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Emancipation and Self-determination of People with Intellectual disabilities and Downsizing Institutional Care

 (This chapter is based on: Van Loon, J., & Van Hove, G. (2001). Emancipation and self-determination of people with learning disabilities and down-sizing institutional care. Disability & Society, 16(2), 233-254.)                                                                    

Abstract

In Arduin, an organization for services to people with intellectual disabilities in the Netherlands, 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 are also going through a transition from ‘providing a total care service’ towards ‘offering the support that the client desires’. In this article the background and developments in perception are being outlined, and those dimensions in quality of life are elaborated that are seen as most essential in the innovation: inclusion, self-determination and personal development. The choices that were made as a consequence in Arduin and most fundamental the choice to dismantle the institution are described.

 

Introduction

On a large scale people with intellectual disabilities are going through a process of emancipation and growing awareness.  This is apparent from the foundation of advocacy groups such as ‘People First’ in England and the United States, Onderling Sterk’ (‘Together Strong’) in the Netherlands, ‘Onze Nieuwe Toekomst’ (‘Our New Future’) in Flanders (Belgium), as well as from the congresses of people with intellectual disabilities in 1994, 1996, 2000 in Arcen (the Netherlands) and in 1995 and 1999 in Retie and De Haan (Belgium).  Fundamental moves are being made in the development from a position of dependence of many years’ standing towards one of self-determination.
It is becoming increasingly apparent that the point of issue here is, in fact, still a plea for human rights, freedom and deliverance, this time, finally, for people with intellectual disabilities. This where it has been over 50 years since the United Nations adopted the ‘Universal Declaration of Human Rights’. Moreover, the ‘Declaration of the Rights of the Mentally Handicapped’ of the United Nations dates from 1971, and the Standard Rules, concerning equal opportunities for disabled people, of the United Nations of 1994. Those who take these documents seriously will realise that there are still shortcomings in the area of human rights for people with intellectual disabilities.
In the foreword of ‘50 years of Human Rights’ – a publication of Inclusion International – Victor Wahlström (1998) writes that it is high time to draw the attention of governments to the fact that declarations concerning human rights are still being violated on a large scale.  He also refers to the segregation of people with intellectual disabilities in institutions and other places that separate them from normal life. People with intellectual disabilities have the same personal rights as others, considering they are citizens of their country and equal in the eyes of the Law.
It is essential to take this development of emancipation on board in the services to people with intellectual disabilities.  Bradley and Knoll (1990) and Van Gennep (1997a) talk of the shifting paradigm in the concept of care for people with intellectual disabilities.
Within this framework there are also new views developed regarding the evaluation of services. For this I can refer to the concept of outcome-based evaluation (Schalock, 1995). With reference to quality of life, empowerment, inclusion and the support-paradigm it is stipulated that in the evaluation of the effectivity and impact of services the values of the client as a consumer are emphasised. The question then arises which are the central values in the services for people with intellectual disabilities.
In the Netherlands there is a growing interest in e.g. the concepts of community care and supported living but the services for people with intellectual disabilities in general still are very traditional. Recently there has been very fundamental criticism by K. Kristiansen (Derksen & Koolen, 2000) who states that the services for people with intellectual disabilities in the Netherlands are 15, 20 years behind the times compared with the civilized world.
Arduin, an organization for services to people with intellectual disabilities in Zeeland (the Netherlands), in the early nineties has had a lot of criticism. Now, as an answer to that, the emancipation and self-determination of the person with intellectual disabilities has been positively adopted as the fundamental starting point in order to secure the best possible quality of life of the clients. 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.
In this article the background and developments in perception, which are playing a role in the changes taking place in the way of thinking about services to people with intellectual disabilities, are being outlined. In Arduin the focus lies on self-determination, personal development and inclusion which are regarded as the most essential elements in quality of life, in making the paradigm-shift. Therefore, the focus in this text lies on the elaboration which was made as a consequence of this choice. It is based on a study of relevant literature and gathering and analysing information by the author, being a member of the management team of Arduin.    

 

Backgrounds

Views on the nature of Intellectual Disability

Over the past years, changes have become apparent in the way of thinking about people with intellectual disabilities. The present definition in the ninth edition of the handbook of the American Association on Mental Retardation (Luckasson,1992) asserts that mental retardation refers to fundamental restrictions in the present functioning. Mental retardation is no longer seen as a permanent characteristic of a person.  It is no longer simply a cognitive deficiency, rather it is a condition, which implies that a person’s functional abilities are impeded in certain ways. Much more importance is attributed to the interaction between the individual and environment and the recognition of its influence on the person’s functioning. The emphasis is put on the question of what type of support an individual requires in order to lead a better life.  In contrast to previous versions of the AAMR definition and the DSM-IV (Diagnostic Statistical Manual IV), levels of mental handicap are therefore no longer distinguished.  However, a classification of four categories of intensity with regard to required support in each area of functioning (intermittent, limited, extensive and pervasive) is being operated.

From a more socio-political point of view Rioux (1994,1997) demands attention for the wider political implications of intellectual disabilities.  In the 1990s a mental handicap was viewed as an individual problem instead of a social relationship. The individual’s pathology formed the basis in this view and was originally conceived medically but later viewed from the perspective of the developmental (re)habilitation paradigm.  She talks in this context about handicap as a social construct, as a product of social, legal, political and economic context instead of an inherent, permanent characteristic of a person.  Social and economic factors make an individual handicapped. The elimination of social and physical barriers, which create handicaps, and the promotion of social well being are priorities, and she emphasizes equality and civil rights. 


Criticism of Institutional Care

For years there has been criticism of the institutional care for people with intellectual disabilities, nationally in the Netherlands and internationally. As early as 1962, Erving Goffman (1962) described the total institution, where the boundaries that normally separate the three life spheres (living, work and leisure) have been pulled down. Each phase of the daily activities of the members is carried out in the immediate company of a large number of others, who are all treated the same and are doing the same things together.  All phases of the daily activities are rigidly schematised. In the early 1970s in the Netherlands conflict revolved around Dennendal, with displays of vehement opposition against the traditional institution which did not promote the well being of the inhabitants. Already in 1976, Van Gennep, a Dutch professor in Special Education, too described the institution as a threat to the personality of the inhabitants. In 1984 members of the Californian advocacy group for people with intellectual disabilities, Capitol People First, devised the term ‘The Retarding Environment’. According to Tom Hopkins, Chairman of the Board of this society, this term implies that ‘even though we have an intellectual or cognitive limitation, it is the behaviour that we learn in segregated (isolating) places such as institutions, sheltered work shops and the so called family replacement homes (which are just as hospitalising as any other institution) that makes us different’ (Rosenberg, 1994). John O’Brien and Connie Lyle O’Brien (1993) emphasize the contrast between the personal approach and the institutional approach. In 1996 in “Pamflet tegen verdinging van mensen met een verstandelijke handicap” (“Pamphlet against the dehumanisation of people with intellectual disabilities”) Geert Van Hove (1996) describes the process of ‘verdinging’ (dehumanisation).  He claims that people are being reduced to objects characterised by a total lack of privacy, no entitlement to sexuality, subjection to uniform treatment in groups, being patronised by care officers who always know best and by a lack of opportunities to make their own choices (and possibly running the risk to meet with a rebuff), etc. Vreeke et al. (1998) developed an instrument to measure the quality of life of people with intellectual disabilities and used it to carry out an enquiry in institutions with a total of 3290 inhabitants in the Netherlands. Results showed that the quality of life for at times large groups of inhabitants was insufficient in many parts of the care. More specifically, a lack of freedom/ self-determination, lack of opportunities to develop and lack of integration were mentioned.  It is especially in the groups with higher nursing and care needs and the groups of inhabitants with severe behavioural problems that the care offered is insufficient. The quality of life in smaller living quarters situated outside the domain of an institution, on the other hand, was found to be relatively good.
On an international level many hold the view that large-scale care provisions inevitably lead to unacceptable low standards of care.
In my opinion this should not lead to the conclusion that the care in institutions should be improved.The only acceptable conclusion is that care for people with intellectual disabilities should not take place in institutions and that therefore institutional care should be abolished.  Stancliffe and Hayden (1998) looked into the effect of reducing the size of institutions in a longitudinal survey. Their findings did not support the hypothesis that the reduction of institutional size results in an improvement of the care. On the contrary, the reduction of institutional size was associated with the perseverance of an unsatisfactory status quo and a variety of undesirable changes. Especially when comparing with similar inquiries involving people who had left the institution, the only conclusion to be drawn was that the de-institutionalisation has to continue and that eventually all institutions need to be closed.  It is, however, crucial that a good alternative is introduced in the shape of a service directed towards the support of people with intellectual disabilities.

For that matter it is not just about institutional care, but indeed about institutional thinking. Also in smaller homes and in community care there can be institutional thinking. In this context it is striking that the Netherlands is severely behind with regard to (de-) institutionalisation. Emerson et al. (1996) presented information about the extent of institutionalisation of people with intellectual disabilities in 15 European countries.  For 10 countries the extent of changes in institutionalisation was presented.  The data showed that the present rate of institutionalisation (date of measurement 1992-1993) varies from 0.31 per 1000 inhabitants in Norway to 2.11 per 1000 inhabitants in the Netherlands.  Ireland comes in second place with 1.36 per 1000 inhabitants.  Whilst the results of the survey into the pattern of change in the eighties only showed an increase in institutionalisation in the Netherlands (+1.12%) and Poland (+1.38%), the other eight countries showed a systematic reduction in the amount of people with intellectual disabilities who were cared for in institutions.  The rate of reduction varies considerably from 1.0% annually in Ireland to 5.9% annually in Norway. It is obvious that these differences cannot be explained by general economic factors.  The top and bottom figures with regard to institutionalisation occur in the Netherlands and Norway, two of the most prosperous countries in Europe!  At the same time, the only countries with an increase in institutionalisation, the Netherlands and Poland, are hardly on a par with each other with regard to their national prosperity.

The New Paradigm Concrete

As stated above Bradley and Knoll (1990) and Van Gennep (1997a) talk of a shifting paradigm in the concept of care for people with intellectual disabilities. According to Van Gennep (1997a), this new paradigm implies the following:

  • The care petitioner, as a citizen in his own right, determines to a certain extent the conditions under which the care is provided.  This will lead to a declassification of the care.
  • Citizens with intellectual disabilities too should be able to choose where and with whom they want to live, work and spend their leisure time, as well as who will be supporting them, where and how.
  • The concept ‘care’ is being replaced by the concept ‘support’. Important in this matter is the notion that someone does not necessarily have to be ‘ready’ in order to be admitted to a certain living and occupational situation. 
  • Quality of life implies the opportunity to give shape and content to one’s own existence complying with general human and specific fundamental needs, under ordinary living conditions and according to ordinary living patterns.

The central issue is which theme’s are fundamental in a good quality if life and which consequences does this have for the services to people with intellectual disabilities? This issue will be under discussion here and will be elaborated in the case of the organization Arduin.

 

Quality of Life

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 this context the principles with regard to quality of life as set out by Schalock (1992) are important.  He takes the line that:

  1. the quality of life for people with disabilities is composed of those same factors and relationships that are important to all persons;
  2. quality of life is enhanced by enabling persons to participate in decisions that affect their lives;
  3. quality of life is enhanced by the acceptance and full integration of persons into their local communities.

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.  With reference to people with intellectual disabilities we have to try to understand and respect what they think of their life.  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 fulfilment of someone’s experience in the world.  Continuous caution should be exercised towards setting an objective standard with regard to quality of life!
Felce and Perry (1996) work with a model for quality of life, in which there are implied:

  1. objective life conditions: physical, material, social and emotional well-being and development and activity
  2. subjective well-being/satisfaction with these objective life-conditions;
  3. personal values and aspirations/the importance of these objective life-conditions.

All of these factors, influenced by external influences, play a part in quality of life assessment.
Schalock (1996) gives, as a result of a study into the literature on this topic and factor analysis, 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 intellectual 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, 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.

When all of these needs (which are basic for each individual) have been met and the person in question has equal opportunities to pursue his or her own objectives, both at home, in society, at school and at work, it is possible to talk of a good quality of life!  If the support of a service organization for people with intellectual disabilities is asked, it needs to play a facilitating and supportive role in all of this.
In this article those dimensions in quality of life are elaborated that in our view are most essential in the organization for services to people with intellectual disabilities: inclusion, self-determination and personal development. Indeed, these themes make the difference and show where the limits are for a good quality of life in the traditional institutional care.

 

  • 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 very fundamental starting point 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. 
A lot of people with intellectual disabilities are still being separated from people without disabilities.  They are still deprived of the opportunity to participate in and benefit from the daily life in their community, as well as to contribute to and enrich it.
Inclusion is based on the hope and expectation that people with intellectual disabilities are being admitted in society, and play a serious part in decision making, in the culture and social community.  It presumes that they are listened to, that they have access as fit persons to all facilities and opportunities of society and that they are appreciated for their participation and contribution. Making a stand with regard to inclusion, the ‘Arc of the United States’ (1998) states that children with intellectual disabilities should live in a family, grow up in such a way that they enjoy the relationships with the adults who are bringing them up both inside and outside the family, be educated in the school in their neighbourhood, together with children with and without disabilities, in activities of recreation in the local community and other leisure activities.  Adults with intellectual disabilities should have the opportunity to have maximum control of their own life, to have a variety of adult relationships ranging from acquaintances to friends to lovers and partners, to live in their own place - a home-, to have a meaningful job and to receive reasonable pay for it, to enjoy recreation and other leisure activities and to practice their own choice of religion or spiritual life.  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.
Inclusion and support in the degree that a person requires are essential conditions for a good quality of life (Steman & van Gennep, 1996) .

 

  • Self-determination

Perhaps the most important dimension in a persons quality of life is self-determination.  This is a broad concept. 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.  Sohl et al. (1997) describe the tension, with regard to autonomy of people with a mental handicap, between dependence and self-determination. It arises when autonomy is being contemplated from the liberal perspective that the freedom of decision completely lies with the person who makes a choice in an individual, well considered and independent way. This presumes a certain degree of competence, awareness and rational ability, which most people with intellectual disabilities do not possess.  In search of an alternative for the liberal concept of autonomy, that will not exclude people with intellectual disabilities in advance, they describe practical, communicative and relational autonomy.
According to the concept of practical autonomy 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.  It is furthermore important to offer a choice that is meaningful and that fits in the life story of the client.  With the concept of communicative autonomy it is stressed that the decision making process should not be seen as the result of individual conscious choices, but as the fragmented outcome of prolonged processes of reaching consensus and of conflict in which several parties are involved.  The making of an autonomous choice has to be seen in context of the social structure that the individual is part of.  Decisions are not made individually, but result from the communication between all those involved.  The care relation is fundamental in a relational notion of autonomy.  Care and dependence are two important characteristics of relational 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.

 

  • Personal development

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: enabling people to stand up and fend for themselves, to take control of their own life and to make their own choices and decisions is the most important condition to create.  According to Schalock & Faulkner (1997) training of personal development and well being implies also the development of adaptive and social skills in people with intellectual disabilities.  This is based on the positive correlation that was found between the level of skills and the quality of life of a person.
By empowerment one can think of explicit education, but more important is learning through experience: by stating in the past that someone had to be ready for it, by care and (over)concern, one often denied people the opportunity to learn by experience.

 

From Care to Support

In an organization that wants to offer support, 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!
An important development in this context is the development of the concept of ‘Supported Living’.  According to Lakin and Smull (1995) supported living is based on an ‘elegantly simple idea that has been lost to generations of professionals as they were too busy “repairing” people with intellectual disabilities’.  This simple idea is that people with intellectual disabilities are people first.  They want an own dwelling, control over the fundamental decisions in their lives, support from people who care for them and are members of the community they live in. Above all supported living recognises and respects what people with intellectual disabilities have in common with their neighbours. One undertakes so to speak to listen carefully, to share the struggle, and to do whatever is possible in order to enable people to lead the life they want to lead, given their needs, the circumstances and the available resources. According to John O’Brien (1993) supported living is, above all, a safe and decent own place to live, choice, personal assistance and support of people who care for you and respect you. The concept ‘support’ is described by Steman and van Gennep (1996) as: to give the person access to knowledge, means and relationships that are required in order to live, to work and to enjoy recreation in society.  According to them, support assumes that the person with a disability does not have to be ‘ready’ in order to be allowed to a certain type of living or day occupation.  He/she does not have to satisfy certain conditions, but rather has to be supported in learning to function in the situation of his/her choice.
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. Only when the natural network is unable to offer sufficient support, the social ‘safety net’, consisting of service professionals, comes into action.

 

The Model ‘Arduin’

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 500 clients. The care load of the clients of Arduin does not differ from that in other establishments according to the data of the ‘Landelijke Zorg Registratie’ (‘National Care Registration’). Arduin is a private organization but gets its finance from the government. In 1994, when the organization formerly known as Vijvervreugd came under new management, there was talk of insufficient quality of care in several respects. An independent inquiry, carried out by Professor Van Hove (1995) 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 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. 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. According to Arduin it is no longer sufficient and no longer possible to improve the care in institutions: institutional care is a thing of the past! Because Arduin is of the opinion that, in order to achieve a good quality of life for people with intellectual disabilities, institutional care is no longer an option, the institution is being abolished.  Only a facilitating organization remains, focused on support of the self-determining client, focused on supported living.  It is stressed that it concerns only the support, which the client asks for!  An important motto in shaping this organization is “Normal if possible, special if necessary”. The separation between the three life spheres - accommodation, work/daily activities and leisure – is fundamentally important in the process of de-institutionalisation and promotion of quality of life.
The value of work/day occupation is considered to be of more fundamental importance in one’s life! In full time day occupation, separated from the living situation, it becomes apparent that people with an intensive support requirement too have a lot of, previously unsuspected, potential and sometimes remarkable changes in behaviour take place.  Work/ day occupation for all clients implies that there is no need for support or care staff to be present in the houses.  Most of these staff has a double contract: a position in one of the businesses or activity units, and a position in a house. Consequently, many ‘bureaucratic trimmings’ can be abolished in the organization: there is no ponderous apparatus to keep up! The resources that are becoming available are greatly needed in the primary process of the small scale living arrangements and the work/ day occupation for everyone.  This process is based on progressing insight. The direction is clear, but the ‘how’, ‘what’ or ‘when’ is not always obvious. The functions of most staff are effected by necessary fundamental changes in this process and they will continue to change! It will be obvious that this process was not always easy for the staff members, nor for the parents. It is important that at the start of this process the members of staff are given job and salary security, with flexibility regarding possible new positions and duties.
The issue here is explicitly not another matter of up-dating the care for people with intellectual disabilities, but of developing and founding a new model.
How are the principles in this new view in services to people with intellectual disabilities, and especially the formerly mentioned central dimensions with regard to quality of life, brought into practice?

 

The practice of inclusion

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 take inclusion as the starting point.  In order to do so, the new accommodation is kept small scale in the shape of ordinary freehold houses, scattered over the region, in principle in unlimited variety. In 1995, 270 of the clients lived on one campus in Middelburg, 247 of them in one institutional building, and 23 in another, and 90 clients lived in 11 normal houses, with nine of these houses also in Middelburg located. At present only 30 still live on the former campus, in six semi permanent houses, waiting for definitive houses. The campus is for the greater part sold and normal houses will be build there.
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. A problem we see here is that this network often in the past is broken down, as the person entered the institution. Although many parents visit there family member regularly, or the person visits his family, the social network of the person in the society has fallen apart. This means that supporting the person in (re)building this network is important. Here lies explicitly a task for the personal assistant, who is available for every client.  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. 

Mary
Mary is 47 years and lives 30 years in Arduin, Vijvervreugd as it was called before.
‘In all  those years a lot is changed here’, Mary assures. ‘When I came to Vijvervreugd, I felt just like in a hospital, but I was not sick at all. The personnel all wore the same white uniform. The ward where I lived was called “De Merel”. We slept in a dormitory together with 11 others. We didn’t have a place for ourselves and were the whole day with the group.’

‘I didn’t like it at all’, Mary says, ‘I am not a person to live in a large group. I was never really at ease. I kept harping about getting a room of my own. They always promised me that I would get one, but it never happened.’

‘What I found the worst, was taking a bath with all together. I am rather prudish, but still everyone had to take a bath every day. Than we all stood naked waiting for our turn. It was quite a flop’, she says.

‘And than you directly had to put on your pyjamas, at five o’clock in the afternoon, imagine, I then was twenty years of age.’

‘What also annoyed me very much, was that the sister made a note every time you went to the toilet. If you was not in the book for two days, you got a laxative, to make you go to the toilet. To me that was very humiliating’, Mary tells.

‘That toilet then also had those stupid swing doors, so that I never felt at ease. I much rather went to the toilet when I was visiting my grandmother’.

‘My grandmother also often gave me some nice soap, because the soap we got there I really found disgusting’, she tells.

‘Because I didn’t feel well in the dormitory I finally got a small bedroom of my own in the pavilion. Yes, I then was a by blow. I also was allowed to go to my aunt on my own. I went by bus. While the others only were allowed to leave the campus with an escort’, Mary explains.

One day Mary got the opportunity to leave the pavilion ‘de Merel’. As in 1973 the ‘Kruispunt’, the first group home was set up, she first could go stay there for a trial period. After some weeks, they told her that she could stay. She liked living there very much.  However, it was difficult to get along well with everyone.

Over the years, Mary moved a few times. She lived in several group homes in Middelburg en Souburg. Now she has got for two years a place of her own in Middelburg. She lives there on her own in her apartment. Mary does the housekeeping without a problem, she pays her own bills in the bank. Sometimes her aunt supports her when she wants to do a larger purchase, like a television.

Her personal assistant comes by every week and then they drink a cup of coffee together. If Mary has a problem, they try to solve it together.

Mary likes to do needlework and reading a book. She also likes watching television in the evening. She watches some soap-series, but she often misses a part. ‘If I get a visitors then I don’t watch, but that I don’t mind’, Mary tells. Mary has a friend for about a year. They do not see each other that often, but especially in the weekends, they meet. Then they visit one another to enjoy a talk.
 

Furthermore, each client is offered 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 an ordinary industrial estate. For those clients who formerly had day occupation, this was located on the campus. At present, all clients have day occupation, mostly located throughout the region. About 100 clients with more intensive needs for support have their day occupation in the day-care centre on the former campus.
Exceptions to this are only justified in the cases of clients with severe behavioural problems, who are posing a threat to society or themselves. In these circumstances it is more accurate to speak of treatment instead of living.Nevertheless, a differentiated approach is advisable here too. Living and working in an intensively supportive closed setting, especially if it concerns forced living and working in a group, can often create additional problems. These will have little or nothing to do with the actual disability of the person, but everything to do with life in a group of people that one did not choose, with interactions, frustrations and the inability to make one’s own choices. Guidance and support is, in first instance, necessarily aimed at dealing with these problems in order to maintain the situation at least viable for all parties involved. Often because of this, too little attention is given to the primary intra-psychic problems of the person him/herself. A management model is being operated instead of a support model.  We take the line and have the experience that, even in the case of severe behavioural problems, inclusion in society is often still possible and consequently contributes fundamentally to the well being of the person. As such we wholeheartedly support the argument of Van Gemert (1998) in which he points out that actual integration opens new possibilities for the approach to severe behavioural problems.

 

The practice of self-determination

In Arduin the principle of self-determination gives a lead for all the clients. In practice this is not always easy to realise. However, as stated before, also people with a intellectual disability,  regardless off their dependence and disabilities, can function autonomously. Therefore, in the schooling and coaching of the staff-members, much attention is paid to the principle, possibilities and consequences of self-determination. At present, this notion is one of the fundaments in the culture of the organization.
In this respect, the dialogue with the client 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 dialogue between client and personal assistant is the key. Communication, especially with people with severe disabilities, is not always easy. Staff members in Arduin therefore are intensively involved in the investigation into the development of methods of facilitating communication, more specifically the communication of people with limited (verbal) abilities. Speech therapists of Arduin provide communication courses to staff-members.
In order to be able to maintain the principle of self-determination for these, as well as other clients, 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 support requests directed at the organization.  The personal has a regular contact with the client to speak about his wishes (concerning living, working and leisure), and the ways to give this content and shape. The results of this dialogue can be written down in the Personal Plan of the client. He or she maintains the communication between the various staff members of the organization, the client, his family and/or legal representative of the client. He/she sees to it that the agreed service and care is carried out in conformity with the wishes of the individual client. Therefore, it is fundamental that a personal assistant is not a direct caregiver towards his/her 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)!

Making Choices Himself

Peter is reasonably self-supportive; most daily activities he can do by himself. Still he often needs support. He takes a shower himself, but for shaving and brushing his teeth he gets help. Furthermore, he gets support to get things clear in his life.
Peter has autism, he needs a good day rhythm and cannot handle unexpected changes well. He understands short messages well, but doesn’t speak himself. He can, however, make it clear when he doesn’t agree. If he gets disturbed, he starts flapping his hands. He also bites his wrist if things don’t go as he would like. Sometimes he slams the doors to make it clear that he doesn’t like some things. Peter lives a lot on his own. If things get to busy he retires in his room.
He likes looking at pictures of trains and really likes to see trains in real. When he listens to his Walkman he gets really quiet. Some songs make him sad; sometimes he then starts crying. He has a good contact with his family. His mother and sisters often come to visit him and sometimes he visits them. He knows the caregivers well and gets along well with his personal assistant. He has no further personal relations.
‘We try as much as possible to let the client choose for himself. But of course it is not always easy to get to know what a persons choice is’, Joyce says.
‘Peter cannot say what he would like to eat or what he would like for his birthday. Often you have to understand one another.’
‘Yet one can often in little details let the client choose for himself. If we drink lemonade he cannot say which flavour he wants. But if you put a bottle of coke and a bottle orange juice at the table, he will take what he likes best’, Helen says.
‘If everyone comes home from work around five o’clock, it can become busy. Then Peter chooses himself whether he drinks coffee with the others or he rather makes coffee in his room’, she says, ‘It is nice to see that often in a very simple way a client can take back control in his own life.’

Sometimes small adjustments mean a big change for the clients. Before for practical reasons a number of arrangements were made for the whole group the same, for example bedtime. While most clients could undress independent, everyone had to go to bed at the agreed hour.
Now everyone lives one’s own life. They stay in their own room to do what they like, or watch television with others downstairs. A staff member is present to keep an eye on things. She sometimes suggests a person to go to bed, when he gives a yawn. ‘He wouldn’t take the initiative to go to bed himself’, Helen tells.

For the client of Arduin self-determination in a concrete sense has several meanings.

 
  • 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 occupation or activities outside of their house. 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. There are a wide variety of types of occupation on offer, thus providing a choice. For this purpose the Stichting Arduinse Bedrijven (Foundation of Businesses of Arduin) is established, which is operating a series of businesses in which clients are employed.  These include, for example, a lunchroom/ gallery/ gift shop, guarded bicycle shed with adjoining public toilets, a recycling business with two establishments, gallery/art library, manège, file and paper destruction company, print shop, bakery, launderette, a horticultural nursery, restaurant, soap factory, assembly company, etc. Acting in the theatre society is also considered as an occupation. 
Furthermore, there is a series of occupational day units, with different characteristics, in order to be able to offer opportunities to clients with more intensive needs for support.  Particularly for these clients it sometimes is not easy to offer them truly meaningful activities. One looks for perspective here in offering and elaborating activities with a focus on developing (adaptive) skills, education and personal development.
Also there are special units for the elderly.

Flower shop

‘We went to occupational therapy, so it was called’, Mary tells. ‘We had to assembly or wrap up products. It was often very monotonous and boring work.’ ‘After a while I could get another job at the administration. I had to calculate how much every client had to get paid. At the end of the week, I went with the suitcase with the money to all the sections and everyone got his pay envelope. It was a nice job. Later I also went to the bank. First with someone else and later on myself’, Mary tells.
Before she started working in the Arduin Gardening Mary worked almost two years in Dustoch, the lunchroom of Arduin in the city. Together with the other personnel, she followed a course on how to serve clients. She liked the job, but she wanted more. Flowers and plants were her interest. That is why she applied for a job in the Arduin Gardening. She now works two days a week in the flower shop. There she places the orders for plants, she picks up the flowers herself, she takes care of the shop. In the evening she takes the plants inside and puts the cash in order. Soon she takes a course at the Arduin School to learn about the Euro. She likes it very much in the flower shop, but thinks it a pity that there are no more customers. Apart from this job Mary also works two days in housekeeping.

 

‘Waskracht 2000’

Joyce is Peter’s personal assistant. She stands up for his interests. She is convinced that Peter has enough potential to work with support in a business. Because he could fold well he was contracted on probation in the laundry ‘Waskracht 2000’. There he works now two days a week. The other days he still goes to an occupational day unit.
In the laundry there is always something to do. Two staff members and some six clients work there. The work is shared: the laundry is sorted and put in the washing machine, then dried. Finally, the washed towels are fold and piled up in the baskets. The skirts and sheets are ironed.
Peter can fold the big towels very well; he does it accurate and works on firmly. He sits at a table alone, a bit apart from the others. So he has a good overview and feels safe. He works also in the laundry with a system of pictograms that he handles by himself. Every activity that is done he has on a pictogram. Every time he starts another activity he puts the right pictogram on the table. This gives him a feeling of security. Sometimes it gets to busy at his work. If it is not clear for him what to do when he is ready, he feels disturbed.
Ilse and Joan work with Peter in the laundry. In the beginning they found it difficult to work with him. ‘When he started biting his wrist we didn’t know what to do. But after a while we learned to know him and now we know better what troubles him’ they tell. ‘However, it is not always clear what he means.’

 

  • Option of accommodation

Housing is organized on a small scale. Clients are no longer living in the institution. Arduin has been 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).
In the institution others decided it where and with whom to live. The clients of Arduin choose this themselves (sometimes with support of their personal assistant and/or their parents). There is no more board of placement. 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 a paper with 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 homogeneousness/heterogeneousness of 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 15 people nowadays live on their own, who formerly lived in a group and who would not be able to live on their own. 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.

 

Move Without Problems

Peter lived on a ward in the institute for 22 years. Three years ago he moved to a semi-permanent house on the campus with five others.
Last year he moved to a house in Vlissingen. This was a nice change for him.
Together with his personal assistant Peter went a few times to see the house and he appeared to like it. It was a quiet environment and that is what he likes a lot.
When a place came free in the house, it all went fast. The personal
assistant made it all clear to him. The first days in his new room he was feeling out of his element and tense. But in fact the move went without problems worth mentioning.


Self-determination assumes being informed about possible choices. Therefore, the Informatiewinkel (Information Shop) is set up, which offers a wide variety of informations to clients, staff, parents and others.  The housing bureau, the vacancy bank, the relation mediation bureau, the travel agency of Arduin, the library and the documentation centre all have their seat in the Informatiewinkel, which nowadays is located in the Provincial Library. The personnel also organize lectures and workshops for clients and staff.

 

The practice of personal development in Arduin

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. 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.
Because much importance is attributed by Arduin to the schooling, retraining and education, to lifelong learning an educational centre was started, the ‘Arduinse School’, which is offering a variety of over 50 courses to all clients. Often this is a kind of catching up, in areas where they should have learned about earlier in live. 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, for example, 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. Furthermore a lot of attention is given to personal development in various areas in the work and occupational situation. Some courses are for both clients and staff. The emphasis in the methods is always on learning to learn, inspired by Feuerstein (1993), self-determination as an educational outcome (Wehmeyer, 1997), and learning how to make own decisions and how to stand up for oneself. Hence the ‘Arduinse School’ is one of the pivots of the process of changes. Many clients are keen to participate in courses of the Arduinse School. The staff of the centre themselves develop or adjust many courses, as in the Netherlands there is little educational material, especially with an emphasis on the themes mentioned above.

 

The practice of support

Especially, the support model is seen as important in Arduin in order to give people with intellectual disabilities real opportunities. Often workers and the clients family have been inclined to see obstructions, based on the traditional way of thinking inherent to the old streaming model (Van Gennep, 1997b), with regard to offering a client the opportunity to live in accordance with his/her own wish and choice.  The common belief is that someone should only be allowed to live more normally when he or she is functioning on a higher level, or only if there are less or no more behavioural problems. The latter belief clashes with the experience that behavioural problems are often provoked or aggravated by the imposed living in groups with people who were not chosen by those involved. It was found that when these people live the way they choose - often with fewer people or on their own – these problems tend to diminish or even disappear.
As people live more in a situation of their own choice, often their real need for support gets clear. Instead of interactional problems as a result of living in a group, the problem is grief as a result of the loss of beloved persons in the past, or the influence of epilepsy or a physical disability on the self-image, or the lack of friends, or a low self-esteem as a result of being treated for years as second-degree civilians. The persons didn’t come to his real needs because he needed al his energy for keeping his foothold in the institutional environment.
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 variety, from clients who are receiving very intensive support to clients who only receive a couple of hours of support from a host. Furthermore the individual need for support may also vary from time to time.
Support needs to increase independence, to equip people with a disability with more skills in order to give shape and content to their own life, in circumstances as normal as possible. It needs to increase contentment with the own existence, by means of promoting health and the physical and mental well being.  In the operation of Arduin, the personal assistant plays an important role in mapping out and giving shape to the desired support together with the client. In many cases, it becomes evident that the natural network has to be reconstructed or reactivated.
The method of drafting a ‘Profile of Supports’ (Luckasson, 1992) is used as a instrument when a person and his personal assistant want some grip for getting an overview of the needs for support of a client. The items in this instrument can be discussed with the client, parents and other family-members, staff, friends, volunteers and whoever is important to the client. This method than is at the same time a means of reactivating the social network of the client.
The changeover from offering care to support means for a lot, if not all, of the staff that they have to rethink their function. This applies especially to those workers who, because of their expertise, had a more directive or even decisive role in the past (nurses, behavioural scientists, therapists, etc.). They have to use their expertise now in order to eliminate impediments for and in clients, to help people to develop themselves and to optimise support.

 

Quality management: autonomy, self steering and training co-workers

Sometimes for workers it is difficult to work in this different role and in other circumstances. This means that a lot of attention is needed for schooling and coaching for staff and for quality management.
According to Schalock & Faulkner (1997) two aspects of quality management require to be given attention: the way in which service organizations are governed and the development of good quality co-workers.  The first aspect implies that the focus is put on the client and the co-workers, and involves relationships based on mutual trust and respect, as well as the development of strategies in order to analyse and improve the execution of duties.  As set out previously in this article, Arduin wants to put the client with his own choices, support and educational needs central. 
The second aspect involves the development of the skills with the staff who are working in direct contact with the clients.  Balcazar et al. (1998) point out that, whilst supported living is becoming increasingly common in the USA, a lot of people with intellectual disabilities are not getting the service and support that they require in order to actually achieve inclusion.  Many innovating projects are also badly implemented in practice.  Furthermore, it is often difficult to find qualified personnel.  Based on the findings of their survey, they state that organizations could benefit from training their staff with regard to the aims/targets and values of their philosophy.
It is more likely that the co-workers will be able to implement the values and principles of their organization effectively when they have a clear idea of them.  Furthermore, they appear to have more job satisfaction when they feel that the organization is true to its philosophy.  This kind of satisfaction can have a positive effect on the clients.
As a decentralized supportive organization, which takes the self-determination of its clients as its fundamental starting point, Arduin considers that in this context the autonomy and self steering of the co-workers is essential too.  The coaching style of the guidance provision is based on this. In order to guarantee the freedom of choice and self-determination of the clients, there has to be scope for the co-workers to act creatively and flexibly.  A traditional hierarchical type of organization and working methods do not fit in with the above line of thought.  By clearing the way for self-steering for the team of co-workers it is possible to break with the old regulatory systems and types of guidance provision.
An important condition in this matter is a good system of communication. In an institute with hierarchical lines, with all personnel on a campus, communication is easier than within an organization with many small parts spread in a large region. One has to solve this problem. One of the answers in Arduin is the Extranet, a communication system by way of the internet, which provides continuous and actual information for all parts of the organization and which allows a quick and easy communication by means of e-mail. The training of workers is also considered important as an instrument for supporting the process of change. Most staff members in Arduin have a traditional education as a special nurse in the care for people with intellectual disabilities. It is now seen that this education did not prepare them for the job that now is asked from them. Therefore, there is  a high budget for additional training with the emphasis in the first years on the necessary change in outlook and customs of the staff. A big chunk of the training is provided by the direction and management of Arduin, and by other fellow-workers of Arduin, because they develop the model, through a process of progressive insight.  It also shows explicitly that the management has taken the chosen view very seriously.  There is a constant readiness for and interest in explanation to and discussion with the staff.

 

Conclusion

At present, fundamental shifts are occurring, internationally and in the Netherlands, in the views on and the provision of services to people with intellectual disabilities. In view of the quality of life, inclusion, self-determination and personal development and support are regarded as the guiding principles that are most essential in the innovation of the organization for services to people with intellectual disabilities.
Arduin is an organization in which profound changes are taking place due to these changing opinions. In my opinion we are talking of a cultural revolution. 
In this process, there is a need to further develop the support model for all clients, taking into account the specific needs of people with intensive support requirements. It can be expected that this progressive insight will be subject to further refinements, increasingly doing justice to the concept of quality of life for all people with intellectual disabilities.