D
IFFERENT
D
ISABILITIES
A
CCESSIBILITY FORP
EOPLE WITH DIFFERENT DISABILITIES INC
OMMUNITY ANDW
ELFAREO
RGANIZATIONS INA
MSTERDAMS
TEFANIE VANZ
ALJ
UNI2012
Student nr: 608 2890P
REFACE
Finally its here; my master thesis for Social problems and social policy of the sociology department of the University of Amsterdam. Because I could have never written this thesis without help of others, I would like to use this opportunity to thank the people that have supported me and who have made this thesis a possibility.
First of all I would like to thank my thesis supervisor Patrick Brown for his constructive input and endless support. Although I have not listened to his very wise words ‘500 words a day takes the stress away’, I have happily stressed this thesis together. I have found him to be a very enthusiastic and dedicated thesis supervisor, which took time to review my work no matter how busy he was. Also I would like to thank Rineke van Daalen for her support during the thesis seminars. When she said ‘my research plans were going to be huge’ I thought it wouldn’t be that big. However I found that even though I’ve narrowed down the focus of this thesis considerably, I still do not have enough space to do justice to all that there is to say about this subject.
Furthermore I would like to thank Rick Kwekkeboom and my other colleagues for their endless patience, trust and support. Besides my direct colleagues I would also like to thank the OSA and the research board of the local government of Amsterdam for initiating this very relevant and interesting research project. Off course I would also like to thank all my respondents for their valuable input. And the directors of the organizations for enabling me to interview the staff members. Finally I would like to give my special appreciation to the contact persons who, even with their busy schedule, have taken the time to meet me and to organize the group
interviews.
Finally, Ross, thanks for the graph and your patience, you can have your girlfriend back now.
Stefanie van Zal
Amsterdam. Not only equal access for people with and without disabilities, but also for people with different disabilities. For this, the social model of disability, in which structural solutions are preferred over individual ones, and community care, in which care in and by the
community is considered the ideal, will be assessed on their applicability for people with different kinds of disabilities. The nature of a certain disability can have an influence on the degree of access that can be provided and guaranteed. This subject, providing equal access for people with different disabilities, (e.g. Physical, sensory, intellectual disabilities or mental health problems), was discussed in 8 group interviews with in total 43 staff members of welfare and community organizations. They discussed whether the nature of a disability had any influence on their willingness, confidence and ability to provide equal access. In these group interviews, three central themes came up that will be discussed. First of all, labeling seems to be an important theme. How does the staff recognize and anticipate certain disabilities and how do they use a ‘disability’ label once it is recognized. The second theme that comes up is stigma. In this part will be discussed how the staff deals with stigmatizing views that could be held against people with certain kinds of disabilities, both personally and by other visitors. Finally, communication and support was an important theme. Do certain aspects (e.g. insight, acknowledgement, social skills) of a disability affect the way in which the visitors with a disability are able to ask for help, or even demand structural adjustments? In this research project I will attempt to identify the characteristics of a disability that complicate providing equal access.
T
ABLE OF
C
ONTENTS
PREFACE II
ABSTRACT III
1.
INTRODUCTION 1
2.
THE ‘AWBZ PAKKETMAATREGEL’ POLICY 5
2.1
THE POLICY REFORM IN DETAIL 5
2.2
HISTORICAL AND POLITICAL CONTEXT 8
2.3
PRESENTATION TO THE PUBLIC 10
2.4
CONSEQUENCES & EFFECTS 12
2.5
CONCLUSION 13
3.
THEORETICAL FRAMEWORK 14
3.1
COMMUNITY CARE 14
3.2
THE SOCIAL MODEL OF DISABILITY 16
3.3
LABELING 19
3.4
STIGMA 21
3.5
COMMUNICATION AND SUPPORT. 24
3.6
CONCLUSION 26
4.
METHODS 28
4.1
INSTRUMENT 28
4.2
SAMPLE 30
4.2.1
THE ORANGIZATIONS 31
4.2.2
SAMPLE CHARACTERISTICS 32
4.3
ANALYSIS 32
4.4
STRENGTHS AND WEAKNESSES 33
4.5
ETHICS 34
5.
RESULTS 36
6.
ACCESSIBILITY 38
7.
LABELING 41
7.1
LIMINALITY 41
7.1.1
VARIATION 41
7.1.2
AMBIGUOUS LABELS 43
7.2
LEGITIMACY 44
7.3
THE USE OF LABELS 47
7.3.1
APPLYING THE RULES 47
7.3.2
EVERYDAY INTERACTION 48
7.4
CONCLUSION 49
8.
STIGMA 51
8.1
VIEWS FROM THE STAFF 51
8.2
VIEWS OF VISITORS 55
8.2.1
EXPECTATIONS OF INTERACTION AND INTEGRATION 55
8.2.2
EXPERIENCES WITH INTERACTION AND INTEGRATION 58
8.3
CONCLUSION 60
9.
COMMUNICATION AND SUPPORT 62
9.1
ACKNOWLEDGING A ‘DISABILITY’ LABEL 63
9.1.1
LACK OF INSIGHT 63
9.1.2
REJECTION OR CONCEALMENT OF A ‘DISABILITY’ LABEL 65
9.2
SOCIAL SKILLS 68
9.2.1
SOCIAL NETWORK 70
9.3
STRUCTURAL ADJUSTMENTS 71
9.4
CONCLUSION 73
10.
CONCLUSION 75
10.1
LABELING 75
10.2
STIGMA 77
10.3
COMMUNICATION AND SUPPORT 78
10.4
OVERVIEW 79
10.5
IMPLICATIONS 81
10.5.1
POLICY LEVEL 82
10.5.2
ORGANIZATIONAL LEVEL 83
10.6
LIMITATIONS 84
BIBLIOGRAPHY 85
APPENDIX: 94
1.
ORIGINAL QUOTES 94
2.
QUESTIONS 98
1. I
NTRODUCTION
Recent budget cuts in the exceptional medical expenses act (AWBZ), have led to an increasing focus on inclusive policy for people with disabilities. Rather than supporting people to
participate in social activities individually with help of a professional, community and welfare organizations are stimulated to improve their accessibility. This way they can accommodate people with a light disability that have been excluded from their professional support through the AWBZ insurance coverage.
Before this budget cut, people with long-‐term illness or disabilities could claim professional support to participate socially by, for example, visiting a sports club or community centre. The assessment for this insurance coverage is based on a set of indicators that represent daily activities on which the ability to live independently is measured. This budget cut resulted in several changes to these indicators, besides people with light disabilities no longer qualify for individual professional support. In order to limit the possibly harmful effects of this policy measure, local governments have been given a budget to offer alternative support.
As a way of finding a structural solution to make it easier for people with a disability to participate in these social activities, the local government of Amsterdam has decided to
stimulate community and welfare organizations to improve their inclusive policies, and become more accessible (Gemeente Amsterdam, 2011). They have done this by allowing the social entrepreneurial organization of Amsterdam (OSA1), to develop a training program about each
type of disability for the staff of these organizations. This was supplemented by training for managerial staff in which they worked on developing a more inclusive policy for people with
1 Ondernemerskring Sociale Sector Amsterdam: http://www.osa-‐amsterdam.nl/
disabilities. Finally, they funded a research project to evaluate the effects of these efforts on accessibility. This thesis forms a small part of this research.
The overall goal of the research project is to explore the effect of the policy implementation from the visitor’s point of view, as well as evaluate the experiences with accessibility of the staff of the various participating welfare and community organizations. The visitor experiences with regard to accessibility are captured three times over a time span of two years, through pre-‐structured, semi-‐ open interviews. The experiences of the staff are evaluated through two focus groups, once at the beginning, and once in the very end. It is the first measure of staff focus groups on which I will focus on in this thesis.
The staff’s perspectives on accessibility, and their experience with people with disabilities, are valuable information because the staff plays a big role in establishing mainly social accessibility. This research will be about social as well as physical accessibility, though the focus lies on the social aspect. This is mainly because in earlier research, the physical accessibility had priority; the research was very practical and quantitative. Through examining the height of the entrance and the width of the doors, the social accessibility was hard to grasp. The researchers were unable to reflect on the social accessibility because it is more abstract, fluid and subjective than the physical aspect. In this research, through focusing on experiences rather than actual facts about the buildings, I hope to get a good understanding of both the physical and the social aspect of accessibility, and what this means for people with different disabilities. It should be said beforehand that these terms in reality are intertwined. Someone who cannot enter a community centre because it hasn’t been made accessible is unlikely to feel welcome.
The set of ideas that local organizations should provide accessible services, rather than the national government providing individual adjustments are related to the social model of disability. In this model, a difference is made between impairment as the medical condition, and the disability, which is considered to be caused by structural barriers in society that disable the individual from fully participating (Oliver, 1996). Not the person itself is disabled; the environment is not enabling enough to provide equal access to everyone. Another influential
ideology that is used to push this policy reform is community care. Here it is argued that people with a disability have come to rely on professionals and the government too much, and that they should be stimulated to find solutions in their own network.
Although both ideologies of the social model of disability and community care have been tremendously important in shaping the discourse about thinking about disability and what this means for participation in society, they are also much debated. In this thesis I will attempt to uncover the disability related factors that complicate the use of these ideologies for social policy and practice. I expect that there are characteristics in the nature of certain disabilities that will make these ideologies less applicable.
I will attempt uncover the disability related factors that influence the applicability of these ideologies by researching the level of accessibility that can be achieved and maintained by the staff of community and welfare organizations in Amsterdam. I expect the staff to reflect on the differences between disabilities and the different approaches to providing an accessible environment this entails. The group of people with light disabilities that no longer qualifies for AWBZ covered professional support is very diverse. I expect that both the level of accessibility, but also the amount of support from the community differ profoundly for people with different disabilities. The disability related characteristics that I expect to be of influence on this
difference, are the clarity and legitimacy of the disability label, stigma and the ability to communicate their needs for support or structural adjustments within the organization.
The difference in effect of this policy measure with regard to people with different disability, calls for a more effective use of the ideologies of both community care and the social model for social policy purposes. These models are not readily applicable to all people with disabilities (Taylor, 2005; Williams, 1996), this could result in a more detrimental effect of the policy measure for people with disabilities with certain characteristics. I will argue that this should be avoided by using the social model of disability as input for the indicators that are used to assess whether someone has a need for professional support. By taking societal, network and
will be done to the social and cultural context in which the disabled person is embedded. This will possibly result in a more effective and fair utilization of these ideologies for future policy measures.
The aim of this research is to find out which aspects of the nature of a disability influence the level of accessibility that can be achieved and maintained by the staff of community centres for people with different disabilities. I will attempt to do this by having group interviews with staff members of Community and welfare organizations in Amsterdam. Their experiences
concerning people with different disabilities, as well as their personal views and expectations with regard to accessibility will be discussed.
In Chapter 2 I will first introduce the policy reform more into detail. I will dive into its historical and political context, the way it is presented to the public and the most recent results of this policy measure. I will then move on to discuss the more theoretical and ideological background of the social model of disability, community care and discuss the different factors that I expect to be of influence on the level of accessibility that can be achieved. In chapter 4, I will set out my research methods, and go through the steps I’ve taken to gather data. I will start the results chapters with a quick overview of the subjects that have come up during the analysis of the data, after which I will give a short impression of the views of the staff members on
accessibility and what this entails for people with disabilities. In chapter 7 I will go further into detail about labeling and its implications for the everyday practice of the staff members. Here, both the clarity and the legitimacy of labels were discussed, as well as how to treat an
individual once a label is recognized. In chapter 8 about stigma, the several aspects that are of influence on the views of the staff are discussed. This is discussed both in terms of their own personal views, as well as their expectations about the views of visitors and its implications for interaction and integration. In the final results chapter, the impact of certain disability
characteristics on communication and support will be explored. This chapter is divided into sections about acknowledging a disability label, social skills, and structural adjustments. I will conclude with an interpretation of the results, after which I will discuss what this implicates for
2. T
HE
‘AWBZ
PAKKETMAATREGEL
’
POLICY
From the 1st of January 2009, people with ‘light disabilities’ no longer qualify for individual,
professional support to socially participate. Before, people with light forms of sensory, physical, intellectual disabilities or mental health problems received professional support to, for
example, visit a community centre or a sports club. Now, the idea is that the client should find a solution within their own network or community, and that community and care organizations should be more supportive and accessible to accommodate this group of people with
disabilities.
In this chapter I will explain more about what the policy change entails exactly and how it is presented to the public. I will then go into detail about the political and historical context in which this policy reform is embedded. Also, I will elaborate on the way this policy reform is presented and justified to the public, and look at some of the socio-‐moral backgrounds of this policy reform. I will conclude by drawing on both recent and earlier policy reports and research to give an overview of the policy outcomes and the effects on the group of people that is affected by the policy reform.
2.1 T
HE POLICY REFORM IN DETAILThe AWBZ is a compulsory insurance that translates as the ‘exceptional medical expenses act’. It is paid for automatically through national income tax. This insurance is especially for people with exceptionally long-‐term or expensive care needs, which are too costly to be paid for by their regular health insurers. For the first year the regular health insurer is required to pay for his clients, after that, the national government takes over the costs and pays for it using the AWBZ-‐budget.
This insurance is for people with long-‐term disabilities or illnesses of all kinds and used to consist of home care (Ondersteunende begeleiding: OB), of which the main goal was to improve the clients independence, professional support (Activerende begeleiding: AB), aimed
at improving participation, and finally treatment (behandeling); both in-‐patient or out-‐patient. These three functions have now been re-‐categorised as support and treatment. So the two functions of home care and professional support have now been merged into ‘support’. The goals no longer involve participation and improving independence, but only improving independence and preventing in-‐patient treatment (VWS, 2008a : 6).
With this policy reform, the Ministry of Well-‐being, Health has cut the budget in three different ways. First of all, the inclusion criteria for the insurance were narrowed down in order to limit access. Second, the amount hours of support that is provided is being limited. Finally,
responsibility for people with psychosocial problems such as homelessness, victims of domestic violence and elderly with psychosocial problems is decentralized to the local governments of cities. The limitation of access will have as a result that some people with disabilities will no longer qualify for professional support (VWS, 2008b). I will now elaborate on these terms of access.
The terms of access to this function of support have changed. People with disabilities can qualify for AWBZ insurance if they go for an appointment at the CIZ (Centrum voor
Indicatiestelling Zorg), which translates as the Care Assessment Centre. They assess the way and degree people’s disability influences their ability to live independently, and decide on the kind and amount of care or treatment that someone should receive in order to live a
reasonably independent life. Before, the following 9 indicators were used to decide how much support someone needs to be able to do the daily activities underlying each indicator:
1. Independence; this involves the possibility to have social contact, to control one’s own life and to organize one’s own finances etc.
2. Mobility and movement; the ability to move by themselves both inside and outside the house.
3. Problem behaviour; the way in which destructive, deviant, aggressive or obsessive compulsive behaviour influences their degree of independence.
4. Psychological functioning; the degree in which concentration, delusion and hallucination influences their degree of independence.
5. Memory and orientation; the way in which delusional perception of time, place and person influence their degree of independence.
6. Personal hygiene; the degree to which a person can eat, wash, dress and use the lavatory independently
7. Household; the degree to which a person can independently organize their household which includes taking care of meals, clean clothing and light cleaning activities. 8. Societal participation; the degree to which people are able to independently build up
and maintain social contacts and relations and the degree to which they are able to attend social activities outside the house.
9. Psychological well-‐being: the way depression, fear, loneliness and emptiness influence people’s ability to live independently.
(VWS, 2008a)
On each of these indicators, people’s disability is scored to have a light, medium or severe influence on some of the underlying activities that accompany each indicator. As of the 1st of
January 2009, only people with medium or severe problems on the first five indicators will still qualify for support from the (VWS, 2008a). This means that people who experience, for
example light problems on one or more of the first five indicators, and severe problems on one or more of the last four indicators, do not qualify for support anymore. This means that an estimated 27% of people who originally qualified for AWBZ, now no longer qualify (VWS, 2009b). The way of assessing people’s support needs on the basis of daily activities is critiqued by Williams (1996). He argues for a more all-‐encompassing way of assessment by not only including standard activities but also the “individual’s own experience and political analysis of the structures and contexts within which the activity takes place” (Williams, 1996 : 4). This is because a light form of intellectual disability can, for example be considered less of a problem in a farm village than it might be in a big city. Even though the social model of disability is used to justify why collectively organized support services by local governments are a better and more effective solution than individual support. These indicators are very much focused on the
individual and his abilities to live independently, and not so much on the social, cultural, environmental context. In the policy documents about the future of the assessment methods, simplification and standardization is on the agenda. It is argued the current process involves too much bureaucracy and should be made easy to apply and uniform across the country (VWS, 2008b; 2009a). I will now go more into detail of how this policy reform fits into its historical and political context, and how this act came to what it is today.
2.2 H
ISTORICAL AND POLITICAL CONTEXTThe AWBZ was initiated in 1968 to ensure the most basic care for people with chronic or long-‐ term disabilities or diseases that lived in care institutions. Later this act was broadened to also entail care of elderly people. The inclusion criteria to qualify for care paid for by the AWBZ, broadened slowly over time, by which more and more people could apply for residential care, professional support and home care (VWS, 2008b). In 2007, a new act was installed, the social support act (WMO). The goal of this act was to improve societal/citizen participation in order to achieve social cohesion, which considered a necessary condition for the AWBZ policy reform to (work out well). Participation can be explained in two different ways, first, to take part in social activity, including having a social network, being a member of a sports club, or going to the cinema. Second, to contribute to society by volunteering, helping out in your social network and family (Kwekkeboom, Jager-‐Vreugdenhil, 2009 : 16).
The stimulation of participation is to be achieved by decentralizing several care tasks from the national government, which were covered by the AWBZ, to the local governments. The idea behind this is that local governments are literally closer to the citizens and know their needs better. Also, the local governments were already arranging some of the care facilities such as integration, social welfare and social housing. Letting the local governments organize the other care facilities as well would have many benefits like less bureaucracy, more efficiency, and ultimately, better fitted and integrated care arrangements (Gemeente Amsterdam, 2011). With the new social support act, local governments were given a budget, with which they should aim
to achieve 9 goals that were set by the national government. How the local government use their budget to achieve these goals was for them to decide. The goals included;
1. Improving the quality of life and social coherence. 2. Prevention and support in education and families. 3. Providing information, advice and client-‐support.
4. Providing support for informal care workers and volunteers.
5+6. Stimulating and enabling participation for people with disabilities, chronic diseases or psychosocial problems.
7+8+9. Providing social care, including public mental health services, temporary accommodation, care and treatment for drug addicts and victims of domestic violence.
(Kwekkeboom, Jager-‐Vreugdenhil, 2009 : 16).
Local governments will have to report back to the national government regarding how and to what extent they are effectively aiming to achieve these goals (ibid.). The pressure to work on achieving goals 5 and 6, taking care of people with disabilities, has increased for local
governments since people with light disabilities no longer qualify for professional support. The local government of Amsterdam has tried to pursue these goals by making community and welfare organizations more accessible to the group of people with disabilities that no longer qualify for support from the AWBZ. That way they can hopefully, continue to participate in society without help of professional support, but with help from the people from the
neighbourhood that visit the community centres. I will no go more into detail of how this policy reform was justified and presented to the public, and which solutions have been developed to limit the possibly harmful effects of this budget cuts
2.3 P
RESENTATION TO THE PUBLICIn a Policy document about the AWBZ pakketmaatregel, the Minister of Public Health and Well-‐ being of the former parliament describes several, but mainly financial motives for this policy reform. Others are the limiting of state dependency, to stimulate the reliance on informal community and family networks, medicalization, and stigma.
The urgency of a budget cut was first and most importantly explained by a shortage in finances. It was explained that the extensive support arrangements were said to put ‘really’ vulnerable people with more severe disabilities at risk of losing their personal care and support if the AWBZ in the long term would become more costly. The former secretary of state of the Ministry of Public Health, Well-‐being, writes that this policy reform is urgent to keep the AWBZ affordable and to keep the arrangements available to those who are most dependent and most vulnerable. (Ministerie van VWS, 2008). Besides the urgency in terms of budget, several more socio-‐moral reasons for this budget cut were given. These reasons can be divided into two areas. The first is about the (re) distribution of responsibility between the state and citizens. The second is about the effects of the former policies to the client personally, which is expressed in dependency, medicalization, and stigma.
First of all, it is argued that the availability of professional support undermines the social network of the clients. The professional support exempts the neighbourhood, the family, social organizations and society in a broader sense, from taking responsibility to help the client with the necessary tasks. “By taking too much responsibility as a government, the involvement of citizens declines” (VWS, 2008a). Schuyt’s theory is used to argue that the distribution of responsibility has shifted disproportionately towards the government and away from the community and the family (Schuyt, 1991: 13; VWS, 2008a). Care for each other has become too indirect and anonymous. People take care of each other solely by paying taxes and not through actual personal contact. The AWBZ policy reform would change this by giving the responsibility of support back to the citizens, both to people with a disability themselves as well as their social network to which they will have to turn for support. This theory implies a trade off
between formal and informal solidarity. The fact that most care for people with disabilities was organized formally through the AWBZ, would undermine the informal, social capital in
neighbourhoods that can also contribute to improving their independence (Komter, Burgers and Engbersen, 2000 : 45).
Besides this, it would also make people with a disability dependent on the care that is provided by the government. The professional support leaves people too comfortable being helped with daily tasks and this keeps them more vulnerable than necessary. They are not stimulated to find solutions for themselves and to live independently of state support. “The Ministry finds it so important that people keep doing things independently, when necessary with support from their own network, so that unnecessary medication is limited and so that their independence is ultimately stimulated” (VWS, 2008a : 3) This dependency of support is said to be reinforced by professionals who tend to take over too much of the client’s responsibilities in order to help them, rather than stimulating clients to accomplish their tasks by themselves (ibid.). Calling upon or challenging someone’s independence rather than focusing on one’s illness by providing support is the new way of achieving independence and societal participation. To achieve this, a collective approach is more suitable and effective than are individual solutions (ibid.). For this is necessary to make society more accessible and the communities more responsible so that people can live independently of government support. In this same policy document, an example is made that a football trainer should be trained to deal with a kid with mental health problems. This way not only one kid at the time is helped, but structural improvements are made (ibid.). In short; structural solutions are preferred over individual ones, this is both a more efficient way of organizing care and eventually better for the clients too.
Then there is stigma. People with a disability who, with help of professional support, visit for example, a community centre, will be more likely to be stigmatized. It will be instantly visible and noticeable to the other visitors that the person has ‘something wrong’ with them. This can in the long run make a disabled person’s possibility of integrating with a group or in the
neighbourhood more difficult, which adds to the dependency of these people (VWS, 2008a : 4).
2.4 C
ONSEQUENCES&
EFFECTSThe most recent and final report on the consequences of the AWBZ pakketmaatregel was written under the supervision of the now current Minister of Public Health and Well-‐being. He concludes that the policy reform has been effective because less people with disabilities have been indicated to qualify for professional support (VWS, 2010). The monitor that was held in cooperation with client/patient organizations shows that 80% of the respondents find professional support of great importance for their quality of life and to relieve informal care workers of their demanding care tasks. 50% of the respondents had to live without professional support, of which 40% experienced great difficulty in coping with this policy reform. It is also mentioned that some have found temporary solutions but that it is very hard to find a structural solution (CIZ Kenniscentrum, 2009). Kwekkeboom and Weert (2008) reflected on communitarianism movements more generally and have found that care in the community by a professional, such as home care is a lot easier to accomplish than care by the community.
The local government of Amsterdam have chosen to attempt to limit the possibly harmful effects by investing in the accessibility of community and welfare organizations (Gemeente Amsterdam, 2011). They have subsidized the social entrepreneurial organization of Amsterdam (OSA) to develop a training program together with experts in the field of the different
disabilities. They have developed two training programs for each type of disability; physical, intellectual and mental health problems. The focus was on recognizing certain disabilities and anticipating on it. Besides organizing a training program for the staff, they have also organized an afternoon for the directors in which they gave an overview of the training programs. In addition, some of the managing staff participated in a series of workshops in which they were asked to make a policy plan for improving accessibility in their organization. The effectiveness of making community and welfare organizations more accessible as a means of limiting the possibly harmful effects of the policy reform have yet to be researched. Results of a longitudinal research project from the Local government of Amsterdam will be available in March 2013. This thesis is a small part of this research project.
2.5 C
ONCLUSIONNow that access to care from the AWBZ has been limited, People with light disabilities, or problems with one of the last four indicators that have been previously discussed, will no longer qualify for professional support. This support was once set up to make people independent and live outside of institutions. Now, the idea that a professional should play a role in establishing this independence is doubted (VWS, 2008a; Kwekkeboom & Jager-‐
Vreugdenhil, 2009). The new paradigm is that society should be cohesive enough for people to ask for support in their own network or neighbourhood.
A redistribution of responsibility, limiting of dependency, medicalization and stigma were all reasons to eliminate the professional, funded by the AWBZ, from the care for people with a light disability. However in none of the documents of the policy outcomes, these aspects discussed (VWS, 2009d; 2010). The evaluation is purely based on the actual policy changes such as; has the policy reform been able to limit the access to AWBZ? Is the scope of the AWBZ care limited? Perhaps it is too early to reflect on some of the outcomes that are related to the more socio-‐moral goals of the policy reform.
The shift of responsibility back to the community and the family goes hand in hand with other recent policy changes such as stimulating informal care work, and making community centres more accessible for people with disabilities (VWS, 1991; Kwekkeboom & Jager-‐Vreugdenhil, 2009). This argument can be placed in broader theories of community care and
communitarianism (e.g. Etzioni, A. 1996; Kwekkeboom & Weert, 2008). The idea that structural solutions are more efficient and beneficial to people with disabilities, rather than individual ones, strongly resonates with the social model of disability. This is a sociological view on disability in which the impairment itself is not considered to be the starting point for finding solutions,but the social and physical surroundings that are not made to accomodate them. I will elaborate on these ideological backgrounds that resonate with this policy reform in the next
3. T
HEORETICAL FRAMEWORK
In the previous chapter I have discussed the AWBZ policy change, both in detail and more generally in terms of how this change is embedded in its historical and political context. As already discussed, the AWBZ policy is closely bound to ideologies of both community care and the social model of disability. In this chapter I will first elaborate more on the aspects of the nature of a disability that can have an influence on the applicability of both these ideologies. In order to do this, I will set out three themes that reflect those that emerged within the analysis of the data. First of all, labeling, which is about the clarity and legitimacy of different disability labels. The second theme that will be discussed is stigma; it might be the case that having a certain label of a disability becomes a predominant part of the way someone is perceived by outsiders. When this label is discredited, we can speak of stigma, but not all disabilities lead to equal discrimination and stigmatization (Link, Cullen, Struening & Dohrenwend, 1989). I will discuss the factors that are of influence on stigma and how this may complicate the utilization of the social model and community care, also I will talk about stigma among professionals. Finally, I will discuss several aspects of communication and support. In order to ask for help in your personal network or demand structural adjustments in an organization, it might be necessary to acknowledge a disability label in order to communicate about your needs. This communication about needs for support can be influenced by social skills or stigma, and could influence the likelihood of actually receiving support or adjustments.
3.1 C
OMMUNITY CAREAs introduced in the previous chapter, community care is one of the ideological backgrounds that can be traced in the reasoning for the necessity of the AWBZ pakketmaatregel. The care for vulnerable people is not only supposed to be provided and organized within the
community, but preferably by the community. The home care and professional support in which the AWBZ provided, exempted community members from taking care of each other, and with this policy reform, vulnerable people are stimulated to find support in their own network.
This ideology of community care was in part set in motion by Goffman’s infamous essays on ‘Asylums’ (1968). After which a wave of de-‐institutionalization in the 1970’s followed; all over the world ‘total institutions’ as he calls them, are closing and a new paradigm is taking over; Community Care. People move from institutions to the neighbourhood and receive personal care and support in their own house. This idea was much celebrated by several sociologists, however the success of people being able to live outside of institutions depends significantly on several factors, one of which is the nature of the disability.
Ideas of community care have been both celebrated and critiqued. Strong supporters of the idea of community care such as Van Houten (2001 : 42) promote a varied society in which he speaks of ‘welfare pluralism’. He argues that care, where possible, must be organized on the local level, where necessary on a regional or national level, with some regulation from the European Union. Though he does argue that community care “must be supplemented with professional support from local care and health institutions” (Van Houten 2001 : 43). However the execution of the ideas of community care are much critiqued. If people with a disability are not sufficiently and effectively supported to live independently, problems would build up until hospitalization is unavoidable. This process of going through hospitalization and living
independently repeats itself and is an unnecessary cause of suffering for both the patient, the family and the community which surrounds the particular patient (Hoult, 1996).
Even with sufficient professional support, as research in the Netherlands showed, people did not participate in society much more and were also not always accepted, let alone cared for by the community. This seems to count especially for people with mental health problems. Although people were happy to live in their own house, they were not by definition happier than when they in an institution (Verplanke & Duyvendak 2009; 2010). You could say care ‘in’ the community had succeeded. People received personal care in their own house at a time that suited them. However, care ‘by’ the community wasn’t coming along equally easy for all people with disabilities. In research of Kwekkeboom and Jager-‐Vreugdenhil (2009) the respondents were worried that tolerance for people with a disability in the community will possibly decrease rather than increase in the coming years (ibid.). Coppock and Hopton (2000, in
Warner & Gabe 2004) even argue that people with mental health problems are not accepted by the community and remain as “alienated as they were under the asylum system” (ibid. : 388). Not only people with mental health problems but also people with intellectual disabilities are more vulnerable to abuse by seemingly ‘caring’ members of the community (Verplanke & Duyvendak, 2009).
People with mental health problems in a strange position of neither being fully excluded from society as they were in the asylum system, but are neither fitting fully into society. They are literally ‘caught in the middle’ (Lewis et al. 1989 in Warner & Gabe, 2004 : 388). People with mental health problems are in a strange paradox of being both in the community and requiring care, and at the same time ‘others’ who are seen as a potential threat to the community, when their behaviour could be dangerous. This aspect of dangerousness and threat of mental health problems is amplified by the threatening depiction of people with mental health problems in the media (Brown, 2006 : 351).
The idea of community care is that it takes away the responsibility of the government and professionals and that it gives the responsibility for care back to the community. That the community does not automatically pick up on this responsibility to care and to include people with disabilities is clear. However, the nature of the disability can have an influence on the likelihood of people with different disabilities to be included in their community (Corker & Shakespeare, 2002), and on the likelihood of them to be able to rely on their social network for personal support (Verplanke & Duyvendak, 2002).
3.2 T
HE SOCIAL MODEL OF DISABILITYThe social model of disability is, just like community care, quite an important ideology that is used to legitimate and explain the necessity of the AWBZ pakketmaatregel. It is argued that structural adjustments, such as improving accessibility, are more efficient than providing individual adjustments, such as professional support (CIZ Kenniscentrum, 2009). Individual,
professional support is argued to be both medicalizing, as it keeps the person with a disability in a sick role, as stigmatizing, because it reveals a label of a disability that could otherwise be concealed (ibid.). In this section I will enlighten the social model of disability, and why it provides such a valuable framework for thinking about disability. I will discuss the ways in which it is both celebrated and critiqued, and the degree to which it is applicable to people with different disabilities.
From a medical point of view, the biological reality of a disability is the starting point from which, usually individual, technical solutions are sought (Williams, 1996 : 2). This is argued to dehumanize the individual because it neglects the impact of their subjective personal experiences. It also depoliticizes disability by neglecting the role of the social and structural barriers and the social context, which can influence a person’s level of independence (ibid. : 15). The social model of disability opposes this medical model, and argues it is mainly and most importantly the structural barriers and disabling environment that limits a person’s abilities (Oliver, 1996). The Centre for Disability Studies of the University of Leeds (2007)2 states the
following: “Disability is above all a form of institutional discrimination and social exclusion, rather than a product of physical difference between individuals”. From this viewpoint, impairment, such as no use of one’s legs, is considered nothing other than human difference, whereas not being able to move independently because of the structural and societal barriers is a disability (Oliver, 1996). Although people with a disability are not formally excluded from social and societal activity, the lack of effort to enable people to participate has a marginalizing effect (van Houten, 2000). This change of perspective towards disability is so relevant because
2 University of Leeds. (2007, December). What is the Centre for Disability Studies (CDS)?
Retrieved 12 15, 2010, from Centre for Disability studies: http://www.leeds.ac.uk/disability-‐ studies/what.htm
