Despite preference for community-based living, large numbers of people with psychiatric disabilities live in nursing homes throughout the US. Community-based services for this population are limited by public policy and service system barriers. This paper summarizes these barriers and presents the second phase of a participatory action research project jointly developed by university-based researchers and two Centers for Independent Living. A qualitative case study methodology was used to understand the experiences of three individuals with psychiatric disabilities reintegrating into the community from nursing homes. Findings revealed themes of social isolation, participation in virtual communities, variability of impairment experiences and unmet needs for community supports. In addition to thematic findings, action products were generated for the benefit of community partners. These products included national best practice resources and a needs assessment survey tool. Study findings and products point to specific systems change and policy recommendations to better support community reintegration for this population. These recommendations are discussed in light of U.S. healthcare reform and broader disability advocacy efforts.
This paper describes the process, findings and action-oriented products that emerged from the second phase of a participatory action research (PAR) project on community reintegration supports for people with psychiatric disabilities.1 The first phase of the project, which stemmed from a partnership between university-based researchers and two Centers for Independent Living, is described in detail elsewhere (Mirza, Gossett, Chan, Burford, & Hammel, 2008).
This paper discusses a PAR project focused on people with psychiatric disabilities at the intersection of independent living services and principles and psychiatric-specific advocacy efforts and services. The project thus offers a much-needed contribution to disability studies research (Beresford & Walcraft, 1997; Beresford, 2000). Topics related to psychiatric disability are underrepresented in disability studies discourse (Beresford & Walcraft, 1997; Beresford, 2000; Lewis, 2013, Jones & Brown, 2013). In recent times, disability studies scholarship has begun to critically address various forms of disability diversity and intersectionality. Given this progressive trend, the continued inattention to psychiatric disability in disability studies literature is particularly disconcerting (Jones & Brown, 2013). Some have even alluded to the strong presence of saneism, or a privileging of normal emotional and mental functioning, within disability studies (Donaldson & Predergast, 2011; Lewis, 2013). Thus there is a pressing need for robust and honest representation of psychiatric disability issues in disability studies scholarship.
The PAR project described in this paper was conceived in response to three critical developments in the area of mental health care within the larger US health care system. First, funding and policy shifts have resulted in nursing homes becoming the default care setting for people with psychiatric disabilities, a trend that some refer to as 'trans-institutionalization'. Second, even for individuals with psychiatric disabilities who have transitioned out of nursing homes and other institutional settings, community-based services are limited in meeting their transition needs and in supporting their participation in society. Finally, accompanying these dismal realities is the promising emergence of a social justice view of mental health. Increasingly, mental and emotional trauma are seen not so much as a consequence of pathogen but a manifestation of social marginalization, sub-standard living conditions, and lack of adequate support structures. Within this context, there has been an increasing recognition that people with psychiatric disabilities can and should contribute to planning services and policies intended for their use.
A review of the literature will further underscore the salience of the project by elaborating on the three mental health care trends identified above.
Funding and Policy Shifts related to Mental Health Care in the United States
Starting in the mid-twentieth century, the developed world witnessed a trend toward deinstitutionalization and community-based service options for people with psychiatric disabilities. In the United States, however, intended outcomes of deinstitutionalization have been at odds with funding and policy shifts (Gatz & Smyer, 1992). These shifts have tended to foster a proliferation of alternative institutional settings for this population such as state and privately-owned nursing homes, a trend sometimes referred to as 'trans-institutionalization' (Pavle & Kelly, 2010).
For example, in 2002, the number of nursing home residents with a mental health diagnosis other than dementia far exceeded the number of beds at psychiatric hospitals that year (Fullerton, McGuire, Feng, Mor, & Grabowski, 2009). Longitudinal data on new nursing home admissions in the United States support a similar trend. These data indicate that the proportion of people admitted to a nursing home with mental health diagnoses not only increased between 1999 and 2005, but also overtook the proportion of admissions with dementia (Fullerton et al., 2009). In 2008, nearly 125,000 young and middle-aged adults with mental health diagnoses were living in nursing homes in the United States, representing a 40% increase from 89,000 people in 2002 (Pavle & Kelly, 2010).
The emergence of the government as a major third party payer through Medicare and Medicaid, faulty reimbursement incentives that favor inpatient care, and misguided policies are all believed to have contributed to this trend toward trans-institutionalization. Despite federal policy outlawing unjustifiable institutionalization of people with disabilities, most recently enshrined within the Olmstead Supreme Court decision (1999), national trends indicate that institutional services are the primary vehicle for delivering long-term care in the United States (Shirk, 2006). While this affects all people with disabilities, it is particularly detrimental for people with psychiatric disabilities. In a paradoxical turn of events, policies intended to prevent their institutionalization have contributed to their trans-institutionalization into nursing homes. At the same time, the nursing home industry has evolved with respect to payers and patient mix to exploit this situation for profit (Shirk, 2006; Pavle & Kelly, 2010).
For example, 1965 Medicaid law prohibits federal financial participation in health services provided to individuals residing in institutions that primarily (over half) serve persons with mental health conditions. Despite this law, nursing homes have retained their viability as an institutional option for this population by under diagnosing mental health conditions among residents (Gatz & Smyer, 1992) and by maintaining a patient base below the 50% mentally ill threshold permitted by the law (Pavle & Kelly, 2010). A similar 1987 law designed to discourage trans-institutionalization requires that all older adults seeking nursing home admission be screened and those with exclusively mental health conditions be excluded from admission (Gatz & Smyer, 1992). However, compliance with these federally-mandated requirements is reportedly deficient in many nursing homes (Fullerton et al, 2009; Pavle & Kelly, 2010). Further, with the expansion of home health services for people with physical disabilities, there is a tendency among nursing homes to use 'bed brokers' who visit hospitals and homeless shelters to recruit potential residents with mental health conditions in order to maintain profitable occupancy rates (Hanrahan, Luchins, Savage, & Goldman, 2001).
Ironically, the expansion of community-based long-term supports for people with physical disabilities appears to have contributed to the trans-institutionalization of people with psychiatric disabilities. Although these two groups are subsumed under the same administrative category with regard to long-term care policy, it is no accident that one has fared better than the other. An important distinction between people with physical and psychiatric disabilities is that community living is recognized as a basic human right for the former while involuntary institutionalization of the latter is still sanctioned (Beresford, 2000; Jones & Lewis, 2013). Secondly, Centers for Independent Living, often the mainstay for coordinating community-based long-term care supports and advocacy for people with physical disabilities, have thus far paid scant attention to similar issues for people with psychiatric disabilities.
All these factors have contributed to large numbers of people with psychiatric disabilities receiving long-term care in nursing homes. At the same time, the major public financing mechanism for community-based long-term care (the Home and Community-Based Services waiver program) remains underdeveloped for people with psychiatric disabilities (Shirk, 2006). In addition, funding for community mental health centers has been dwindling over the years (Gatz & Smyer, 1992), further limiting community-based care and supports for this population as discussed in the next section.
Inadequate Community-based Services for people with Psychiatric disabilities
The trend toward trans-institutionalization described above is counterintuitive given the overwhelming preference of people with psychiatric disabilities for community-based living options. Research studies carried out in different contexts have consistently shown that people with psychiatric disabilities prefer life in the community over extended stays in institutions and hospitals (Davidson et al., 2001). For example, a review of eight studies that explored client perspectives on deinstitutionalization in three countries revealed that 98% of participants had a clear preference for community living. Reasons cited for this preference included greater freedom, autonomy, privacy, and proximity to friends and family (Davidson, Hoge, Godleski, Rakfeldt, & Griffith, 1996).
Further evidence in support of community-based care is available from research studies ranging widely in methodology including pre and post discharge comparisons, long-term follow-up surveys, cost-effectiveness studies and ethnographic explorations. Together these studies have demonstrated that community-care options are not only more economical (Lapsley et al., 2000), but also contribute to greater life satisfaction (Hobbs et. al. 2000; Hanrahan et al., 2001) and clinical gains in the form of symptomatic improvement and decreased hospital use for people with psychiatric disabilities (Hobbs et al., 2000; Harvey, Jeffreys, McNaught, Blizard, & King, 2007).
Despite obvious benefits, community living has also been associated with serious barriers hindering long-term community integration of people with psychiatric disabilities. Barriers identified include: inadequate or substandard housing, poverty, lack of opportunities for employment or participation in meaningful activities, lack of assistance with daily living skills, social rejection, isolation and lack of social supports, and the unavailability, inaccessibility, and poor quality of community-based mental health services (Davidson et al., 1996; Brems, Johnson, Corey, Podunovich, & Burns, 2004; Zubrtisky, Mullahy, Allen, & Alfano, 2006; Harvey et al., 2007).
The lack of needed services and supports is particularly disturbing given their overall positive contribution to community living outcomes and prevention of reinstitutionalization (Davidson, Stayner, Chinman, Lambert, & Sledge, 2000; Harvey et al., 2007). Ironically, the services and supports most needed are the ones least available in community settings (Brems et al., 2004), prompting calls for mental health research to move away from debating institutional versus community care, and toward discussing how community participation can be promoted most effectively (Davidson, Flanagan, Roe, & Styran, 2006). These calls have been accompanied by an emphasis on active involvement of people with psychiatric disabilities in the design, delivery, and evaluation of mental health services and related public policy as discussed below.
Social Justice Views of Mental Health and Participatory Approaches to Mental Health Research
In recent times, a growing body of work has begun to speculate on the possible causal relationship between mental illness and societal marginalization and sub-standard living conditions (Smith, Chambers, & Bratini, 2009). This relationship is corroborated by research studies indicating that people with psychiatric disabilities perceive their needs more holistically and complexly and therefore beyond narrow clinical interpretations (Klein, Rosenberg, & Rosenberg, 2007). The move away from strictly medical and clinical interpretations of mental illness has strong parallels with the social model of disability (Beresford, 2000; Lewis, 2013).
Concomitant with this broadening view of mental health has been an emerging emphasis on valuing the voices and experiences of people with psychiatric disabilities in defining their own needs (Clark & Krupa, 2002; Jacobson et al., 2005; Davidson et al., 2006; Goodwin & Happell, 2006). There is growing recognition that incorporating the preferences and views of people with psychiatric disabilities in service planning and delivery not only results in more meaningful services but also improves their social functioning and community participation (Davidson et al., 2000; Klein et al., 2007). The belief that people with mental health conditions should play a central role in shaping programs and policies that serve them has also been endorsed by federal, state and advocacy organizations (Zubritsky et al., 2006). There have also been calls for participatory mental health research where people with psychiatric disabilities are involved in the research enterprise in various capacities including as collaborators, consultants, and participants (Davidson et al., 2006).
The above development holds deep significance for disability studies. Within disability studies, the culture of recognizing first-person accounts and lived experiences of disabled people is well established. Indeed much of the disability studies literature has been produced or co-produced by people with physical and sensory disabilities. At the same time, lived experiences and perspectives of people with psychiatric disabilities are sorely lacking (Jones & Brown, 2013). Participatory action research and scholarship offers one possibility to redress this omission.
Participatory action research (PAR) has been recommended as the most appropriate research methodology for disenfranchised populations in general, and for oppressed people with psychiatric disabilities in particular (Nelson, Ochocka, Griffin, & Lord, 1998; Ochocka, Janzen, & Nelson, 2002; Smith et al., 2009). PAR calls for involvement of various stakeholders and also presents a conceptual and methodological stance that is less likely to reproduce the orthodoxy of professionally defined research and more likely to foster change that is well aligned with the self-defined needs of participating groups and communities (Corrigan & Garman, 1997; Nelson et al., 1998; Beresford & Wallcraft, 1997; Smith et al., 2009). Within the PAR paradigm, use of qualitative data collection methods is especially recommended as these methods are ideally suited for giving voice to marginalized groups by deeming their everyday experiences as a major knowledge source (Nelson et al., 1998; Davidson et al., 2000).
The PAR project presented in this paper was designed in response to these mental health trends and methodological recommendations.
The project was initiated by program directors from two Centers for Independent Living (CILs) when they started receiving requests for Community Reintegration (CR) services from an increasing number of people with psychiatric disabilities. CR services at both CILs were primarily designed to support people with physical disabilities in making the transition from nursing homes to community-living. In seeking to better serve people with psychiatric disabilities and to avoid the pitfall of forcing people with psychiatric disabilities into the same mold that worked for people with physical disabilities (Deegan, 1992), the program directors sought research collaboration with university-based researchers. The first phase of this project (Mirza et al., 2008) indicated the need for coordinated transitional and long-term services to support the community reintegration of people with psychiatric disabilities. Furthermore, all stakeholders involved in the original project agreed that a better understanding of the community reintegration experiences of people with psychiatric disabilities was warranted in order to inform CR programming at the CILs, as well to advocate for changes in state mental health policy. This led to the follow up study (Phase 2 of the project) described in this paper.
The follow-up study, like the initial project (Mirza et al., 2008), utilized a PAR approach. The PAR approach emphasizes active engagement of key stakeholders throughout the research in order to increase trustworthiness of findings and to use evidence to foster systems change (Selener, 1997).
Together, the university researchers and CIL program directors decided to use a qualitative case study methodology within the PAR approach. Collecting evidence grounded in consumers' needs and experiences is considered the first step in bringing about mental health policy change (WHO, 2009). To this end, the research team agreed that case study methodology would be most effective in providing rich contextual evidence grounded in the community reintegration experiences of people with psychiatric disabilities (Merriam, 1998; Patton, 2002). A case study is defined as "an empirical inquiry that investigates a contemporary phenomenon within its real-life context, especially when the boundaries between phenomena and context are not clearly evident" (Yin, 2003, p. 13). Three individuals with psychiatric disabilities, representing varied backgrounds and living situations, were purposively sampled to understand the phenomenon of community reintegration following institutional placement. Of the three case study participants, two had been involved in the initial phase of the project and were being provided CIL CR services at the time of the study (Mirza et al, 2008). The third individual had made the transition from nursing home to community without formal CIL services. All participants were consented using protocols approved by a university research ethics board.
The three participants chose pseudonyms of Soul, Jennifer, and Vic. All identified as having a psychiatric disability, but specific diagnose(s) were not collected as these were deemed irrelevant to the community reintegration experiences that we were interested in studying. Other characteristics of the participants are included in Table 1.
|Education||Military training||College Degree||High school degree and some advanced schooling at religious institution|
|Living Situation||Alone in studio apartment in subsidized housing development in downtown of large Midwestern city||With husband in house in suburban neighborhood on outskirts of large Midwestern city||Alone in studio apartment in mixed residential/retail neighborhood in large Midwestern city, near major university|
|Working Situation||Unemployed; volunteer at CIL||Homemaker||Unemployed; volunteer at religious institution|
|Consumer of CIL services?||Yes||Yes||No|
|Site of Community Interview(s)& Participant Observations||Electronics store
|Grocery store||Coffee shop
Cooperative grocery store
Data collection involved two in-depth interviews and two participant observation sessions with each participant. Two sites were used for data collection: each participant's home and a community setting identified by the participants as important in his/her community reintegration experience (see Table 1 for details). Home interviews were semi-structured and focused on each participant's experience of transitioning from an institution to the community, supports and barriers to community living and integration, and recommendations for CILS to support community reintegration for people with psychiatric disabilities. Community interviews were less structured and participants were encouraged to lead an open-ended conversation about the aspects of their neighborhood/community that supported and hindered their well-being. Home interviews were audio recorded. Community interviews and participant observations were documented using field notes and digital photographs the participants directed the interviewers to take.
Using a cross-case analysis technique (Merriam, 1998), data from the interviews and observations were analyzed collectively to develop conceptual categories. In using multiple cases, we hoped to improve transferability of our findings in understanding the experiences of people with psychiatric disabilities reintegrating from institutionalized settings into the community (Merriam, 1998). Analysis of the data was triangulated utilizing multiple reviewers (Patton, 2002). Two members of the research team separately completed a raw coding of the data to develop conceptual categories, or themes. Triangulation involved confirmation of similar codes and addition of different or new codes based on different reviewer perspectives (Patton, 2002). In keeping with the PAR approach (Selener, 1997), preliminary themes where shared with other team members including the community partners. Ongoing collaborative dialogue was used to evaluate, revise and finalize thematic findings as well as to plan action steps and develop action products, such as information and tools that would help CILs to support community reintegration for people with psychiatric disabilities. Both thematic results and action products are shared below.
During the cross-case analysis, four major themes and associated subthemes emerged from the data (see Figure 1). From these themes, stakeholders developed products to support action for social change. This section begins with thematic findings followed by a description of the action results.
Figure 1: Themes and Subthemes of Cross-Case Analysis
All participants described social isolation as a common experience. For example, Soul stated that since leaving the nursing home six months ago, the researchers were his first visitors. He, as well as the other two participants, saw multiple and interrelated reasons for this isolation including: 1) psychiatric disability stigma, 2) social network depletion, 3) limited social opportunities, and 4) lack of financial resources.
Psychiatric Disability Stigma:
Soul, Jennifer, and Vic spoke of how stigma related to psychiatric disability interfered with their social interaction with others. This experience was most eloquently described by Vic, who preferred not to disclose his disability to others. He noted that when people find out someone has a psychiatric disability "[they] automatically distance themselves from you. If you don't tell them, they don't know. If they don't know, they won't be prejudiced [against me]."
Similarly, Soul discussed the impact of stigma on his personal and social life. His concern about how others viewed his psychiatric disability made him "shy away from people." He not only avoided others in social gatherings, but also refrained from using public transportation to access everyday activities.
Social Network Depletion:
Participants described how being labeled with a psychiatric disability resulted in rejection from friends and family. This rejection perhaps contributed to their gradual distancing from established social networks and might have been exacerbated by the physical move into a nursing home. Ironically, participants stated that their family members thought they (the study participants) were better off living in nursing homes than in the community. For example Soul talked about how he became estranged from his family because of their reaction to his having a psychiatric disability: "the problem with mental illness is a lot of bridges get burned…I have to rebuild those fences with my family. They didn't want me around either because I might begin to talk to myself. I figure if you're not listening in, I might hold a conversation with myself and they didn't want that behavior around their children so, [for them] it was fine for me to be in the nursing home."
Limited Social Opportunities due to Living Situation:
Study participants were all living in a nursing home prior to their reintegration to the community. They all stated that while they greatly preferred living in the community over living in a nursing home, their post-nursing home living situation was not conducive to a vibrant social life.
For example, Jennifer and her spouse were new home-owners. Her spouse had a janitorial job and Jennifer was receiving Social Security Disability Income after losing her job due to her illness. The only place Jennifer and her husband could afford a home was in a remote suburb where they were surrounded by abandoned industrial sites and cornfields, as reported in observation field notes by researchers. Jennifer believed that her depression and "gloominess" were exacerbated by not having neighbors with whom to spend time or anywhere to go in the community. "I don't have anyone to catch the bus and go to Starbucks with…there's nothing in this area to do."
Despite being more centrally located to many community opportunities, Soul's experience did not vary significantly from Jennifer's. After leaving the nursing home, Soul moved into an apartment building in the city center that offered rental housing to people with low-income on a sliding scale. Thirty percent of the apartments in the building were subsidized by government funding and Soul qualified for a unit on grounds of his disability. Along with the subsidies came stringent rules for the residents: residents were allowed guests only on two nights per week, alcohol was prohibited within building premises, all visitors were required to surrender photo identification at the front desk, and residents were subjected to periodic inspections by outside agencies. Soul's description of transitioning to his apartment unit after living in a nursing home was much like leaving prison: "…you can't even raise your voice in here. If I get into an argument with a neighbor I am out of the building. Where do I have to go but the nursing home…it's like being on parole. This is my life now."
Limited opportunities for social participation were salient in light of the importance of social participation for avoiding institutionalization, as articulated by Soul, "…I'd say…the busier you stay, the more that you will stay out of the hospital. [If you] stay out of the hospital, you stay out of the nursing home."
Lack of Financial Resources:
All three participants were living on a very limited and fixed Social Security Disability Income. Given their financial situation, they discussed their lack of resources to socialize with others. In Soul's words, "The hardest part is not having any money…I have a calculator over there and I gotta' sit down with it every month. It's down to the penny. Not having enough money for a social life or a significant other is hard. You gotta' watch every penny if you're living on a budget like mine…if I could only go to a [baseball] game. But, that's a $25-dollar ticket, man. It's like four days of groceries. That's the reality of life."
Jennifer also commented on lack of resources to support social participation including common social rituals such as meeting friends for a meal at a restaurant: "it costs a lot to eat out". Similarly Soul reported having a sister and a niece with whom he had a close relationship. Yet, he rarely visited them because traveling to the suburb where they lived was an expense he could not afford.
Participation in the virtual community
While the participants were negotiating real-life social interactions, they were also testing the waters of socializing virtually. All three participants attached a lot of importance to computer and Internet access. At the time of data collection, Soul was taking computer classes organized by the CIL where he was volunteering. He was also trying to spend at least an hour every morning in the computer room of his apartment building. He reported spending time on the Internet mostly to look up sports and support groups for people with psychiatric disabilities.
Like Soul, Vic too was very interested in learning how to use the computer and Internet. At the time of data collection, he reported that he was actively looking for possible resources to use computer technology, such as his neighborhood public library. Finally, Jennifer reported being "hooked on the Internet." She described it as something that helped her get through the day. She used it regularly to participate in chat rooms, to look up medical information, to look up information of psychiatric disability organizations and information on policies relevant to people with disabilities.
Participants were actively seeking participation in the virtual community perhaps because they had easier access to it. For example, because of the reach of information technology, one could be in a desolate area like Jennifer and still be able to log on to the Internet. Similarly, one could be living in a semi-policed environment like Soul but still use the Internet with relative freedom. In addition, the virtual community perhaps allowed participants a safer space where they felt less inhibited and could participate freely without fearing stigma and judgment based on their psychiatric disability label.
Variability of Impairment Experiences
Participants spoke about how their impairment experiences fluctuated from time to time and how this variability bore implications for needed supports and services, community participation, well-being and finances. Jennifer reported that her impairment experience varied with the weather; she felt more depressed on overcast days. When discussing formal supports such as personal assistant (PA) services, she indicated that people with psychiatric disabilities may not need PA services everyday and "it would be nice if they could just call up and order a PA" when they needed one.
Like Jennifer, Soul spoke of variable impairment experiences: "there are days when you don't want to get out of bed, when you don't want to take your medications, you don't want to cook." On such days he expressed difficulty with going to the CIL where he was volunteering, although this was an activity he enjoyed very much.
Variability of impairment experiences contributed to difficulty in obtaining and maintaining employment. In this regard, they expressed the need for more flexible job expectations for persons with psychiatric disabilities. For example, Jennifer was forced to leave a full-time job at a CIL because it lacked the flexibility to accommodate her impairment fluctuations
Needed community supports
Participants mentioned several supports and services that could promote successful community reintegration of people with psychiatric disabilities. These included: personal assistant (PA) services, peer support groups, and public education campaigns to combat stigma.
Personal Assistant Services:
Participants deemed PA services to be very valuable for people with psychiatric disabilities. According to Jennifer, ideal PA services for people with psychiatric disabilities would cover the following tasks: "medication management, taking people with psychiatric disabilities out of the house to go shopping or other places in the community", and "just talk[ing] with them."
Soul suggested that PA services could also include help and guidance with self care and housekeeping chores. He said this service was particularly important in the immediate period following the move to the community: "Early on, there was no one here to tell me what to do and I had been in the nursing home for almost two years and nine months. [In the nursing home] there is always someone to tell you, to tell you you have to go to the day program today, you have to take a shower today. So, for about 30-45 days [after reintegrating into the community from the nursing home] it was kind of confusing here. I didn't cook consistently; I didn't take my medications consistently.…" Soul felt that receiving PA services was also important over the long-term especially on days when he did not feel like getting out of bed. Incidentally, at the time of this study, Soul was using PA services for four hours each day. He deemed this support as crucial in helping him "stay on track" on those "difficult-to-get-out-of-bed" days.
Peer Support Networks:
Participants stressed the importance of peer support networks in enabling people with psychiatric disabilities to take control over their lives and offering emotional support when needed. Participants believed that peers with psychiatric disabilities could help one another by sharing tips on medication management and negotiating the healthcare system, areas that medical professionals rarely have time to address. Contrary to waiting for a professional appointment, peers were also regarded as being able to offer immediate support when someone with a psychiatric disability simply wanted to talk. Peer support was also deemed more relevant by virtue of stemming from shared experiences.
For example, Vic, after a negative experience with medical staff at his nursing home, identified the need for a helping hand, someone who would listen to his problems and help him be a more informed consumer: "You just need someone to listen to your problems. When you go to a doctor they just don't have the time. People need to be more informed consumers of the health care system and aware of the medications they are taking and manage their own medication regimen."
Jennifer echoed Vic's sentiments when she said, "they [doctors] make people wait for two weeks when you call them." When asked to envision a perfect world of supportive services for people with psychiatric disabilities, Jennifer suggested the following: peer mentoring ("someone you can relate to"), crisis counseling ("a friend when your friends can't be there"), and a drop-in resource center ("something in the community to go to"). She enthusiastically recommended the development of a "peer line", a telephone service where people could call in with their queries or when they "just needed someone to talk to."
Participants believed that peer supports could be immensely helpful during the transition from nursing homes to the community especially given the traditional model of CIL support, which required consumers to take full ownership of their transition process. Participants welcomed this opportunity to take control of their lives, but also acknowledged the need for guided support. Having spent considerable time in a nursing home, they needed help with first getting reoriented with the outside world before taking charge of their lives. As stated by Jennifer, CILs are a "big referral place…they spend their money to help you get out and teach you self-advocacy. They give you the tools but it's like you have to grab on and do it for yourself. [I] want a menu of options and choose what I want…however if a person was not a good picker, a peer mentoring system would be excellent."
Vic and Soul also cited the need for more supports during the transition process. The CIL that assisted Soul in leaving the nursing home did his client intake over the phone and gave him a list of subsidized apartments, expecting him to call prospective landlords and visit rental apartments on his own. Restrictions on phone access and external visits in the nursing home made this process very challenging for him and indicated the benefit of someone who had successfully navigated similar challenges supporting the process. Vic, who did not receive CIL services during the transition process, cited other sources of support such as a rehabilitation therapist at his nursing home and a fellow patient who shared housing tips and resources with him.
Public Education to Counter Stigma:
All participants discussed the need for changing negative perceptions about people with psychiatric disabilities within general society and within the broader disability community. Soul stated, "[I would want people to know] that a mental disability is just as debilitating as a physical disability. They need to see those kinds of thing that are put out by [psychiatric disability advocacy group]…where they say that depression hurts, it is physical hurt. And they don't have that sensitivity yet." In Vic's words, "People would say, 'he has a disability instead of he's crazy'…it would be nice if [others] could show people with psychiatric disabilities that you really care about them." Soul also used a movie analogy to describe this issue, "you know the movie Unforgiven — it's like you won't be forgiven for getting sick…there needs to be more awareness, more than just NAMI [National Alliance on Mental Illness] support, more consumer-based support, more serious job training. The stigma of mental illness is not going to go away. Therefore it is important to educate people and that's what I'm trying to do…"
Research Driven Action Products
As previously stated, in addition to the thematic findings identified above, this project also yielded some action products. Specifically, two key action products were developed to aid the CILs in supporting people with psychiatric disabilities to reintegrate into the community. The first of these was a best practice resource listing innovative strategies for providing long-term care services for people with psychiatric disabilities including: peer support, drop-in centers and other specialty services, consumer-directed programming, cash and counseling programs, and public housing systems (Mirza, Gossett, & Chan, 2006). These areas were highlighted because they directly correlated with the needs identified by the three case study participants. Development of this resource was a collaborative process, utilizing literature reviewed by researchers and modified and expanded with feedback from CIL partners.
The second action product was a survey tool intended for systematic assessment of community reintegration needs (see Appendix A). The tool was modeled after the concerns report method (Schriner & Fawcett, 1998) in which strengths, problems, and areas for improvement are assessed through importance, satisfaction, and frequency questions. Survey items were developed by the researchers and CIL partners and were based on the thematic findings described above. These items were confirmed and modified for relevance and ease of readability with input from the three case study participants. This tool was designed to meet the following criteria set by CIL partners: (1) rapid assessment of community reintegration needs of people with psychiatric disabilities, (2), ease of data collection and analysis by personnel with no research background (3) empirically supported methodology so that evidence collected can be used to advocate for increased state funding for community-based long-term care supports for people with psychiatric disabilities.
The goal of this study was to gain detailed insights into the community reintegration experiences of people with psychiatric disabilities. In this section we seek to (1) summarize study findings in light of previous literature, (2) interpret insights in relation to systems and policy change initiatives, and (3) reflect on the need for cross-coalition disability advocacy.
Summary of Study Findings
This study shed important light on the supports and barriers that influence the community transition experiences of people with psychiatric disabilities and their long-term stability and well-being in the community. The use of qualitative research methods allowed a detailed understanding of these complex phenomena. Findings of this study corroborate and extend what has been previously documented in the literature.
For example, a consistent finding across the three case studies was the experience of social isolation resulting from stigma, depletion of social networks, and limited opportunities and resources for socializing. Previous literature has also documented the presence of stigma (e.g. Jones & Brown, 2013; Kafai, 2013) and depleted social networks (e.g. Davidson et al., 2001) among people with psychiatric disabilities. Stigma and social isolation might be common to all persons with disabilities. However, the impact is far more profound and far-reaching on the identity, social interaction, and community integration of people with psychiatric disabilities (Beresford & Wallcraft, 1997). This is especially true in the aftermath of several recent incidents of violence where psychiatric disability was used as an explanatory trope. Some have attempted to link such incidents to diminution of community supports for people with psychiatric disabilities. Yet the overarching public debate reinforces the stereotype of people with psychiatric disabilities as dangerous, in need of surveillance and control, and unfit for community living (Price 2011; Reiss, 2010). Such a hostile and unwelcoming environment can impose significant challenges for people seeking social interactions after prolonged institutionalization. Unsurprisingly, our study participants ascribed considerable importance to participation in virtual communities. The Internet offers opportunities for social interaction without the baggage of disclosure and resultant stigma and thereby allowing relative anonymity for individuals with psychiatric disabilities.
As another way of combating stigma, participants recommended greater acceptance of people with psychiatric disabilities within the broader disability umbrella. While there are arguments in favor of a separate 'mad identity', our study participants preferred blending in with other people with disabilities so that society would perceive them as being 'disabled', and therefore more acceptable rather than being 'crazy'. Others (e.g. Kafia, 2013) have also discussed instances of masking one's psychiatric disability by claiming or foregrounding a disabled/physically disabled identity. The resulting interplay between identities and positionalities has not been adequately address in disability studies and represents fertile ground for future research and scholarship.
In addition to stigma and isolation, our study participants articulated other unmet needs such as peer support networks and assistance with self care and daily life activities like medication management, housekeeping and managing finances, particularly at times of crisis. These findings resonate with what has been previously reported in the literature (Brems et al., 2004; Jacobson et al., 2005; Young & Ensing, 2010)
In addition, our study participants specifically articulated the need for 'personal assistance services' (PAS) modeled after similar services originally conceived for people with physical disabilities. Though radical, the idea of providing PAS for people with psychiatric disabilities is not new. For example, Pita and colleagues (2001) argue that the application of PAS to people with psychiatric disabilities can be an attractive option to support care in the community. In the U.S., PAS has an established funding base through the Medicaid personal care option, and if used for persons with psychiatric disabilities, can help states garner additional federal revenue. However, the authors warn that the existing PAS model would need to be adapted to the unique needs of people with psychiatric disabilities. Our research findings support this idea and indicate that PAS would be valuable to people with psychiatric disabilities especially during the early period of transition from institutional settings. Also, experiences of our study participants underscore that PAS, if developed for people with psychiatric disabilities, would need to comprise components and schedules specific to the variable and ever-changing nature of mental health (U.S. Department of Health and Human Services, 1999). Also, services provided by attendants, while guided by the common principle of consumer-directedness, would differ from those provided to people with physical disabilities. Instead of hands-on care and physical assistances, PAS for people with psychiatric disabilities would include cognitive cuing, reminders, and sequencing of daily tasks and errands (Pita et al., 2001).
Our study findings described above carry implications for critical policy and systems level changes. In keeping with the PAR principles of using research evidence to foster social and political change (Selener, 1997; Themba & Minkler, 2003), some of these policy implications are highlighted below.
Systems and Policy Change Initiatives
In the U.S., people with psychiatric disabilities face enormous service gaps when compared to people with physical impairments. At last count around 6% of the adult U.S. population was identified as living with a serious mental illness (National Institute of Mental Health, 2008a). Of these, just over half received treatment for their mental health condition (National Institute of Mental Health, 2008b). Some treatment gaps could be attributed to the long-standing lack of parity in private insurers' coverage of mental and physical conditions (Barry, et al., 2010) and the fact that private insurance coverage is frequently denied based on an applicant's preexisting condition (Barlas, 2010). Since neither of these restrictions applies to publicly-funded care, mental health services in the U.S. are largely funded through public sources, the largest of these being Medicaid (Shirk, 2008). Medicaid is not only the largest payer of services but also one of the few that covers community-based services and supports (Shirk, 2008). While the Medicaid funding structure offers opportunities for development of community reintegration services, it also presents some challenges.
From the findings of this study, it is evident that impairment experiences, and consequently service needs, fluctuate widely within and among persons with psychiatric disabilities, necessitating models of care that can be tailored to the needs of individual participants. Consumer-directed and patient-centered models of care thus offer the ideal template for development of mental health services. While the Centers for Medicare and Medicaid Services have promoted a wide variety of programs based on these models of care, the programs are mostly targeted at older adults and persons with developmental disabilities; similar programs for persons with psychiatric disabilities remain limited (Cook, Terrell & Jonikas, 2004). This disparity largely stems from the fact that consumer-directed service options are generally funded through Medicaid's 1915(c) Home and Community-based Services (HCBS) waivers. In order to gain approval for a 1915(c) waiver, states must show that the proposed community-based services will cost no more than if the individual were served in an institution. This cost neutrality is difficult to demonstrate for community mental health services because Medicaid does not cover services provided in an Institution for Mental Disease to individuals aged 22 to 64. However, some states like Colorado, Montana, and Wisconsin have justified HCBS waiver programs for adults with psychiatric disabilities by claiming these individuals meet the criteria for services delivered in a nursing home (a qualified entity for demonstrating cost neutrality) (Shirk, 2008).
Section 1115 waivers are other vehicles for developing consumer-directed programs that allow states to implement pilot projects that waive service eligibility restrictions such as those imposed by 1915(c) waivers. Several states have used these waivers to develop 'Cash & Counseling' programs. These programs provide Medicaid recipients a flexible monthly allowance which they can use to purchase a wide array of services including PAS. These programs have also been implemented mostly with older adults and people with developmental disabilities (Mirza et al., 2006). However some have been adapted for people with psychiatric disabilities. These programs' inherent flexibility would be ideally suited for the diverse and fluctuating service needs identified by study participants. For example, Florida and Texas have developed self-directed care programs targeted at people with serious mental illness. These programs, based on the 'Cash & Counseling' approach, are funded through a combination of general state revenues, Medicaid dollars, and community mental health block grants from The Substance Abuse and Mental Health Services Administration (SAMHSA). Program participants are allotted a fixed budget and have control over using the funds to purchase services and supports to achieve their self-designed recovery plans (Cook, 2011). Notably, services and supports that can be purchased include non-traditional options such as peer support groups, transportation expenses, school and living supplies and emergency rent and utilities. Such a program, had it been available to the study participants, would have enabled them to build and sustain social networks and maintain a stable standard of living despite their financial constraints.
Another barrier to using Medicaid funding for development of community-based long- term care services for people with psychiatric disabilities is the Medicaid statute's reliance on a medical model of assistance (Cook et al., 2004). Many of the service needs identified by the study participants such as PAS and peer support mechanisms involve lay providers who might not be recognized under Medicaid statute as qualified to provide remedial treatments. Some states have used innovative strategies to work around this barrier. Georgia has used the broadly-defined rehabilitation option under Medicaid to fund peer supports for people with psychiatric disabilities by recognizing peer providers as professionals through a formal certification program. Oregon has funded drop-in support centers for people with psychiatric disabilities using a Medicaid systems change grant, a funding mechanism that allows states to develop community living options for people with disabilities (Cook et al., 2004). Oregon has also made PAS widely available to people with psychiatric disabilities through Medicaid funding. Many of the personal care attendants are themselves people with psychiatric disabilities. Similarly, Louisiana has developed a training curriculum to educate personal care attendants about the nature of psychiatric disability and how the PAS model applies to this population (National Council on Disability, 2008).
In another example of creative use of funding, Michigan has combined SAMHSA block grant monies with a Medicaid 1915(b) waiver to fund services beyond traditional medical and rehabilitation care (Cook et al., 2004). These services include consumer-owned and operated drop-in centers providing peer support and small business assistance. In must be noted that 1915(b) waivers are generally used by states to develop managed care Medicaid programs with any subsequent savings being available to fund additional services (Cook et.al, 2004). While Michigan was able to make innovative use of the waiver, overall concerns abound regarding managed care programs for people with psychiatric disabilities especially related to inappropriate denials and reduction in services as a result of capitation payments and lack of expertise in the provider network.
Despite restrictions within Medicaid's funding structure, state-based initiatives for promoting community-based mental health services are likely to be boosted further after full implementation of the Affordable Care Act (ACA, 2010). The ACA authorizes increased federal Medicaid matching funds to help states increase the proportion of community-based long-term care services. Promising changes under the ACA include improvements to the Medicaid Home and Community-based Services option and programs such as Money Follows the Person to augment the transition of institutionalized persons with disabilities to community settings (Affordable Care Act for Americans with Disabilities, 2010).
Other ways of supporting community mental health services include cost-effective alternatives to existing modes of service provision while preserving the consumer-directed nature of services. For example, given our study participants' growing keenness for information technology, one way to save costs would be to convert certain in-person services such as peer support and case management to web-based options. Precedent for web-based consumer directed health spending accounts already exists in the private sector (Cook et al., 2004). Medicaid demonstration projects could be used to replicate similar web-based options in the public sector. However, disparities in information technology access would need to be considered when evaluating such options.
Need for Cross-Coalition Disability Advocacy
Despite projected policy gains and innovative systems change efforts, some sobering realities remain. While Medicaid is a major player in development of mental health services, state and local mental health agencies also have an important role. Aside from federal matching funds, these agencies rely on state and local funding sources. Multiple agencies and disparate funding sources not only create service coordination challenges but also mean that mental health services are strongly influenced by local legislative mandates (Shirk, 2008). In some states, local practices are still skewed in favor of institutional versus community-based care for persons with psychiatric disabilities. Such service and legislative shortcomings were the main impetus for this project. Since their involvement in this project, the CIL partners have been actively involved in mounting a legal challenge to local mental health practices. They have also expressed interest in using our survey tool (Appendix A) to gather evidence in support of increased state funding for community-based long-term care supports for people with psychiatric disabilities. Their actions serve as a fine example of including psychiatric disability issues within broader disability advocacy.
Despite the demonstrated effectiveness of cross-coalition disability advocacy, such examples are rare (Lewis, 2013). While the independent living movement and the psychiatric survivor movement have shared philosophies toward disability, they have not typically overlapped in advocacy efforts (Beresford, 2000; Beresford & Walcraft, 1997). This project therefore has implications for the independent living movement, specifically CILs, which can play an important role in advocating for and supporting community transitions for persons with psychiatric disabilities.
Joining of forces between traditional mental health advocates and CILs is especially important in the current environment of fiscal crises. State general funds constitute nearly half of state mental health expenses. In recent times, at least 29 states and the District of Columbia have cut services and programs that enable people with disabilities to live in the community and to avoid institutionalization (Johnson, Oliff & Williams, 2011). While these cuts are broad-ranging, many of them disproportionately affect community mental health services. With their long-standing advocacy experience and their cross-disability focus, CILs can be an important ally in salvaging and enhancing community mental health services.
Greater inclusiveness and cooperation between disability rights activists and mental health advocates can also serve the added function of making mental health advocacy more mainstream. Some people with psychiatric disabilities tend to steer clear of advocacy lest their efforts be perceived as further evidence of their irrationality and impaired mental health. Advocacy strategies (such as sit-ins and hunger strikes), used to great effect within the broader disability rights movement, are also shied away from for fear of coming across as manifestations of 'madness' (Bresford & Walcraft, 1997; Lewis, 2013). Thus for mental health advocates to collaborate with disability rights activists would not only provide a critical mass but also garner greater acceptance and legitimacy of advocacy measures.
The findings of this study must be received with certain limitations in mind. The study findings and action steps are based on three participatory case studies, which, in turn, stemmed from focus groups and discussion forums with a broader group of people with psychiatric disabilities (Mirza et al., 2008). Being an in-depth qualitative study, findings might not be generalizable, but offer detailed insights that would be applicable to the broader group of people with psychiatric disabilities making institution-to-community transitions as well as community agencies that support these transitions. Another important limitation is that although community partners had a very high involvement in the research process, people with psychiatric disabilities who participated in the research had a lower involvement in the research design, especially in the second phase of the PAR project. An ideal project drawing from a PAR approach maximizes meaningful participation from all stakeholders (Selener, 1997). While the authors acknowledge that more could have been done to sustain participant involvement throughout the research project, it is worth mentioning that action steps and areas of support identified in this paper reflect the issues that the participants identified during data collection.
This paper contributes a distinct perspective to the field of disability studies by offering insights into community-based long-term care supports and institution-to-community transitions specifically for persons with psychiatric disabilities. Through an in-depth exploration of real-life experiences of members of this population jointly undertaken by university researchers and community partners, this paper highlights themes of social isolation, participation in virtual communities, variability of impairment experiences and unmet needs for community supports. In addition, this paper calls attention to service and policy gaps and advocacy challenges related to these findings, and suggests innovative strategies for addressing these gaps. Findings and action products from this study therefore carry distinctive practical value for future planning of services and programs for this population.
We extend our appreciation to the participants and community partners who made this research what it is. This research is sponsored in part through the National Institute of Disability and Rehabilitation Research, Moving out of the Nursing Home to the Community, grant H133G010033.
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This project is dedicated to the memory of Mark Karner. Without his passion for social justice and disability issues, the work would have never been realized.
- Given the lack of consensus on
appropriate, respectful terminology for this group, we use the term 'people
with psychiatric disabilities' (chosen by our study participants)
interchangeably with the more generic 'people with mental health
Return to Text
Survey Tool to Examine the Needs of People with Psychiatric Disabilities Living in the Community
Your Center for Independent Living wants to find out how they can serve people with psychiatric disabilities better. This survey will take about 10 minutes to complete. Please answer honestly—answers will be kept confidential. If there are any questions that make you feel uncomfortable, feel free to skip them. Thank you for taking the time to complete this survey!
Please circle the number that relates to level of
|Item:||Importance: "How important is it to you to…"||Satisfaction: "How satisfied are you with…"||Frequency: "How frequently do you…"|
|1. Have someone to talk with?||1 2 3 4||1 2 3 4||1 2 3 4|
|2. Have a peer support network?||1 2 3 4||1 2 3 4||1 2 3 4|
|3. Have someone to call you to see how you are doing?||1 2 3 4||1 2 3 4||1 2 3 4|
|4. Have someone to go to places in the community with you?||1 2 3 4||1 2 3 4||1 2 3 4|
|5. Have someone to help you with your housekeeping?||1 2 3 4||1 2 3 4||1 2 3 4|
|6. Have someone to help you with your cooking?||1 2 3 4||1 2 3 4||1 2 3 4|
|7. Have someone to help you with your shopping?||1 2 3 4||1 2 3 4||1 2 3 4|
|8. Have someone to help you manage your medicine?||1 2 3 4||1 2 3 4||1 2 3 4|
|9. Have someone help you manage your finances?||1 2 3 4||1 2 3 4||1 2 3 4|
|10. Have computer training?||1 2 3 4||1 2 3 4||1 2 3 4|
|11. Have computer/internet access?||1 2 3 4||1 2 3 4||1 2 3 4|
|12. Have educational assistance?||1 2 3 4||1 2 3 4||1 2 3 4|
|13. Have transportation?||1 2 3 4||1 2 3 4||1 2 3 4|
|14. Have affordable housing?||1 2 3 4||1 2 3 4||1 2 3 4|
|15. Have accessible housing?||1 2 3 4||1 2 3 4||1 2 3 4|
|16. Have services after you transitioned from the nursing home?||1 2 3 4||1 2 3 4||1 2 3 4|