Users views in the process of changing an organization
Jos van Loon
Stichting Arduin
Beatrixlaan 24, 4461 PN Goes
The Netherlands

I. Introduction
On a large scale people with learning disabilities are going through a process of emancipation and growing awareness. Fundamental moves are being made in the development from a position of dependence of many years’ standing towards one of self-determination.
In Arduin a former institute, a day nursery and a day center for adults, have merged.  At present Arduin, an independent organization since 1 January 1996, has about 600 clients.
In 1994, when the organization formerly known as Vijvervreugd came under new management, there was insufficient quality of care in several respects. An independent inquiry, carried out by Prof. G. Van Hove from the department of special education at the University of Gent (Belgium), reached the conclusion that 35% of the inhabitants of the former Vijvervreugd had fallen through the care net.  With the help of substantial political pressure, an unraveling committee and a support committee, Arduin became an independent organization and a course of action with the title ‘Het gaat nu echt gebeuren’ (‘It really is going to happen now’) was drawn up.
The emancipation and self-determination of people with learning disabilities has been positively adopted as fundamental in order to secure the best possible quality of life of the clients.  The client is being encouraged in several ways in a development from a position of dependence towards self-determination. The services provided by the organization had to be adjusted accordingly and are also going through a transition from ‘providing a total care service’ towards ‘offering the support that the client desires’, not more, not less.
The backgrounds for this development are found in the changing views on the nature of mental disability (the definition by the American Association on Mental Retardation, AAMR (1992); disability studies), criticism of institutional care throughout the years (Rosenberg,1994; John O’Brien and Connie Lyle O’Brien,1993; Van Gennep, 1976; Van Hove, G.,1996; Erving Goffman, 1962; Vreeke, Janssen, Resnick and Stolk,1998), the Universal Declaration of Human Rights etc. An article on the process of Arduin and its backgrounds is published in the journal Disability and Society, of March 2001.
The dimensions in quality of life that are seen as most essential in the innovation are inclusion, self-determination and personal development. With respect to the actual provision of support, it is important that the implications of the emancipation cornerstone are carried through consistently in all of the resolutions made.
This was accentuated in the choice to dismantle the institution, as well as in choosing a coaching style of management directed towards autonomy and self-direction. It is however crucial that a good alternative is introduced in the shape of a service directed towards the support of people with learning disabilities.
In the proceeding process the opinions of the clients play an important role in structuring the new organization, as, at the start, they were interviewed regarding their wants, but actually more by way of the choices they make in the vacancy bank, the housing bureau, the courses in the educational center, etc. In this clients are supported by their personal assistant.
To evaluate these changes, during the process focusgroups with clients were held, and extensive interviews were done with some 20 clients and their relatives to picture how they experience the influence of this transition on their lives. Six of them being clients who, when they lived in the institute, had the label of challenging behavior.
The purpose of the study is to evaluate this process of change in the organization and the effects it has on the quality of life of the clients.

II. Quality of Life: what is important?
The core task for an organization for services to people with learning disabilities is the provision of support in living and work/day occupation to people with learning disabilities in order that their quality of life is optimized.
There are widely divergent views with regard to the concept ‘quality of life’ and the facility to measure it; see for instance Hatton (1998).  There are views that stress the subjective experience, whereas other views stress objective and measurable factors.  
We believe that in the first category the view of Taylor (1994) which emphasizes that quality of life generally refers to the subjective experience of a person with respect to his or her life, is fundamental. The issue at stake is the way an individual experiences the world. The person concerned is the only one who is able to assess his or her own quality of life. Notions such as ‘a good life’ and ‘feelings of well-being’ do not lend themselves to exact measurement.  That is exactly why one has to be careful not to replace them too easily with variables that can be measured precisely and reliably.  Quality of life has a clear, albeit not precise, meaning: a sense of well-being or somebody’s contentment with his or her fate and inner sense of satisfaction with or fulfillment of someone’s experience in the world.  Continuous caution should be exercised towards setting an objective standard with regard to quality of life!
Schalock (1992) gives, as a result of a study into the literature on this topic and factoranalysis, an overview of the most important dimensions in reference to quality of life.  In his view, these fundamental needs apply to every human, therefore explicitly also to people with learning disabilities.
He names the following dimensions and points out corresponding indications for each:
1.         Emotional well-being  : safety, spirituality, happiness, freedom from stress, self-concept, contentment
2.         Interpersonal relations: intimacy, affection, family interactions, friendships, supports
3.         Material well-being: ownership, financial security, food, employment, possessions, social economic status, shelter
4.         Personal development: skills, fulfillment, personal competence, purposeful activity, advancement
5.         Physical well-being:   health, nutrition, recreation, mobility, health care, health insurance, leisure, activities of daily living
6.         Self-determination: autonomy, choices, decisions, personal control, self-direction, personal goals/values
7.         Social inclusion: acceptance, status, supports, work environment, community integration and participation, roles, volunteer activities,             residential environment
8.         Rights: privacy, voting, access, due process, ownership, civic responsibilities

Schalock (2001) points out that there is an emerging consensus  that each person values these core dimensions differently, and that the value attached to each varies across one’s life. The focus of quality of life assessment should be on person-referenced outcomes. However, if the support of a service organization for people with learning disabilities is asked, it needs to play a facilitating and supportive role in all of this.
The dimensions in quality of life that in our view are most essential in the organization for services to people with learning disabilities are inclusion, self-determination and personal development.

Inclusion: People exist together with other people
People with learning disabilities are people, people who belong and for whom no exceptions should be made.  This is at present also being referred to as the concept of  ‘inclusion’. 
The idea behind this is that all humans, with or without learning disabilities, have the right to be completely admitted to their various communities, to participate in and benefit from the daily life in their community as well as to contribute to and enrich it.
Support and services needed by people with learning disabilities should be provided for them, within their own local community, where they live, are educated, work or play with ‘able’ people‘ (Arc of the United States’,1998).

Self-determination
Another important dimension of quality of life is self-determination. Self-determination of people with learning disabilities, especially those with an intensive need for support, is often experienced as a concept that is difficult to work with in practice.  Sohl, Widdershoven and Van der Made (1997) describe the tension, with regard to autonomy of people with a mental handicap, between dependence and self-determination. Dependency does not have to restrict someone’s autonomy as long as the person can identify with the choice made, feels good with what he or she is doing and can adapt to or feels comfortable with the circumstances the way they are. The making of an autonomous choice is not just an individual matter but has to be seen in context of the social structure that the individual is part of. The care relation is fundamental in a relational notion of autonomy. We are not individual, independent creatures, but caring people, showing solidarity, who are by nature dependent on one another.  In our dependency we are committed to relationships that we enter in with others.

Empowerment
In the past people with learning disabilities have had too little opportunity to develop. In literature concerning Quality of Life a lot of emphasis is put on the importance of empowerment and habilitation, which refers to enabling people to stand up and fend for themselves, to take control of their own life and to make their own choices and decisions. 
By empowerment one can think of explicit education and schooling, but more important is learning through experience: by stating in the past that someone had to be ready for it, by care, concern and overconcern, one often denied people the opportunity to learn by experience.

III. Users participation in the process of changing the organization

A. Users participation

These options are further elaborated here.

Inclusion in practice
Arduin takes the view that each client has to be able to choose where and how he or she wants to live and work. In the provision of support the organization needs to aim at inclusion.  In order to do so, accommodation is kept small scale in the shape of ordinary freehold residences, scattered over the region, in principle in unlimited variety.
Arduin supports the clients in finding normal homes on the regular housingmarket in the region. This applies to all of the clients regardless the intensity of their need of support: also the people with intensive needs of support live in normal houses, which if necessary are adjusted.
This means that there is a larger appeal to society, to the social network of the family and for example to the church, to the corporate life and to volunteers. 
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. 
Furthermore each client is offered day occupation of their own choice in a range of companies and day centers, integrated as much as possible in society, for instance in a gift shop or a gallery in the town center and companies in ordinary industrial estates. 

Selfdetermination in practice
In Arduin the principle of self-determination gives a lead for all the clients. In practice this is not always easy to realize. However, as stated before, also people with a learning disability,  regardless off their dependence and disabilities, can function autonomously.

Personal assistant
In order to be able to maintain the principle of self-determination the position of personal assistant is also very important in Arduin. 
Each client has a personal assistant that he/she can call upon for support in the dialogue with the organization, in formulating wishes and care and support requests directed at the organization.  The personal assistant sees to it that the agreed service and care is carried out in conformity with the wishes of the individual client. The personal assistant is, when required, the interpreter/translator of the wishes of the client, but always explicitly from the role of assistant.  The intensity and frequency of this support is totally dependent on the request of the client (of course within the financial margins of the organization)!

Personal Plan
In this respect the dialogue, the communication with the client that is based on equality, is a prerequisite (De Baets, 1998). This takes shape e.g. in the Personal Plan that replaces the care plan and in which the ongoing dialogue between client and personal assistant is the key.  The personal assistant asks his/her client about what he wants, how he wants it, whether he got what he wanted and about what is happening. He then helps the client in formulating his need of supports in the Personal Plan, and this on an ongoing base.

For the client of Arduin self-determination in a concrete sense means for instance:

Option of Work.
Work/ day occupation is fundamentally important in a good quality of life. It is one of the fundamental rights in The Universal Declaration of Rights. Therefore all clients are offered a job or day occupation full-time (5x7 hours), including those with an intensive need for support.  Many of them had, until may 1997, just a few hours a week day occupation or activities outside of their house. There are a wide variety of types of occupation on offer, thus providing a choice.
A vacancy bank for clients enables clients to apply personally for a position in one of the establishments or day units.  Vacancies in departments of the businesses of Arduin are advertised in a monthly recruitment paper, with a description of duties and a list of conditions that the client has to comply with. Of course the clients can get support from their personal assistant in applying for a job or a place in an occupational day unit.

Option of Accommodation: the housing bureau.
Clients are no longer living in the institution.  Arduin is looking for ordinary housing in the existing housing market in Zeeland for everyone regardless of the intensity of the support requirement. Even people with a severe learning disability will live in ordinary accommodation (with adaptations if required).
The clients of Arduin choose themselves (sometimes with support of their personal assistant and/or their parents) where and with who they want to live. There is no more board of placement that decides where clients should live. Thus more and more people live as they want themselves. Often this is in the beginning a process of trial and error. Choices once made can be disappointing and then another choice has to be made.
At the heart of this process is the housing bureau, where the client, possible supported by his/her personal assistant, can be served when he/she is looking for accommodation. The housing bureau monthly issues at the Extranet an overview of dwellings of Arduin which are or will become available, or details of other places/ apartments which are or will become available.  Clients can respond to any of these by means of a housing coupon or by means of a discussion/interview with staff of the housing bureau, but can contact the bureau with their wishes independent of any current offers. In principle, there is an unlimited variety of ways of living: for it does not concern the type of accommodation but the support.  In reality what is on offer at present varies from independent living with little support, living in a foster family, living on a farm, in an estate or in the center of the town, to living in a group residence and anything in between. Principles such as a homogeneous or heterogeneous group structure become irrelevant because the choice is made by the clients themselves and not by the organization.
This leads among other things to more independent living: some 21 people nowadays live on their own, who formerly lived in a group and who would not be able to live on their own. Ten more live with two in a house. Among them people who lived in a closed setting, because of their behavioral problems. Furthermore people with intensive need of supports live very differentiated. For them too their interests determine where to live.
The problem in this process still lies in the financial limits of the organization. This makes that many people live in houses with four or five others.

Empowerment in practice
Learning by the experience
Most important with regard to empowerment is learning by the experience that people have in a lot of situations, where in the past they didn’t get a chance for, because they were ‘not ready for it’. That is why ever again, in big or small decisions, with regard to work, day-occupation and living, the clients are asked to make their own decisions, to decide themselves, to take control in their own lives. And then one sees that also people with a intensive need for supports do have a lot of possibilities that no one suspected them to have.
Schooling
The importance that is attributed by Arduin to the schooling, retraining and education, to lifelong learning of clients manifests itself in the school of Arduin, which is offering a variety of over 50 courses to all clients.  These courses cover areas such as social education, general development, occupational training and creative development.  These courses are prepared in compliance with the request of the clients who e.g. want to know more about the view of Arduin (“the matter you always talk about”), or about first aid, or who want to learn how to handle tools, how to use make up or how to use the telephone etc.  The emphasis is always on learning to learn and learning how to make own decisions and how to stand up for oneself. Often this is a kind of catching up, in areas where they should have learned about earlier in live.

From care to support
In an organization that wants to offer support to people with learning disabilities the central function is definitely not the housing, but the support which is chosen by the client him/herself as well as where and how he or she wants this support!
Support in the concept of 'supported living' is offered in first instance by the natural network of the person: parents, family, friends, neighbors, colleagues and volunteers.  It is only when the natural network is unable to offer sufficient support that the social ‘safety net’, consisting of service professionals, comes into action.  In a lot of cases it becomes evident that the natural network has to be reconstructed or reactivated.
Support has to be offered flexibly: not every person needs support in the same areas or in the same amount.  Thus the ‘group thinking’ is being abandoned.  Within Arduin there is a wide variety, from clients who need very intensive support to clients who only need a couple of hours of support from a host.  Furthermore the individual need for support may also vary from time to time.

B. Users  view
By way of qualitative research was, in the course of the process, evaluated how clients experienced the changes in Arduin. Therefore for example focusgroups with clients were organized in which their quality of life was discussed, and by way of narrative inquiry, the stories of a number of clients were collected through talks with themselves, with personal assistants and other staff. The indicators for the eight dimensions on quality of life were used in this personal appraisal strategy, “typically asking the person how satisfied he or she is with the various facets of his or her life” (Schalock, 2001).
Ferguson and Ferguson (2000) on qualitative research ………….

Focusgroups
In three focusgroups with clients their experiences with the changes in Arduin were discussed. It were discussions on the quality of their lives and the role of Arduin in that: on living work / daily activities, leisure time, learning, support, how it was and how it is, etc.
The themes that were important for the clients in these focusgroups were:

In fact these are normal themes that everyone recognizes. Also however these are themes for which the traditional institutional care is a express hindrance. Who listens to people with learning disabilities hears the call for deinstitutionalisation.

The stories of clients
Five students from the department of special education at the University of Gent got the assignment to sketch the lives of 22 clients, six of them being (former) clients with challenging behavior. They had conversations with the clients themselves, their relatives, staff and personal assistants, to get a good and truthful picture. These stories are published in a book on Arduin and the dismantling of institutional care.

All these stories picture the importance of self-determination: being able to do what you want, choosing your own house, your own job, not doing everything together with others, not getting more support then you really need!

They express the wish to participate in the society, of inclusion, and of living in a normal way, in a normal neighborhood, with plenty contacts in he society, with friends nearby, with family, and with others.

They also strongly picture the importance of empowerment, personal  development, getting the opportunity to learn, follow courses and learn in practice:

In some of the stories clients tell us of the inhuman way they were treated in the past:

Furthermore the importance of support thinking is clear: people need support, but everyone in his own way, one more, one less, sometimes more in the housekeeping, sometimes in care, sometimes with an accent on counseling and advice.

And also if one talks with people with challenging behavior the conclusion cannot be other than that they are normal people with normal needs and wants: the need to be listened to, to be taken seriously, to be part of the family. The need to have something to do, to have a job one likes. The need to live the way you want, in the community.
People have to get the support they need and want, in the situation they are in, on that moment. No more, no less. The accent is on support, not on control. Emphasizing control works al wrong and creates additional problems. One has to emphasize the possibilities of people instead of the limitations. This does not mean that one should ignore specific problems, but one should translate them in a need for support. It should be a challenge to support people with special needs in such a way that they can lead a normal live such as they want.

IV. Discussion
The organisation Arduin adopted the emancipation and selfdetermination of people with learning disabilities as fundamental in order to secure the best possible quality of life of the clients.
The participation of clients and the evaluation by clients show that people with learning disabilities are 1) valid sources of information and 2) valuable partners in the process of change.
Therefore one should not ask clients on a once-only base for their opinion, their wishes or needs. In order to have a good quality of life, people with or without learning disabilities need to have the control in their own life.
This means that inclusion, selfdetermination and empowerment should be built-in values in the practice of services for people with learning disabilities. The focus in these services comes to lie on supporting people, in stead of caring for people. One should not underestimate the implications of the needed change-over of an organisation as a result of this. It is however our conviction and our experience that people with learning disabilities themselves have the least problem in getting used to a system in which they get the control in their own life. And if you ask them, they will tell you!

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