The Personal Budget As a Means of Inclusion of Disabled People in Society
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Taking Control
The Personal Budget as a means of inclusion of disabled people in society. Case study of The Netherlands
Nina van Heeswijk Narcisstraat 21a 3551 EP Utrecht
University for Humanist Studies Utrecht
May 2006
1 Contents
1. Introduction 3
2. European Policies Concerning People with Disabilities 4
3. The personal Budget in the Netherlands 6
4. Case-study: Petra’s Story 8
5. Conclusion: The Personal Budget as a means of inclusion of disabled people 9
Literature 10
2 1. Introduction
The expression ‘social exclusion’ is now widely employed in debates about the social politics of Europe. When we talk and write about social exclusion we are talking about changes in the whole of society which have consequences for some of the people in that society. (Byrne, 1999 : 1) Among the groups that are at risk of being excluded, there is one group people that is often forgotten in scientific literature as well as in social policy making: the group of disabled people. Disabled people have an extremely high risk to be excluded from participation in many sectors of society. Their social position in many different fields of life is bad. In The Netherlands the social position of disabled people falls behind in the fields of education, employment, mobility, political participation, leisure activities, health care, income, social security, sexuality and relationships. (Van Wijnen, 1999) These facts raise the question how society can deal with disabled people. How can we create a society in which disabled individuals are not being excluded? To answer this question, it’s important to define what we exactly mean when we speak about exclusion. Walker and Walker have given the following definition:
Social exclusion refers to the dynamic process of being shut out, fully or partially, from any of the social, economic, political or cultural systems which determine the social integration of a person in society. Social exclusion may, therefore, be seen as the denial (or non-realisation) of the civil, political and social rights of citizenship. (Walker and Walker, 1997 : 8)
How can we create a society in which disabled people are able to participate fully? A society that is able to realise disabled peoples’ civil, political and social rights of citizenship?
It’s a big challenge for all contemporary European societies to face these questions. Which policies contribute to the inclusion of disabled individuals in society? As the civil, political and social rights of citizenship are founded in our common European treatises and our common law, the issue of inclusion of disabled people is a common concern of all EU member states. Moreover it’s important to compare policies towards people with disabilities in different EU countries and to look at some best practises and learn from each other.
In this paper I will reflect on possibilities to further develop European policies towards the inclusion of people with disabilities. Therefore I will use as an example of inclusive policy, the Personal Budgets in the Netherlands. A personal budget is a sum of money that a disabled person can use to purchase care, help and support. I want to explore if a Personal Budget can contribute to the inclusion of disabled people in European societies. As the approach of the problem of exclusion differs between physically and mentally disabled people, I decided to focus in my research on physically disabled people.
In the following chapter a broad picture of existing EU policies concerning people with disabilities is given. The third chapter deals with the reality of Personal Budgets in The Netherlands. The fourth chapter is a case study of a young Dutch handicapped woman in The Netherlands, whose life has changed dramatically, because of the Personal Budget. In Chapter five I conclude by discussing the contribution of European policies to inclusion of handicapped people.
3 2. European Policies Concerning People with Disabilities
In the development of the European disability policy, the approach of the European Institutions to disability changed from a medical (or charity) model on disability towards a social model on disability (Blaszkiewicz, Kasior-Szerszen, en Zolkowska, 2002). The former model holds that the problems related to disability result from the physical or mental impairment that an individual has, and are largely unconnected to the surrounding environment. Disabled individuals are expected to adapt to the prevailing norms and standards in society. Where this is not possible society provides charitable support for those disabled individuals who are unable to support themselves through employment. This model dominated the formulation of disability policy within European countries for years. It provided a theoretical justification for practices such as the institutionalisation and segregation of disabled people. This model can be contrasted with a social model of disability. The social model is based on a socio-political definition that argues that disability stems primarily from the failure of the social environment. The argument here is that discrimination, prejudice and stigmatisation are the major problems for disabled people. According to this perspective the difficulties confronting disabled people come from the disabling environment rather than from within the individual. This model implies that society has the responsibility to adapt to meet the needs of people with impairments. At its most extreme, this model holds that disability is wholly a social construction. (Drake, 1999)
Concrete actions with regard to social policy for people with disabilities differ among individual member countries. At the Union level they unify standards and eliminate differences in these areas among individual countries. The analysis of EU activities justifies the statement that, so far, regulations have been developed on: promoting employment and combating unemployment, equal opportunities, and elimination of discrimination in the labour market and other areas of life such as co-ordination of social insurance systems, Union's labour law, and law on occupational health and safety.
The most recent EU objectives regarding the inclusion can be found in the objectives adopted by the Nice European Council in December 2000. Please notice the special reference made to handicapped people in objective 3,4 and 5.
1) Promote participation in the labour market The main aim of this objective is to prevent exclusion from the labour market by promoting employability, by developing adequate training policies and human resource management in order to promote better access to employment of the most vulnerable groups, and by promoting the reconciliation of work and family life including the issue of dependent care.
2) Facilitating access to resources, rights, goods and services for all Universal access to democracy and social rights is a fundamental principle for all EU countries. Nevertheless several studies have revealed that the greatest causes of social exclusion are due to limited access to social protection schemes and health care, as well as to a wide range of services and rights including education, justice, housing, transport, culture, sport and leisure. Policies must be put in place in order to provide access to rights and public and private services to all, including in situations of dependency, while accompanying measures must be put in place for the benefit of people at risk of exclusion.
3) To prevent risks of exclusion
4 Several Euro barometer surveys have shown that the major risks of poverty and social exclusion are associated with long term unemployment, alcohol and drug abuse, chronic illness, family break-ups, social welfare cuts, indebtedness, school drop-out, and homelessness. Social policies of a preventive nature should be more targeted at those groups, such as children, the elderly and disabled people, which are more vulnerable to the above risks. Furthermore this objective highlights the risks of exclusion linked to the development of the knowledge base society, and in particular calls Member states, to take into account the needs of disabled people.
4) To help the most vulnerable Disabled women and men are facing high risks of persistent poverty and experience social exclusion in many aspects of everyday living. Member States are invited to develop specific policies and actions targeted at the most vulnerable groups, and to incorporate them in all other objectives. Our study aims at the identification of these risks in order to encourage Member States to develop effective policies in all the areas covered by the social inclusion strategy.
5) To mobilise all relevant bodies The fight against social exclusion should be mainstreamed in overall policy by making social services more responsive to peoples’ needs, and developing appropriate coordination procedures and structures. This will be achieved by mobilising Public authorities at all levels, by enhancing partnership and dialogue between all relevant public and the private bodies by taking into account the views expressed by social partners, social services providers, and in particular of people suffering exclusions and organisations representing them. The Council explicitly recognizes that objectives 3 and 4 are relevant to women and men with a disability and highlights the need to develop policies in order to ensure “access to knowledge-based society and information technology”. (Finnish Disability Forum Final Study Report : 2003)
5 3. The Personal Budget in the Netherlands
A personal budget is a sum of money that a disabled person can use to purchase care, help and support. This form of social payment currently exists in 4 European countries: Sweden, The United Kingdom, The Netherlands and very recently on a small scale in Switzerland. I’ll describe how the system works in The Netherlands.
In the Netherlands the Personal Budget (PB) falls under the Exceptional Medical Expenses Act (Algemene Wet Bijzondere Ziektekosten). If somebody wants to receive a PB, first there will take place an assessment at a Regional Indication Organ. This institution decides which kind of help and how many hours are needed. A division has been made between 6 different care-functions: Household assistance (cleaning, washing up, doing the laundry), Personal care (everyday activities such as getting up, having a shower, getting dressed, eating and drinking, going to the toilet), Nursing ( help with the use of medicines, changing dressings or respiration), Support Assistance (support with activities indoors and out, such as day-care, leisure time activities), Activating assistance (learning to cope with the disability or problems, to function better and to achieve changes, for instance starting to live or work independently), Short stays away from home (weekend care, holiday care and respite care). An advisor of this organ will record his findings in a needs assessment decision. Based on this needs assessment decision, a care administration office will decide on the budget available for the applicant. But this full amount is not handed over to the applicant. First, a personal contribution is deducted. This personal contribution depends on the kind of care and help. This is up to 60% of the budget for household assistance, 33% of the budget for personal care, 27 % of the budget for support and 20% of the budget for nursing. In practice, the personal contribution will generally be lower because the income of the applicant is taken into account. After having deduces the budget with the personal contribution, the money is paid directly to the bank account of the budget user, in the form of advance payments.
A PB enables people to choose their helpers and carers themselves, or else to engage an organisation that will work according to their instructions. They make agreements with them on what needs to be done, the days and hours the worker will work for them and the amount they pay from the PB for that work. In this way people manage the help themselves.
At the moment 78.000 people in Holland are using a personal budget. One out of three budget users buys in help from friends or family. A friend or family-member that receives money from the PB gives around 8 hours a week paid care and besides that around 14 hours a week unpaid care. In 2006 The PB circuit costs 1 billion Euros. The PB takes 4% of the entire Exceptional Medical Expenses Act, whereas 10% of the Exceptional Medical Expenses Population uses a PB. Circa 32 percent of the budget holders is between 18 and 55 years old, 35 percent is above 65. (data 2005, www.minvws.nl)
In evaluations and satisfaction research, users of PB’s show a high satisfaction rate. As the most important advantages they see: deciding themselves who is giving the help, deciding themselves which kind of help they get, deciding themselves and sometimes more help is possible with a PB. As negative points are seen: the difficulties to find helpers, the administrative tasks, people have to be employers and the problems that arise when the money doesn’t come in time. (De Klerk, 2002)
6 The advantage of a personal budget is that people are able to keep control over their own lives and in that way retain a high level of autonomy. Care financed with a Personal Budget is generally more flexible then the alternative form of care: ‘help in kind’ (residential care or a usual home care system or another care body).
The question remains if this kind of organization of care is suitable for everybody. Managing ones own care and help requires several management and organisation qualities. Receiving a Personal Budget implies the responsibility to look for help providers, make arrangements and enter into agreements with them, to pay the help providers and to keep financial records. Not everybody is capable to handle these responsibilities. For people that are unable or unwilling to manage a PB themselves, a PB is not an option.
7 4. Case-study: Petra’s Story
To get an impression of the impact a Personal Budget can have on the life of an individual and how it can contribute to the autonomy and inclusion in society, I’ll present you the case of Petra, a 37 year old Dutch woman.
Petra is born paralysed from her waist down and besides that she is spastic. As the following quotations will show Petra’s life has changed 180 degrees, from living a dependent life in an institution and in her words ‘feeling locked up in a dark hole’, towards an active life, in the middle of society.
'For me, life in an institution was like living in a prison of which they've thrown away the key. The workers were taking care of my physical needs, but they were not aware that there was still a spirit inside of me that was trying to come out.'
'Now I live on my own and use the personal budget for all areas of my life. Finally I could decide for myself when I wanted to go to the toilet, when I wanted to eat and what. I could choose the wheelchairs that I wanted. With the help of my assistants now I'm able to visit a library and to surf on the internet. I'm able to have a healthy relationship with the man I love and I could even marry him. My husband can stay my husband instead of an assistant.'
Petra has now a fully adapted house of her own, employs 40 people, has founded an own association for integrated dance-lessons, she married last year, travels a lot and is politically active in Holland as well as in other European countries. Her way of life is possible, because Petra receives a Personal Budget. In this way she is able to organize personal assistance and medical care herself, in her own way, adapted to her own life-style.
'I feel part of society right now, because I have something to offer instead of just needing assistance. I'm employing 40 people as helpers. Besides I founded a foundation. It's goal is to integrate people into society and to help them find their own potential and their own dreams. The tool I use for that is dance, on land and in water.'
As you can see, the Personal Budget enables people like Petra to stay in control over their own lives. The feeling to have control over one’s own life affects a persons feeling of self- worth and these two factors are important to live a life that is experienced as meaningful. (Baumeister, 1991).
8 5. Conclusion: PB as a means of inclusion of disabled people
As I have showed, a Personal Budget can contribute to the feeling of having a meaningful life and to being able to have some autonomy. These factors are essential to be able to participate in society. Autonomy and inclusion in society are inseparable. In a practical way, receiving a personal budget can lead to inclusion in the society as well. In contradiction to help in kind organized by institutions with their own logic, their regular time schedules, their own way of working, care received by means of a Personal Budget is highly flexible. In our contemporary complex, 24 hours economy and society, this flexibility is necessary if somebody wants to participate as a full worthy citizen. With a personal assistant, paid with a PB, a person can travel, is able to attend a meeting, to be active in politics, to do volunteer work, to have social contacts, to go to the theatre etc.
We have defined social exclusion as the process of being shut out from any of the social, economic, political or cultural systems that determine the social integration of a person in society. Inclusion means being able to participate in society as a citizen of full value. This in turn means being able to develop various activities like having a paid job, having education, being able to vote, participate in the political process, being able to do volunteer work, being able to employ leisure activities, to sport and to enjoy art, and being able to have a family-life and to have a social life. As I have showed, the Personal Budget can contribute to this.
We have seen that European policies stress the risk of social exclusion of people with disabilities. The Nice European Council declared that: ‘The fight against social exclusion should be mainstreamed in overall policy by making social services more responsive to peoples’ needs, and developing appropriate coordination procedures and structures (…) The Council explicitly recognizes that objectives 3 and 4 are relevant to women and men with a disability and highlights the need to develop policies in order to ensure “access to knowledge-based society and information technology”.
Concrete actions with regard to social policy for people with disabilities need to be taken by individual member countries. The Personal Budget in The Netherlands can serve as an example of a good practice, which can help to achieve the standards formulated at a European level.
9 Literature
Baumeister, R.F., Meanings of life, New York: Guilford (1991)
Blaszkiewicz, I., Kasior-Szerszen, I. en Zolkowska, T., ‘A Summary of European Union Policies concerning People with Disabilities’, in: Disability Studies Quarterly, Fall 2002, Volume 22, No.4
Byrne, D., Social Exclusion, Buckingham: Open University Press (1999)
Drake, R.F., Understanding Disability Policies, Hong Kong: Aardvark Editorial (1999)
Finnish Disability Forum Final Study Report, Disability and Social Exclusion in the European Union; Time for change, tools for change, 2003
Klerk, M.M.Y., de (red.), Rapportage gehandicapten 2002 ; Maatschappelijke positie van mensen met lichamelijke beperkingen of verstandelijke handicaps, Den Haag: Sociaal Cultureel Planbureau (2002)
Walker, A. and Walker, C., (eds.), Britain Divided: The Growth of Social Exclusion in the 1980s and 1990s, London: Child Poverty Action Group (1997)
Wijnen, A., van, Volwaardig burgerschap, een haalbaar ideaal, Harmelen: Stichting Kantel Konsult (1999)
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