Self-determination for all!
Self-determination in the Practice of Arduin.
Dr. Jos van Loon

I. Introduction

On a large scale people with intellectual 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 centre 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 study, 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. 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 intellectual 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 went 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 were found in he 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 Rights etc. 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 was introduced in the shape of a service directed towards the support of people with intellectual disabilities.
In the proceeding process the opinions of the clients played an important role in structuring the 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 centre, etc. In this clients are supported by their personal assistant.

II. Quality of Life: what is important?
The core task for an organization for services to people with intellectual disabilities is the provision of support in living and work/day occupation to people with intellectual disabilities, in order that their quality of life is optimised. In contrast to a quality of care model, the quality of life model is based on the quality of life construct that has emerged throughout the world (WHOQOL, 1995) and is currently being used as: (a) a sensitizing notion that gives us a sense of reference and guidance form the individual’s perspective, focusing on the eight core domains (emotional well-being, interpersonal relations, material well-being, personal development, physical well-being, self-determination, social inclusion, and rights to a life of quality; (b) a social construct that provides a model for assessing the core quality of life domains; and (c) a unifying theme that provides a systematic framework to apply quality of life-oriented policies and practices (Schalock & Verdugo, 2002). Basic to an organization’s commitment to a quality of life and individualized supports delivery model are the fundamental beliefs that: (a) the quality of life of people with disabilities is composed of those same factors (that is, core domains) and relation­ships that are important to all persons; (b) a person’s quality of life is enhanced by empowering persons to participate in decisions that affect their lives; (c) quality of life is enhanced by the acceptance and full integration of persons into their lo­cal communities ; and (d) a person’s quality of life is enhanced through the provi­sion of individualized supports (Brown & Brown, 2003; O’Brien & O’Brien, 1989; Schalock et al., 2000; Schalock & Verdugo, 2002; Vreeke, Janssen, Resnick, & Stolk, 1998).
The concept of quality of life was operationally defined and implemented through the eight core quality of life domains found in the international quality of life literature (Schalock & Verdugo, 2002):
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, fulfilment, 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

From a large action research project we concluded that from these eight domains inclusion, self-determination and personal development were especially influential in the shift from ‘total care’ - as organized within the traditional institutional care - to ‘support’ (Van Loon & Van Hove, 2001). In view of the topic of this roundtable we focus most on self-determination.

Inclusion: People exist together with other people
People with intellectual 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 intellectual 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 intellectual 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. All people want to be in control, want to make their own decisions. We should acknowledge this inner need, so one should if necessary support people with intellectual disabilities to develop, to grow, learn them to make their own choices, to stand up for themselves. Also one should create the circumstances in which it is possible to make one’s own choices. Self-determination of people with intellectual disabilities, especially those with an intensive need for support, is often experienced as a concept that is difficult to work with in practice. When one comes to realise that people with intellectual disabilities should be viewed as all other people, with strengths beyond their impairments, as people who can grow with appropriate personalized supports, it is important to think about the concept of autonomy for people with intellectual disabilities. 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. Inclusion International (Wahlström, 1998) argues that all individuals should have the right to take their own decisions and to have these respected. If one doesn’t see autonomy from a liberal perspective, but from a rather social perspective, it can be seen as the result of mutual respect for rights and freedoms; this mutual respect is realized by active participation in the community (Bouverne-De Bie, 2005). People with intensive needs of supports who cannot speak up for themselves, should be supported in order that their decisions be understood and respected. It is important to stress that we are not individual, independent creatures, but caring people, showing solidarity, who are by nature dependent on one another (Sohl, Widdershoven en Van der Made, 1997). Many authors emphasize the importance of the relational aspects in the concept of autonomy and the promotion of a good quality of life. O’Brien (1989) calls assisting people to grow in relationships one of the five accomplishments to focus and guide service staff in their work. Building community participation challenges all people to live interdependently. Meininger (1998) argues for a view on the human condition in which the role of the other is of primary importance. He puts that through the view on the human condition as 'individualism of the realizing of oneself' and the linked concept of autonomy one gets to much one’s teeth in practical questions of care and forgets the existential questions. He argues for a view on the human condition in which the role of the other is of primary importance and in which self-determination, emancipation and freedom are embedded in a search for authenticity; a search that takes place in encounters with the other. The ‘caregiver’ should therefore come into dialogue with the person who asks support,  in which the independence of the ‘dependent’ becomes visible and the other way around the dependence of the ‘independent’. In our dependency we are committed to relationships that we enter in with others. 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. Prilleltensky (2005) mentions the importance of the relational domain in promoting well-being and liberation, next to the personal domain on one hand and the collective domain on the other hand, for transformational psychopolitical validity: the interacting of psychological and political influences to promote well-being and generate liberation. Thus, autonomy doesn’t mean making an individual, considered and rational choice, but coming into dialogue with others, getting support, and deciding together with others which choice fits best in one’s one life story. 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. Independence is the not linked to doing things alone or without help, but by obtaining assistance when and how one requires it. 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 to give an account of personal autonomy that is not caught in the independence-dependence dichotomy the subject must be founded in a philosophical tradition that sees the human condition as one of interdependence. In this way the field of tension between dependency and self-determination can be bridged and can people with intellectual disabilities can function autonomously (Sohl, Widdershoven en Van der Made, 1997). 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.

Empowerment
In the past people with intellectual 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 over concern, one often denied people the opportunity to learn by experience.

III. Self-determination for clients in the process of changing the organization

Users participation
Early in the start of the process of changing the organization Arduin the management wanted to ask the clients about their wishes on several aspects of their live. Prof. Geert Van Hove from the Department of Special Education at the University of Gent was asked to do a study in which every client would be asked about his preferences with regard to living, work, spending leisure time etc. The result was a overview per client and a total overview on the wishes and needs of the clients, at the moment they were asked.
Soon however it became clear that with these results the scope of the findings of this study was limited. There was the effect that the clients were enthusiast about being asked after their opinions. Most clients were very willing to tell the interviewers what their wishes were. Because this happened at the same time that there came many changes in the organization, they hoped it would be the beginning of change in their own life. An effect that the study also did have was a consciousness-raising. The range of the talks however was in a natural way limited to the experiences of the clients until that time. How could one express wishes that he hadn’t thought of until then? In the wishes people expressed about where and how to live for example they looked at what had be possible until then. The scope of the findings of this study was therefore limited to a kind of once-only use. The wishes of the clients evolved rapidly as the organization changed, as more choices became available
Therefore ways had to be found to ask for the opinion of the clients on a permanent or ongoing base and to give the clients more structural influence in their lives and in the organization. This was among other things found in:

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 housing market 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 work or day occupation of their own choice in a range of companies and day centres, integrated as much as possible in society, for instance in a gift shop or a gallery in the town centre and companies in ordinary industrial estates. 

Self-determination 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 intellectual 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 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
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. Before, the staff wrote the care-plan about the care they thought was necessary for the person and they wanted to deliver to the person. Now 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 intellectual disability will live in ordinary accommodation (with adaptations if required).
Before, the provider offered from the perspective of the organization a limited and fixed number of places to live; the board of placement decided where a person could; the person had to accept this and adjust to these (take it or leave it). Now, 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 centre 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 behavioural 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 intellectual 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, neighbours, 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.
Before, the person came to live in a house, mostly a ward, of the organization. The staff cared for the person in their environment. Now, the person lives in his or her house. The staff comes to support the person in his / her house.

IV. Conclusion
The organisation Arduin adopted the emancipation and self-determination of people with intellectual disabilities as fundamental in order to secure the best possible quality of life of the clients. This choice inevitably led to the choice for deinstitutionalization. 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.”
Our qualitative action research in Arduin shows that the focus on quality of life requires deinstitutionalisation. This in turn requires a new model of services with the emphasis on the supports paradigm. This new model of services improves life functioning and improves quality of life. Supports can thus be seen as a necessary consequence of the focus on QOL and at the same time we see that supports improve the life functioning of persons with intellectual disabilities
The participation of clients and the evaluation by clients also show that people with intellectual disabilities are valid sources of information and 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 intellectual disabilities need to have the control in their own life.
This means that inclusion, self-determination and empowerment should be built-in values in the practice of services for people with intellectual 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 intellectual disabilities themselves have the least problem in getting used to a system in which they get the control in their own life.

Literature

Arc of the United States (1998), Position on Inclusion, http://thearc.org/positsinclusion.html

Bouverne-De Bie, M. (2005) Sociaal Cultureel Werk: van burgerdeugd naar realisatie van burgerschap? Universiteit Gent: Unpublished manuscript

Goffman, Erving (1962).Asylums. New York, Anchor.

Hove, G. Van (1996). Pamflet tegen de verdinging van mensen met een verstandelijke handicap. Gent, Vakgroep orthopedagogiek, Universiteit Gent.

Loon, Van J.H.M. & Van Hove, G. (2001). Emancipation and self-determination of people with learning disabilities and down-sizing institutional care, Disability & Society, 16 (2), p. 233-254.

Luckasson, R. (1992). Mental Retardation, Definition, Classification, and Systems of Supports. 9th Edition. Washington, American Association on Mental Retardation.

Meininger, H. (1998). Zelfstandig en afhankelijk: anders denken over de autonomie van mensen met een verstandelijke handicap. Inleiding voor het symposium: Vriendschap: niet verplicht maar wel onmisbaar. De ethische betekenis van vriendschap in de ondersteuning van mensen met een verstandelijke handicap t.g.v. het landelijk congres 'Wetenschappelijk onderzoek ten behoeve van de Zorg aan Mensen met een Verstandelijke Handicap', De Reehorst, Ede, 30 oktober 1998.

O’Brien, John And O’Brien, Connie Lyle, (1993). Unlikely alliances, Friendships and people with developmental disabilities, in: Angela Novak Amado: Friendships and community connections between people with and without developmental disabilities. Baltimore, Maryland, Paul H. Brookes Publishing Co..

Prilleltensky, I. (2005) Chapter 6. Commitment, Accountability, and Inclusion. Available Online: http://people.vanderbilt.edu/~isaac.prilleltensky/chapsix.htm; 24/08/2005

Reindal, Magnus S. (1999). Independence, dependence, interdependence: some reflections on the subject and personal autonomy. Disability & Society, 14, (3), 353-367.

Rioux (1994). Disability is not Measles. New Research Paradigms in Disability. North York, Ontario, Roeher Institute.

Rosenberg, Robert R. (1994) Capitol People First: Self-Advocacy and Quality of Life Issues.
In: David Goode, Ed : Quality of Life for Persons with Disabilities. International perespectives and issues. Cambridge, Brooklin Books.

Schalock, R. L. (1996). Reconsidering the Conceptualization and Measurement of Quality of life, in: Schalock R.L. (Ed.) Quality of Life, Volume 1, Conceptualization and Measurement, Washington, American Association on Mental Retardation.

Sohl, C., Widdershoven En Van Der Made (1997), Autonomie van mensen met een verstandelijke handicap. Op zoek naar een breder perspectief. Maandblad Geestelijke volksgezondheid 52 (1997) 9.

Taylor, S. J. (1994), In support of Research on Quality of Life, But Against QOL, In: David Goode, Ed : Quality of Life for Persons with Disabilities. International perspectives and issues. Cambridge, Brooklin Books.

Gennep, A.T.G. VAN (1976). Het recht van de zwakste. Meppel, Boom.

Van Gennep, A.T.G. (1997). Paradigma-verschuiving in de visie op zorg voor mensen met een verstandelijke handicap, Tijdschrift voor Orthopedagogiek, 36, pp. 189–201.

Van Gennep, A.T.G. (2000). Emancipatie van de zwaksten in de samenleving. Over paradigma’s van verstandelijke handicap. Meppel/Amsterdam: Boom.

Wahlström, V. (1998). The Beliefs, Values and Principles of Self Advocacy. Ferney-Voltaire: Inclusion International

Wehmeyer, Michael L., Schalock, Robert L., Self-determination and Quality of Life: Implications for Special Education Services and Supports. Focus on Exceptional Children, April 2001, Vol. 33 Issue 8, p1, 16p