staff blamed participants for “self-sabotage.” Rarer were the instances when staff reflected aloud to me about how their own interventions verged on sabotage.²

The interactional dynamics I describe here don’t meet a true definition of sabotage as we would normally understand it. That is, they do not constitute deliberate acts of destruction, damage, or obstruction. But I think that the fact staff choose the word to describe their conflicts with parents is illustrative of the moral dilemma or inherent contradiction of “supporting autonomy.” As I will show, supporting autonomy and propelling a person to maximize their independence is a moral and political project in which parents, staff, and participants have unique motivations and goals. And while both staff and parents deliberately intervene in participants’ daily lives, their interventions are interpreted differently depending on how well they align with the logics of the welfare state, which prioritizes incremental progress toward long-range, open-ended independence.

Parents

In interviews, parents were acutely aware of the historical legacy of institutions in New York where they raised their children, many of whom were born in the late 1980s and early 1990s in the literal shadow of Willowbrook. When they described their motivations for choosing MTIC, parents echoed its haunting environment in their descriptions of apocryphal programs that left clients “sitting in a chair, staring at the wall all day” with no meaningful activity in their daily lives. When their children turned 21 and aged out of public school, these families were confronted with yet another series of scandals in state-run group homes alongside a chronic shortage of residential programs.

Reflecting on how they designed MTIC, the founding parents repeated, almost verbatim, the same thing: they wanted a location that was affordable, walkable, small enough that participants could settle in the surrounding community, but large enough to provide adequate employment opportunities in the community for all participants. Their hope was that their children would form meaningful relationships with other participants in the program and that staff would provide participants with the kind of social-emotional support parents would. What is more, they wanted financially sustainable housing. Indeed, many of the founding families had purchased apartments for their children to ensure their residential security. In short, parents wanted a program that could survive them both socially and financially so that their children would be shielded from the fate of many IDD people who outlive their parents and find themselves placed in inappropriately restrictive residential facilities (Taggart et al. 2012; Mahon et al. 2019; Anderson-Kittow et al. 2024).

When I asked parents who joined the program more recently why they chose MTIC over other options, most told me that they didn’t do a whole lot of searching. The other available options were too restrictive for their children who, like those on the residential request waitlist, had low to moderate support needs and were capable of living without 24-hour supervision. Faced with a long tenure on this waitlist, families used their considerable wealth to bypass the state by enrolling their children in MTIC. Perhaps more pressingly, parents were concerned about recently documented abuse in state-run group homes.³

As I considered parents’ wishes and worries, interventions like those that opened this article took on new meaning. Contrary to staff members’ perception that parents are “sabotaging” their child’s independence when they intervene, it is perhaps more appropriate to see their behavior as a response to anxiety about a system they perceive to be a threat to their child’s wellbeing. For these parents, developing their child’s concrete independence in the here and now, by ensuring they can keep up with the concrete tasks of daily living (cooking, cleaning, shopping, personal hygiene, etc), provides a sort of insurance they hope will keep their children out of nightmarish group homes. What is more, parents are acutely aware of the immense effort it has taken to get their child to their current state of independence, and they fear a future in which their child lacks strong advocates like themselves. Developing independence, in this view, also enables participants to advocate for themselves in the event they need more restrictive care in the future.

But that intimate knowledge of the work it took to develop their child’s independence so far made it difficult for parents to develop a clear vision of their child’s open-ended independence in the future. Near the end of my interviews, I asked parents whether they could remember a point when their expectations for their child’s adult life changed. I expected parents to tell me that their children were more dependent than they hoped. To my surprise, however, parents gleefully shared that their children had surpassed their expectations. One told me of their son, “We never had a lot of goals for him. We didn’t know what he was going to be capable of. We didn’t know whether he was going to be able to work or not. We didn’t know whether he was going to be able to live independently. We didn’t have any goals that we had to change because we never had any goals. [We were just kind of] going with it.”

Part of the reason parents have difficulty seeing the future is that, as I said above, their attention is focused on the present, the specific problem at hand and the response that will move their child closer to independence. As one parent said,

I would say that when one is dealing with raising or supporting a special needs adult person, at times, you have to take one step at a time. You cannot look at the whole picture, because you get overwhelmed. It’s naturally going to change, because you’re taking one step and you are dealing with it, and then you are going to go to the next step…. The thing is, what you’re doing next, you wouldn’t have done two years ago, because it would have been premature and you wouldn’t have been ready for it. So, I think it’s having some sensitivity and understanding of what makes sense to go for next.

For parents, the future is part of a “big picture” that they simply don’t have room for in their day-to-day lives. In their experience, planning is difficult because the future is unstable. Even parents with a more optimistic point of view tempered their expectations with this “reality.”

Our expectation is always Brendan can do more. Then some days, I think we are out of our minds… but we just keep trying. So, the expectation was he was going to do this MTIC program and he was going to find employment, and maybe try school again, but that employment piece is really difficult. And because he loves to write, I actually want him to just go back to community college…. My expectation is not that he earns a bachelor’s degree, probably not even an associate’s, but you can continue to learn. Everybody can continue to learn.

As Brendan’s parents concluded their thoughts on my question, they reframed their initial answer by distinguishing between “hope” and “expectations.” While they were optimistic and confessed that they had “hope” that their child would find full-time employment, finish college, and find a romantic partner, they didn’t have a clear vision for the way forward. Their “expectation” was simply that he “keep doing more.” This perspective illustrates how, for parents, making participants “as independent as possible” had an immediacy and a nearness that, as we will see, wasn’t shared for staff. Parents’ primary concern was that their children develop concrete skills that will enable their child to live independently of their parents and siblings, reflecting broader interest in the Western ideals of independence. Their interest in increasing independence was also practical, in that establishing an independent life now would provide continuity in their child’s life after their parents died, a common concern for parents of children with IDD (Anderson-Kittow et al. 2024). At the same time, parents’ interest in developing their child’s independence was bounded by their concern for safety. Making their children “as independent as possible” provided the skills they needed to stay out of the group home and equipped them to face the risks they might encounter in the community. Together, these motivations meant that parents were sometimes willing to intervene in the short-term when they felt failure might jeopardize their child’s ability to safely practice independence. But intervening in the short-term by, for example, cooking, cleaning, or supplementing their child’s budget, forestalled staff’s efforts to develop these capacities in participants.

Staff

Staff shared many ethical goals with parents, especially to sustain participants in the least restrictive environment and avoid “warehousing” them without meaningful relationships or daily activity. What differed was their approach to making participants “as independent as possible.” First and foremost, while parents were often concerned with safety, MTIC staff were far more concerned with being seen as too restrictive. While I was at MTIC, the program’s director repeatedly referenced the goal of limited restriction, insisting that adult participants had the right to “walk down main street drunk, at midnight” and to avoid, as in the days of yore, being left “sitting in a chair, staring at the wall all day.” Though I suspect staff would, in fact, be concerned if participants actually got drunk at midnight on Main Street, the image emphasizes the meaning staff give to autonomy: MTIC staff believe that to foster autonomy, caregivers should stay out of the way and allow adults to make their own decisions, however reckless. And, as in the vignette that opened this chapter, when parents insisted that staff intervene, they were reminded, “We aren’t in the business of pushing,” and “We can remind, we can suggest, but we can’t do anything else.” In staff’s understanding, being overly concerned with safety places unnecessary limits on independence.

This reluctance to restrict a participant’s independence through direct intervention stems directly from OPWDD’s restructuring in 2012 and its subsequent adoption of “core competencies” for direct support professionals. These competency goals dictate that staff should support individuals to be involved in the community, make independent decisions, and decrease their dependence on staff over time (OPWDD training materials⁴). Drawing on these guidelines, staff explained and sorted their interventions according to a strict dichotomy between support and care, reminiscent of the ritual separation of the sacred and profane (Durkheim 1912; Douglas 1966). Support, to them, is hands-off intervention driven by the desires of the individual and characterized by a professional disinterest in the outcome of action. Care, on the other hand, is a natural extension of direct parental intervention in which the caregiver is intimately invested in the outcome of action (Munson 2020). Staff aim to avoid coercion and facilitate growth, direct responses to the legacy of inadequate care and abuse in the system and their fear that coercion or restriction could be reported to the newly formed Justice Center.

Another key difference between staff and parents is the purpose to which they believe independence will be put. While parents are interested in increasing their child’s autonomy to protect them, staff promote independence, in part, to advance the goals of the neoliberal welfare state, in which the goal of time-limited support is to develop a person’s capacity for independence so they are less “burdensome” to society (Christman 1998; Roulstone 2015). MTIC isn’t overseen or funded directly by OPWDD, but about half of the program’s participants use Medicaid and HCBS waiver funding to pay for portions of the program. To remain in good standing as a recipient of Medicaid reimbursement, MTIC must document ongoing progress toward specific independent living goals in order to prove that their interventions “work” and receive payment through Medicaid’s fee-for-service payment model (Medicaid and CHIP Payment and Access Commission 2025).

As they balance these demands—prohibitions against care and coercion, the need to document progress—staff prioritize choice and take a long-range view of independence in the interest of protecting the future, possible autonomies of participants. As described above, one reason parents might have difficulty imagining the future is that they have biographical knowledge about their child that colors their perception of their child’s capacity (Goffman 1963). And so, one way staff preserve the future is by actively limiting their knowledge of a participant’s past.

One of the standard intake procedures is for Janice, the assistant director, to conduct a clinical “social history” interview with new adult participants and their primary caregiver. The interview takes about an hour and a half and aims to collect a wide range of biographical and diagnostic information including complications in childbirth (i.e., low heart rate, C-sections, Apgar scores, etc.), childhood developmental concerns, medical and psychiatric diagnoses, and work and education history, then to discuss the participant’s current level of independence in daily living. This information is corroborated by medical and caregiving records submitted to the program as part of the intake procedure. The final report concludes with a “summary and recommendation” that assesses the participant’s capacity for independent living and readiness for training: “Kat is a pleasant outgoing young woman who has worked toward her independence. She is still in need of support in some areas of daily living but appears to be eager to learn. She is excited to be on her own, and it is believed she will thrive when she is expected to take responsibility for her actions and is allowed to take some risks.”

The resulting, type-written social histories are stored in MTIC’s main office in binders along with documents related to Medicaid, SSI, and other public benefits, ComHab plans, visit notes from social workers, and any other documents relevant to the support participants receive at MTIC. The binders, and the importance of keeping them up to date, were a constant conversation at MTIC, in part because they could be audited by Medicaid officials at any time. Halfway through my fieldwork I was given access to the binders to get a sense for the record-keeping practices at MTIC. I found the social histories particularly fascinating and asked several staff members if they had ever read them. To my surprise, while they were constantly updating the binders, most said no, they didn’t read the social histories, preferring instead to get to know participants without any preconceptions. When they did consult the binders, it was usually in retrospect, if they encountered specific difficulty working with a participant.

By approaching caregiving blind and ignoring the past, staff conceive the project to make participants “as independent as possible” as an extended one in which participants retain the ability to make choices in their daily lives and make measured progress toward long-range goals. Unlike parents, staff aren’t overly concerned about generalized independence; for them, success is defined by Medicaid’s reimbursement system as small, gradual improvement over time. And while parents had a strong sense that independence should be tempered by a concern for safety, staff felt that very little should limit efforts to make participants “as independent as possible,” including parents whose efforts to intervene in the name of safety forestalled the greater project of imagining an expansive, open-ended independence. In this project failure is expected, and even welcomed. In one case, staff wondered if Willa’s parents cleaned for her to cover her continued difficulties and make her seem like a better fit for independent living. But, as one staff member suggested, their efforts limited staff’s efforts to teach her to clean, “They need to hear that it’s okay if she is floundering.”

Independence as a Province of Meaning

As I detailed above, Schutz imagined five ways in which provinces of meaning differ. I return to these characteristics now to explore the contrasting meanings of independence assigned by parents and staff.

1. The “tension of consciousness”: Parents may not “dream” or “hope” about their child’s independence, but while they find it difficult to imagine the future, parents have “expectations” about independence that are rooted in the everyday. These reflect the parents’ general orientation to the present or very near future. Staff, on the other hand, continually work with and for participants to cultivate “dreams” about an expansive independence. According to the core competencies defined by OPWDD, this expansive independence is the “driving force” behind concrete goals that structure MTIC’s day-to-day work to increase a participant’s independence.

2. Spontaneity of action and the implementation of meaningful projects: Interactions between staff and participants are heavily defined by Medicaid’s fee-for-service funding structure which reimburses those habilitation services that are clearly linked to well-defined goals (i.e., the future). As a result, their conceptualization of independence is heavily structured and rarely spontaneous. Parents, because they don’t “dream,” experience their efforts to encourage independence as a more spontaneous response to things their child does. This is evidenced both by their happy surprise when their children make progress toward independence and by their knee-jerk reactions to risk and failed independence.

3. Elements taken for granted: Parents question their child’s autonomy in ways staff don’t. First and foremost, this is because parents have a hard time envisioning their child’s independent future. They also have insider knowledge of the work they do behind the scenes to support their child’s independence, including the vast financial resources they contribute toward the effort. In contrast, staff don’t question a participant’s autonomy, or at least their ability to get there in the future. Partially, this is because staff screen participants, heavily accepting only those likely to be successful. Staff also know that participants are set up to succeed by their family’s wealth, which frees them of the need to accomplish independence all at once to meet pressing financial need. Participants have the means to work slowly toward increasing their independence. This means wealth makes it possible to see the project of independence as expansive, especially in so far as it means living independently over waiting on residential services provided by the state.

4. Experience of the self: Staff and parents engage different parts of themselves in the project to produce autonomy. Parents are, perhaps, more tied up in the project because their child’s independence is a direct reflection on their identity as parents (Blum 2007; Francis 2012, 2013; Sousa 2015). Parenting a child with a disability can be all-encompassing, and stepping away from the extreme demands of caregiving can prove difficult under the best of circumstances (Reed et al. 2016; Baglieri 2019; Cui et al. 2019; Cook 2020; Tabatabai 2020; Hwang and Jung 2022). Staff, on the other hand, have professional boundaries that allow them to bring less of their personal selves to the project. Their role in making participants “as independent as possible” is limited to a traditional work week, and staff don’t devote personal financial resources to their shared project. As much as possible, staff also work to limit the emotional resources they devote to the project by limiting the personal information they share at work and periodically trading their responsibility for participants, especially when it becomes evident that a staff member “cares too much” about the outcome of a specific person’s independence. As representatives of the program, individual staff can also deflect some of their failure to produce independence onto the organization or even the strictures of the welfare state, which limit the efficacy of their work.

5. Temporality: Parents have a more acute sense of the timeline to general independence than staff. For them, the project is a relatively short-range one meant to settle their child’s independence before they retire (for financial reasons) and especially before they die. A parental push for immediate independence likely reflects anxiety about the future, what will happen to their children if they don’t establish an independent life or if they fail to accomplish some of the tasks of daily living. Staff, who perceive MTIC to be a “lifetime program,” are able to take a longer view. They view independence as an incremental project to gain mastery over the activities of daily life (i.e. cooking, cleaning, caring for the self) and are less concerned with whether there are gaps in a participant’s general capacity for independence in the present. MTIC is meant to adapt to a participant’s increasing autonomy, backing off or stepping in as needed across the participant’s lifespan. What is more, MTIC, and the agencies that oversee it, can provide ongoing support for participants whose autonomy projects “outlive” any one staff member’s tenure at the program.

In Schutz’s original conceptualization, he argued that people must operate in a shared province of meaning in order to achieve intersubjectivity, an understanding of the other person as someone like us. Tavory (2009, 2018, 2023) challenges this assumption by arguing that people always operate in at least two different time horizons because intersubjectivity requires people to project the future in order to plan their actions in the present. A major question that remains for research on intersubjectivity then is how people manage to achieve it when they imbue interaction with different meanings. To this end, I explore how staff and parents navigate contradictions in the meanings they give to independence. Through this analysis, I illustrate how staff and parents “learn to experience” participants as adults.

Being Uninvolved

One month after Kat moved into MTIC, her father began pushing staff to cut back on her ComHab hours. When she joined the program, Kat hadn’t yet established her eligibility for Medicaid and there was some concern that she might not qualify because her IQ was too high. In the meantime, Kat’s father was paying out of pocket for six hours of ComHab every week (billed at $39 an hour). Kat’s father explained to staff that he felt she depended too much on ComHab, even for skills she already had. Gloria, the program director, guessed instead that paying for ComHab was a financial burden; she noted that the father was also pressing staff to work with Kat to find a job soon. He asked staff to reduce Kat’s ComHab hours from 6 a week (already a very low number for a new participant) to 4.

When Gloria brought this up for discussion at the weekly staff meeting, Kat’s social worker was shocked: “She doesn’t know how to cook at all! And last week she took out $500 in cash from her bank account instead of $50.” With wide eyes and a sigh, Gloria agreed, “I told him, it has only been one month.” As if tired of repeating it, Gloria then parodied a conversation with parents, “I always remind them, ‘It has only been one month. And what is your job for the first year? To get integrated in MTIC.’ [I ask them] ‘Do you remember when we talked about this?’ ‘Oh yeah, I sort of remember.’” Gloria shook her head.

Together, the staff agreed that Kat must keep six hours a week for at least another month. They promised to revisit the question once they had a better sense of Kat’s capabilities. From her father’s perspective, working with ComHab for a full 6 hours a week decreased Kat’s independence for the simple reason that she relied on them to complete tasks she could do on her own. Staff however were concerned that pulling back on support too early would jeopardize the future by limiting their ability to design appropriate goals and interventions to make Kat “as independent as possible,” even if it meant increased dependence in the present.

In another instance, staff accused parents of sabotage when they failed to complete their portion of a caregiving arrangement. When I visited Justin’s apartment with MTIC staff member Elizabeth, they started by going over his budget, the primary concern being that he may have too much money in his account. Justin engaged in binge eating, so to curtail his spending on food, he had an arrangement with his mother, who tightly controlled his access to money. Justin retrieved his paper account ledger and pulled up his account information on his phone. After some brief calculations, he and Elizabeth determined that he had $200—too much. “How much money do you think you need for this weekend? Are you going to dinner with your friends on Friday?” Justin shrugged, “I haven’t heard from Mom yet.” Elizabeth quashed Justin’s impulse: “We want to hear from you. You can talk to your mom yourself and say you have too much money.”

Justin’s mother regularly transferred the money he earned from his full-time job into a separate savings account he could not access. But, according to Elizabeth, she was inconsistent and waited for a prompt from Justin or MTIC staff members to transfer the money. While Elizabeth and other paid caregivers worked with Justin to curb his impulses in other ways—through cognitive behavioral therapy and finding “healthy alternatives” at his favorite take-out restaurants—his mother’s preference that Justin take initiative to remind her about the transfer was, according to Elizabeth, premature and undermined the long-term goal of helping Justin to manage his diet and avoid binge eating, something he desperately didn’t want to continue.

These examples illustrate the deeply collaborative nature of autonomy and the ways in which parents and staff disagree about how to encourage independence. In both cases, parents who are distant or eager to pull back on the amount of support provided to their child “sabotage” their child’s autonomy. Kat’s father hopes that scaling back on her ComHab hours will force Kat’s independence. And the reality is that she might be more independent in the moment without ComHab. But pulling back interferes with Kat’s larger project to become “as independent as possible” in the way staff define it. Similarly, Justin’s mother interferes with his immediate independence, albeit with his permission, by curtailing his access to money. When she fails to do so, she contradicts the long-range independence staff hope to cultivate, in which Justin avoids binge-eating and manages his prediabetes.

Such instances complicate the idea that being independent means being left alone, as our commonsense understanding of autonomy might suggest. The efforts of parents to encourage independence conflict with staff’s vision when they interfere but also when they pull back from caregiving, illustrating the complicated ways that the staff must work to cultivate long-range independence. According to their logic, it is sometimes necessary to be dependent in the short-term to enable the larger project of autonomy (Altomonte and Munson 2021).

Reconciling Autonomies

Reconciling autonomies requires a good deal of strategic coordination, as I saw in the program’s approach to money. Budgets were treated with an air of moral superiority that surprised me when I first started observing the program. I knew that a majority of families were wealthy and that many participants likely had enough money in trusts or savings accounts to sustain them long after their parents died. But even when families had enough money to top up accounts on an as-needed basis, parents were chided for interfering financially and “sabotaging” their child’s independence.

Budgeting was introduced by staff to participants as an unequivocally “good” thing for adults to do. What is more, budgets were regarded as one of the most effective ways to control a wide spectrum of “inappropriate behavior” beyond spending money. These observations left me confused. Certainly, overspending is an issue when it means that participants run out of money at the end of the month or accrue unwieldy credit card debt. But if money isn’t scarce, what difference does it make how much a participant spends and what they spend it on? Further, if parents are the ones supplying the money their child needs to live, who cares whether they put all the bills in their names and give their children free rein with a credit card?

Yet conversations about money were the first and most common place that I noticed staff talk about “sabotage.” I believe it took such central place in staff discussion because money exemplifies the tensions between the multiple meanings of independence and the intricacies of coordinating parent-staff support to reconcile conflict.

Few participants at MTIC earn enough money through paid employment to cover their monthly expenses, so most rely on their parents to supplement their incomes. But, for parents and staff, providing money to participants is practically and morally fraught. Parents, approaching retirement, are figuring out how to support their child without exhausting their savings. In conversations with staff, they are interested in giving money without undermining their child’s desire to find paid employment and work on the skills that will help them obtain it. What is more, most families rely on public benefits like Medicaid, Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), SNAP, and reduced-price public transit to alleviate the financial burden of supporting their child and to ensure that their child’s finances are sustained after their parents die. But these forms of public support are means-tested, meaning that participants have to prove both their disability and their financial need.⁵ This means that even participants with enough money to support themselves must have their finances tightly controlled by parents in order to avoid going above the legal income and asset limit for Medicaid and Social Security payments. Budgets solve all three problems at once: making parental support sustainable in the long-term, maintaining eligibility for public benefits, and motivating participants to pursue paid employment.

While parents exercised a high degree of control over money, they rarely paid directly for all their child’s expenses. When they did, the goal was usually to work toward participants taking greater responsibility for their daily expenses over time. At the strong suggestion of staff, most parents gave their child a set amount of money on a weekly or monthly basis. This was the case even for participants who earned money through paid employment. For them, regular earnings were deducted from their parent’s contributions or transferred into a savings account or supplemental needs trust that wouldn’t count toward their legal asset limit for Medicaid and other public benefits.

Many parents had set up an automatic monthly or weekly transfer, but it was also somewhat common for parents to make as-needed transfers of money to their children, especially when they hadn’t yet learned how to budget. One way these parents provided money to their children without “sabotaging” was by encouraging them to take responsibility for asking or reminding their parents to transfer money in or out of their accounts according to specific criteria, as we saw with Justin. In another example, while Willa didn’t have a set budget, she received a notification anytime her balance dipped below $200, at which point she was supposed to ask her stepmom to transfer money. While discussing this at a care planning meeting, Willa’s stepmom whispered to me proudly, “I also get the alert, but I wait a few days to let Willa tell me. And then I ask, ‘Do you have something to tell me?’” Other participants were meant to remind their parents for limited top-ups to cover specific expenses like rent and utilities. Putting the onus on participants to monitor their bank accounts transformed the act of parents giving their children money into one focused on developing their future autonomy: tracking their money flow and monitoring bank account balances. Many parents welcomed the opportunity to delegate their responsibility to monitor budgets and bank accounts, as they found it upsetting to see the regular ebb and flow of their child’s account. Indeed, staff regularly encouraged parents to stop micromanaging bank accounts, likely because they felt the anxiety parents felt about their child’s spending was what led them to “sabotage” by topping up their bank accounts—a practice staff felt was more detrimental to participants in the long run than forgetting to pay a bill or overdrafting a bank account.

Parents who provided more liberal access to money without “sabotaging” established strict criteria for impulse spending. Elise, for example, often made relatively small impulse purchases of $15–50 that added up during the week. A singer, she especially enjoyed purchasing music books at the small music shop in town. Alma, her mother, detailed this habit at Elise’s care planning meeting: “It’s not just a $15 gift card… it’s $20 or $50. It’s not just 1 music book, it’s 3.” Turning to Elise, she implored, “You can’t shop at [the local music store] because you can’t return anything. You should shop at Barnes and Noble. They will let you return things because they have more money to cover their losses.” While Elise’s impulse purchases certainly added up, I noted that Alma did not seem too concerned overall, adding that she, too, made small purchases throughout the week that were strictly in her budget. “But we have a rule. If it’s $25 or more, she has to call mom. But she never calls—I guess that’s why it’s impulsive.” Alma laughed. “We aren’t always going to say no. I think she thinks we are always going to say no.”

Elise had relatively easy access to money. Aside from her regular budget, she took $20 in cash out of her bank account each week for fun expenses. She was also allowed to make larger purchases with her parents’ credit card, as long as she didn’t spend more than $25. As a further protection against those instances when she really did spend too much, Alma expected Elise to limit her purchases to large box stores that allowed easy returns. To encourage Elise to save up for even larger expenses, Alma agreed to supplement the cost of a trip to Florida for Elise and her boyfriend if Elise saved enough for the plane tickets. In all, Alma provided Elise with a good deal of “extra” money, but staff didn’t really criticize her for it. In part, this was because there were specific parameters in place that allowed Alma to provide extra money without giving in to her anxiety about Elise’s past or present autonomy. She framed impulse purchases, within limits, as a normative part of adulthood, and she linked the extra money she provided to Elise’s future autonomy by tying it to her ability to learn to save.

Alma’s arrangement with Elise stood in stark contrast to Mona’s mother, who frequently topped up her daughter’s account even after setting a budget staff thought was far too high: $150 a week for “extra” expenses. “We’ll go over her bank statements,” a staff member said, “and her mother has deposited an additional $200 over the course of the week…. [B]ut Mona is a spender, and her mother gives her extra money when she wants it for things she hasn’t budgeted for.” A parent’s proclivity to “top off” their child’s bank accounts frequently left staff incredulous. After all, it was parents who determined the budget in the first place. But the main issue, what made these top-offs sabotage, was that the extra money was seen as disincentivizing participants from working on their autonomy. According to staff, Mona’s extra money contributed to her disinterest in becoming more independent, especially learning to cook, because she could just as easily eat out. The extra money also set Mona apart from other participants and jeopardized their independence because Mona would invite them to join her at restaurants, causing them to go over their own budgets. Her easy access to money also left Mona alone for most of the day while her friends worked or participated in job training. Most strikingly, staff even blamed money for Mona’s frequent emotional outbursts; they perceived her as spoiled and insisted that her mother enabled her by not holding her responsible in other areas of life. In short, excess money, and Mona’s lack of control, seeped into other areas of her life and limited her ability to pursue independence.

When I interviewed Mona’s mother, Beth, at her older daughter’s apartment, a beautiful, well-kept one-bedroom apartment, she grappled with the conflict between the support she provided to Mona and staff efforts to produce long-term independence. Throughout our interview, she recounted how happy she was that Mona was able to live alone, cultivate relationships, and make her own decisions day to day. But she also questioned the utility and value of ComHab,

I think Mona sees it as this person that’s going to make me do stuff I don’t want to do. And I think too, I mean in a perfect world, to clean an apartment [by yourself] is great, but I really think she probably needs a cleaning woman once a month… I mean, I hate to say it, but I have a cleaning woman once a week and that’s kind of how she was raised. So, it’s not realistic to me to make her be cleaning an entire apartment by herself and doing a great job. I mean I also feel like there are services available nowadays even with cooking where you can go out and buy ready-made food for half the price of shopping for a week and wasting a gallon of milk when you’re going to have three cups of it. So, I think that realistically in 2017, we could be updating some of those goals.

For Beth, the practical tasks of independence had very little moral value and staff’s insistence that Mona develop them further really didn’t make sense. For her, Mona’s independence was, by and large, settled by the fact that she lived in her own apartment. She wasn’t concerned that Mona find a job, learn to use public transit, or cut back on how much she ate out. And while Beth lamented how expensive it was to pay Mona’s rent, bills, and weekly allowance, she also considered her propensity to spend money on luxury goods to be normal. What is more, supplementing her practical autonomy with a maid, prepared meals, and a car service made sense because Beth didn’t expect that Mona could (or even should) develop her independence any further than she already had, motioning several times to her older daughter’s well-kept apartment to point out that even she supplemented her autonomy in these ways. But this was the central focus of staff’s frustration: providing all of these supports made it completely impossible for them to pursue the ambiguous, expansive, future independence they had in mind.

To staff, the best budgets support the bare bones of living and incentivize participants to learn work and social skills that will help them maintain paid employment. When discussing Allen who, like Mona, had easy access to his parents’ credit card, the program director stated emphatically, “[The budget] should decrease, he needs to feel pain…. When he has spent all his money, he just swipes his card. Why would he get a job?” She went on to compare Allen to Brendan, “It’s like his parents always say, ‘Brendan needs to feel uncomfortable.’” Brendan’s family was frequently used as a successful example of parents who avoided “sabotage” even as they were heavily involved in their child’s day-to-day life. Holding up Brendan’s parents as an ideal underscores the fact that sabotage is about how to frame intervention and independence, not some objective measure of parental involvement or participant independence. Brendan’s parents were some of the most heavily involved at the program. In fact, I was initially surprised when staff held them up as an example for other parents.

Brendan’s parents regularly reminded him to eat fruit and vegetables via text message, restocked his kitchen with groceries, kept careful tabs on his budget, drove him to doctors’ appointments, and even monitored his daily physical activity through a shared fitness watch account, reminding him to exercise when it appeared he hadn’t left his apartment. Still, to the satisfaction of staff, Brendan’s parents had developed a deeply ingrained sense that success meant measured progress over time, and they worked hard to ensure that their interventions did not affect Brendan’s motivation to work on his goals. In part, they did so by restricting his budget.

For staff, the proof of Brendan’s success was his remarkable ability to plan for the future and save money. At one care planning meeting, Kara, Brendan’s social worker, remarked how reliable he was with his budget. “He gets that from you,” she said, nodding her head toward Brendan’s father, Ari, a finance executive. Ari followed up, “Did you make those deposits?” Brendan nodded. Daphne, Brendan’s mom, weighed in asking, “How much do you have in your secret stash?” Alarmed that Brendan may be stashing money in his apartment, a risky habit staff typically discourage, Kara asked, “What’s this secret stash?” Daphne explained that Brendan used a tin to save cash for things not in his strict budget, an attempt at giving him some degree of privacy over his fun expenses: “Really, it’s just savings. I guess we shouldn’t call it his ‘secret stash,’ that’s just a little joke. How much do you have in there?” Brendan shared proudly that he had $500 in his stash. The rest of the room reacted with surprise. “You need to spend some money Brendan,” Kara suggested. Brendan shook his head, insisting that he planned to keep saving up: “I have plans for it. I just don’t have those skills yet.” To a roomful of approving nods, Brendan elaborated that he wanted to explore the digital arts and planned to use his money for classes and technology.

What do participants want?

So far, I have made it most of the way through this paper without addressing the meaning participants give to independence. In part, this is because my university’s IRB and MTIC’s ethics review board required that I observe participants in the context of program activities and in the presence of staff members. This made it difficult to disentangle the participants’ “genuine” interest in autonomy from what they absorbed from their caregivers. Still, I believe there are a few things we can glean from their embodied responses to my questions and staff intervention. From what I could see, participants equated independence with simply being left alone. And so, regardless of the methods parents and staff used to support them, both parties were unwanted intrusions on their daily lives.

When I first started fieldwork, I made a practice of asking participants what they liked about the program. Most gave a relatively pat answer: “that I can live independently.” When I asked what they meant by this, new participants enthusiastically added with hands raised in celebration, “I don’t have to listen to my parents anymore!” Participants who had been with the program longer, however, were more moderated and stoic in their responses. As if coached, they articulated a deep satisfaction at being able to find a job and care for themselves and their apartments. I often wondered what to make of this stark shift in the apparent meaning participants attached to independence over time.

A cynical explanation would attribute the change to the concerted efforts of staff to instill a neoliberal work ethic in participants. While new participants entered with an enviable enthusiasm for adulthood, they soon learned that this independence came with a price—namely, a commitment to “work the program” by identifying goals and performing “lifework” (Haney 2010; Levinson 2010; McKim 2014; Munson 2020). However, this “lifework” wasn’t always intrinsically valuable to participants, and staff often reminded participants that “part of being an adult is doing things you don’t want to do.” Over time, participants internalized the intrinsic value of work as Colton did when he grumbled, “I know work is important, but sometimes I wish someone would do it for me.”

However, the story is more complicated. On the one hand, participants seemed to buy into the program in many ways. They were often eager to share their daily accomplishments in independence with me: going on a trip alone, grocery shopping, working, spending the weekend with a boyfriend. I initially took these bragging sessions as a sign that they were trying to prove themselves to me in the same way that they proved themselves to staff. But after a while, I started to see participants sharing these accomplishments with one another when staff weren’t present.

On one occasion, I accompanied the program on a trip to New York City to see the Statue of Liberty. On the ferry ride, a group of participants were sitting in a circle on the floor passing their phones around. I stood with the staff members, who formed their own circle to the side, while listening over my shoulder to the participants showing each other photos of the meals they had prepared over the past week. Amused, I remarked to Cole, the lone male staff member, that I found it funny. He just shrugged his shoulders and whispered, “They’re proud of themselves,” before turning back to the staff conversation. In retrospect, I probably shouldn’t have been so surprised. My own Instagram grid at the time was full of my accomplishments: a bike ride in Central Park, some jeans I had sewn, and yes, a meal I had cooked for myself and my new husband. In the moment however, I suppose I expected participants to talk about something other than their goals with their peers.

The fact that participants were naturally proud of their daily independence even as they bristled at MTIC’s program to produce autonomy demonstrates the difficult situation they are in. Participants are stuck somewhere in the middle, between their parents’ interest in the immediate present and staff’s commitment to the future. They value present independence and in order to “earn” it, they adopt, sometimes reluctantly, a commitment to developing a more autonomous future. This seems, in many ways, to be coercive, but I don’t think it negates the fact that the tasks of daily life are also meaningful to participants for other reasons. Because, as my own social media feed shows, the reality is that we are all proving our adult identities to others. We are all constrained by the neoliberal expectations of constant improvement and self-sufficiency, which sometimes constrain choice. At MTIC it happens to be explicit.

The meaning participants give to independence echoes a tension that has long been elaborated by disability rights advocates. This group has long contested the professional understanding that equates independence with the ability of an individual to do something on their own, something akin to Altomonte and Munson’s practical autonomy. As an alternative, self-advocates interpret independence to mean that a person exercises control over who supports them and how they are cared for (Morris 1993). Put another way, independence means “Doing what I want, when I want, with the right support” (Northway 2015). Disability rights scholars highlight the importance of interdependence or relational autonomy as a hybrid goal that emphasizes how we all depend on others to do things for us (Reindal 1999; Korr, Encandela, and Brieland 2005; Ho 2008).

What happens at MTIC models this perspective in that it allows participants to be autonomous without practical independence. As we have seen, participants remain dependent on their parents and professional support staff and yet they are still considered successful adults. But the program doesn’t fully make space for participants’ interest in being left alone. In fact, successful autonomy requires them to submit their motivations and actions to staff scrutiny if they are to earn the right to be left alone. And while this might be a shared, universal experience, it is worth asking how MTIC and other disciplinary institutions could better account for the meaning given to independence by participants at the outset of their interventions rather than as a condition of successful transformation.

Discussion

All this in mind, how is it that parents, participants, and staff reconcile their competing autonomies? Part of the story is what we might expect: staff work to discipline parents to adopt their definition of autonomy as a future-oriented project in which independence is developed incrementally and over a long period of time. Brendan’s parents are held up as a success story for this reason. The fact that staff push parents to adopt their version of independence shows how power functions to dictate which meaning “wins out.” As Gloria said in the vignette that opened this article, “We can tell her what to do. Margo is paying us a lot of money to transition Harold to independent living. Driving him to a haircut is not helping us.” In the arrangement that has been set here, MTIC is in a strong position to dictate the terms of cooperation because they are gatekeepers of the services parents rely on to enact their version of independence, in which participants establish a generalized independence to keep them out of the group home and prevent them from becoming a burden on their siblings.

But disciplining parental independence isn’t just a matter of getting parents to change their minds about support, it is about convincing parents to offer their support in the right way. As we saw in the arrangements made around money, parents can provide a great deal of money to their children without being accused of “sabotage.” They must, however, do so under strict rules that preserve the separation between parental intervention and the moment of independent action (i.e., spending money) (Munson 2020). This coordination ensures that parental intervention is prior to and separate from the work that staff do to cultivate a gradual, long-term independence. In this way, parental interventions like paying bills, topping up bank accounts, and cleaning apartments are transformed into acts that are supplemental to the project to make participants “as independent as possible” according to the definitions of staff. In this way, staff’s definition of independence is what we call an “obligatory passage point” (Callon 1984; Latour 1988) through which parental interventions must pass before they can reach participants.

Again, parents and staff share a common goal: to make participants “as independent as possible.” This project was an ever-present source of conflict between parents and staff members at MTIC because parents and staff have vastly different ways of defining independence. The phrasing of the overarching goal is inherently ambiguous, implying both that independence is limitless and that there are boundaries around how independent a person can or should be. Developing their child’s independence is part of a parent’s larger project to settle their child in a financially secure adulthood where their capacity to live independently protects them against the dangers of restrictive settings like group homes. In this context, anxiety about failure causes parents to focus their attention on keeping their children safe and developing independence in the relatively near-term. Staff’s project, in contrast, is dictated by the strictures of Medicaid, which reimburses the program for incremental progress participants make toward an ambiguous future autonomy. For staff, the danger is that intervention will restrict a participant’s choice and so staff are willing to accept failed independence in the short term in order to facilitate long-term autonomy.

The differences in how staff and parents interpret independence emerge partially from how deinstitutionalization has shaped the current system of community-based care for people with intellectual and developmental disabilities. Parents, driven by anxiety about the past and future, press for immediate increased independence in the present. To ensure that their children are immediately successful in independent living, they are predisposed to interventions in their child’s daily life. Staff, instead, are professionalized to err on the side of freedom, in part to avoid accusations that they are restraining or coercing the adults in their care. They attune their work to the future because Medicaid reimburses the program for incremental progress participants make toward explicit habilitation goals (Munson 2020). Participants are caught somewhere in the middle. Like their parents, they value immediate independence as a signal of their newly won adult identities, but they learn to adopt the future-oriented strategies of staff in order to earn independence and prove their adult identities.

The ability to see dependence in the present as momentary requires actors to reframe their anxieties about the past and the future and temper their interference in the development of autonomy. In the case at hand, it should be noted that reframing anxiety about the past and future requires parents and participants to form their interests in independence around the perspective championed by staff. Staff’s concern for the future wins out because they are positioned as the “experts” on autonomy by the fact that there are few alternatives to the program which will promote the idealized independence parents and participants desire. So, while parents exercise substantial influence over their child’s independence by choosing and paying for MTIC, they end up arranging the support they offer so that it is offered prior to the therapeutic efforts of staff to produce independence. In effect, this means that staff claim authority to leverage the support parents provide to produce their version of independence, a dynamic that echoes Neil Gong’s concerted constraint (Gong 2019, 2024).

Together, the ways deinstitutionalization has shaped parent and staff approaches to caregiving and the fact that the neoliberal methods of producing autonomy imposed by Medicaid win out, illustrate the strength of what my coauthor Guillermina Altomonte and I call the institutional dimension of autonomy or “the social and organizational constraints” on how a person can perform autonomy and “to what extent lingering dependencies will be accounted for” or framed as momentary (2021:958). This paper showcases the constraints of institutional autonomy by showing how the neoliberal welfare state dictates a very specific interpretation of the requirement to make participants “as independent as possible” and a particular method for producing that autonomy. It also highlights another characteristic of institutional autonomy: that historical shifts in institutions live on in people’s memories and shape their approaches to independence and autonomy.

HCBS waivers were intended to facilitate broad independence and choice in independent living, yet they still constrain independence to a large degree because of how they reimburse programs for services and, ironically, in how they dictate ethical care. Participants can’t claim adult identities by simply asserting their right to not listen to their parents. They must also prove their adulthood through regular progress toward ever-increasing independence lest they lose access to financial support that enables them to live independently. These strictures mean that parents can’t just pay to support their child’s independence. They must submit their support for scrutiny and administer it according to a detailed division of labor that leaves control in the hands of staff.

In response to Tavory’s questions about intersubjectivity, this paper illustrates one way that competing provinces of meaning are worked out in practice. While parents, participants, and staff share the common goal of maximizing independence, how they approach autonomy as a collaborative project is profoundly shaped by the unique meanings they give to independence. Parents want independence as an insurance policy against the future: diminishing their child’s caregiving needs and ensuring they can advocate for themselves against abuse and neglect. Participants want independence for the same reasons anyone does: because it makes them feel proud and efficacious, like people in control of their own lives, and because independence (not having to listen to anyone else anymore) is the core marker of successful adulthood. The autonomies championed by parents and participants are achieved by making them subject to the meaning elaborated by staff because the options for independence elsewhere are limited. And while staff defend participants against parental intrusion, they do so only when it contradicts their own efforts to make participants as independent as possible. What results is a lopsided intersubjectivity that largely denies the ways in which participants themselves define independence and adulthood: being left alone.