Final study report

HSO Vammaisfoorumi ry
(Finnish Disability Forum)
MHE-SME
Inclusion Europe

Under the auspices of the: European Disability Forum

With the support of the European Commission
Preparatory actions to combat and prevent social exclusion

The information contained in this report does not necessarily reflect the opinion of the European Commission

This study, funded by the European Commission DG Employment and Social Affairs(Project Number VP/2000/008-query), was achieved through the partnership of 7disability organizations under the coordination of the Greek National Confederation of Disabled People, and under the auspices of the European Disability Forum.

The title of the project is:

"Disability and Social Exclusion in the EU – time for change, tools for change"

The project aims at the collection of quantitative and qualitative information on poverty and social exclusion faced by people with disabilities. A questionnaire was designed and circulated between May-July 2001in several European Countries. This study report is the result of an analysis of the information gathered and of the comments of over 100 participants from disability organisations, decision makers, and other stakeholders attending a conference in March 2002 in Athens, where a draft report was presented.

The co-ordination of the study was undertaken by the Greek National Confederation of Disabled People The partner organizations involved in the project were the National Councils of disabled people in Greece, Spain, France, Finland, Sweden, and the following European Non Governmental Organisations: the European Blind Union, Inclusion Europe , and Mental Health Europe (See Appendix I). They all played an active role in designing the study, translating the questionnaire, disseminating it including through seminars, collecting the data, and contributing to the content of the report. The European Disability Forum (EDF), an umbrella organization gathering 17 National Councils in the European Union and European Economic Area, and over 70 European NGOs (including all the partners of this project) was also involved.

Professor Yannis Yfantopoulos of the University of Athens provided his invaluable expertise on statistical and methodological tools for the design of the questionnaire and study, and for the analysis of data collected.

CONTENTS

I. FOREWORD
II. PREFACE 
III. INTRODUCTION 
1.THE EUROPEAN POLITICAL CONTEXT 
1.1 TOWARDS SOCIAL INCLUSION
1.2 DISABLED PEOPLE IN THE EUROPEAN UNION
1.2.1 Education
1.2.2 Employment 
2.PURPOSE AND METHOD OF THE STUDY
3. EMPIRICAL FINDINGS
3.1 IDENTITY OF RESPONDENTS
3.2 MINIMUM INCOME AND DISABILITY BENEFITS
3.3 DISABILITY BENEFITS
3.4 EDUCATION
3.5 EMPLOYMENT
3.6 ACCESS TO GOODS AND SERVICES
3. 6. 1 Health and Social services
3.6.2 Public Administration
3.6.3 Social Environment
3.6.4 Transport
3.6.5 Information Society
3.6.6 Availability of Social Services
4 ASSESSMENT OF NATIONAL POLICIES FOR SOCIAL INCLUSION
5. FACTORS CONTRIBUTING TO SOCIAL EXCLUSION
6. POLICY CONCLUSIONS AND PROPOSALS FOR ACTION
6.1 Disabled people and poverty
6.2 Education
6.3 Employment
6.4 Access to health and social services
6.5 Public Administration
6.6 Social Environment
6.7 Transport
6.8 Information Society
6.9 Availability of services
6.10 General Conclusions
APPENDIX I 
1. ORGANISATIONS INVOLVED IN THE PROJECT
APPENDIX II 
1. THE DESIGN OF A QUESTIONNAIRE 
2. DISSEMINATION OF THE QUESTIONNAIRE
APPENDIX III– REFERENCES 

I. FOREWORD

People with disabilities are undoubtedly among the most vulnerable at risk of social exclusion, as this valuable study clearly shows. Poverty and social exclusion are inextricably linked, and a major cause of poverty is the lack of employment. For people with disabilities, the situation with regard to employment is far from ideal. On average,the participation rate of severely disabled people in the workforce is less than half that of able-bodied workers. Efforts have been made in most EU Member States to improve the participation rate but the obstacles to gaining - and retaining -employment, such as lack of access to education and to vocational training, limited availability of housing, assistive technology and accessible transport are still significant. The study findings illustrate very well where more work is needed.

The study also highlights the link between social exclusion and discrimination. The major European level legally binding policy instrument is the Anti-Discrimination Directive, passed in 2000 by Council, which enters into force next year. The Directive will help to protect people with disabilities against discrimination in the workplace. It will also require employers to provide, where reasonably possible, facilities to permit people with disabilities to participate in the workforce. Directorate-General for Employment and Social Affairs has created a network of legal advisors who are monitoring the implementation of the Directive at national level. A complimentary instrument is the National Action Plan to combat poverty and social exclusion, which each Member State produces. The NAPs, like the study's findings, reveal that significant improvements are still to be made in particular with regard to access to education and housing systems to make them more responsive to the needs of workers with disabilities. Future NAPs will build on this information and report progress.

Promoting the rights, and raising the level of awareness of people with disabilities is also the main objective of the European Year of People with Disabilities 2003. We hope the Year will encourage reflection, discussion and action about measures required to promote equal opportunities, and that it will challenge the barriers, also identified in this study, that prevent people with disabilities from participating in many aspects of everyday life.

The challenge now is to deliver for people with disabilities not just life, but quality of life and to identify and provide opportunities for full social inclusion. I commend EDF and its partnership disability organizations for this powerful contribution towards meeting that challenge.

Anna Diamantopoulou,
European Commissioner on Employment and Social Affairs

II. PREFACE

The National Confederation of Disabled People in Greece decided in early 2000, together with National Councils from Spain, France, Finland, Sweden, and Spain, and with 3 European Non Governmental Organisations, representing major impairment groups: Mental Health Europe, Inclusion Europe, and the European Blind Union, to launch a common project, under the auspices of the European Disability Forum, within the framework of the European Community preparatory actions on social exclusion.

The Lisbon strategy had just been launched, putting for the first time social exclusion high on the European Union agenda. The European Council had set ambitious objectives aiming at reducing considerably poverty and social exclusion by the end of the decade.

Disabled people are a group at high risk of social exclusion because of the physical, legal, financial, and attitudinal barriers from society that they face in their everyday life. The high vulnerability of disabled women and men was recognised by the Nice European Council in December 2000, in the common EU objectives on social inclusion.

Despite this, quantitative information on the situation of disabled people in Europe, and to their level of participation in society is scarce, and therefore there is little understanding of the causes of their social exclusion both at National and European level.

By implementing this project, we were convinced that in order to achieve progress in the fight against disabled people, it was crucial to investigate the link between social exclusion and disability, from the perspective of disabled people and families of disabled people unable to represent themselves. At the same time we wanted our project to contribute to the development of policy indicators and actions for the fight against social exclusion.

This study, which is the result of the commitment of all the project partners, of the contributions of over 150 associations of disabled people across Europe, and of discussions held at our final conference in Athens last March, is a step forward in this sense.

The report provides information on the causes of poverty and exclusion of disabled people and their families in the areas identified by the Council's objectives. The study shows that poverty is a reality for many households with a disabled person. A great financial strain is put on them because of the extra costs related to disability and the failure of the social protection systems to adequately address this.

Disabled people are also confronted with social exclusion from their youngest age because of discrimination and of barriers existing in society. The education systems fail in may cases to integrate children with disabilities in the mainstream school environment.

Furthermore only less than a third of disabled people in working age are in employment, often in low paid jobs. The lack of adaptation of the working place together with thepre judice of employers is the main obstacle to employment.

Moreover social services are often lacking or inadequate, not contributing to an autonomous and participatory life.

Overall social participation of disabled people is seriously restricted as physical and attitudinal barriers prevent them from participating in the life of the community, or even in exerting their citizenship rights.

The outcomes of this project show that the involvement of people suffering from social exclusion is essential in identifying the causes, in developing actions to counter this phenomenon, and in assessing policies.

We believe that its findings could greatly contribute to the strengthening of current EU indicators, and to the next round of the National action plans on social inclusion, that will be adopted next year.

In 2003 the European Union will also celebrate the European Year of People with Disabilities. We are convinced that a reinforcement of social inclusion policies for disabled people will be a major contribution to the Year, as well as to achieve a more inclusive Europe.

Finally I would like to thank all the project partners, and all those that have contributed directly or indirectly to the project, and in particular, the European Commission without which this project and its achievements would not have been possible.

Yannis Vardakastanis

President of NCDP
Project Leader

III. INTRODUCTION

Social exclusion is a multidimensional phenomenon, which is linked not only to income and expenditure but also to activity status, educational attainment, housing, health, subjective assessment in making ends meet, and citizens' satisfaction with health and welfare services.

Overall in the EU, there are certain groups of people who are at risk of poverty and social exclusion. These include people who are unemployed, the elderly, and disabled people. There is a growing need to collect comparable data and develop multidisciplinary and vertical indicators, which could capture the dynamic aspects of a changing EU Society.
Co-operation must be developed between the European Commission, the Member States, in consultation with representative disability organisations, in order to develop harmonized research strategies and implement effective social policies.

The fight against poverty and social exclusion constitutes one of the major objectives of the European Social Model. According to Article 137 of the Amsterdam Treaty, Member States are encouraged to develop initiatives aimed at improving knowledge, to exchange information, to promote new approaches, and evaluate good practices and to design new policies. Furthermore, Article 13 enables the Council to take appropriate actions to combat discrimination based on disability and invites the Community Institutions to take account "of the needs of persons with a disability when adopting measures" and implementing legislation.

The Commission in its Communication "Building an Inclusive Europe" , invites the Member States to strengthen their commitment and to promote greater solidarity for more inclusive economies and societies: "The challenge is not only to provide a better assistance to those excluded (or at risk of exclusion), but also to actively address the structural barriers to social inclusion thus reducing the incidences of social exclusion."
The European Commission recognises that people with disabilities, confront multiple barriers in accessing the labour market, social services, education and face high risks of becoming poor and socially excluded.

The Portuguese presidency has highlighted the magnitude of the problem and provided detailed information on developing coherent policies. The Nice European Council has endorsed the need to develop common actions and policies addressed to specific groups like the unemployed, the elderly and disabled people. The multi-dimensional nature of the problem requires the development of a common strategy aiming at the assessment of the needs of disabled people. Despite the increasing
literature on comparative research, in the area of disability, there is a considerable lack of comparative statistics on the living conditions of disabled people, the systematic discrimination, and the barriers with which they are confronted in their social and economic environment. Furthermore, the policies developed in each Member State are of a sporadic nature and vary significantly from one Country to another.

The aim of this project was to produce a report to be used as a reference tool on the link between disability, and social exclusion for policy makers, and practitioners involved either directly or indirectly in the social inclusion strategy at European and National level.
The study should serve to:

•  to develop a methodology for assessing the causal factors of social exclusion among disabled people

• to collect comparable quantitative and qualitative information with existing European data, in order to provide disability specific indicators to measure this phenomenon, and to evaluate impact of policy measures devised to combat social exclusion of disabled people.

• To identify areas where policy action is needed, and propose the establishment of policies and measures to facilitate social inclusion of people with disabilities

A fully harmonised questionnaire targeted at organisations of disabled people was used to obtain relevant policy information for the disability movement in the EU countries. The questionnaire covered areas most relevant to disabled people in the framework of social exclusion, and poverty: minimum income and disability benefits, education, employment, access to goods and services, availability of services infrastructures, and evaluation of National policies.

The analysis of findings and conclusions of the study were further complemented by discussions taking part at a European Conference held in Athens in March 2002, gathering over 100 people from disability organisations, decisions makers, and other stakeholders in the social field. The participants discussed the content of the report, and provided contributions in the framework of three workshops targeting the main areas of the study: income and social protection, access to education, access to employment,
access to goods and services.

Prof Yannis Yfantopoulos,
University of Athens
Greece

1. THE EUROPEAN POLITICAL CONTEXT

1.1 TOWARDS SOCIAL INCLUSION

The European Union has recognised from its onset the need to achieve social cohesion, next to the development of an internal market. Tremendous social progress has been achieved since the Treaty of Rome in improving living conditions, well-being, life expectancy, education, and quality of life.

However, at the start of the 21st century, more than 65 million people, around 18% of the European population, still live on the verge of poverty, earning only 60% of the national median income. The most vulnerable groups at risk of poverty are unemployed, elderly and disabled people

Policy makers have therefore realised the need to respond at European Union, as well as National level to these new challenges.

A specific article on the fight against social exclusion was adopted in the Amsterdam Treaty in 1997, setting the foundations for a European Social Inclusion Policy.

In February 2000, the European Commission announced a new set of objectives for «shaping social Europe» and developing a framework for social and economic policies. A five-year action plan covering the period 2000-2005 was adopted promoting the interrelationship between economic dynamism, full employment, and greater social justice among Member States. The interplay between economic growth, employment and social cohesion is depicted in diagram 1:

Diagram 1: THE EUROPEAN SOCIAL MODEL

Source: Social Situation Report 2001

The Lisbon Summit gave then a new impetus to the European Social Model by stating "Europe should become the most competitive and dynamic knowledge-based society in the world capable of sustainable economic growth with better jobs and greater social cohesion".

The Lisbon Summit examined the existing policies against poverty and social exclusion and called Member States to:

• Promote more and better employment opportunities as a safeguard against poverty and social exclusion

• Ensure access to knowledge based society by addressing issues such as information technology, education and training, cultural integration, Strengthen social inclusion policies based on the close co-operation among the Member States.

• Reform social transfers towards active investment in human capital.

The Nice Summit provided the political basis for the consolidation of a Social Agenda in Europe by reinforcing "the modernisation of the European Social Model" and emphasising the "indissoluble link between economic performance and social progress".
The synergy of the triad: democracy, economy and society constitute the new philosophy of the European Social Model. It was agreed that a new, "Open Method of Co-ordination" should be established among the Member States promoting:

The launching of National Action Plans to combat Poverty and Social Exclusion for the period 2001-2003; The establishment of a Community Action Programme for the period 2001 to 2005 to encourage cooperation, developing exchange of information and best practices, between Member States in order to achieve a better understanding of the phenomenon of social exclusion and develop and actions with a budget of 70 million Euros.

1.2 DISABLED PEOPLE IN THE EUROPEAN UNION

Several International Organizations like the OECD, ILO, WHO and the European Commission (Eurostat, the European Union Statistical Office) have launched studies to measure the number of persons with disabilities. Although there are methodological differences concerning the definition of disability and the collection of data, there is a common agreement on the proportion of disabled people compared to the total European Population.

Eurostat has published two main studies on disabled people in 1995 and 2001. In the 1995 study , Eurostat indicates that the proportion of disabled people compared to the total population is around 12%, with differences among member states from 9.3% in Greece to 15.2% in Spain. The 2001 publication by Eurostat is based on the findings of the European Community Household Panel (ECHP) which is a longitudinal survey covering 130.000 European Citizens aged from 16 to 64 years old. In this survey participants were asked whether they had a chronical, physical or mental health problem, illness or disability, and whether they were hampered (severely or to some extent) in their daily activities by this problem. Using the data of 1996, Eurostat reaches the conclusion that around 13% of the EU 14 population is being severely hampered (4%), or hampered to some extent (9%) (See diagram 2). There are no significant differences, according to Eurostat on disability rates between genders. 14% of men reported to have a disability compared to 15 % of women.

Diagram 2 

Significant disparities in the disability rates were found among the Member States ranging from 21.2% of the Finnish population to only 7.4% in Italy. (See diagram 3). The reason for this disparity is probably due to different cultural perceptions, levels of awareness, quality of services provided, and integration of people with disabilities. This same caution in analysing data has to be applied to our own study.

Diagram 3

Examining age specific prevalence rates among the Member States, an exponentially increasing trend with age was found (see diagram 5). Finland portrays the highest progression rates followed by Portugal, France, Austria and having Italy and the lowest.

1.2.1 Education

Several studies have revealed that education affects significantly the social and working life of people. School constitutes the first step towards socialization outside of the family environment. The access of disabled people to school and the continuation of their studies are often difficult, jeopardising their integration into the labour market.

According to the ECHP study, only 9% of those severely hampered and 14% of those hampered to some extent reach university education, in comparison with 18% of people with no disabilities. Focusing further on the severely hampered we can identify significant differences among the member states in second and third level education attainment (see diagram 4). Among the countries considered in our study, severely hampered persons in France and Finland would have the highest chances to complete third level education, followed by Spain, Austria, and Italy. Similar trends were identified for those who are hampered to some extent.

Diagram 4

1.2.2 Employment

The low education rate of disabled people in second and third level education is clearly shown in diagram 4, hindering their opportunities to access the labour market on an equal basis.

Diagram 5 (on the previous page) shows the percentage of disabled people in working age in the EU countries compared to the overall population, according to various age intervals. The diagram illustrates on one hand the importance of the share of the disabled population potentially able to work, and on the other hand the important number of people who become disabled in the course of their working career.

Throughout the European Union, people with disabilities confront significant barriers both in finding and keeping a job. According to the European Community Household Panel, a person in the active age (16-64 years) has a probability of 66% to find a job or develop a business. For a person with a moderate disability the probability becomes 47% and for a disabled person with severe disability the probability is reduced to 25%.

The level of employment of disabled women is considerably lower. Among women with a severe disability only 25% are working, with a very high percentage of inactivity. Also only 44% of women with a moderate disability are in employment.
However, due to the overall lower level of participation of women in the labour market, compared with men, the differences between disabled and non-disabled women in participation to the labour market are less important than between men.
Also the survey does not take into account the level of activity of mothers of children with disabilities, which often have to leave the labour market for caring.

In diagram 6 (Eurostat source) the employment rates per country for people who are severely hampered, or hampered to some extent in comparison to those that are not hampered are portrayed.

Diagram 6 

The findings of diagram 6 reveal that some countries like Finland, France and Austria, which have achieved high rates of employment for their population, manage to maintain high levels of employment for disabled people. Inversely, countries like Greece and Spain with relatively lower levels of participation rates in the employment sector provide limited opportunities to disabled people to access the labour market.

The findings of the ECHP study highlight the demographic and socio-economic differences related to disabled persons in selected EU countries. The significant disparities in the education and employment status among the Member States are to be attributed to different policies and labour market structures developed by the respective countries. It should also be emphasized that the aggregate indicators
presented per country are based on the views of the surveyed individuals.

Further information will be available from the European Union Labour Force Survey in 2002, which will include a module people with disabilities.

Disabled People in the European Union – summary findings

2. PURPOSE AND METHOD OF THE STUDY

This study seeks to examine the European Social model in conjunction with disability policies. The majority of the EU countries have adopted a wide range of measures to promote social cohesion and integration of people with disabilities. 

However, despite the good intentions, further efforts need to be made in order to address effectively this problem. Several studies conducted in Europe and elsewhere have reached the following conclusions:

• Disabled people are particularly vulnerable to social exclusion.

• The average family income is substantially lower for a household with a disabled person.

• A clear correlation exists between the severity of the impairment and the degree of poverty and exclusion.

• Disabled women are frequent victims of poverty and social exclusion.

Disabled people living in Institutions do not generally encounter dire financial poverty, however, they do experience extreme social exclusion.

The purpose of our study is to develop on the basis of the above findings a fully harmonized methodology investigating the causal factors of poverty and social exclusion among disabled people in seven European Countries: Austria, Finland, France, Greece, Italy, Spain, and Sweden.

The overall approach of the study is based on a selection of comparable quantitative and qualitative indicators on policy decisions, attitudes and perceptions concerning Social Exclusion of disabled people.

Because of the limitations due to the nature and means of the project, results obtained could not be as reliable as the Eurostat (ECHP survey) data quoted in the previous section. For this reason we have decided to concentrate our research on qualitative rather than quantitative data in the areas covered by the ECHP or to attempt a quantitative survey in those fields not considered, such as access to goods and services.

In order to achieve this, a fully harmonised questionnaire was addressed to opinion leaders from disability organisations in seven EU Countries with the purpose to obtain policy relevant information for the European Disability Forum and its members to design effective social policies against social exclusion. 

Given the variety of Welfare models in Europe, the comparison of social rights and policies across all member states is a difficult task. Hence from a methodological point of view, the adoption of a bottom up approach, which would start from a country level analysis and move up to Commission's level would face considerable problems. It was then decided to adopt a top down analysis starting from the European Union's policies and objectives on a "New European Social Inclusion Strategy" and move down to Countries and Disability organisations.

Diagram 7 summarises the objectives adopted by the Nice European Council in December 2000. The objectives are set around the following issues:

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

Several Eurobarometer 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. Moreover homelessness is often linked to mental health 
problems.

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". The relevance of the Council's objectives to disability policies is depicted in the following diagram.

Diagram 7 
EUROPEAN OBJECTIVES FOR SOCIAL INCLUSION
 



Taking into account the objectives adopted by the European Council, we have defined our research targets. The policy relevant areas for collecting harmonized social exclusion indicators are described in diagram 8 and include both income based and social participation based indicators.

Diagram 8 
OBJECTIVES OF OUR STUDY