The Institutional Conditions of the Life of People with Intellectual Disabilities (ID) in a Residential Care Facility

The paper is intended to show a system of institutional care for people with intellectual disabilities, which is characterized by a kind of ambivalence. The whole disquisition is based on two fundamental and dichotomous categories: control and subordination versus autonomy and independence. Each of these categories is connected with one of two perspectives within which a residential care facility can be captured. The first one arises from Goffman’s vision of a total institution, where a unit is presented as an objectified subject of other people’s actions, revealing a situation of isolation and personal dependence. The second perspective presents a model of relationships between the personnel and their charges; it is characterized by an individualistic approach toward the needs of people with disabilities regarding their right to autonomy and self-determination. The confrontation between these two perspectives and areas of issues is discussed in this paper.


Background
At the beginning of the 21st century, there was a gradual reform of the entire social welfare system in Poland. For this reason, the last two decades saw increased efforts to modernize and upgrade, but also to restructure institutional aid. This should involve shifting the center of gravity in the functioning of care facilities from places of medical care provision, where the main focus is on the health and physical safety of the residents, to people's needs, viewed from a wider perspective, which relate to both the psychosocial sphere and the emotions and feelings of the residents. These changes were directed toward "normalizing" the life of residents, with the idea of bringing the conditions of individuals' lives in a welfare institution closer to family life.
In this light, the aim of this analysis is to confront the assumptions and expected results of the reforms described above with their actual effects. I do this by referring to studies carried out in the community of staff and residents with ID of care facilities.
It seems that although there are now significant changes in the organization and operation of such facilities, they still have many characteristics of a total institution. From an institutional perspective, we are dealing with a model of strong subordination and dependence. All of this makes a residential care facility fit into the scheme of a total institution, which Goffman (1961)

Review of research
The literature highlights the need for support when public services are provided both in private homes (Harris, Beringer, and Fletcher 2016) and in appropriate institutions providing stationary care (Dunn, Clare, and Holland 2010). Most research focuses on the conditions and the quality of life of people with ID, and to a lesser extent on the contents of the services offered. Therefore, there is a need to put more emphasis on how the staff of different institutions involved in the care and assistance of people with ID negotiate the complexity of risk management and promote autonomy in their daily practice (Björnsdóttir, Stefánsdóttir, and Stefánsdóttir 2015).
Historically, people with ID have not been able to express their autonomy for a long time. People with ID lacked voice, authority, and control over their lives. They were not allowed to make their own choices because of the view that they would not be able to take care of themselves because of their disability (Carlson 2010). Only recently have people with ID been recognized as important contributors to discussions on ID (Wahmsley and   This translates into attention being paid to the competences and ethical skills of the individual staff members, as well as their ability to influence the charges and their self-determination. According to Wehmeyer, Abery, Mithaug, and Stancliffe (2003), self-determined behavior refers to actions that can be identified by four basic characteristics: the person acts autonomously, the behaviors are self-regulated, the person initiates and responds to events in a psychologically-empowered manner, and the person acts in a self-realizing manner.
Modern studies on disability emphasize that the autonomy and empowerment of people with ID is an extremely important issue on the road to normalizing their lives (Goodley 2000). This position is strongly underlined in international human rights documents and treaties, and should be a guideline for national legislations of individual countries. This is reflected in the construction of a modern model of assistance and support for people with ID in both community and institutional care.
It is now recognized that staff involved in day-to-day assistance and care activities play an important role in the well-being of people with ID, because they influence their daily decisions and needs. However, there is always the risk that individual employees will reflect stereotypical patterns and act on their projections and subjective beliefs (Dunn et al. 2010).
Hence, personal values and individual life experiences take precedence (Dunn, Clare, and Holland 2008) over objective values and standards regarding respect for the independence and self-determination of the residents.
Supporting people with ID can be understood as managing two potentially conflicting responsibilities. On the one hand, there is a duty of care that requires workers to support and protect their guests from potential harm to themselves or danger to others. On the other hand, there is a duty to recognize and promote the residents' autonomy and independence in life (Hawkins, Redley, and Holland 2011).
According to Olney (2001), workers often assume that people with serious dysfunctions, such as intellectual disability, are so incapacitated that they are not only unable to function independently (with specific support and as far as possible), but are not even able to identify and express their needs. Also, it appears that employees perceive their interactions with people with ID selectively, i.e. some communications are rewarded with attention, while others are ignored. Brown, Gothelf, Guess, and Lehr (1998) stressed that instead of prescribing and enforcing obedience in dealing with people with ID, it is much better to increase possibilities for their actual choices and autonomy. According to these researchers, people with ID often cannot express their needs not because they cannot do so, but because they have been "disciplined" over the years to be obedient. This is probably the key to how employees exercise power and use their positions, perhaps without even realizing that they do this. Instead, people with ID should be adequately supported in their quest for autonomy, and professionals should see them as competent communication partners, respecting their needs (e.g., Brown et al. 1998). Therefore, an important aspect of the care of people with ID is not only seeking greater involvement in their daily lives by those caring for them, but also teaching the carers respect for understanding the needs of their residents as well as the ability to support the charges' self-determination (Arndt, Konrad, and Test 2006).

Methods
The study that was used to write this article was part of a larger project devoted to showing the process of creating, maintaining, and reconstructing the social order in the context of interpersonal relations between the employees and the residents with ID of a residential care facility.

Characteristics of the field of research
The research material was collected during visits to residential care facilities in central Poland. All facilities operated in the public sector, and they were entities that performed national supportive and care tasks.

Ethical considerations
The participants were assured that all the provided information would be treated with anonymity and confidentiality; pseudonyms are used throughout the article for anonymization purposes (Saunders, Kitzinger, and Kitzinger 2014;2015). All quotations contain the participants' own words. Every interview was audio-recorded and transcribed verbatim.
The interviews were held in the Polish language; fragments of transcripts were then translated into English for the purposes of this article (own translation).

Data collection
The material for analysis embraced a total of 52 records from observations as well as 52 unstructured interviewswhich 32 were with personnel (and people from outside the residential care facility, hired in the center) and 20 such interviews with residents (of various levels of disability). The research covered both the charges (with various levels of intellectual and physical disability) and the personnel (including guardians, porters, social workers, nurses, therapists, and physiotherapists). Organizing the research in this way ensured data from various sources; this way, it was possible to compare cases with each other.

Data analysis
Data analysis was an iterative constant comparative process involving descriptive and interpretive analysis (Patton 2001). Both the analysis and the interpretation of the research material were conducted in compliance with the principles of grounded theory methodology (GTM) (Glaser and Strauss 1967;Glaser 1978;Strauss and Corbin 1990;Charmaz 2006).
Hence, the selection of subsequent cases for the research was of a theoretical character (ang. theoretical sampling) based on the constant comparative method. The work on the analytical and conceptual level was performed with the use of the NVivo program (Lonkila 1995;Richards 2005Wiltshier 2011.

Assurance of quality
I followed Lincoln and Guba's (1985) principles of trustworthiness as well as Charmaz's (2006)

validi-
The Institutional Conditions of the Life of People with Intellectual Disabilities (ID) in a Residential Care Facility ty guidelines for grounded theory. Theoretical saturation, the constant comparative analysis, trustworthiness, and validity checks all assured data quality and rigor.

Findings
A residential care facility is both a workplace for its staff and the space of daily existence for its residents. Thus, it is where two extremely different subworlds must coexist, forced to build one common organism. A residential care facility is a unique place where residents can realize the concept of self-determination, but it is also where their autonomy and freedom of action is limited. This limitation may be evaluated ambiguously. Despite the fact that it arises from the willingness of the people with disability to subordinate themselves to the control of the personnel, it is also performed with the consideration of the well-being of the charges themselves, who are not always able to take proper care of themselves.

Planes of control versus autonomy in residential care facilities
In both institutional and interpersonal dimensions, residents' lives as well as the work of the staff, are determined by the scope of acceptable control of the staff of the care facilities and the autonomy that the residents themselves can achieve. In this paper, these two dimensions are confronted at the level of managing time and space as well as at the level of the body and the sphere of the residents' corporeality.

Space and time
Space organizes the interpersonal relations between the residents and the staff of a residential care facility.
The space is symbolically constructed in the course of social interaction between these two groups.
How it is understood and determined will greatly depend on the social context of the actors within the interaction. In some sense, the space creates the con- They approach us all the time; they try to take something more out of us. Sometimes it's a specific thing, let's say a simple candy, and sometimes they just want to come to us and sit for a while. But it's like, when one comes inside, and we let them, another one wants to come as well. They sometimes argue about it. We try to be careful, but it's sometimes impossible. (a nurse) A significant division is the differentiation between interpersonalspaceand structuralspace, which also serves to categorize the space. The former one refers to interpersonal relationships between social actors.
It determines the boundaries of physical closeness and the emotional engagement of the personnel, i.e. the scope and character of their contacts with the residents. The relationships might be direct, encroaching on the personnel's private sphere. However, they can also be specified with a cautious attitude of the guardians, or (mental) isolation from the residents (as far as it is possible). Hence, the workers may decrease the spatial distance. Conversely, they might shield themselves from close contact with the charges, thereby creating the corresponding emotional atmosphere in the facility.
When they come to sit with us, it's ok. But they also want to use it then, because they must think that if we allow them to sit here, then we'll also allow them to do other things. And since they are with us, they'll play up to us, and it actually happens that we do what they want. It's like that saying, "what the eye does not see, the heart does not grieve over." (a social worker) The closer the interpersonal relationships between the personnel and the charges, the smaller the distance in the structural dimension between the two groups. The structural dimension of space can be divided into several basic subcategories (Goffman 1979). They include "open spaces" -always available for the charges, with some exceptions (e.g. rooms, bedrooms); "semi-open spaces" -with common access, but limited to daytime or particular moments in the resident's life (e.g. rooms for therapy and rehabilitation); and "closed spaces" -always out of bounds (e.g. facilities with medicaments).In the structural dimension, there is also a possibility to divide the space into "available," "unavailable," and "common." This refers to the situation and factors that characterize the person with ID, e.g. health, degree of disability, etc. In such a case, the availability is not decided by the personnel, but by the individual features of each charge.
It depends on the person. Those more capable have more possibilities than those who are bedridden. We try to help everyone, but our number is limited. So, when a resident is relatively independent, it's easier for them to move, so they can do more things then. Apart from the availability of space, a factor that determines how the life of the residents is constituted is how time is organized. There is a clear rationing of time devoted to particular actions, which is connected with how the day is divided. The most significant points in planning a day in a residential care facility include those connected with fulfilling basic needs, e.g. sleep, meals, or physiological needs.
The possibility of fulfilling "higher-level" needs recedes into the background.
It is worth underlining that almost all of the residents' life events become subjected to schematic reproduction. Thus, a conformist attitude of the charges is constructed, which creates conditions for the surveillance and control over the residents.
Which activities will be performed when depends on the day plan imposed on the charges. In this respect, the resident is left with no choice. We know when the time of the canteen fund and shopping is getting closer, there's a lot of fuss then.
But also, after the shopping, when they get the donuts, then there's this hullabaloo. We've been doing it for a while, so we know what to expect then. (a social worker) The category of "awaiting" is also inscribed in the temporal perspective of the actors' actions. Usually, this is waiting for something that can -or, according to those waiting, will -happen in the future. However, neither the aim nor the time when it is to be fulfilled need to be precisely specified. In a residential care facility, the category of awaiting is understood differently, depending on whether it corresponds to the personnel or the charges. For the personnel, the time perspective is usually "closed," meaning that the target point of carrying out the tasks is determined and, possibly, entirely predictable, and the aim is particularized. On the other hand, the perspective of the time of awaiting by the charges is "open," which means that it is hard or even impossible to specify when the aim will be fulfilled. The aim itself is somewhat unreal and hard to fulfil.
Even if I wanted to, I can't do many things with them, because I don't have such legitimation, or this is what the regulations say, or you can't do it because they have their limitations, and so that's that. Another thing is that they sometimes have ideas, but it still changes a lot. Of course, I'm happy when I can communicate with them and find out what they want directly, but they are often rather unreal expectations.

Body and the problem of its integrity
In a residential care facility for individuals with intellectual disability, two main notions need to be settled -first, to what extent the body of a resident is subjected to their own will and is actually con- getting" about the feelings of shame and intimacy, which degrade gradually. The residents' privacy is not only minimized; their most intimate situations are even exposed. It also applies directly to the resident's sexuality. In this case, and officially for health reasons, the personnel attempt to prevent uncontrolled sexual behaviors. However, at the same time, in informal conversations, as a reason for their supervisory actions, they are an area of "concern" about their charges' "personal interests." Thus, the personnel's attitude toward the problems of their charges' sexualityincorporatesan ambivalent shape. On the one hand, they put the well-being of the charge first. On the other, perceptions of the charges' sexuality are conditioned by a concern about the potential consequences of the charges' sexual activity, not only for themselves, but also for the employees.
I mean, it's generally hard to discuss stuff like this, because they have a right to the same things as others.
And they have their needs, too. The fact that they're sick doesn't mean that their needs are eliminated. It's a natural order of things. But we also take responsibility for them, and we can't allow such situations. If This ambivalence of sexual attitudes is not only limited to the problems of denying the charges' sexuality, but it also refers to informally allowing the residents' sexual behaviors. Therefore, there is a kind of game of preserving appearances and not seeing the problem, and there is a common "quiet permission" of personnel, doctors, and psychologists to these sexual behaviors. In the official discourse, in the formal framework of conversations between experts in a given field, such notions are rarely encountered, but they are entangled in less official discussions. The body is also a form of expression and a space for the residents to articulate themselves. Therefore, what a resident consciously does with their body, and how they do it, is a symptom of what they currently need, lack, or expect from the environment, thus signalling specific needs. Hence, the residents are not completely deprived of the chance to create messages through their bodies, and not only in accordance with their intentions, but also in order to manipulate others (e.g. faking politeness). Manipulating the body is an attempt to obtain living space and expand the scope of their autonomy. Therefore, the corporeality of a person with disability can be looked at from two perspectives. The first one relates to natural and uncontrolled physiological reactions, independent of the person with disability. They include any kind of stereotyped movements, reflections, but also limited control The Institutional Conditions of the Life of People with Intellectual Disabilities (ID) in a Residential Care Facility over the basic physical processes and physiological needs. The second perspective refers to the body as a space for the resident's actions. They "use" their corporeality as a tool which they control and through which they have a certain power over the environment. It is a relatively "fragile" power, based on triggered emotions of the staff (e.g., empathy or compassion) and their "weakness" toward the charges (e.g. the fact of being a favorite). It also evokes certain affective states in the personnel and might include actions that lean toward misleading the personnel or which hide the resident's actual emotional state (e.g.simulating malaise to avoid certain responsibilities).

Between control and autonomy -the ambivalence of principles and values
Referring to the nomenclature of Erving Goffman There was no elevator in the past; there were no beds with wheels. This facility was more closed in the past, and, for example, people who were bedridden, less capable, did not go outside, right? Because there was no such possibility [raised voice -note by the author]. Only the head created such a possibility, so we started to take them out, right? (a therapy leader) Referring to the concept of a total institution, it can be concluded that the charges are somehow en-slaved and subjected to the actions of third parties without any influence on their own life and fate.
Although it significantly overlaps with my observations, it would be wrong to state that the power and control that the personnel have over the residents is practically unlimited. Among the limitations of permanent control are those that relate to personal and institutional determinants, including the formal rules and standards to which employees must adhere. Thus, the power that they are subjected to needs to be properly controlled and limited to the minimum that is necessary to fulfill support and welfare functions and tasks. Therefore, it comes down to the level of control that will allow the organization to function properly and enable employees to carry out tasks with minimal discomfort for the residents. A general principle that theoretically applies to the members of staff is that control must not harm or be bothersome for the charges. However, it needs to serve them by protecting their lives and health against their actions as well as the behaviors of the other people with disability. The aspect of providing control and life protection is one of the motives to rationalize control over the charges. Power and control are held for the "good" of the residents, and they are essential to carry out basic care and welfare tasks.
We supervise, so it's quiet and no one harms themselves. Maybe they'll dream about something; maybe they'll start sleepwalking and jump from the second floor. So, we're here at night to watch them, supervise them, so nothing bad happens to them. So, when he walks away, we don't know if he is going to the toilet or for a cigarette, or if he feels bad, or maybe he'll fall down in a minute, or vomit somewhere in the bathroom. You need to have the eyes at the back of your head. (a nurse) Therefore, the control has two faces here; one totalizes and appropriates the subjectivity of an individual, while the second one is connected with the responsibility that the personnel bear for their mentally-handicapped charges. Control and responsibility create a closed system, directly influencing the interpersonal relationships between the personnel and the charges. By assuming the role of a supervisor with a wide range of control over a resident, the staff take on more than just a burden of responsibility.

Opportunities and areas of self-determination for the residents
At the same time, the situation of the people with disability depends not only on the formal regu-The Institutional Conditions of the Life of People with Intellectual Disabilities (ID) in a Residential Care Facility lations of the welfare institution, but also on the personnel who follow those rules. The residents are not totally without influence on their fate and the protection of their own rights and freedoms.
Their role does not finish with a passive and fatalistic approach that focuses on awaiting help and understanding from the workers. It needs to be stated that despite the interference of the personnel in the charges' lives, aperson with disability has the right to decide about and determine their own lives.
They're bossy in their own ways -they don't allow you to hurt them. They are aware that they're in the majority, which is good for them, and they take care of it. Let's take Agatka, for example. She can do it by herself, and she wants to clean on her own, arrange her things as she wants to. And even if it's not great, she does it on her own, and she's happy tivities. An element of the residents' self-determination -managing a certain sum of money, i.e. the so-called economy training -is also inscribed in the therapy framework.
The residents have their money. That is, they have their sub-accounts where this money is collected.
If a resident is incapacitated, then we, i.e. the legal guardians [sometimes the family -note by the author], administer the money. But if a resident is not incapacitated, then they can spend this money as they want to. We try to make sure they don't spend this money on something stupid, and we ration these funds a little, otherwise they'd spent the whole amount on the first day. But this is their money, and they have the Therefore, when considering matters of the residents' freedom of movement, one must take into account numerous interconnected limitations. They are conditioned by the unique principles that exist in the facility, as well as by the residents' skills.

Discussion
In the context of, on the one hand, picturing the control and surveillance system in a residential care facility, and, on the other, stressing the need to imple- The literature repeatedly stresses that the basis for practicing care work is the professional relationship created between the staff and the patient (Marsland, Oakes, and White 2015;Trip et al. 2016). These issues also need to be considered more broadly, as not only carers but also medical care providers (doctors) need to have an adequate understanding of people with ID, as shown by the research conducted by Lennox, Diggins, and Ugoni (1997) or Crocker (1988), among others.
It should, therefore, be the responsibility of the staff to neutralize the effects of the stay in the facility, including the control and dependency of the residents. However, as suggested by the outcomes of my research, in a residential care facility, we are dealing with the process of "standardizing" control, i.e. inscribing it somehow into the canon of ordinary actions while carrying out tasks (Sumskiene and Orlova 2015).
To sum up, it can be concluded that the control that is present in a welfare home is inscribed in the main trend of personnel's actions, and it seems that it constitutes an indispensable element of their pro-

Concluding remarks
The matters discussed in this paper provide infor-