Quality of Life and the Supports Paradigm as leading Principles  in the Practice of Arduin.

November 2006
Jos van Loon, Arduin

Introduction

Arduin is a Dutch organization providing services for people with intellectual disabilities. First established in 1969, up until about ten years ago, Arduin functioned, under the name ‘Vijvervreugd’, as a residential care institution, day nursery, and a day care centre serving persons with intellectual disabilities. In 1994, when the organization came under new management, there was clearly insufficient quality of care in several respects. An independent study done at the time reached the conclusion that 35% of the inhabitants had fallen through the care net (Van Hove, 1995) and that the agency needed to change its focus. With the help of substantial political pressure and two committees of advice, Vijvervreugd became an independent organization under the new name Arduin, by January 1 1996. A course of action was drawn up. It was decided to draw up a vision on living and work, to formulate the objectives of the organization, and make them concrete. The essential and consequent attitude in this process was that a person with an intellectual disability should be enabled to decide himself how to give meaning and completion to his live. This made necessary a completely different way of organizing as common in the care for people with intellectual disabilities in the Netherlands until then: namely the individual person as the smallest organizational unit, including the splitting up of home living and care. Especially the emancipation and self-determination of people with intellectual disabilities was the most important starting point for quality of life (Van Loon & Van Hove, 2001). Within Arduin, inclusion, emancipation and self-determination are from then on considered to be fundamental to secure the best possible quality of life for people with intellectual disabilities. One of the results was that, Vijvervreugd, the institution in the town of Middelburg, was closed. The 360 former residents were resettled over a wide area in Zeeland and now live in more than 122 houses in 25 different villages and towns (van Loon & Van Hove, 2001).

In this article the processes and impacts of the shift from facility-centred services to a quality of life and individualized supports approach in services and supports for persons with intellectual disabilities will be demonstrated.

Ecological framework

Based on the study mentioned above and other evaluations, and in the course of an action research by the author, the new Arduin became an independent, refocused organization. It immediately developed an action plan whose title was “It Is Really Going to Happen Now” (van den Beemt, 1995). This plan was based on a quality of life focus and the supports paradigm. Specifically, as a consequence of adopting a quality of life perspective, Arduin was transformed from an institution to a new community-based organization, focussing on supporting each individual who in the first place himself or herself determines what he or she needs.  The separation between the three life spheres—accommodation, work/daily activities, and leisure—is fundamentally important in the process of deinstitutionalization and promotion of quality of life. 
With respect to the actual provision of support, the implications of the emancipation cornerstone were carried through consistently in all the resolutions made that structured Arduin’s activities (van Loon &Van Hove, 2001).  At present, Arduin serves about 599 persons: 394 for 24-hours a day (living and work/daily activities), 11 who get support in their homes, 27 short-stay (weekends and holidays), and 168 who come to Arduin for (support in) work/daily activities.  People live in over 122 normal houses in the community, spread over a wide region, work full-time in a great variety of businesses or daycentres, and are supported by support workers according to their needs. An important motto in forming this organization was “Common what can, special what has to”.
For children with an intellectual disability there is in the Netherlands still the possibility that they do not attend school but get an indication for a day-care centre. All children should however have the opportunity to go to school with other children. Arduin has an allowance for a day-care centre but strives for inclusive education. Several children from the day-care centre therefore go to regular schools in the neighbourhood with support of support-workers from Arduin. With one regular school Arduin works closely together in a project in which children with intellectual disabilities have a classroom of their own as base, from where they participate  in the regular classrooms and join the other children.

Strategic management

Quality of Life Focus
A focus on quality of life was continuous during the program changes.  The importance of emancipation and self-determination of people with ID was stressed in order to secure the best possible quality of life. The concept of quality of life was operationally defined and implemented through the eight core quality of life found in the international quality of life literature (Schalock & Verdugo, 2002). From a large action research project we concluded that from these eight domains inclusion, self-determination and personal development were especially influential in the shift from ‘total care’ - as organized within the traditional institutional care - to ‘support’ (Van Loon & Van Hove, 2001).
The individual is encouraged to develop from a position of dependence to one of self-determination. There is a clear focus on long-term person-referenced outcomes. This was accentuated in the decision to dismantle the institution, as well as in choosing a style of management directed towards autonomy and self-direction. The focus was clearly not on short term outcomes such as consumer satisfaction, but on long-term person-referenced outcomes. There had to be a fundamental change in the personal experiences and circumstances of the individuals to such an extent that sometimes parents and staff found it difficult beforehand to believe it would be possible.

Supports Paradigm
In an organization that wants to offer individualized supports to people with ID, the central function is definitely not housing, health, safety, or control, as mentioned above, but the supports in the life spheres which are chosen by the individual him/herself as well as where and how he or she wants these supports. In the course of the process the opinions of the organization’s clientele played an important role in structuring the new organization. At the start, they were interviewed regarding their wants, but actually more by way of the choices they make in the vacancy bank, the housing bureau, and the courses in the educational centre. In this individuals are supported by their personal assistant – this function is explained below (Van Loon, 2003).
Supports in the concept of 'supported living' are offered in first instance by the natural network of the person: parents, family, friends, neighbours, colleagues and volunteers.  It is only when the natural network is unable to offer sufficient support that the social ‘safety net’, consisting of service professionals, comes into action.  In a lot of cases it becomes evident that the natural network has to be reconstructed or reactivated.
Supports have to be offered flexibly: not every person needs support in the same areas or in the same amount.  Thus, the ‘group thinking’ is being abandoned.  Within Arduin there is a wide variety, from people who need very intensive support to people who only need a couple of hours of support from a host.  Furthermore, the individual’s need for supports may also vary from time to time.  Therefore, the individuals are not asked on a once-only basis for their opinions, wishes, or needs, but are continually queried.  People (whether with or without ID) need to have control of their own lives in order to experience a good quality of life. This results in inclusion, self-determination, and empowerment being built into the values and practices of the services offered to people with ID, since the focus of these services is on supporting people, instead of caring for people.  As a result, one should not underestimate the implications of these factors on the needed conversion of an organization. It is, however, our conviction that people with ID themselves have the least problem in getting used to a system in which they get the control in their own life.
By focusing on providing supports, the services provided by the organization had to be adjusted accordingly, going through a transition from ‘providing a total care service’ towards ‘offering the support that the individual desires’ – no more, no less.

Consequences of this Conversion

The process of change from a focus on quality of care towards quality of life inevitable lead to the choice of deinstitutionalisation. After all, if we want to realise a good quality of life for people with intellectual disabilities, living in an institution, this institutional care as such has to be seen as the most important hindrance. In our action research project particular dimensions of quality of life as inclusion, self-determination and personal development seemed to be of paramount importance. This is why a good quality of life for people with intellectual disabilities cannot be achieved in an institutional environment and deinstitutionalization remains as the only alternative. Developing a new model of services, aimed at realising a good quality of life for people with intellectual disabilities however, is more than deinstitutionalization, as deinstitutionalization is  more than closing institutions: much attention is needed to develop an adequate support model or support system for people with intellectual disabilities.
This process leads to a number of changes and consequences at different levels. The most important ones are described next.

Inclusion:
Each person should be able to choose where and how he or she wants to live and work.  Thus, in the provision of supports, an organization needs to focus on maximizing inclusion. Under this notion, individuals are supported in finding ordinary, small-scaled homes in the regular housing market in the region. This applies to everyone with a disability regardless of the intensity of his or her need for supports. Thus, even people with intensive support needs can live in normal houses, which are adapted, as required.  However, this means that there is a greater dependence on the informal social networks of the family, church, the community and volunteers. In the case of children who cannot stay with their parents, it is the policy to look for a foster family in the first instance.  Furthermore, each person can apply for work or day occupation of their own choice in a range of companies and day centres, which are integrated with the local society (e.g., in a gift shop or a gallery in the town centre and companies in ordinary industrial estates).

Self Determination:
The principle of self-determination should be emphasized for all people; however, in practice this is not always easy to realize.  Yet, there is the belief that all people, regardless of their level of dependence, can function autonomously.  To be able to sustain living arrangements under the principle of self-determination, a personal assistant is very important.  Under this model, each individual has a personal assistant that he/she can call upon for support in a continuous dialogue with the organization and in formulating care and support requests directed at the organization. The personal assistant sees that the agreed-upon personalised package of support is carried out in conformity with the wishes of the individual. The personal assistant also functions, when the situation calls for it, as an interpreter or translator of the wishes of the individual, but always explicitly from the role of assistant. The intensity and frequency of this support is totally dependent on the request of the individual (of course, within given financial margins of the organization).  In our experience, on average, a personal assistant spends about three-quarters of an hour each week working on behalf a particular person.
Personal choice is an important ingredient under this notion.  One component of choice under the Dutch example we are using is the maintenance of a “vacancy bank.”  Such a bank permits individuals served by the organization to apply personally for a position in a work establishment or day unit. Work or day occupation is fundamentally important to quality of life; it is one of the fundamental rights in The Universal Declaration of Rights. Therefore, all agency clients, including also those with an intensive need for support, should be offered a full-time job or day occupation.  Another component is the freedom to choose where one lives.  Adults should be able to choose (sometimes with support of their personal assistant and/or their parents) where and with whom they want to live. The “board of placement” which decided where everyone should live was dissolved. Thus, this action enabled more independent decision-making and more people living where they wanted.  Yet, such freedom often entails a process of trial and error.  At the heart of this process is the “housing bureau.”  This bureau monthly issues over the agency’s Extranet an overview of dwellings associated with Arduin that are or will become available. In principle, there is an unlimited variety of ways of living.  The offerings include housing that ranges from independent living with little support, living with a foster family, living on a farm, or in an estate or in the centre of the town, to living in a small group home, and anything in between. Principles such as a homogeneous or heterogeneous group structure become irrelevant; what is important is individual choice.

Personal Development:
Personal development is related directly to opportunities, experiences, empowerment, and personal decision-making. That is why people are asked to make their own decisions (large or small), and thereby take control in their own lives. To gain skills in personal decision-making, adults are offered a range of education and training opportunities 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.

Organising Supports
At Arduin, to fully implement individualized supports, strong leadership and good communication was indispensable. It became obvious that the changeover of the whole organization from offering care to offering support meant that staff had to rethink their functioning. They now had to use their expertise to optimise supports in order to eliminate impediments for and in the individuals they helping, so that the individuals develop their own abilities to manage their lives.
During the course of this transition, we observed that it was at times difficult for staff to work in this new role and in other circumstances as most staff members in Arduin were trained primarily in nursing for people with ID.  As their training did not prepare them for these new roles and responsibilities, regular and additional training of the organization’s workers was considered an important instrument for supporting the process of change.  A large budget for additional training was developed and the emphasis during the first years of the transition was on changing attitudes and habits of the staff. A recent development is that the organization Arduin now has, in co-operation with two training colleges and two other organizations working for people with intellectual disabilities developed a new schooling for Support Workers in the Netherlands. This schooling started in 2004. In this schooling we want to base on the new demands on staff, from the concept of support and directed at a good quality of life. We defined the profile, and as such the competences a support worker needs, for this schooling, based on the overview of support functions and representative activities, in table 1, first published by the AAMR (Luckasson, 2002).

Table 1:  Support functions and representative activities

A good system of communication within the organization was an important condition.  In an institute with hierarchical lines, with all personnel on a campus, communication seemed easier than within an organization with many small parts spread over a large region. To solve this problem, Arduin looked to its Extranet, a communication system by way of the internet, which provided continuous and actual information for all parts of the organization and which allowed quick and easy communication by means of e-mail (van den Beemt, 2004).

Medical Care
One of the consequences of deinstitutionalization was that the former function of the ‘institutional physician’ had to fundamentally change. To have one single medical practitioner looking after all the ex-residents was logistically impossible. In addition, such an arrangement would run counter ideas of inclusion. However, Arduin remained, under Dutch legislation, responsible for providing appropriate health care to all its 24-hours clients, who included people with a wide range, variety and intensity of support needs.
As a result, the approach taken to health care was re-organized. All clients now have their own GP who provide primary health care on an individual basis. These 43 GPs are contracted by Arduin and paid by Arduin for their services. In addition, Arduin employs a registered AVG, (a physician specialised in the care of people with intellectual disabilities) who can be consulted or called in by the local GPs. The Arduin AVG, by virtue of his responsibilities, has the medical notes of each client at his disposal. An agreement has been reached between the local GPs and the AVG about the allocation of responsibilities. In broad terms, the GP is responsible for treatment of acute and everyday medical matters, while the AVG provides additional support for more complicated matters such as psychiatric problems and challenging behaviour, nutritional disorders and epilepsy. Essentially, the role of the AVG is to give support and guidance to the staff and, if applicable, the parents of the Arduin clients. They can also call upon other Arduin experts, such as psychologists, orthopedagogues, speech therapists and physiotherapists (an orthopedagogue is an academic in the field of special education, who in the Netherlands often has a responsibility in support and treatment of people with intellectual disabilities).
The closure of the institute also necessitated fundamental changes in the way medicines were dispensed: the institute’s pharmacy had to be closed down. A step-by-step plan was drawn up together with the then pharmacist at the institute. First a procedure to safely dispense medicines to the houses was put in place. It was agreed that GPs in rural areas who had a pharmacy in-house would dispense the medicines themselves. Otherwise, medicines would be dispensed from two local pharmacies.
The results of a survey among the GP’s serving clients of Arduin indicate that: (1) GPs rated the overall quality of the medical care provided to Arduin clients to range from very good to normal; (2) participating GPs are generally supportive of the idea that people with intellectual disabilities should be a patient in a normal GP practice; (3) they perceive themselves adequately equipped to provide primary medical care to people with intellectual disabilities; but (4) regard as important the availability of external expert advice, in this case from the AVG.
We did conclude that it is possible to provide high quality medical care to people with intellectual disabilities in community settings if specialist support for the handicap-related problems is well organized.

In table 2 you find an illustration of the concrete changes in an organisation that did the transition from a quality of care focus to a quality of life focus (De Waele et al., 2005).
           

Table 2. The Quality of Care vs. Quality of Life Focus in the case of Arduin

Facilitating individualized supports

Personal Plan
Working with individualized supports means that the persons themselves decide what supports they want and need. It is common in the Netherlands that there is the Care Plan that determines the provision of care. The care plan:

• Is written by the professionals
• Has a focus on Quality of Care
• Its requirements are mainly instrumental
• It’s elements are: Goals, Actions, Evaluations
• Has a number of juridical requirements

This Care Plan is therefore not suited for provision of supports from a quality of life focus. The communication with the person however should be based on equality (De Baets, 1998). This is why in Arduin we developed the “Personal Plan” that replaced the Care plan and in which an ongoing dialogue between the individual and his or her personal assistant is the key. In working with the personal plan:

The personal assistant then helps the person in formulating his or her need of supports in the Personal Plan, and does this on an ongoing basis. Also on an ongoing basis he evaluates with the person the supports as received. As there is a strong focus in Arduin on inclusion, self-determination, and personal development, these domains are  guiding principles in the dialogue on needs and goals, and in the evaluation of supports. 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 (Van Loon et al. 2005; Depuydt & Van Loon, 2002)). 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. This method is gradually replaced by using the Supports Intensity Scale (Thompson et al. 2004), as will be discussed further in this article.
Before, the professionals wrote the care plan and decided about the content, whereas in the personal plan the client writes his own personal plan: the client says what he wants and what he needs to have a good quality of life.
The care plan has the format of a map, is the result of a
 conference among professionals, whereas the Personal is a plan on the internet, as a result of a d
ialogue with the client about w

In quality of life organizations, quality assurance is a process of monitoring quality enhancement techniques and evaluating quality outcomes. Arduin in this respect has chosen to go for an ISO 9001/2000 certificate, because the ISO 9001/2000 system is a good way of doing just this (Van den Beemt & Brouwer, 2004). Arduin certified in November 2004.
In this ISO quality system we introduced the eight domains on Quality of Life by Schalock. The bureau that does the certifying, Veritas, was impressed by this Quality of Life thinking, and also completely got the feeling of the right to left thinking (Schalock & Bonham,2003)! Thus, ISO can, as we see it, be a good system to insure quality of support (towards QOL) rather than quality of care! Other quality systems here in the Netherlands are after all based on quality of care!

A project to implement the use of the SIS as a fundament for person centred planning and for planning person centred finances

When we were thinking about how to do this, we learned about the Supports Intensity Scale (SIS). We see a lot of possibilities to make use of it in the renewal of the system of care in our region, going from care to support, focusing on a good quality of life. The SIS has its base in the supports paradigm. It is a multidimensional scale designed to determine the pattern and intensity of an individual’s support needs. The SIS was designed to (a) assess support needs, (b) determine the intensity of needed supports, (c) monitor progress, and (d) evaluate outcomes of adults with intellectual disabilities. People in a person’s network then need to provide support that enables the person to engage in chronological-age-appropriate activities in community settings that are consistent with his or her personal goals and preferences. (Thompson et al. 2004).
In Arduin the SIS will be used to develop individualized person centred support plans in line with the four-component planning process as suggested by Thompson et al. (2004): (a) identifying a person’s desired life experiences and goals, (b) determining the pattern and intensity of an individual’s support needs, (c) developing an individual support plan, and (d) monitoring the progress of the plan. This process is undertaken with the client by the Regional Support Bureau. The independent status of this bureau should empower the client and his / her parents / relatives in his position towards the service organisation(s) that provide paid staff.
We made an electronic version of the SIS in Dutch, and started the process with a random sample of 30 people who were clients already, as well as with all the new clients from January 2005 on. We do an interview with the person, his / her parents or relatives and the personal assistant (in the case of clients of our organization), on the person’s desired life experiences and goals, using the same areas of supports as in the SIS, and then we do the SIS. Until now this method has proven very useful, although we had to develop some routine to get a unambiguous interpretation of the concepts.  We did a simple validity check by correlating the scores on the SIS with the levels of intellectual disability and we saw a good correlation.
Further we developed a formula to translate the scores on the SIS to financial means. In the Netherlands an organization gets paid for the number of clients its serves, where until now the need of support of the individual doesn’t play a role. On the basis of the SIS it appears to be possible to redistribute the support budget of the total organisation according to the scores of individual persons. It also is important to note that the parents / relatives who participated in the random sample were very enthusiastic about their involvement in determining the support needs of their child / relative. Compared with the actual Personal Plan method, the SIS provides a more complete, more refined picture of the support needs of a person, with better possibilities to evaluate and measure person-referenced outcomes.
In the course of 2006 we went through the process of interviewing all clients of our organization together with their parents / relatives and their personal assistant. The next step will be that all clients will have a support plan based on the SIS.

References

Van den Beemt, P. (ed.) (1995). Het gaat nu echt gebeuren. Visie, doelstellingen en organisatiebeschrijving. Middelburg: Cluster Verstandelijk Gehandicaptenzorg Walcheren.

Van den Beemt, P. (red.), (2004) Arduin. Het model in de praktijk. Op weg naar zelfsturing. Van zelfbepaling naar zelfsturing. Antwerpen-Apeldoorn: Garant

De Baets, K. (1998) Respectvol bevragen opent toekomst. Kwalitatief interviewen van mensen met een verstandelijke handicap als middel tot vraaggestuurde zorg. Licentiaatsscriptie Orthopedagogiek, Vakgroep Orthopedagogiek: Universiteit Gent.

Depuydt, V. en Loon, J. van (2002). Arduin. Ondersteuningsdenken en autismespectrumstoornis. Protocol voor het opstellen van een ondersteuningsprofiel. Leuven: Garant.

De Waele, I., Van Loon, J. Van Hove, G. Schalock, R.L. Quality of Life versus Quality of Care: Implications for People and Programs. Journal of Policy and Practice in Intellectual Disabilities, vol.2, nr 3/4, 229-239

Feuerstein, R. (1993) Laat me niet zoals ik ben. Rotterdam: Lemniscaat.

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

Luckasson, R. (Ed.) (2002). Mental Retardation, Definition, Classification, and Systems of Supports. 10th Edition. Washington: American Association on Mental Retardation.

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

Schalock, R., & Verdugo, M. A. (2002). Handbook on quality of life for human service practitioners. Washington, DC: American Association on Mental Retardation.

Schalock, R., & Bonham G.S. (2003) Measuring Outcomes and Managing for Results. Evaluation and Program Planning 26 (2003) 229-235.

Thompson, J.R., Bryant, B.R., Hughes, Campbell, E.M., Craig, E.M., Hughes, C.M., Rotholz, D.A.,  Schalock, R.L., Silverman, W.P., Tasse, M.J., Wehmeyer, M.L. (2004). Supports Intensity Scale, Washington: American Association on Mental Retardation.

Van Loon, J. (2003). Empowerment en de persoonlijk assistent. Het nieuwe werken in de zorg voor mensen met een verstandelijke beperking. Praktijkboek Casemanagement. 's Gravenhage: Reed Business Information.

Van Loon, J., Van Hove, G., Broekaert, E., Riedijk, M., and Tanihatu-Wondergem, B. (2005) Support in practice. A Supported Living project with a woman requiring intensive support. In: G. Van Hove and K. Kristiansen (editors) Inclusion in Europe. Gent: Story Scienta

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

Van Loon, J. (2003). Empowerment en de persoonlijk assistent. Het nieuwe werken in de zorg voor mensen met een verstandelijke beperking. Praktijkboek Casemanagement. 's Gravenhage: Reed Business Information.

Van Loon, J., Van Hove, G., Broekaert, E., Riedijk, M., and Tanihatu-Wondergem, B. (2005) Support in practice. A Supported Living project with a woman requiring intensive support. In: G. Van Hove and K. Kristiansen (editors) Inclusion in Europe. Gent: Story Scienta

Van Loon, J., Knibbe, J., Van Hove, G. (2005) From institutional to community support: Consequences for medical care. Journal of Applied Research in Intellectual Disabilities, Vol 18, Part 2 , 175-180

Wehmeyer, M. L. (1997) Self-determination as an educational outcome: A definitional framework and implications for intervention, Journal of Developmental and Physical Disabilities, 9(3), pp. 175–209.