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QOL Factor QOL Domain Exemplary QOL Indicators Independence Personal Development Self-Determination Education status, personal skills, adaptive behavior (ADLs IADLs) Choices/decisions, autonomy, personal control, personal goals Social Participation Interpersonal Relations Social Inclusion Rights Social networks, friendships, social activities, interactions, relationships Community integration/participation, community roles, supports Human (respect, dignity, equality) Legal (legal access, due process) Well-Being Emotional Well-Being Physical Well-Being Material Well-Being Safety & security, positive experiences, contentment, self-concept, lack of stress Health Status Nutritional Status Recreation/Physical Exertion Financial status, employment status, housing status, possessions
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 decisions made in the management of Arduin. 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. Only a facilitating organization remains, focused on support of the self-determining client, focused on supported living. An important motto in shaping this organization is “Normal if possible, special if necessary”. The Model ‘Arduin ’
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.
The value of work/day occupation is considered to be of more fundamental importance in one’s life.
An important side -effect of work/day occupation is that one only gets the feeling of coming home, being at home, even having a home if one comes home after a days work / daily activities. When one is in the same accommodation for the whole day, there arises no feeling of home.
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.
The functions of most staff are effected by necessary fundamental changes in this process and they will continue to change. 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.
The practice of self- determination Leading principle in supporting clients is: “ Everyone can make important decisions in his / her life (with the support of a personal assistant) “ Option of accommodation : the housing bureau Option of work : the vacancy bank The practice of personal development Learning by experience: Participating in the community Academy on QOL: Focused on emancipation and self-determination The practice of inclusion: Normal houses for all clients in the community, not grouped together! Foster families for children Work or daily activities in companies and daycentres in the middle of the community The practice of supports: People live in an house where they want to live themselves and work where they want to work themselves and get the supports they subsequently need.
All people want to be in control, want to make their own decisions. We should acknowledge this inner need.
So one should if necessary support people with intellectual disabilities to develop, to grow, learn them to make their own choices, to stand up for themselves. Also one should create the circumstances in which it is possible to make one’s own choices.
Self-determination of people with intellectual disabilities, especially those with an intensive need for support, is often experienced as a concept that is difficult to work with in practice.
Many authors emphasize the importance of the relational aspects in the concept of autonomy and the promotion of a good quality of life.
Van Gennep (1997) argues that choice and control have to be seen against the background of a social net .
Personal autonomy should not be confused with an ideology of independence (Reindal,1999). The notion of ‘control in principle’ implies that the individual is in control of his / her life although others may do the physical or intellectual performance of certain tasks .
Van Gennep (1997) 提出爭論指出 , 選擇與掌控被視為是與社會網絡 (social net) 的背景有所衝突 .
個人的自治不應與獨立這意識形態混為一談 (Reindal,1999). ‘ 控制原則 ( control in principle ) ’ 這概念意味著 這個人掌控他 / 她的生活 , 即使可能需要他人在特定的事務上提供肢體上或心智上的執行 .
How it was: A Map with the care-plan A meeting amongst Professionals The professionals decided How it is: A Personal Plan, internet-based Dialogue with the clients What do you want? How do you want it? The Personal Plan From a “care-plan” to a Personal Plan
Clients are supported in their homes by supportworkers
One of the problems we encountered in deinstitutionalization / the reorganization of Arduin, was that the staff members who were trained to work in an institution are therefore not automatically trained to work in supporting people in community based working and living situations:
A new education for this profession was suggested and implemented
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)!
Quality of Care Focus vs. Quality of Life Focus Quality of Care Focus Quality of Life Focus Perspective Provider Person in his natural network Interest Process Outcomes Content Management of care systems Support and its effects on a personal life Typical criteria for Evaluation Efficiency, cost-effectiveness, planning, consumer satisfaction Long term value-based outcomes on inclusion, personal development and self- determination Structures Actual care systems only need improvement Support needs to serve a persons case, even if this means that alternative structures have to be found
Giving care in an effective way: an institutional way of organising lives of people, grouping people together on the basis of similarities in functioning or disability, treating them all similar.
People were seen as patients.
The food came from the large institutional kitchen.
There was little work or daily activities as the focus was on care.
Support & effects on a personal life: e.g.:
Support is given on an individual base, according to the needs of the individual person. Much emphasis on a normal life as citizen. Not every person gets supports in the same areas or the same amount. People live in normal houses in the region.
People are involved in preparing their meals in their own kitchen as much as possible.
The focus on the organisational, bureaucratic and administrative processes Are the organisational processes running smoothly.
Long term value-based outcomes on inclusion, personal development and self determination:
The focus on continuous, ongoing, evaluation of the quality of life of every individual person is part of the method of the personal plan and part of the job of the personal assistant in dialogue with his client.
The government has encouraged the transition from large-scale care institutions to small-scale distributed services as reflected in the National Program on Community Care (Vliegenthart, 2000). There is however no obligation.
In spite of this major shift in government policy, services in the Netherlands are generally still very traditional. Arduin still is the only institution that has completely deïnstitutionalised.
As Van Gennep (2003) points out there is a splitting in the Netherlands, a bisection, in the support of people with intellectual disabilities.
One the one hand 32,000 people with mostly moderate or mild intellectual disabilities are supported in the community: this mainly concerns people without additional problems (multiple handicap, or psychiatric and behavioural problems). These people profit from the new insights.
On the other hand still about 32,000 people with intellectual disabilities live in institutions: this mainly concerns people with severe or profound and / or multiple disabilities and people with an intellectual disability and severe psychiatric and behavioural problems. Obviously one is inclined to think that people with severe or profound and / or multiple disabilities and people with an intellectual disability and severe psychiatric and behavioural problems are better of in an institution.
The organisation for service providers is in general on the conservative side, as well as some parents organisations.
The Inspection of Health Care (only) by now starts to think in terms of outcomes, in terms of what is necessary for QOL, which could be an important step.
Legislation on several areas (financial support for children at home in the community, inclusive education, financial resources from national to local government, the Swedish government taht wanted all the institutions to be closed by the end of the 20th century )
Research on the consequences supported the proces of deinstitutionalisation
Deinstitutionalisatie: moving people out of the instityutions ánd avoiding that people are hospitalised in institutions !
living how and with who you want ( on your own, with four, with a special somebody, with less support, more independent, in a normal street),
living independent (learning to live on my own, freedom, doing what I want, more time for myself, less support)
learning and support in learning,
work and variation in work,
self-determination (making choices, they may give advice),
relations ( it is nice to work with people together you learn from one another, contacts with cousins, neighbors, it clicks in the street, friends of the football, I like to have more contacts, importance of the family, personal assistant, together is easier and more fun, acquaintances of the church).
All these stories picture the importance of self-determination: being able to do what you want, choosing your own house, your own job, not doing everything together with others, not getting more support then you really need!
For Piet it was a problem that in the past he had to do a lot of activities with the group
Cocky likes he fact that she can choose her work now for herself
Trudy likes he fact that she nowadays doesn’t get more support than she actually needs. She doesn’t have to show consideration with so much others. It was a relief that she doesn’t have to feel controlled all the time.
Willie first did some work placements, before she decide where she wanted to work
They express the wish to participate in the society, of inclusion, and of living in a normal way, in a normal neighborhood, with plenty contacts in he society, with friends nearby, with family, and with others.
Jeannete in the past did’t like at all gong back to the institute from a weekend at her parents home. Now she lives in a small house of her own she likes going home again.
Piet lives in a normal neighborhood and gets far more opportunity to get to know other people from outside the organization.
In some of the stories clients tell us of the inhuman way they were treated in the past:
Mieke talks about having to sleep in a dormitory, with 11 others, not having a place for your own, being in the bathroom at the same time waiting naked for your turn, in pyjamas at five in the afternoon,
Willie tells about still having nightmares about the time that she lived in the institute.
The positive results of the process of deinstitutionalisation in Arduin are in general in line with results elsewhere.
In this process the focus has to be on quality of life: on inclusion, personal development and self-determination
Consistent implementation of the consequences of these ideas and designing community oriented support services requires creativity, nerve and flexibility to change based on advancing insight: strong leadership is required as is a continuous dialogue with all stakeholders.
Much attention is needed for support in (re)establishing the social networks of persons who sometimes for years were segregated from community!
How do you manage the quality of service from home to home? 1
In Arduin the choice was made to focus in the quality management on quality of life instead of quality of care: what is necessary in the organisation to enhance personal outcomes.
Importance of an Individual Support Plan for every client based on QOL-framework and Supports Paradigm.
Transparency: The daily reports in the ISP can be read via the internet. Also parents who have gotten the password from their child can read these daily reports.
In the homes there works a team of supportworkers and mostly one woman or man who is mainly responsible for the housekeeping. This team is autonomous, selfdirective, without a leader. They share the responsibility for the work that needs to be done, and formally divide the several tasks.
For every team of workers there is a coach (10 coaches for the whole organisation), who coaches the team in performing their job
How do you manage the quality of service from home to home? 2
A personal assistant for every client who doesn’t work in (the team of) the home: this person is in a continuous dialogue with the client about: do you get the support that you want and as you need. This personal assistant then supports / empowers the client in his position towards the supportworkers.
Every client has a psychologist who takes responsibility for a good quality of the ISP. He / she supports the supportworkers in implementing the ISP. As we organise it now the psychologist is connected to the house. The psychologist is also responsible for the quality of the pedagogical climate in the home: respect, warmth, self-determination of clients, etc.
There are several protocols, on the website of Arduin, regarding procedures about how to deal with several themes: e.g. sexual abuse, restraints, alcohol, privacy, medication, etc. etc.
Arduin has an ISO 9001-certificat. This implies that on a regular base audits are done, by Arduin-auditors as well as by an external bureau.
How do you figure the staff ratio, especially in terms of economy of scale, workloads, etc?
It is the responsibility of the managers in charge of the houses and workplaces of Arduin to match the support needs of the clients to the staff ratio.
They can be advised by the psychologists on the support needs of the clients. Objective measures are in the scores on the Supports Intensity Scale.
Relatively new in the Netherlands: In the resource funding system in the Netherlands, clients get a ‘package of care’ that correspondents to the support they need. There are 8 packages, ZZP1 – ZZP 8, dependent on how much support one needs. These package give the right to an amount of money as well as to an amount of daily hours support. The Management Information Sytem of Arduin gives insight in the clients with their ‘package’ per house. So the manager knows what he can spend per house.
And what about leisure activities and loneliness for people living in the community?
Social inclusion is seen as an important factor in QOL (Schalock, 2008) with community integration, community roles and participation as important indicators
Leisure is an important indicator for Well-being (Schalock, 2008)
A study of Zijlstra & Vlaskamp (2005) shows very little leisure activities for people with Profound Intellectual and Multiple Disabilities, living in residential facilities, with a very minor proportion spent outside the living unit, and a limited variety of activities
Some of the risks of deinstitutionalisation that are often thought of are empty hours, limited variety of leisure activities, loneliness and passivity .
In a study in Arduin with focus groups one of the results is ‘ that mosts clients are very satisfied with the leisure activities and friendships ’ (Van der Wielen & Calis, 2005)
Feeling lonely is often seen as a disadvantage of deinstitutionalisation, although studies show that this feeling is not dependent on living in the community or in the institution; people are not more lonely living in the community (Kwekkeboom, 2006, 2007)
Loneliness is much less than often thought of (Kwekkeboom, 2007)
Some thoughts on Improving Quality of Life (Schalock et al., 2007)
Individual supports are the means to improve quality of life
The community is the context of a life of quality; service-providers as bridges to the community
In providing services to people with intellectual disabilities it is important to use person-centered planning , to provide support on an individual base and to involve the clients in planning and evaluation of the supports provided
In evidence-based practice the outcomes of supports are measured in terms of QOL and used for quality improvement
A necessary condition to bring about change was the leadership of the CEO and management team.
A focus on quality of life (QOL) and on the support-paradigm was continuous during the program changes. It was concluded that from the eight domains inclusion, self-determination and personal development were especially influential in the shift from ‘total care’ to ‘support’. There is a clear focus on long-term person-referenced outcomes.
It was essential in the change that the focus on QOL was carried through consistently in all of the decisions made, at the organizational level as well as at the individual level.
In this process sometimes a lot of creative thinking is necessary. For example: because of expanding costs of transport, Arduin started its own taxi-company, to reduce the costs of buying cars (taxi company has lower taxes when buying a car). There are no problems, only challenges.
Regarding the focus on QOL there is no “yes, BUT,…”.
Simple communication that provides guidance, knowledge, and understanding
Good communication was very important: a) communication on the processes in the organization with clients, parents and legal representatives (client board, regular meetings with clients and with parents; b) communication with staff members (collective meetings and the works committee).
A good system of communication was an important condition. In an institution with hierarchical lines, with all personnel on a campus, communication seemed easier than within an organization with many small parts spread over the region. The website of Arduin is a communication system, providing continuous and actual information, which allowed quick and easy communication). In fact this was used as a tool for dismantling. Think about a housing agency, a vacancy bank (no placement commissions anymore), the e-mail function, the electronic personal plan of clients including the possibility for parents –if they are authorised- to follow and co-influence at home the ISP of their son or daughter.
The meetings with clients, parents and with staff were also important to engage the important stakeholders in the organisational changes. All staff members in the reorganisation got a job and salary guarantee, and were asked for willingness to change job profiles if this would be necessary.
A lot of energy and time was invested in schooling and training for clients, aiming at empowerment, learning them to speak up for themselves, so they could co-determine the tempo of the deinstitutionalisation, providing them with skills that were helpful in community living.
Also regular and additional training of the workers was an instrument to support the process of change. Workers had to learn to support people in community based settings, with new roles and new responsibilities, as most of them were trained primarily in nursing for people with ID. The emphasis was on values training: changing attitudes and habits of the staff.
Arduin developed in co-operation with two training colleges and two other organizations working for people with ID a new education for Support Workers in the Netherlands.
This huge effort in schooling and training resulted in the Arduin Academy on Quality of Life, in which the Model on QOL is the framework, within which all courses are developed and given.
Organizational changes / generate short term gains 1
The organisation was adjusted fundamentally to working within the support model.
Necessary decisions to change parts of or procedures in the organisation were implemented fast. Often it is best that there is no way back to the old situation: this enhances the appeal on creativity when faced with a new challenge.
Arduin introduced the coaching model and abolished the complete level of the middle management. Hierarchy is at right angles to self-determination for clients. Houses and work- or activity units work with self-directive autonomous teams.
Everything should be new, so that there came no transplantations of old patterns. New job profiles were introduced such as the job of support-worker, who does the actual support in the house or at the work, and the personal assistant.
Organizational changes / generate short term gains 2
As many old jobs disappeared, one searched for the second talent of all staff members to realize the promised job guarantees. For example a former cook of the institutional kitchen now works on ICT.
A lot of bureaucracy was abolished, as the focus had to be on direct support staff. Arduin has a administrative overhead of no more then 8%. Technical and maintenance services were outsourced.
The approach taken to health care was re-organized. The function of the ‘institutional physician’ had to fundamentally change. All clients now have their own GP who provide primary health care on an individual basis. In addition, Arduin employs a registered AVG, (a physician specialised in the care of people with ID) who can be consulted or called in by the local GPs.
Anchoring the new approach in the organization’s culture 1
A System of Supports was developed, incorporating consumers in the development and implementation of their ISPs.
The Individualized Supports System is person centered (i.e., based on the person’s interests, preferences, needs, and natural support network); responsive (i.e., based on a ongoing dialogue between the person and those involved in the supports plan); proactive (i.e., equalizing opportunities with fellow citizens, empowers the person, generating effective social inclusion, and increasing social/community participation); and data based : important is that the System of Supports is based on the pattern and intensity of support needs of every client, measured by the Supports Intensity Scale (Thompson et al., 2004), and evaluated in terms of personal outcomes, measured by the Personal Outcomes Scale (van Loon et al. 2008).
Anchoring the new approach in the organization’s culture 2
In fact the choice was made to focus in the quality management on QOL instead of quality of care: what is necessary in the organisation to enhance personal outcomes. A quality of care system gives no guarantee that existing knowledge about good predictors for QOL, such as social inclusion, self-determination and personal development, are implemented.
This means that indicators for good quality of an organisation are (evidence based) outcome based indicators, linked to the QOL of the clients. Inputs and processes as well as personal outcomes and program or organization outputs should be related to QOL.
In this respect the data from the client-interviews with the Personal Outcomes Scale can also generate organization and location profiles that can be used as important management information.