The American Journal of Occupational Therapy 35

Women With Disabilities’ Experiences in Long-Term Care: A Case for Social Justice

KEY WORDS• disability• human rights• life change events• long-term care• social environment• social support• socioeconomic factors

Susan Magasi, PhD, is Research Scientist, CORE at NorthShore University HealthSystem, and Research Assistant Professor, Department of Physical Medicine and Rehabilitation, Feinberg School of Medicine, Northwestern University, 1001 University Place, Suite 100, Evanston, IL 60201; smagasi@northshore.org

Joy Hammel, PhD, OTR/L, FAOTA, is Associate Professor, Department of Occupational Therapy, University of Illinois at Chicago.

OBJECTIVE. The purpose of this study was to explore women with disabilities’ perceptions of their lived experiences in nursing homes.

METHOD. This 16-month ethnography used multiple qualitative methods, including participant observations, thematic qualitative interviews, and focus groups, to examine the perceptions of life in nursing home for 6 women with disabilities who had returned to community living and their significant others (n = 13).

RESULTS. Nursing homes were living situations of last resort for women with disabilities. Life in the nursing home was characterized by lost choice, control, and occupational engagement; social isolation; social control; the political economy of the nursing home; and active resistance.

DISCUSSION. Occupational therapy practitioners practicing from a social justice paradigm have a respon-sibility to ensure that client goals to live in the least restrictive environments possible are realized. Implications for long-term-care referral practices, advocacy-based interventions, and partnership with the disability com-munity are discussed.

Magasi, S., & Hammel, J. (2009). Women with disabilities’ experiences in long-term care: A case for social justice. American Journal of Occupational Therapy, 63, 35–45.

Susan Magasi and Joy Hammel

The Supreme Court ruled in Olmstead v. L.C. (1999) that it is a violation of Title II of the Americans With Disabilities Act (1990) for states to discriminate against

people with disabilities by providing services in institutions, including nursing homes, when the individual could be served more appropriately in a community-based set-ting. States have a legal obligation to develop programs to serve people with disabili-ties in the most integrated settings possible. In 2001, President George W. Bush announced the New Freedom Initiative (U.S. Department of Health and Human Services, 2003) and Executive Order No. 13217 (2001) to promote nationwide efforts to remove barriers to community living for people of all ages with disabilities. Although legal and legislative mandates codify people’s rights to live in the least restrictive environments possible, the National Council on Disability (NCD; 2003), the Deficit Reduction Act of 2005, and the Centers for Medicare and Medicaid Services (CMS; 2005) documented an institutional bias in long-term-care (LTC) funding nationwide (Shirk, 2006). Medicaid spends $2.48 on institutions for every LTC dollar it spends in the community. Only 4 states spend more on community-based LTC services than they do on institutions (Gold, 2007), and there is tremen-dous variability across states in Olmstead compliance, programming, and funding (Kitchener, Alameida, Wong, & Harrington, 2006). NCD, an independent federal agency, asserted in its 2003 report Olmstead: Reclaiming Institutionalized Lives that “ultimately, only comprehensive amendments to Title XIX of the Social Security Act, similar to the amendments proposed in MiCASSA [the Medicaid Community-based Attendant Services and Supports Act], will overcome the institutional bias within the Medicaid program” (p. 8). The Deficit Reduction Act of 2005 represents

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an effort to rebalance LTC funding to achieve a more equi-table balance between community-based and institutional LTC options. For many nursing home residents, the promise of such reforms has not yet been realized.

Disability rights activists have been at the forefront of demands for greater community living options for all people with disabilities. Community living is understood as a basic human right and as a necessary precursor to the full partici-pation of people with disabilities in all aspects of society. Most people, both with and without disabilities, voice strong personal biases against being placed in a nursing home (Flinders, 2003; Rossen & Knafl, 2003). Although the post-Olmstead era has seen a closing of state institutions for people with developmental disabilities and mental illness, more than 1.5 million people live in nursing homes in the United States (U.S. Government Accountability Office [GAO], 2007), 10% of whom, or approximately 150,000, are ages 60 or younger (National Nursing Home Survey, 2002). Some states have actually seen an increase in the number of people ages 60 or younger living in nursing homes. For example, Illinois has seen a 26.7% increase in the number of women ages 18–59 living in nursing homes (Illinois Center for Health Statistics, 2007). The institutional bias in LTC fund-ing denies many nursing home residents integral aspects of social justice, including freedom, control, and equity.

Social justice seeks to examine the unequal distribution of power within society and institutions that leads to the oppression and domination of social groups, such as people with disabilities (Young, 1990). The lack of equity in com-munity living options for people with disabilities is a social injustice. To fully appreciate nursing homes as a social justice issue, it is important to understand nursing home life.

There is a paucity of literature on the lived experience in U.S. nursing homes in the post-Olmstead era, especially among women ages 60 or younger. Disability scholars and qualitative researchers cite a need for first-person accounts of the disability experience that are deeply contextualized and analytically rigorous (Casper & Talley, 2005). The use of anthropological methods and analysis provides a mecha-nism for examining social systems and power structures that are fundamental components of social justice (Casper & Talley, 2005; Frank, Block, & Zemke, 2008). Such contex-tualized and co-constituted examinations of personal stories are referred to in qualitative research as the lived experience. Disability studies scholars and qualitative researchers have asserted the value of examining the voices of people who often are silenced in society, such as nursing home residents (Kasnitz, 2008). Most of the existing studies of the lived experience of nursing home residents predate the Olmstead decision and other quality improvement efforts in the nurs-ing home industry (Goffman, 1961; Gubrium, 1975, 1993).

Moreover, the vast majority of the nursing home literature and research is related to the geriatric population and more specifically older adults with dementia. Contemporary reports on nursing home life are contradictory and ambigu-ous. For example, the GAO (2007) reported that, although there has been a nationwide decrease in major deficiencies in U.S. nursing homes between 2000 and 2005, many nurs-ing homes continue to cycle in and out of compliance, caus-ing repeated harm to their residents. Although the GAO report provides information about the quality of nursing home care, it does not illuminate what life in a nursing home is actually like for middle-aged people with disabilities.

Foucault (1975/1995) described how social structures, such as prisons and schools, institutionalize power and impose discipline through multiple layers of surveillance to transform residents into “docile bodies” who can be con-trolled. Nursing homes use similar structures of power and organization to control their residents. For example, nursing home staff members’ time is characterized by “busyness” in the physical and routine care of residents; by contrast, 65% of residents’ time is spent in idle or passive activities, thereby reinforcing the social construction of nursing home resi-dents’ dependency, passivity, and, arguably, incompetence (Harper Ice, 2002). Nelson’s (2000) critical analysis of the asymmetrical power relationships within nursing homes fur-ther highlighted how the political economy of the industry can strip residents of choice and control over their living situ-ation and full control within it.

This article uses a social justice perspective to provide an in-depth exploration of the lived experiences of a group of women with disabilities who have transitioned out of public, Medicaid-sponsored nursing homes to least restric-tive community living.

MethodDesign

This 16-month ethnographic study explored the lived experi-ence and transition processes of women with disabilities who were moving out of nursing homes into the community. Contemporary ethnography was used to uncover and explore the interactions among human experiences, social construc-tions, and public policies (O’Day, McLean, & Killeen, 2002). Ethnographic methods “provide an opportunity to explore the disability experience as it is created at the intersection of embodiment, society, culture, and interpersonal relation-ships” (Casper & Talley, 2005, p. 119). Thick descriptions of the women’s experiences were obtained by means of par-ticipant observations, thematic interviews, focus groups, and significant other interviews (Bogdan & Bilken, 1982). Multiple methods are a hallmark of contemporary ethnogra-

The American Journal of Occupational Therapy 37

phy (Schensul & LeCompte, 1999; Spradley, 1979) because they increase the trustworthiness of findings by triangulating data from multiple sources (Denzin & Lincoln, 2000).

Sampling and Participant Descriptions

Using a theory-based, maximum variability sampling strat-egy based on social network type and race (Magasi, 2006), 6 women were purposively recruited from a larger federally funded study that was developing and evaluating a commu-nity-based social action program to promote transition out of nursing homes (Minkler et al., 2008). Inclusion criteria for the social action program study included ages 18–60 years; a history of physical, cognitive, sensory, or mental health impairments; and either currently living in a nursing home or having transitioned to community living in the past 12 months. Recruitment letters were sent to all women from this larger study who had transitioned out of nursing homes and were living in the community. There were no other requirements based on living situation or impairment cate-gories. Participants were screened for eligibility and com-pleted consents in accordance with Institutional Review Board procedures at the University of Illinois at Chicago. To ensure confidentiality, each woman selected her own pseudonym.

Significant Other Participants

To explore the community reintegration process from mul-tiple perspectives, interviews were also conducted with sig-nificant others. In Month 10 of the study, after trust and rapport were well established, participants were asked to invite 2 significant others to be interviewed. The women were afforded choice and control over who was interviewed and were provided with letters of invitation to share with their chosen significant others. Significant others were asked to contact Susan Magasi if they were interested in participat-ing in the study.

Data Collection

Susan Magasi, a registered occupational therapist and doc-toral candidate in disability studies at the time of data collec-tion, was responsible for all data collection activities through-out the 16-month study period; focus groups were co-facilitated by a second disability studies researcher. All data were collected between October 2003 and January 2005.

Participant Observations

Participant observations were conducted within and across a variety of contexts to provide detailed accounts of the wom-en’s lived experiences; each woman engaged in 45–72 hr of participant observation. The observations provided a window into how issues brought up during interviews and focus

groups emerged and were negotiated in real time, adding depth and trustworthiness to results (Lincoln & Guba, 1985). Data were recorded as written and audio field notes.

Thematic Qualitative Interviews

A series of three thematic qualitative interviews was com-pleted with each participant in Months 1, 8, and 15. The interviews took place in the women’s homes and focused on their experiences within the nursing home and the commu-nity transition process. Each interview had a similar structure and began with the women completing a social network map to provide a framework for understanding how the women mobilized their social networks to support their transitions to community living.

Focus Groups

A series of four iterative 90-min focus groups was conducted in Months 9, 10, 11, and 16 to explore how issues raised in interviews and participant observations resonated with and across the group as a whole. Focus Group 1 emphasized the process of negotiating the social welfare systems, Focus Group 2 emphasized the process of negotiating self and social indentities, Focus Group 3 emphasized negotiating relationships as well as the legacy of the nursing home, and Focus Group 4 was an opportunity to brainstorm program and policy recommendations and member check the find-ings to increase their trustworthiness and confirmability.

Significant Other Interviews

Significant others participated in one thematic qualitative interview to provide alternative perspectives on the com-munity reintegration process. The significant other inter-views emphasized social relationships and the individuals’ perceptions of the strengths and challenges that the women experienced during the community reintegration process. Significant other interviews were conducted in Months 11–16. All interviews and focus groups were audiotaped with the participants’ consent. All participants were compensated for their time and contribution to the research (Magasi, 2006).

Data Analysis

Interview and focus group data and field notes were tran-scribed and analyzed using a comparative case study approach (Merrian, 1991) to search for inter- and intraparticipant differences and patterns. Data were triangulated by searching for points of similarity and disjuncture across sources. Data analysis was iterative and ongoing throughout the research process and followed Miles and Hubermann’s (1994) model of three levels of coding. In accordance with this method, data analysis proceeded from a large number of descriptive

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codes to more conceptual interpretive codes, which grouped the descriptive codes into meaningful categories. These first and second levels of analyses were conducted by Susan Magasi. Based on this process of recursive analysis in the field, the legacy of the nursing home experience emerged as a major theme warranting in-depth analysis. The processes of descriptive and conceptual coding were repeated focusing specifically on the legacy of the nursing home to identify subthemes and embedded concepts. Finally, a level of pat-tern coding, which is explanatory and inferential, was con-ducted to explain the relationships between concepts. A final level of analysis, which is outside of Miles and Hubermann’s (1994) framework, was conducted by a team of 5 women with disabilities and disability studies scholars with qualita-tive research experience, focusing on triangulation and syn-thesis. This final level of analysis increased the trustworthi-ness of the findings by providing a mechanism to check the researcher’s biases and examine alternate interpretations of the data by integrating peer and professional perspectives (Kasnitz, 2008). The intent of the final level of analysis was not reconciliation but deeper understanding of lived experi-ences of women with disabilities who had moved out of nursing homes.

ResultsRecruitment letters were mailed to the 18 women from the social action program study who had returned to community living. Six women met the inclusion criteria and agreed to participate. One woman expressed interest but was unable to make the time commitment, 4 women called to formally decline, 4 letters were returned as undeliverable, and no response was received from another 3 women. The partici-pants ranged in age from 38 to 59 years, with an average

length of nursing home placement before discharge of 29.5 months (range = 3 months–5 years). The average time since discharge was 6.3 months (range = 1–11 months). See Table 1 for participant demographics. All of the participants lived in different Medicaid-funded nursing homes in the Chicago area in the post-Olmstead era. All received federal income assistance as their primary income, ranging from $481 to $726 (average: $580/month). They completed all the study activities, except for Foxie, who was lost to follow-up 1 month before her final interview.

A total of 13 significant others agreed to participate; 4 declined. Significant others completed consents. They ranged in age from 38 to 69 years. The relationships to the partici-pants included 1 parent, 1 spouse, 4 siblings, 2 neighbors, and 5 friends. There were 9 women and 4 men; 4 were African American, and 9 were White. Table 1 indicates the significant other demographics and relationships to the women.

The legacy of the nursing home and social justice issues related to life in Medicaid-funded nursing home emerged as defining influences in the women lives. Five main themes were identified: (1) the lived experience of the nursing home—choice, control, and occupational engagement; (2) social support, networking, and their influence on nursing home transitions; (3) social control and surveillance; (4) the political economy of nursing homes; and (5) strategies of resistance. Each theme is detailed in the following sections.

Lived Experience of the Nursing Home—Choice, Control, and Occupational Engagement

Nursing Home as Process: Getting in and Life in. The par-ticipants described the decision to enter a nursing home as being forced on them and influenced by the interaction of impairment and health with social and economic factors

Table 1. Participant Characteristics

PseudonymAge

(years) Race Marital Status Diagnosis and Disability Significant Others

Alexis 56 White Single Mental illness, multiple sclerosis, cognitive impairments, degenerative joint diseaseWheelchair user

Neighbor—femaleNeighbor—female

Elizabeth 52 White Divorced Fibromyalgia, major depressionUses a cane

Sister

Foxie 49 Black Single Mobility impairments secondary to orthopedic concerns, bipolar diseaseUses a cane

Roommate—maleRoommate—female

Gloria 48 Black Single Mobility impairments and chronic pain of unknown origins; history of alcoholism and depression

Uses a cane

SisterSister

JoJoe 38 Black Married Left hemiparesis and cognitive impairment secondary to stroke; history of substance abuse

Wheelchair user

HusbandMother

Maxine 59 White Single Mobility impairments and chronic pain secondary to spinal infectionUses a walker

Friend—maleFriend—maleFriend—femaleBrother

The American Journal of Occupational Therapy 39

such as isolation, poverty, a lack of affordable and accessible housing, and loss of control. Alexis described how the threat of ongoing homelessness led her to the nursing home:

I was all on my own, totally alone, not a friend in the world. No relatives, no nothing . . . . Then the day of my discharge, I was [going to be] discharged to the streets. There was no place to go . . . . I had to go in the nursing home or something because I couldn’t live on the street. (Interview 1)

Maxine described how a lack of choice coupled with her family’s efforts to control a lifestyle that they did not approve of led her to a nursing home far from her social network. “My sister put me out there to do exactly what happened, so that I would have not one friend I ever had before. Not one. . . . . She did it” (Interview 3). Elizabeth’s sister described how forced admission to a nursing home represented a loss of autonomy rationalized by a major reactive depression:

She was just so far at the bottom of her well that she saw no way to get up at all. The supportive living facility called us and said . . . “She’s moving. Come and get her stuff now.” . . . They moved her to the nursing home in the middle of the night . . . She became very irate that this happened . . . now she’s in a nursing home. (Significant Other Interview)

JoJoe compared her sense of confinement in the nursing home to slavery:

Why did this have to happen? Because I feel like my free-dom has been snatched. That’s why I always say, “I feel like a trapped slave, like a slave.” I can understand how the slaves felt. (Interview 1)

The women described the nursing home as a living situ-ation of last resort and felt they had little informed choice about least restrictive living options. For example, Foxie described that she

was tricked into the nursing home. That was the best place for me to be. It was one of the best nursing homes in the state. So the best nursing home, the best place for me. A guarantee, you know, round-the-clock security, the three meals, and all this other stuff . . . . What I thought was my safety net, my safety zone, was really a sophisticated prison. (Interview 1)

Occupational Engagement and Life Role Loss. In the nurs-ing home, all participants experienced the loss of valued occu-pations and life roles. One of Maxine’s friends reported,

The primary thing that she did when she was in the nurs-ing home was feed the squirrels and the birds. You know her whole life was outside that window and she’d throw bread out and the birds would come and those were her friends. It was just like being in prison. If she ever lost it while she was in there I never heard about it. But it had to be very lonely. (Significant Other Interview)

In spite of the perception that Maxine was passive throughout her nursing home stay, she described working diligently to return to community living:

Every day I was trying to get out of the nursing home. Every day I kept trying to find somebody. I was never pleasant to be around. So any phone number, any person, and finally that number [for the Center for Independent Living] came up. (Focus Group 4)

Many significant others failed to recognize the women’s active and ongoing efforts to negotiate the nursing home system and return to community living as a valid form of occupational engagement. The successful transition out of the nursing home was attributed to external forces rather than to the women’s hard work; as one sibling stated, “I don’t think she has the capacity to pull herself up and out. Luckily, the system kicked in and helped her get out, because she never would have been able to do it on her own.” According to Elizabeth,

A lot of other people don’t remember or it’s not impor-tant to them the steps you had to go through to get there; they just see the finished product, and some of the responses are, “Well, it’s about time.” (Interview 1)

The invisibility of the work involved in getting out of the nursing home alienated the women from support from significant others who did not understand the process and resented the women’s access to external supports from the Center for Independent Living, which coordinated com-munity reintegration programming. This is exemplified in a quotation from a significant other, “I finally had to tell her, ‘You know it’s great that you’re getting all these help-ing hands, but you know I have to work for the things I get.’” The relationship between the women’s ability to engage in activities that were both personally and culturally valued and their access to social support was highlighted by Elizabeth:

When I went into the nursing home it was almost as if I didn’t exist anymore . . . the longer I was in the nursing home, the less I had to tell people . . . I had nothing to talk about with people . . . . When you’re in a nursing home, people aren’t interested that you’re playing bingo. (Interview 1)

Social Support, Networking, and Its Influence on Nursing Home Transitions

Despite living in a congregate setting with many other peo-ple, all participants discussed a loss of social contact and resulting feelings of social isolation. Maxine discussed,

I was in the nursing home for 4 years, I lost anyone I ever [knew], I’m starting my whole life over, I’m old, I’m crippled, and it sucks, it just sucks. (Interview 3)

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Gloria described the long-term impact that the loss of social relationships had on her ability to maintain commu-nity living after she transitioned out of the nursing home:

You know I see that as a problem. Cause you come out of the nursing home lonely, no friends, only a few family. And that’s the way it was, I was lonely . . . then certain things go wrong . . . [and] you end up back in the nursing home. (Interview 1)

Access to social support was further limited by signifi-cant others’ pattern of normalizing and minimizing the women’s experiences. One of Alexis’s friends reported,

I would tell her that she needs to adapt to it. It’s no dis-grace to be in a nursing home. There’s a lot of people in there. My mother was in there, but the point is . . . there is not disgrace to have people find out that you were in a nursing home . . . but don’t play on people’s sympathy. (Significant Other Interview)

Significant others described the need for assistance, espe-cially temporary assistance, as a normal part of life. For example, Foxie’s friend stated,

It’s a matter of everyone knowing their limits . . . . In the nursing home, you can only do so much in the begin-ning, especially if you are “handicapped” [sic] or you’re limited. . . . But then again, there’s a fine line of where maybe it just turns into a habit or something. That habit gets hard to break. (Significant Other Interview)

Although significant others normalized the need for “temporary” assistance, they also described the nursing home as an idealized space where the demands of adult life were suspended. For example, one significant other described the nursing home as a “safe spot, but when you’re on your own, there ain’t nowhere to run and you have to confront your problems.”

Gloria’s sister echoed the idea of the nursing home as “safe spot”:

I feel that she shouldn’t have been in a nursing home. That was just some place to relax for a minute and be catered to. I know she did have a disability . . . but you can only enable so long. You may start out supporting and end up enabling. (Significant Other Interview)

The women’s experiences within the nursing homes deviated sharply from significant others’ perceptions of nurs-ing homes as either normal or idealized.

Social Control and Surveillance

The women experienced the nursing home as an institu-tional structure whose goals were in conflict with their indi-vidual needs and desires to transition to the least restrictive environments. Maxine defined the nursing home’s goals: “A nursing home is . . . first, you die. You die, you get out.

That’s the whole thing. They don’t want you to get out” (Focus Group 3).

A variety of forms of social control and surveillance were described as used within nursing homes, all of which limited individual autonomy and power, as described by Elizabeth:

You don’t have enough time to listen to yourself when you’re in a nursing home. It’s more of a herd instinct, like they tell you when to eat, and what time you can eat, and certain activities you can do at what time, and if you can go out or not. (Interview 1)

JoJoe talked about how this loss of choice and control eventually resulted in a loss of volition and personal power. “You don’t go nowhere by yourself at the nursing home, and it takes all your drive away” (Interview 3).

Medication and professional surveillance were cited as strategies used to control residents. Alexis reported,

I was in pretty bad shape in the nursing home because they drugged me. I was on narcotic drugs, and they tried to knock me out because I was more than they could handle. (Interview 1)

Participants described how punitive measures were imposed if they tried to resist the use of medication or behav-ior management, as indicated in this focus group exchange:

Elizabeth: At our nursing home if you refused your medication—

Foxie: They’d dish you out to the hospital.

Elizabeth: That’s right, that’s right.

Foxie: But they can’t just be uprooting me up out of my home just because I don’t be doing what they want me to do. (Focus Group 1)

Foxie elaborated on how the process of medical surveil-lance was tied to constructions of (in)competence and, ergo, (in)ability to manage community living:

They got it down so tight, they put down, well, if you refuse to take your meds, then next thing you know, they petition you out to the hospital, they petition you to go out to the hospital, and see ain’t nothing you can do about it. These things follow you so they compile their records into their favor and not yours; they use the rationale of saying that you’re not competent enough to be independent. (Focus Group 3)

Gloria experienced the threat of expulsion in response to resistive behaviors that the nursing home administration felt were disruptive.

They [the nursing home] tried to put me out two times. . . . It was all because they said I talked too much and was saying the wrong things . . . telling other residents what to do, or what they could do [to get out]. . . . They wanted me out, simply on that reason. . . . They did it regularly. If they didn’t want you there, they would send

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you to another nursing home. . . . I didn’t want to get up and be uprooted and sent to another place after I’ve been here 2 years. (Interview 3)

The participants described a system of surveillance in which communications were intercepted, restricted, or blocked, further complicating the women’s attempts to extri-cate themselves from the nursing home system. According to Elizabeth,

A lot of nurses don’t even give access of a telephone book to their residents. They keep them in the office, locked up. Same thing with the phone issue. . . . You have to receive calls on the pay phone. Well you only have a 50–50 chance of getting that message. (Interview 1)

The women reported that reception of mail was also problematic. According to Foxie,

I was in the nursing home when it got to be my time for my interview [with the housing authority]. I had an interview and did not know it. . . . No one gave me any forwarded mail. The nursing home f----s over your mail. (Focus Group 1)

To waylay interference, the women described a need to keep their intentions to move out secret from nursing home staff. For example, Elizabeth reported that

if you made waves—I had seen from other people that they lost their Section 8 or at the nursing home there were people who left before me and they were told that “Oh you owe us $650” or they wouldn’t give them their discharge papers. . . . It was things like that where you were fearful cause you saw from other people . . . there was retaliation. . . . You almost want to say “petty” but when I was living it, it wasn’t petty. (Interview 2)

Foxie reported how she actively strategized getting around the administration:

I had my paperwork and got my letter of release and signatures from the doctors before they [nursing home administration] knew it. Because they were so used to controlling and saying that you’re incompetent. (Interview 2)

Political Economy of Nursing Homes

In addition to the social control and surveillance, partici-pants recognized the nursing homes as a business that makes money by keeping beds full. Foxie highlighted the economic motivation behind the nursing home industry:

This is the way they play, they tell you they going to do this and they going to do that. Then they leave you there 2 years, 3 years, 5 years, 10 years, 20 years and putting you in a position that they doing something for you. They are not doing nothing for me but then they want me to be all grateful. You know full well you don’t accept

the responsibility for any human being that’s walking around in here if you’re not getting paid. . . . It’s all about the dollars, not about the person . . . but about the dol-lars—how long they can keep you in. (Focus Group 3)

Within the political economy of the nursing home, the women had limited access to information about community living options and discharge planning. Elizabeth spoke of how this lack of support within her nursing home impeded her efforts to move out:

The original activity woman was very empathetic to the idea of my moving out. She was supportive and stuff and she’d help me with certain things and then she left and the people that we got after that . . . anything I said to them I knew would immediately go back to the admin-istrator. . . . So that impinged ’cause I felt that I really didn’t have anybody that I could talk to. (Interview 1)

Similarly, Gloria noted the lack of awareness about com-munity reintegration services and transition supports within her nursing home:

It was just astounding that nobody in this whole nurs-ing home, out of 200-some people nobody knows about the Center for Independent Living and the Deinstitutionalization Program. I just felt that they should have. (Focus Group 2)

The women believed that their nursing homes actively obstructed their access to information about transitioning and discharge planning:

The nursing home is not going to tell you. The social workers are not going to tell you because they are worse than the nursing home. . . . And the doctors are right in there with the nursing home. They want you to stay in the nursing home because that’s how they get their patients. Some doctors only have patients in nurs-ing homes. They have them all nested together there. (Maxine, Focus Group 2)

The lack of discharge planning from within the nursing home context made it very difficult for the women to develop a stable base from which to resume community living.

Strategies of Resistance

In spite of the myriad barriers to community reintegration from inside and outside of the nursing home environment, the women described themselves as “fighters.” A friend spoke with pride about how Maxine refused to listen to negative messages.

She’s a good lady and a fighter. Boy, she just kicked butt. In some ways I just didn’t expect it from her. I don’t know why that is, but I guess you could maybe just see her giving up a little bit. You think sometimes that if someone doesn’t have a close tight-knit family

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that they’re not going to fight as hard. But . . . she just stuck with it. She didn’t give up when it got really hard. (Significant Other Interview)

All the women discussed the need to resist the nursing home system and find strengths within themselves that they did not know that they had. Gloria not only survived the nursing home but also successfully challenged a system that tried to silence her. She saw strength knowing that she “wasn’t one to sit back and accept everything when I knew they were wrong. . . . That in itself shows me that it was me against the nursing home and I won” (Interview 3).

Within 8 months of leaving the nursing home, Elizabeth’s success was recognized with an award from the local chapter of ADAPT, in which she took great pride.

The fact of moving out of the nursing home, and how successful I was in going through all the stuff to get here . . . it took a lot of myself to follow through and get out, and it was very scary. . . . Now you know you can be assertive, you can take care of yourself, you can be con-fronted with a situation that’s maybe not everything you want it to be and you can get out of it. (Interview 3)

Alexis, who loved a good fight, saw the nursing home as a character-building experience:

The nursing home experience is, you survived it, you can use it . . . because in the adversity you’ve earned deep, deep roots . . . when the winds of adversity blow, you’ll be able to survive and come out shining. (Interview 3)

Foxie used her anger at the nursing home as a rallying point to continue moving forward in her struggle to maintain independent living: “I would take myself into their sophistica-tion of incarceration, never no more” (Interview 2).

These strong and defiant words were used to counteract the multiple oppressions that the women experienced within nursing homes. At the same time, the words also begin to represent a sense of social justice and call for action to address inequities experienced by the larger, collective group of dis-abled people as a social group in society. All of the partici-pants described a sense of power from connecting with this “underground” disability rights community during this tran-sition and the influence of this connection on their ability to move out of the nursing home and on their own identity and sense of power. As Elizabeth described, “[The Centers for Independent Living] are much stronger at reinforcing those issues than people that I’ve known a lot longer and closer because you know what I’ve gone through to get where I am” (Interview 3).

Despite the barriers experienced by these women and powerful social, societal, and economic forces imposed on them, they were able to strategize ways to realize choice and control, not only for themselves but also for the broader

disability community. By working in concert and collabora-tion with the larger collective of people with disabilities, the women were raising their voices to effect social justice related to least restrictive living choice and control.

Discussion

Limitations

This ethnographic study involved intensive interactions with a small group of women with disabilities, and their significant others, who had moved out of Medicaid-funded nursing homes in a large midwestern city. This study pres-ents the unique, yet common, experiences of 6 former nurs-ing home residents to illuminate social injustices inherent in the LTC system. Alternative perspectives could be elicited by including a more diverse group in terms of geography, economic status, and gender. This study chose to focus on the perspective of former nursing home residents because their voices were largely silent in the existing social justice research. Future studies may choose to examine the perspec-tives of other stakeholders such as nursing home staff, administrators, and policymakers. These stakeholders might be expected to have different interpretations of life in nurs-ing homes from what is reported here. Although the wom-en’s stories were not corroborated by institutional represen-tatives, the similarities among this group of women who had all lived in different nursing homes and were unknown to each other provide a level of trustworthiness and credibility to the first-person accounts of life in a nursing home. Moreover, this study focused on women who had success-fully moved out of nursing homes, a small subsample of nursing home residents. Future research could seek the perspectives of current nursing home residents who want to transition to the community but have not been able to and those who are not trying to move out, to better understand the personal and social factors that contribute to their living situation, occupational engagement, and participation choice and control.

Clinical Implications

This qualitative study documented the lived experiences of women with disabilities who had transitioned out of Medicaid-funded nursing homes to least restrictive living in the community with supports. Through the voice and observed experiences of these participants, several themes emerged that highlight the intersections of occupational engagement with the environment (social, societal, institu-tional, political–economic), providing critical implications both for occupational therapy practice and, more broadly, for social justice–based systems change to improve community

The American Journal of Occupational Therapy 43

living choice, control, and opportunities for people with dis-abilities as a collective social group.

Consistent with the critical gerontology literature on the meaning of nursing home placement (Flinders, 2003; Rossen & Knafl, 2003), the participants in this study described the nursing home as a living situation of last resort and stated that they felt they had no real choices presented to them and that the nursing home was basically the only option avail-able. This finding points to a critical need for practitioners (1) to be aware of the diverse range and scope of living situ-ation options available to both people with disabilities and older adults and (2) to serve as liaisons to this information and organizations that can inform consumers, and their families and supports, about these choices. This finding also means that practitioners need to be fully aware of the legisla-tion, policies, and resources available related to least restric-tive living (Cottrell, 2005), including the Olmstead decision and resulting community reintegration and consumer-directed choice programming sponsored through the CMS systems change initiatives, waiver programs, and related community-living programming. Although nursing homes and skilled nursing facilities are major employers of occupa-tional therapy practitioners, none of the participants reported any contact with occupational therapy while in the nursing home. Occupational therapy practitioners can work in con-cert with consumers to apply their environmental assessment and adaptation skills to collaboratively strategize the level of supports consumers need to realize real choice.

Repeatedly and strongly, life in these Medicaid-spon-sored public nursing homes was characterized by a rapid and long-standing reduction in meaningful occupational and life role choices and autonomy, with concomitant social loss and isolation. This pattern challenges societal stereotypes that people seek out nursing homes to keep them engaged and socialized and instead points to the importance of and need for meaningful engagement and social networking opportunities. The loss of meaningful occupations occurred at two levels. First, there was a restric-tion and segregation of occupational opportunities avail-able to these women within the institutional context. This finding corresponds to research that reported that nursing home residents spend the majority of their time in passive activities with little meaning or intrinsic value (Harper Ice, 2002). This loss of meaningful engagement was socially isolating. Moreover, the women were forced to assume negotiating the nursing home and social services systems as a primary role if they wanted to transition to the commu-nity, a role that was largely unsupported by the nursing home. Although this role epitomized the women’s strength and resourcefulness, it was often invisible to and underval-ued by their social networks.

The perspectives of significant others reinforced the women’s perceptions of devaluation and invisibility because significant others tended to both normalize and idealize the nursing home experience, which obscured many of the unpleasant realities of life in Medicaid-funded nursing homes and the social injustices inherent within the system. Moreover, the processes of normalization and idealization masked the social and environmental barriers to community reentry and reinforced assumptions and constructions of dependence and independence that serve to maintain institu-tions in society and limit support that could facilitate the transition process. The implication for practitioners is the need to focus on social support and network development, including programming that challenges stereotypes about people with disabilities while simultaneously providing information about rights and options.

Participants experienced an erosion of control and autonomy by means of institutional social control and sur-veillance, such as behavioral management, professional dominance, and information withholding. The needs of the institution were perceived by participants as being placed above those of individuals, resulting in feelings of passivity, isolation, and fear. Such issues undermine occupational engagement, full participation, health, and identity. Practit-ioners need to raise their consciousness about these institu-tional ideologies and practices and work to bring them to the fore to redress them within a social justice framework.

Evidence from this study further supports social con-struction–based analyses of medical institutions, such as nurs-ing homes, and their perpetuation in societies where indi-vidual independent performance and net profit/gain of systems are prized (Albrecht, 1992; Charlton, 1998). A power hierarchy and a hegemonic system of social control seek to create what Foucault (1975/1995) described as “docile bod-ies” controlled by an institutional structure that keeps resi-dents passive and dependent. Disability studies scholars would further assert that these institutional ideologies and assumptions have become so embedded within the fabric of our society, particularly as applied to people with disabilities and older adults, that many of us are not even aware of how powerful an influence they play over individual decision mak-ing related to living situation (Charlton, 1998; Young, 1990).

The implication for practitioners is a critical need to be aware of these social constructions and political economy influences on individual choice and incorporate these issues into all aspects of intervention planning and delivery. This includes the need to increase our awareness and use of least restrictive community living policies and information resources. In occupational therapy, we routinely profile the use of compensatory strategies, technologies, information

44 January/February 2009, Volume 63, Number 1

resources, and supports within active rehabilitation; however, in the context of LTC within public nursing homes, this same affordance was lacking. Information about community living choice resources and rights were delayed or even with-held by the institution, thus further maintaining people’s dependence on nursing homes and threatening their transi-tion potential. Focusing on information access and environ-mental barriers, while working collaboratively with clients to help them strategize community living options, is a step for-ward for practitioners and a paradigm shift from independent physical or cognitive performance to occupational and soci-etal participation.

Despite the issues faced, all the women in this study successfully returned to community living. This transition required a tremendous amount of strength and resourceful-ness to resist and subvert negative social constructions of disability and aging imposed on them. By challenging forced dependency and the deficit-based ideologies, the women overcame the institutional systems and realized their com-munity living goals. Part of this strength came from within themselves; however, all the women pointed to the impor-tance of forming alternative networks of support and advo-cacy with the broad disability rights community. This trend challenges the sole or prerequisite focus on self-advocacy that we often emphasize in rehabilitation and instead points to the need for social and collective advocacy, consciousness raising, and community building that can occur only with other people who have been through the same lived experi-ences. At the same time, it reinforces the need for occupa-tional therapy practitioners to ally and collaborate with dis-ability and aging groups, organizations, and communities if we are to address social justice issues and work to realize least restrictive living and participation choices and control. ▲

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