Support in Practice
A Supported Living Project with a Woman Requiring Intensive Support

Abstract

In Arduin, an organization for services to people with learning disabilities in the Netherlands, the emancipation and self-determination of people with learning disabilities has been positively adopted as fundamental in order to secure the best possible quality of life of the clients. The organization is going through a transition from ‘providing a total care service’ towards ‘offering the support that the client desires’. This was accentuated in the choice to dismantle the institution.
In 1998 Arduin decided to establish a project in which the model of supported living could be realized with a client needing intensive support. Parents and family members were closely involved in the process. The woman in question lives in a house of her own, and support is provided on the basis of her profile of supports.
We describe the process in four phases: the phase prior to the move, the move itself, the starting phase, and the period of consolidation. Within each phase we identified a number of themes which characterized that particular phase and which were important to the process as a whole. With regard to the findings relating to the Quality of Life we opted for an analysis based on Schalock’s eight domains. The changes in the woman’s life indeed improved her quality of life in terms of emotional well-being, interpersonal relationships, inclusion, personal development, self-determination, and material well-being.
On the basis of Klein’s 9 principles (1994), as discussed in the theoretical section, we explored how the support model was realized in relation to the woman.
In frameworks throughout the article the story as told by the parents is given.

Introduction

People with learning disabilities are going through a process of emancipation and growing awareness. Bradley and Knoll (1990) and Van Gennep (1997,a) talk of a shifting paradigm in the concept of support for people with learning disabilities.

In the Netherlands service providers have attempted to adapt to this new development, but the services for people with learning disabilities in general still are very traditional (van Loon & Van Hove, 2001). In Arduin, an organization, that provides services for people with learning disabilities, emancipation and self-determination are considered essential. The services provided by the organization had to be adjusted accordingly, and they are also going through a transition from ‘providing a total care service’ towards ‘offering the support that the client desires’ - neither more, nor less.

In 1998, in view of these developments, Arduin decided to establish a project, in which the model of supported living could be realized with clients needing intensive support. Lydian T. was a client in need of this kind of support. Parents and family members were closely involved in the process, as they were striving for a better life for their family member. The purpose was to gain insight into the process, and to evaluate the practical and financial consequences.

Since the ninth edition of the AAMR handbook (Luckasson, 1992) mental retardation is no longer defined as a permanent characteristic. Emphasis is laid upon the type of support needed by each individual in order to lead the best possible life. For years there has been criticism surrounding the institutional care of people with learning disabilities (e.g. Goffman,1962; Rosenberg, 1994; van Gennep,1976; O’Brien and O’Brien,1993; Van Hove, 1996). On an international level many hold the view that large-scale care provisions inevitably lead to unacceptably low standards of care, and that therefore institutional care should be abolished. However it is crucial that a good alternative be introduced in the form of a service directed towards the support of people with learning disabilities.

    The central issue is how people (with or without learning disabilities) can live, reside and work (with or without support) in such a way that they experience an optimal quality of life. Schalock (1996) explores the domains that are most influential in determining the quality of life for each individual: emotional well-being, interpersonal relationships, material well-being, personal development, physical well-being, self-determination, social inclusion and rights. In our opinion inclusion, self-determination and personal development are especially influential in the innovation of care provision (van Loon & Van Hove, 2001). These themes transcend the limits of traditional institutional care and make other types of services necessary.
In an organization that strives to offer support for people with learning disabilities the central function is no longer the provision of care, housing, or daily structure. Instead they provide the support deemed necessary by the client him/herself. The client not only judges the degree of support needed, but also where, how and by whom they want it.
An important evolution in this context is the development of the concept ‘Supported Living’. According to Lakin and Smull (1995) supported living is based on an ‘elegantly simple idea’ that was ignored by generations of professionals who were too busy “repairing” people with learning disabilities. This idea is simply that people with learning disabilities are, first and foremost, just people. They too want their own home, control over fundamental decisions concerning their own lives, support from people who care about them and to be assimilated into the community in which they live.  Above all the concept of supported living recognizes and respects the similarities which people with learning disabilities share with their neighbours. 

According to Klein (1994) the principles of supported living are:

1. Individualization
2. Everybody is ready / there are no criteria to receive support
3. Future planning
4. Use of connections / assistance of all who want to and can help
5. Flexible supports based on the individual’s schedule and needs
6. Combining natural supports, learning, and technology
7. Focusing on what people can do
8. Using language that is natural to the setting
9. Ownership and control by the person himself or herself

In summary, supportive living is not a model, the answer, or some new magic. It is, however, a way of viewing people and assisting them in ways that enable these individuals to receive the support they need and to live in a home they want.

According to O’Brien (1995) above all supported living is about having a safe and decent home of one’s own, choice, and personal assistance and support from people who respect and care for one. Steman and van Gennep (1996) describe the concept of ‘support’ as giving the person in question access to knowledge, means and relationships which are important to them and which enable them to live, work and play in the community. Further we follow the definition of support as given by the AAMR (Luckasson, 1992).

The support model remains theoretical if not tested and applied in practice. In the Netherlands projects have been initiated to provide support for people with a limited need of it, thus enabling them to leave institutions. Our question is: how can this model be applied to people who need intensive support? In view of new developments in the provision of services for people with developmental disabilities Arduin decided, in 1998, to found a project that would reflect these innovations. The questions we wanted answered in this project were:

1. Which aspects can be discerned in the process whereby the institutional model is replaced by the support model?
2. What does the application of the support model mean in terms of the quality of life?
3. In which way can the support model be applied to people with a intensive need of support and (serious) behavioural problems?

Method of Study

The choice of Lydian T.

Two factors favoured the testing of the support model on Lydian T.. The organization wanted to test the support model, and this wish coincided with intensive talks between Lydian’s family and the Arduin organization.
Lydian was at that time a 35 years old woman with multiple handicaps who also, at that time, displayed severe behavioural problems. Tested with the Stanford-Binet she had a mental age of 2;2 years. On the Vineland Adaptive Behaviour Scales in the field of Daily Living Skills (personal, domestic, community) her developmental age is assessed at 2;7 years, and in the field of Socialization  (interpersonal relationships, play and leisure time, coping skills) her developmental age is assessed at 1;5 years. She has epilepsy. She needs support in washing and dressing and using the toilet; for longer walks she uses a wheelchair. She communicates with gestures and some inarticulate words. Lydian is a cheerful and helpful woman, enjoys her personal possessions such as  her dolls, and reacts enthusiastically to pleasant activities. Sometimes she strongly reacts at the unrest of other clients, when she wants more attention or disagrees with what is happening, and then she sometimes pulls at peoples hair, tries to hit people, throws objects etc.
Both the organization and her family had hoped that a move to a smaller house with six residents, three years before, would improve the quality of her life but despite this move the situation had reached an impasse. Her parents and brothers began to consider solutions outside the scope of the residential facilities as offered by Arduin. At this point the Arduin management proposed letting Lydian participate in a project in which the supported living model would be implemented. The family asked for some time to think it over. They read about the concept of supported living and questioned people who knew about it.  At last, on Lydian’s behalf, they said yes to the project. It was at that time not thought possible to communicate about it with Lydian herself.

The Parents
She spent almost thirty years of her life in Vijvervreugd and then in Arduin. She was seven when we entrusted her to the care of the institution. She lived there in several pavilions. The last three years she spent in a new building on the campus of the institution. It was a nice house with 6 residents and everyone had their own bedroom. It was a vast improvement but unfortunately it didn’t meet Lydian’s requirements. She had steadily deteriorated throughout the many years that she spent in the institution. There was no schooling or training. Having to sit still and do nothing is hell for Lydian. She is always playing: colouring, cutting out, threading beads, playing with Lego and with dolls, etc. Her things always got lost in the pavilion. In the end she played– when there was anything to play with – on a mat on the ground. I don’t blame anyone for this because that’s just how daily life is in an institution, where one lives in groups of 9 and  10.

In 1998 discussions were already taking place concerning Lydian’s behaviour. It was becoming a problem for those taking care of her but her behaviour was also problematic when she came home on Sunday. She was sometimes aggressive and she had the look of a ‘cornered animal’. In the day centre things went well. There she could play, cuddle, make music, and go riding. She could also care for the people with a physical handicap. Finding a solution was difficult. In the early spring the manager approached us with a proposal that we’d never even dared consider. Lydian, given the appropriate support, could live in a house of her own. It was a whole new vision. We had a talk with an orthopedagogue of Arduin, who was very involved in Gentle Teaching and relation therapy. We were given books to enable us, as parents, to explore this whole new approach and teaching method. I attended a lecture in Goes with the professor from Gent University and spoke to him personally, and as a result I finally agreed to commit to this new project. We want to opt for quality; we want to give her the HAPPINESS that she’s had to forego for so long.

People involved

After the parent’s agreement there was intense collaboration between mem­bers of the organization and Lydian’s parents, brothers, sister-in-law, staff mem­bers from her house at the institution and those involved in her daily active­ties, her personal assistant, the speech therapist, behavioural scientist(s) and mana­ger. In the course of time the composition of the group varied somewhat due to staff changes.

Data

The data for this study were gathered using qualitative research methods, and were compiled from notes and observations, open-ended interviews, questi­onnaires regarding the quality of life, daily reports made in Lydia’s personal plan and articles which appeared in magazines and newspapers during the project.

Table 8.1: Overview of the data used for evaluation in this study

From July till October 1999 ten of the people involved in the project were interviewed: two staff members from Lydian’s former house, three support-workers from her new house, her personal assistant, her parents and her brothers. The open-ended interviews were conducted by Special Education students from the University of Ghent, a Pedagogy student from the Polytechnic in Tilburg and a behavioural scientist involved in the project. Dialogue was initiated with the question: « You are involved in a project in which Lydian T. is supported by a model of supported living. Can you tell us how you see this project and how you experience it in relation to Lydian’s quality of life? »
The interview focused on the factors pertaining to quality of life as formulated by Schalock (1996) - emotional well-being, interpersonal relationships, material well-being, personal development, physical well-being, self-determination, social inclusion and rights. The student – interviewers were instructed in the concept of quality of life and in interviewing by one of the authors and the behavioural scientist involved in the project . From August 2000 until December 2000 fourteen participants were interviewed. These were two support-workers from her house, the speech therapist, the personal assistant, the coach, her parents, managers, sister-in-law, brother, two nieces, and a support-worker in charge of daily activities.
At the end of the year 2000 an evaluation took place and the findings until then, including the content of the interviews, the information from the daily reports and from the observations, were discussed with those involved. This discussion was used to explore the main issues of the findings and to discover new topics for the coming period.
In December 2000 Lydian’s parents wrote a report recounting their experiences with the project up until then.
In order to evaluate the Quality of Life on an individual level one of the authors drafted a Quick Scan. This Quick Scan is a ‘kitchen table instrument’ based on Schalock’s eight Quality of Life domains. Within each domain the most important indicators are specified, and parents and other close associates, support-workers and - where possible - the person him/herself, are all asked to assess the quality of life within each domain. This is done on a five-point scale: very good – good – satisfactory - not satisfactory - bad. For each assessment per domain an explanation was asked. In the spring of 2001 this Quick-Scan was completed by parents, the personal assistant, four support-workers and the manager.
In June 2001 the findings until then, including the content of the Quick-Scans, the information from the daily reports and from the observations, were discussed and evaluated with those involved.

Documentation on the Internet

Both the management of Arduin as well as the family thought it important that other people could follow the project. A policy of complete openness was adopted regarding the entire project. To this end a website was created so that the process could be followed from day to day. It also includes Lydian’s personal plan. The address is www.arduin.nl/lydian. Several articles appeared in the press and the regional television also covered it. Many accused Arduin of violation of privacy but in an interview Lydian’s brother and sister-in-law refuted this point of view. An important feature of this documentation put on the internet is that people can react to it, as several experts in the field in the Netherlands and Belgium were explicitly asked and agreed to do.

The Parents
There will be an Internet site. Naturally our permission was asked, and the question was thoroughly discussed amongst family and support-workers. There are many mentally handicapped people who lead independent lives. Lydian, however, is ‘low level’ and cannot decide for herself what she does and does not want. There are more people like our daughter and we hope that this Internet site will open doors for them. It only attracts those eager to learn from it or people interested in the new vision. 

The results

The first question to answer was: “Which aspects can be discerned in the process whereby the institutional model is replaced by the support model?”

With regard to this course of the process we examined the data collected for a pattern, and looked for themes that would enable us to adequately describe the whole process. We finally decided to describe the process in four phases: the phase prior to the move, the move itself, the starting phase, and the period of consolidation. Within each phase we identified a number of themes which characterized that particular phase and which were important to the process as a whole.
The results were classified into the following categories:

1. The phase preceding the move
2. The move itself
3. The begin phase
4. The consolidation period

Within each phase we examined which themes played a significant role in replacing the institutional model with the support model.

The phase prior to the move

This phase covered a period of about one year prior to the move. A lot of thinking was done by the core group. Lydian herself did not yet participate. The problem was that one did not yet know how to communicate with her about the forthcoming move. Questions that the core group tackled were: Where is Lydian going to live (her house)? How can we best support her (support profile)? Can we expand her social network? How do we tell Lydian about the move (communication)?  In this phase the core group decided to meet every two weeks in order to keep the momentum going.

A house of her own
When Arduin first proposed letting Lydian live in a house of her own, the family experienced the suggestion as threatening. They were used to the fact that Lydian lived on a "safe and protective" campus. Would she be able to deal with it? How would the people in the neighbourhood react? Could she go back if the project failed? Finally the family decided to accept the challenge together with Lydian. They carefully chose a house for her. Her brother described it as “made-to-measure for her. It’s a very comfortable house in a quiet residential area and there is no thoroughfare."
Lydian's house is located in a neighbourhood in Vlissingen and is one of a group of houses specially suited for small households and elderly people. It’s adjacent to a park. The house has a living room, one bedroom, kitchen, bathroom and a shed, is well kept and at walking distance from shops and public transport. One of Lydian’s brothers lives just around the corner, and her parents and her other brother live in a nearby village.

How can we best support Lydian?
An analysis was made of Lydian’s strengths and weaknesses according to the methodology of the AAMR (Luckasson, 1992), resulting in a support profile. In 1998 Arduin had just started to introduce personal planning through means of a fairly simple dialogue together with the client or legal representative. The support profile can contribute to this. One of the dangers of a support profile is that it can lead to a static approach. A personal plan is a dynamic document better able to accommodate the changing needs and desires of the person in question.  In Lydian’s case the support profile indeed formed the basis of her personal plan.
           
Can we enlarge her social network?
At first Lydian’s social network was very limited. One of the staff members from her house in the institution said: “Now her world consists of this group of people with whom she doesn’t really get along”. Her parents and brothers were the only real members of her natural social network. Much was expected from the new support method. The openness of the neighbourhood was an important factor in the parent’s choice of house. In an interview her brother and sister-in-law explained: “Lydian’s neighbours are largely elderly people and people with physical handicaps. The neighbourhood is a quiet one and the neighbours have more time for a chat with Lydian. Here she has an excellent chance of being assimilated. Lydian herself seeks social contact with other people, especially with children or people walking their dogs.”

Communication with Lydian
The urge to communicate with Lydian herself increased. How could we talk to her about everything that was going on and make it all clear to her? And how could we enable her to choose for herself? Making one’s own choices is one of the characteristics of the support model. It was decided that as long as we couldn’t consult Lydian, the opinion of her parents and brothers would be decisive. At this time the speech therapist was engaged. She began by assessing Lydian’s level of communication. Apparently Lydian had a pronounced capacity for communication. Because time was short before the move, they started by using photographs and pictures as an aid to communication. She was capable of understanding pictograms but there was not enough time to teach her the meaning behind the symbols. Communication was transferred by the speech therapist to the family and support-workers, together with the necessary procedures. In this way a foundation was laid enabling one to really converse with Lydian: the beginning of self-determination?

The Parents
The decision was made. A whole new phase started. The manager paved the way. To begin with new people had to be found to provide support for Lydian. A house was needed and we soon found something in the “Westerzicht” neighbourhood  in Vlissingen. Furniture and household appliances had to be ordered and paid for. We were given lots of assistance and everyone was enthusiast about the new project. The house is not very big but the neighbourhood  is a good one and the view of the park is nice. There are always lots of people with dogs who already know Lydian quite well.

• The move

Lydian moved in the summer of 1999. Her parents saw the move as a climax, and it generated quite some anxiety about what the future would bring.  It was an exciting part of the process because it entailed not just a change of residence, but also of staff members. New support-workers were appointed. The parents were involved in the application procedure and had an equal say in the final choice of candidate. The advertisement was based on the support profile. The parents chose people whose personality they saw as being compatible with that of Lydian. The management looked for people who were interested in the project and keen to participate in it. Lydian gets support on a continual basis. There is always a support-worker there for her whenever she is not at work, with her parents or relatives, or at a club. This is done by five persons who have all together 3.1 fte. Most support-workers came from the institution and were also new to the process. In order to familiarize them with the underlying concept, several meetings were organized around the theme of support thinking.

The parents
And then, on the 18th of August, the day of the move dawned. It was like the start of a new life. For those counselling her it was also a whole new way of working and it was new for us as parents too.

•  The start phase

Those concerned also referred to this phase as the catching up phase. One support-worker said: “This is just the start. We’re still coping with teething troubles.” This phase may not have been necessary if the person came here straight from her family’s home. The transfer from the institutional model to the support one is a major undertaking and demands a great deal of energy. One has to unlearn institutional habits and ways of thinking.
What was important in the start phase and throughout the period of consolidation was the assumption of new roles for all those concerned. Expanding Lydian’s social network was another important point, as was learning to deal with Lydian’s challenging behaviour in the new situation. Another focus was on the development of Lydian’s new skills.
Her parents said: “If Lydia were again seven years old, we’d adopt this approach immediately. Her behaviour would then be very different to what it is now. Now we see lots of copycat behaviour, for example, the way in which she hits her chin. She’s done that for a few years now, ever since she saw someone else doing it.”

The Parents
From the 18th of August everything was new. Lydian found it exciting. Our impression was that she thought she was on holiday. Nevertheless the situation took some getting used to. Trust had to be built and there were lots of ups and downs.

New roles
In the beginning phase, all those involved needed to discover their own roles. In an interview one staff worker said: “We’d discussed the idea of supported living beforehand, but one needs time, as a team and as an individual, to grow into it. In the beginning we saw lots of institutional things.” Not much thought was given to the family. “We wanted to spare them. We talked about them a lot but we always concluded: “You can’t ask that of the mother!” Also the collaboration between the caretakers (those directly involved in the care of Lydian) and the personal assistant  changed. A month after the move the personal assistant revealed that she sometimes still experienced difficulty with the new way of working. She was no longer sure exactly what her job as personal assistant consisted of. The coach (whose most important task was that of supporting support-workers) also had to adapt her approach. Lydian didn’t like support-workers conferring with the coach in her house and would take the coach’s arm and escort her to the front door. This meant that she had to meet colleagues and plan supervision interviews elsewhere. The behavioural scientist, whose responsibility was advising support-workers and supervising the process, also had difficulty adapting to the new work method. Caretakers also found that the process took a lot of getting used to and found it inexplicably intense. An example of this was Lydian rejecting help with getting dressed. Before one could simply have helped someone else, but now one had to leave and only come back when called. One support-worker expressed it as follows: “You abdicate power. You become subordinate. Personally that cost me a lot of effort.” Lydian clearly gained more control.

Lydian’s self-development
Initially nobody noted the development of any new skills. What was noted was that Lydian regained knowledge and skills that she’d lost over the course of time – doing the dishes and helping with the cleaning for instance. This soon increased and she became more and more able to solve small problems. She not only washed the dishes, she also dried them and put away them away and cleaned the draining board. In the beginning she had simply done the dishes and then retired to the living room.

The parents
There is achieved so much – things that we should never have thought possible. What especially pleases us, as parents, is that she seems happy. She radiates well-being.  Her home is really her home and her staff  take her seriously. They want to help her learn and she is learning – housekeeping for example. She cooks, and helps chop and stir. She takes care of herself too.”

Learning to deal with Lydian’s challenging behaviour
Lydian’s challenging behaviour disappeared for a while, probably because she thought she was on holiday, but then reappeared. Some support-workers quit. Some of the new support-workers deliberately chose not to delve too deeply into what was formally referred to as Lydian’s behavioural problems. “That was Lydian’s past and I want to start with a clean slate.” Two months after the move one of the support-workers remarked: “Lydian’s problematic behaviour is gradually decreasing. Now when I come in she gives me a kiss and a caress. The more I work with her, the faster the contact grows.

Lydian's social network
In the beginning phase Lydian joined several clubs for people with learning disabilities. Initially the intention had been to expand her social network to include people without learning disabilities, but this had to be reconsidered. There also was too little time to make it feasible. Lydian sometimes barely had time to herself, and this entailed revising her work and social and club activities. As several people mentioned, Lydian’s love of pets was the main point of contact in the neighbourhood. Her mother told how the local dogs would wait for Lydian to come home from work on  the bus. She would reward them with a dog biscuit and in this way contact was established with her neighbours. Nevertheless people found it premature to speak of real integration and this was often a source of disappointment. One member of staff also referred to it as a period of catching up. The contact with her natural network was no longer quite so natural, and contact with neighbours and friends, which would normally have been spontaneous, now had to be worked on intentionally.

Toward a change in daily activities
Prior to the move, Lydian had experienced no problem with her daily routine. This consisted of a full-time and varied project of activities in which she participated with pleasure, together with eight other persons. Some time after the move she started refusing to go to her unit of the day care centre and indicated, through her behaviour, that she wanted to spend her days in some other way. It caused people to wonder if she was learning to make her own choices.  Her personal assistant thought that, compared to the rest of her new regime, the occupational centre no longer provided enough challenge.

•  The period of consolidation

After a year all those concerned were interviewed again. The general conclusion was that a base had been established and that everyone had achieved a degree of stability in their new roles. After a while, having been part of a dynamic process for a certain period, people started warning each other of the danger of rigidity. Several people expressed this anxiety and wanted, in one way or another, to keep the ball rolling.

Roles
The roles now seemed clearer. The parents commented on how different their present relationship to support-workers was and compared it favourably to past experiences: “Before you were only involved if you turned up on Sundays, and then you just had to hope that the person on duty could provide you with some information. Now the contact is direct. We talk about both pleasant and difficult things and encourage the new members of staff. Some support-workers are just like family.”|

Lydian's self-development
The attitude adopted by staff and family members gave Lydian the chance to take initiative. When she did so, the staff responded enthusiastically and her choices were respected.

The Parents
We feel that a whole new period of life has started. We’re constantly discovering new things. We also dare to do a lot more with her. At home (I mean at our house) she’s much more enterprising. She comes into the kitchen when I’m cooking. She no longer asks for quite as much guidance from her father when visitors – strangers to her – come to the house. She has fun with her brothers, nephews and nieces and sometimes laughs till she cries. When Lydia is at her brother’s house she wanders quite a way into the garden to play with the cat and remains there for at least a quarter of an hour. A year ago she would never have done that. Now when we take Lydian into town in her wheelchair she sees all kinds of things and tries to articulate what she sees.

Dealing with Lydian's challenging behaviour
The support model didn’t cause Lydian’s behavioural problems to disappear, nor was the miraculous transformation of her behaviour the aim of the project. However the people surrounding her were now better able to understand her behaviour. One support-worker said: “Lydian now has to trust me and I her. The confrontations were turbulent. For example in the bathroom she’d sometimes yank furiously at my clothes. You learn to read her signals.” People told how Lydian initially had no confidence whatsoever. Especially in the night she called out a lot. Looking back on the year during which she supported Lydian, one staff worker said: “In the beginning we put ourselves under far too much pressure. She suddenly had to make all kinds of decisions. One should do that gradually and limit her choices. By imposing limits one makes growth possible.”
However people did find that Lydian was “easier.”  On the whole she appeared happier.

The Parents
Of course we are sometimes suddenly confronted with a problem. In the beginning there were quite a few confrontations with new support-workers: where does one draw the limit? In retrospect it seems that that period was quickly over. Luckily! You so much want to make her understand, to tell her: ‘these people want only what is best for you. Make the most of it.’ There are times when she has accidents and wets her bed or her pants. At home it happened innumerable times.  Sometimes I ask her if she needs to go, or I tell her to go to the toilet. Occasionally, after her day at the occupational centre, she can’t make it to the toilet. That’s not her fault though – sometimes the bus ride takes a long time.

Lydian's social network
The expansion of her social network was now underway. It quickly became obvious that the process would require time and patience. It was not yet feasible for support-workers to leave Lydian alone when neighbours came to visit. Everyone was of the opinion that it wasn’t good to force the contact. Everyone experienced the contact with the girl’s club (a few girls who got together one afternoon a week in the community centre and which Lydian had earlier joined) as special and spontaneous. One of the girls from the club regularly came to visit Lydian, bringing her dog with her. By now Lydian was capable of choosing which people she wanted to come and visit her, and which people she wanted to visit. She’d made friends. In many cases she had gotten to know them through the Arduin Institution. Her personal assistant wondered if she shouldn’t look for volunteer visitors and the staff discussed this amongst themselves.

Communication
Lydian also learnt a lot about communication in that first year in her new house. By now they were using a communication booklet. Lydian was calmer when the spoken word was supplemented with visual aids such as photographs or pictograms. Communication was experienced as a real eye-opener. Support-workers did everything possible to enable Lydian to follow what was going on, to enable her to understand what was meant. Communication had become a mission. Dialogue with Lydian had now really begun.

The parents
Guidance from the speech therapist is also very important – or rather the work with pictograms. Lydian’s exercise book gets thicker every day and she can look up what she needs herself. It’s wonderful that so much has become possible. The speech therapist has now discovered a new opening in the form of sign language. Lydian has a lesson once a week but the staff, and we as parents, also get together to practice with the speech therapist. Lydian really likes it. It’s very instructive but it’s also fun for everyone who works with her or visits. Some of the fine motor movements are still difficult for her, but she does try.

• The second question to answer was: “What does the application of the support model mean in terms of the quality of life?”

With regard to the findings relating to the Quality of Life we opted for an analysis based on Schalock’s eight domains.
The changes in Lydian’s life were indeed meant to promote an improved quality of life. In order to gain insight into the impact this project had on the quality of Lydian’s life, interviews taken in 1999 and 2000 were analysed according to Schalock’s eight domains. In addition the self-designed Quick Scan relating to the Quality of Life (see above) was completed in 2001.
All of this revealed the following:

Lydian’s emotional well-being was reported to clearly improved shortly after the move in 1999. Her mood was better, she was calmer and seemed pleased with herself. The year 2000 yielded the same conclusions. The improvement stabilized. In general she seemed happier and her behaviour was less problematic. The Quick Scan confirmed this impression; her emotional well-being scored good (x4) satisfactory (x3) and good/satisfactory (x1). It would appear that Lydian’s personality was given to somewhat fluctuating moods.

In the area of interpersonal relationships and inclusion a greater degree of family involvement was immediately noted in 1999, and some contact was also established in the neighbourhood. The increased family involvement became even more pronounced in 2000. The contact with the whole family was easier and Lydian assumed a “normal” place in the family; for example she visited her family more readily than before, and they her. The neighbourhood contacts also expanded. In 2001 the Quick Scan once again confirmed this impression. Interpersonal relationships scored good (x3) and satisfactory (x4) thereby indicating that Lydian now found relationships easier. Inclusion was rated as good (x2) to satisfactory (x4) but also x1 in the satisfactory to unsatisfactory range and x1 unsatisfactory. The explanation given for this was that she was assimilated in the neighbourhood, but that the network remained somewhat limited and that expansion was difficult.
In 1999, in the area of personal development, Lydian was perceived to flourish immediately. In a short period of time she achieved more independence in several spheres (personal hygiene, household tasks.) In 2000 it transpired that this development had continued in many areas. She could do more than people had initially realized.
The 2001 Quick Scan relating to personal development produced 2x good ratings, 5x satisfactory ratings and 1x unsatisfactory rating. Her adaptive skills in the home situation, in her house, had particularly improved.
In the area of self-determination it appeared, in 1999, that the staff allowed her to make more of her own choices in her new house. By 2000, however, she was obviously making more of her own choices; Lydian’s house had clearly become her own.
In the 2001 Quick Scan her scores for self-determination were very good (x2) good (x3) and satisfactory (x3). The explanation given was that she had evolved in this area, but that her communication difficulties still formed a barrier. Nevertheless here too there was talk of growth.
Lydian’s material well-being was defined as perfect in 1999. Her house was considered particularly well adapted to her needs. The 2001 Quick Scan rated her material well-being as good (x2) to very good (x5) and x1 satisfactory. She has her own house and wants for nothing.
Her physical well-being was hardly touched upon in the interviews. In the Quick Scan Lydian’s physical well-being was rated as satisfactory (x4) to good (x3). Her epilepsy, motor limitations and dental problems required attention.
The Quick Scan generally rated respect for Lydian’s rights as good (x5) to satisfactory (x2). People indicated that this theme needed constant re-evaluation; one of the points made was that the rights and control that she been denied, first be returned to her.

The Parents
As a family we’re delighted that she’s doing so well. We appreciate all the support-workers putting so much thought into how they can best do things. We hope that she can continue to learn. She gets on much better with other people. The Arduin School seem to be a good school for Lydian too. She’s amassed quite a few certificates – care for personal appearance, buttons and zippers, household chores, and now she’s busy with a cookery course. She’s doing well and practises at home. The last holiday gave us hope for the future. A lot has been achieved thanks to the cooperation of everyone involved in the project over the past year. They’re guiding her towards greater independence. There are ups and downs, but we’re on the right track.

The third question in this research was: In which way can the support model be applied to people with a intensive need of support and (serious) behavioural problems?

On the basis of Klein’s 9 principles (1994), discussed above in the theoretical section, we explored how the support model was realized in relation to Lydian:

Discussion
In their account the parents clearly defined where the problem lay in the institutional care of their daughter: in the years she had spent in an institution her condition had steadily deteriorated. There were no training or learning programs and the inevitable group living had many disadvantages. Lydian’s move to a house of her own precipitated changes that the parents would not have believed possible. They are especially pleased that their daughter seems happy.

At the beginning of this project we wondered under which conditions we could apply the support model to Lydian and how, in practical terms, it could be applied to people requiring (very) intensive support. What are the obstacles and pitfalls? What implications does this have for the process whereby the institutional model is replaced with the support model?
To begin with one of the most basic conditions is that the person in question has a house over which they exercise complete authority. In Lydian’s case we see that her house is her own and is experienced as such, and this is considered very important.
Working with people trained in an institutional context would seem to complicate the process. Nor does it appear to facilitate the task for them. Support-workers trained in the provision of care found that the support model entailed unlearning many habits and learning new patterns and roles. They do seem to have however the resilience to do so.

As far as the question of concrete support is concerned, the use of a support profile as methodology can offer clear and practical guidelines as to how best to extend the model to individual clients. One cannot stress enough that support needs to be individual, flexible, and puts the priority on a good quality of life. Important factors in this context were the numerous meetings with all concerned in which her future plans were also extensively discussed. The support model primarily emphasizes maintaining those skills that she already has and then creating new learning possibilities within her own living conditions. One sees learning becoming especially functional in a natural context where there is no problem of generalisation. As a result Lydian clearly developed in this situation, notably in the area of household work, caring for herself, and communication.

The latter is especially important since communication is essential if the person him/herself is to resume control of their life. The speech therapist also provides support in this area. Lydian can make her needs clear, not least because her counsellors genuinely want to teach her and listen to her.
Her social situation also expanded, for example by being accepted into the girls club in the community centre. The process revealed the importance of looking for possibilities that allow an optimal degree of client participation, for example by exploring various channels of communication. Nevertheless the expansion of her social network still requires work. One can ask oneself whether the simple fact of Lydian’s living there does not enrich society. It is important that such a project be seen as a communal undertaking demanding a profound commitment from all concerned. One cannot foresee all the ramifications of the process beforehand.

We also wondered what the application of the support model would mean to Lydian in terms of quality of life? The domains most central to the quality of life – inclusion, personal development, and self-determination – were also what made the difference in Lydian’s case. In these domains, as in the area of interpersonal relationships, a clear improvement in the quality of her life was noted and had a discernibly positive effect on her emotional well-being. Having her own well-appointed house meant that Lydian’s material well-being was perceived as very good. O’Brien (1993) rightly states that supported living is not about changing or treating people. Lydian continues to be a woman with whom it is not always easy to interact. However her new situation offers more possibilities of (learning) to deal constructively with this.

   In conclusion, the implementation of the supported living model has, up until now, largely had an impact on aspects of Lydian’s private life such as accommodation and leisure activities. In the near future, more attention will need to be given to the issue of work/daily structure in the pursuit of supported employment. In this context, it is worthwhile to mention that only recently she started working in a second-hand shop. This she enjoyed so much, and she performs so well,  that after a few months she was offered a full-time job. Now she is trained here in performing a variety of tasks that needs to be done.

The Parents
As parents we’re really glad that we had the courage to choose this way for our daughter. We’d like to thank everyone who helped make it possible. We see now that very damaged people can be offered an acceptable life. Lydian can do far more than we realized. When we come to visit, now she asks us in her own way – with signs - if we’d like coffee and she hangs our coats up. Those busy with Lydian’s well-being might not realize what a valuable gift one bestows on a fellow human being when they are finally given the chance to belong a little.

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