From Quality of Care to Quality of Life for People with Intellectual Disabilities

Dismantling Institutional Care

Dr. Jos van Loon & Prof.dr. Geert Van Hove

Dr. Jos van Loon works at Arduin, a organisation providing services for people with intellectual disabilities in the Netherlands and at the Department of Special Education at the Ghent University in Belgium.
Prof.dr. Geert Van Hove works at the Department of Special Education at the Ghent University, Belgium.

Adress for correspondence:
Dr. Jos van Loon
Arduin, Seissingel 4,
4333 GV, Middelburg,
the Netherlands
Email: Jloon@arduin.nl

Abstract
Background
Ten years ago, in the institution Vijvervreugd, the quality of care was seriously under discussion. Fundamental change was necessary. Vijvervreugd became an new organization: Arduin. A course of action was developed. Persons with intellectual disabilities should be enabled to decide themselves in their lives.

Method
Action research followed the transition process This action-research studied how the emphasis on emancipation and self-determination was realized, and to which changes this, and the choice for deinstitutionalization consequently, has led.. We studied the developments in perception, the deinstitutionalization process, and the consequences for the practice, for clients, parents and staff.

Findings
 It was concluded that good quality of life for people with I.D., with inclusion, self-determination and personal development as essential dimensions, cannot be achieved in an institution: deinstitutionalization is the only alternative. This appears feasible also in the Netherlands. Good medical care in community support is possible, if specialist support (for general practitioners) concerning disability-related problems is well organized. Staff, working in an institution, are not automatically trained to support people in community based situations. Clients, staff and parents / relatives are positive on the change.

Discussion
If we want to realise good quality of life for people with I.D., living in institutions, this institutional care as such is the most important hindrance. An adequate community based model, in which the care-paradigm is replaced by the supports-paradigm, is needed.

Introduction

In  1994, in Vijvervreugd, an institution for people with intellectual disabilities in Middelburg, in the southwest region of the Netherlands, a crisis situation had emerged. The situation there had gotten seriously problematic, with regard to the management, but more important, with regard to the quality of care for the residents. A new management team was appointed to improve the organisation and hence the life on the clients involved.
Prof. Van Hove from the University of Gent was asked to do a research into the quality of care of the people in Vijvervreugd. His research demonstrated that there was insufficient quality of care in several respects. There was criticism on the quality and quantity of the daily activities and 280 people lived in large-scaled wards on the campus. The research lead to the conclusion that 35% of the residents of Vijvervreugd was fallen through the care net, at least 40 % of the total population was at risk, and for only 62 of the 277 clients (22%) their well-being could be labelled as ‘good’ or ‘very good’ (Van Hove, 1995). The wards of Vijvervreugd appeared to be a place to stay, but not a home, not a place to owe one’s identity to. In addition to this, privacy was a large bottleneck. And so there were more points of criticism.
Fundamental change was necessary. Vijvervreugd became an independent organization under the new name Arduin, by January 1 1996. A course of action was drawn up. Especially the emancipation and self-determination of people with intellectual disabilities was the most important starting point for quality of life (Van Loon & Van Hove, 2001).
It was decided to follow the process of change through research.
Arduin transformed from an institution on a campus to a transmural organization with living, work, supports and schooling for people with intellectual disabilities, with over 125 houses in 25 villages and towns, and full-time work or daily activities in 21 workshops, factories and in daycentres for people with intensive needs of supports.
The intent of this research was to study the ways in which the emphasis on emancipation and self-determination with the clients of Arduin could be realised, and to which changes the emphasis on emancipation and self-determination and the choice for deinstitutionalization consequently has led,

Method

On the basis of the formulation of the problem as mentioned we chose explicitly for action research. Action research is after all in essence a combination of research and change. Who is doing action research, not only wants to acquire knowledge, but also wants to (help) change or improve things (Dick, 1999). If one wants to know what is possible, this is done best by changing things and see how far one can get. Bouverne–De Bie (1989) defines action research as: a form of acting, in response to a problematic situation, in order to change this situation in collaboration with the people involved and aimed at theory development. Action-research can be positioned within the qualitative research strategies (Bouverne-De Bie, 1989) which are often used from emancipatory perspectives.
First we studied the theoretical framework for the changes needed. Over the past years, changes have become apparent in the way of thinking about people with intellectual disabilities (Luckasson, 1992; Luckasson, 2002; Rioux, 1994, 1997). Thus the emphasis is put on the question of what type of support an individual requires in order to lead a better life. Further we based on the shifting paradigm in the concept of care for people with intellectual disabilities (Bradley and Knoll, 1990 and Van Gennep, 1997), on human rights, criticism on institutional care throughout the years, and of course on literature on quality of life.
We also studied the discourse on the quality of care and the quality of life approach to services and supports for persons with ID and we studied successful ways to implement quality of life in a culture dominated by thinking in terms of quality of care (De Waele, 2005).
In the Netherlands and Flanders sometimes the importance and the possibilities of deinstitutionalization for people with intensive needs of support, especially for people with severe challenging behaviour or with severe or profound intellectual disabilities, is questioned. We therefore paid special attention to these groups in our research by means of two case studies.

At last, several studies were carried out among clients, parents / relatives and staff-members to learn about their opinions about the consequences of the deinstitutionalization process for the lives of and the quality of life of clients. Among others, we did this through focus groups with clients (van Loon, 2001) and, with help from students from the department Special Education of Ghent University, through interviews with clients, asking their opinion on the effects the deinstitutionalization process had on their life (van Loon, 2001; Depuydt & van Loon, 2002). In view of the involvement of the first author with the organization, the Arduin management team over the years decided to let an independent research institute, the Netherlands Institute for Care and Welfare (NIZW)  carry out an evaluative study. Researchers of the NIZW carried out an elaborate evaluative study. To begin with, students from the department Special Education did a large number of interviews with clients and/or proxies. In addition, three years in a row focus groups were held with clients, personal assistants and parents/relatives. Further more, studies have been carried out among a random group of 100 personal assistants and 100 parents / relatives through questionnaires. Besides that, Buntinx of the University of Maastricht has examined how the clients’ family experienced the quality of support and their satisfaction about the offered care. He also examined how staff-members experienced work satisfaction, role clarity and autonomy (Buntinx, 2003)

Results

Over the past years, changes have become apparent in the way of thinking about people with intellectual disabilities (Luckasson, 1992; Luckasson, 2002; Rioux, 1994, 1997). We mentioned in particular the shifting paradigm in the concept of care for people with intellectual disabilities (Bradley and Knoll, 1990 and Van Gennep, 1997). With regard to quality of life I described the principles concerning quality of life as set out by Schalock (1996). We concluded that the dimensions in quality of life that are essential to organize a shift in services to people with intellectual disabilities are: inclusion, self-determination and personal development.
The study of literature about deinstitutionalization shows that in many countries the number of places in institutions is considerably reduced. There is a  multitude of factors that brought about the processes of deinstitutionalization and summarized the abundant evidence concerning the positive effects of deinstitutionalization for service users.
The effects of deinstitutionalization are mentioned in literature as follows (De Kock, Saxby, Thomas and Felce, 1988; Larson and Lakin, 1989; Larson and Lakin, 1991; Emerson and Hatton, 1996; Ericcson & Mansell, 1996; Tuvesson and Ericsson, 1996; Stancliffe & Abery, 1997; Tossebro, 1999):

Main Findings

I. If we want to realise a good quality of life for people with intellectual disabilities, living in an institution, this institutional care as such has to be seen as the most important hindrance. In our action research project particular dimensions of quality of life as inclusion, self-determination and personal development seemed to be of paramount importance. This is why a good quality of life for people with intellectual disabilities cannot be achieved in an institutional environment and deinstitutionalization remains as the only alternative.

Our research demonstrates that it are the dimensions inclusion, self-determination and personal development that make the difference and that show where the limits are for a good quality of life in the traditional institutional care. International research, especially by the research group around Wehmeyer, supports these findings, and underpins them statistically with matched groups. They found that people who reported a higher quality of life were also identified as more self-determined (Wehmeyer & Schwartz, 1998), and that people who lived and worked in community-based settings (=inclusion, JvL), were more self determined, displayed greater autonomy, were able to make more choices and were generally more satisfied than their peers who were matched on intelligence and age, and who were living or working in community based congregate settings or non community based settings (Wehmeyer and Bolding, 1999). Bradl (1996) in Germany argues: “However different the institutions developed over the years, there are generally circumstances, that structurally complicate a self-determined life of the people for whom these institutions actually are established, or even make it impossible. These structural boundaries of self determination in the institute are inherent to the institutional system itself.”

II. Given the experiences in Arduin, the development of a new model of services, which includes deinstitutionalization of institutions for people with intellectual disabilities, appears feasible also in the Dutch situation, as it already is realised in many countries.

Because, in order to achieve a good quality of life for people with intellectual disabilities, institutional care is no longer an option, the former residential facility situated on one campus is abolished. A facilitating organization was built up (to replace the old institution) focused on support of the self-determining client. The separation between the three life spheres – accommodation; work; leisure time – is of fundamental importance in this process. People live in normal houses in the community, spread about the region, work full-time in a great variety of businesses or day-centres, spread about the region, they choose themselves where they want to live and work. There is no more board of placement for living, nor for work. In the case of children who cannot stay with their own parents, it is the policy to look for a foster family in the first instance. A lot of people live in their own houses, which seemed not possible before, and when people still live together with other people with intellectual disabilities, it is with far less people then before, the average being 3,9 per house. This process of deinstitutionalization led to an organization that can be managed within the former financial framework (Van den Beemt, 2003; p.35).
The findings of independent research projects show that, where at the start of the process there was doubt with some parents / relatives and staff regarding the feasibility, and concern regarding the outcomes for their relative or their clients, the consequences of deinstitutionalization for the quality of life for the clients are now experienced as positive, as seen from the perspective of the clients themselves, the parents and the supporting staff members.
Parents as well as staff-members are of the opinion that quality of life has improved drastically. The family of clients of Arduin, in general, also values positively the quality of supports; over 81% says to be satisfied; over 21% even is very satisfied.Our research results track with results of the evaluation of deinstitutionalization on this topic in other countries (Larson and Lakin, 1991; Tossebro, 1996; Tuvesson and Ericsson, 1996). These colleagues state that people are positive with regard to the consequences of the process of deinstitutionalization once it is realised. Before the realisation one encounters resistance to change mainly of professionals and some family members.

III. Developing a new model of services, aimed at realising a good quality of life for people with intellectual disabilities is more than deinstitutionalization, as deinstitutionalization is more than closing institutions: much attention is needed to develop an adequate support model or support system for people with intellectual disabilities.

Especially the simultaneous development of a support model was important in Arduin in order to give people with intellectual disabilities real opportunities in a deinstitutionalized setting. One cannot just close the institution and move people to houses in the community.
The new model of services, the Model Arduin (van Loon & Van Hove, 2001), we developed can be summarized as follows.
The Model ‘Arduin’

In our research project we learned that Quality of Care on his own is not a guarantee for Quality of Life. One needs a supports-paradigm instead of a care–paradigm: a support-paradigm where the control is for the person, not for the system of care. Radical changes of perspective and discourse in an organisation, are necessary and this requires strong leadership, nerve and flexibility to change. In table 1 some essential differences between Quality of Care and a Quality of Life Focus are summarized.

Table 1:  Essential Differences Between a Quality of Care vs. Quality of Life Focus

And as the supports-paradigm replaces the care-paradigm, services should work on a quality system that controls the way the supports are given. Arduin in this respect has chosen to go for an ISO 9001/2000 certificate (Van den Beemt & Brouwer, 2004) and was certified in November 2004.

IV. a)  Within an individual, limitations often coexist with strengths.
      b)  With appropriate personalized supports over a sustained period, the   life functioning of the person with mental retardation generally will improve.
   These statements are assumptions of the 2002-definition of the American Association on Mental Retardation (Luckasson, 2002). The experiences in Arduin validate this assumptions. As one can see everyday in the practice of the lives of some 400 people who now live in the community, of whom 270 used to live in an institution, people appear to manage to live in the community, to have their work or daily activities and their free time in the community, to have plenty of contacts in the community. And it is not just that they manage to do so; they continue to grow in their abilities. As a result many of them have fewer support than before. Some 28 people nowadays even live on their own (plus 8 people who live in couples) with far less support than was thought possible in the former institution. Almost all clients of Arduin have fulltime work or daily activities and show tremendous growth in their abilities in this field.  Many clients also participate in any form of schooling. Every year more children with intellectual disabilities participate in inclusive education in regular schools with other children. Improvements in environmental conditions or the presence of needed supports positively impact an individuals ability to meet the routine demands of life. As a result the life functioning of the person generally improves and, in rare cases, the diagnosis of mental retardation might no longer apply.
The findings as reported in the studies in Arduin concerning the improvement of live functioning of individuals can be summarized as follows:

In their Supports model, the AAMR (Luckasson, 2002) mentions five personal outcomes of supports: independence, relationships, contributions, school and community participation and personal well-being. The concept of independence as outcome of supports needs further discussion. Perhaps the most important dimension in a persons quality of life is self-determination. To be able to speak up for yourself is the fundament for quality of life. Many authors emphasize the importance of the relational aspects in the concept of autonomy and the promotion of a good quality of life. Van Gennep (1997) argues that choice and control have to be seen against the background of a social net. In the citizen-paradigm, choice and control is, next to the primary importance of the community, the quality of life of every citizen and the importance of supports, an essential factor (Van Gennep, 2000). In this paradigm the person gets support to be more and more in control in his own life, although complete control is never possible, but that is the same for all people. As Reindal (1999) points out, personal autonomy should not be confused with an ideology of independence. Professionals tend to define independence in terms of self-care activities. So, independence is measured against skills in relation to performance of these activities. Disabled people however, define independence as an ability to be in control of and make decisions about one’s life. The notion of ‘control in principle’ implies that the individual is in control of his / her life although others may do the physical or intellectual performance of certain tasks. Reindal argues that this interdependence is essential for the human condition. Thus, the concept of self-determination can be seen as a fundamental principle for all people, also for people with intellectual disabilities. Therefore we would like to argue for substituting the concept of independence in the outcomes of the support model for the more relational concept of  interdependence.

V. Our research results show that a good medical care in the case of community support can be established, if specialist support (for the general practitioners) concerning disability-related problems is well organized.
The approach taken to health care was re-organized. All clients have their own GP who provide primary health care on an individual basis. These 36 GPs are contracted by Arduin and paid by Arduin for their services. In addition, Arduin employs a registered AVG, (a physician specialised in the care of people with intellectual disabilities) who can be consulted or called in by the local GPs. As to the allocation of responsibilities, the GP is responsible for treatment of acute and everyday medical matters, while the AVG provides additional support for more complicated matters such as psychiatric problems and challenging behaviour, nutritional disorders and epilepsy.
The results of the survey indicate that: (1) GPs rated the overall quality of the medical care provided to Arduin clients to range from very good to normal; (2) participating GPs are generally supportive of the idea that people with intellectual disabilities should be a patient in a normal GP practice; (3) they perceive themselves adequately equipped to provide primary medical care to people with intellectual disabilities; but (4) regard as important the availability of external expert advice, in this case from the AVG.

VI. When we study the consequences for special target groups in the population of people with intellectual disabilities we see that it obviously is possible to successfully introduce supported living. Furthermore we could conclude that the change in the organization also contributed to the quality of life of a man with severe challenging behaviour and that the focus on quality of life and deinstitutionalization applies also to people with challenging behaviour.

As Van Gennep (2003) points out there is a splitting in the Netherlands, a bisection, in the support of people with intellectual disabilities. One the one hand 32,000 people with mostly moderate or mild intellectual disabilities are supported in the community: this mainly concerns people without additional problems (multiple handicap, or psychiatric and behavioural problems). These people profit from the new insights. On the other hand still about 32,000 people with intellectual disabilities live in institutions: this mainly concerns people with severe or profound and / or multiple disabilities and people with an intellectual disability and severe psychiatric and behavioural problems. Obviously one is inclined to think that people with severe or profound and / or multiple disabilities and people with an intellectual disability and severe psychiatric and behavioural problems are better of in an institution. The same conclusion applies also to other countries. As Holburn (2000) puts it: “Despite massive shifts in spending and paradigm philosophy the old paradigm still endures for over 100.000 people in the U.S. today.” Studies by Van Gennep (1989), and Vreeke, Janssen, Resnick en Stolk (1998) show that living in an institution is especially unfavourable for people with severe or profound and / or multiple disabilities. We studied the possibilities of supported living for a woman who needs intensive support. In terms of Quality of Life we can conclude that the domains most central to the quality of life – inclusion, personal development, and self-determination – also made the difference for her. A clear improvement in the quality of her life was noted and had positive effects on her emotional well-being and interpersonal relationships. Together with O’Brien (s.d.) we dear to assume however that the simple fact of her living there enriches the community. The case of J., a man with autism and severe challenging behaviour, shows that the change in the organization was contributing to the quality of life of this man. The focus on quality of life and deinstitutionalization applies also to people with severe challenging behaviour. They will need special attention in certain aspects of their life, as in the case of J. with regard to his autism. This special support however is always to be seen in function of an enhanced personal independence and productivity, greater participation in an interdependent society, increased community integration, and/or improved quality of life (Thompson, Hughes, et al., 2002). It is directed at inclusion, not at exclusion.

VII. One of the problems we encountered in deinstitutionalization and the reorganization of Arduin in terms of support, was that the staff members who were trained to work in an institution are therefore not automatically trained to work in supporting people in community based working and living situations. A new profile for this profession is suggested.

The changeover from offering care to support meant for a lot, if not all that they had to rethink their function. This applied especially to those staff that, because of their expertise, had a more directive or even decisive role in the past (nurses, behavioural scientists, therapists, etc.). They had to use their expertise now in order to eliminate impediments for and in clients, to help people to develop themselves and to optimise support. They were asked to work in this different role and in other circumstances. This means that in, the process of deinstitutionalization, a lot of attention was and is needed for schooling and coaching for staff and for quality management, in fact on an ongoing base.
A recent development is that the organization Arduin now has, in co-operation with two training colleges and two other organizations working for people with intellectual disabilities developed a new schooling for Support Workers in the Netherlands. This schooling started in 2004. In this schooling we want to base on the new demands on staff, from the concept of support and directed at a good quality of life. We defined the profile, and as such the competences a support worker needs, for this schooling as follows (Projectplan, 2003).
In general, and in line with the definition of supports, the support worker is someone who can promote the development, education, interests, and personal well-being of a person and who can contribute to enhancing the individual functioning. Working as a support worker presumes that this professional offers and / or organises supports, that the person needs to function within his environment, with a respectful attitude to the own choices and to the dignity of the other. This person has to have the flexibility and multi-availability to be able to deal well with the variety of support needs one can be confronted with, with a client who participates fully in the community, and with as a matter of principle the intention to make oneself unnecessary in time.

Conclusions

A overview of the literature on deinstitutionali­zation shows that in many countries the number of places in institutions is considerable reduced, sometimes even to zero. There is there is a multitude of factors that play a part in deinstitutionali­zation and abundant evidence concerning the positive effects of deinstitutionali­zation for service users (De Kock, Saxby, Thomas & Felce, 1988; Larson & Lakin, 1989; Larson & Lakin, 1991; Emerson & Hatton, 1996; Ericcson & Mansell, 1996; Tuveson en Ericsson, 1996; Stancliffe & Abery, 1997; Tossebro, 1999). These effects are summarized in table 2. . Also listed in this table are the findings from the studies in Arduin among clients, parents and staff of Arduin (Van Loon, 2005). The same pattern arises from the evaluative studies in Arduin as elsewhere in organizations in other countries. Of course, the staff-members and parents / relatives  also mention in these studies several concerns and working-points, e.g. concerning the social networks and leisure activities, the choice that is not enough available in every aspect, the quality of the primary care, the number and continuity of personnel, but the overall picture definitively is positive and in accordance with results elsewhere. Moreover, most points of concern are not focused at the deinstitutionalization as such, but at the support of clients as such.
Our research results track with results of the evaluation of deinstitutionalization on this topic in other countries (Larson and Lakin, 1991; Tossebro, 1996; Tuvesson and Ericsson, 1996). These colleagues state that people are positive with regard to the consequences of the process of deinstitutionalization once it is realised. Before the realisation one encounters resistance to change mainly of professionals and some family members.

Table 2: The effects of deinstitutionalization in Arduin compared with findings in literature

With respect to how the principles of inclusion, self-determination and personal development are brought into practice, and to which consequences this led, it was especially the simultaneous development of a support model that was important in Arduin in order to give people with intellectual disabilities real opportunities in a deinstitutionalized setting.
Radical change of perspective and discourse is necessary and should be well managed, making use of person-centred planning, supports paradigm and empowerment for both staff and clients. Therefore outcome-based evaluation is crucial. Focussing on quality of life puts precisely an emphasis on long term person referenced outcomes within the topics of inclusion, self-determination and personal development. This leads to a supports-paradigm instead of a care–paradigm: a support-paradigm where the locus of control is  the person, not  the system of care.
This research demonstrated that it is difficult to implement quality of life thinking in a culture dominated by quality of care thinking and it demonstrates the desirability and the opportunities of deinstitutionalization and the support-paradigm in view of the quality of life for people with intellectual disabilities. The overall picture is a positive one. Given the experiences in Arduin, the development of a new model of services, which includes deinstitutionalization of institutions for people with intellectual disabilities, appears feasible also in the Dutch situation, as it already is realised in many countries.
As to the feasibility of the development of a new model of services, the Arduin Model as we called it, perhaps the main limitation in our research is that the implementation of such a radical change of perspective and discourse in an organisation, and as such the possibility to copy it, requires strong leadership, nerve and flexibility to change.
There remain however many questions within this broader theme that I am not inclined to see as limitations, in view of our results, but that can and should be addressed in future research. One can think here of: the concept of autonomy for people with intellectual disabilities, especially the relation between supports, autonomy and interdependence, the question of the quality of life for people with multiple profound disabilities and for people with severe challenging behaviour, who need, because of the possible consequences of their behaviour, a restricted environment, the possibilities for inclusive education for all children, the social network of the person with an intellectual disability, especially for people who sometimes for years were segregated from community.

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