ULSS 20 Verona RDD Recommendations for Good Practice

ULSS 20 Verona RDD – Recommendations for Good Practice

Project Partners

With the support of the

European Commission

United Nations Convention on the rights of Persons with Disabilities

Article 11. Situations of risk and humanitarian emergencies

“States parties shall take, in accordance with their obligations under international law, including international humanitarian law and international human rights law, all necessary measures to ensure protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natural disasters.”

EXECUTIVE SUMMARY 6

CHAPTER 1: DEFINITION OF DISABILITY 7

1.1 INTRODUCTION 7

1.2 THE WHO DEFINITION OF DISABILITY 7

1.3 DISABILITY DEFINITION IN EUROPE 8

1.4 FROM MEDICAL MODEL TO SOCIAL MODEL 10

1.5 THE CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES 11

1.6 THE DEFINITION IN THE PROJECT 12

CHAPTER 2: DEFINITION OF DISASTER 14

2.1 INTRODUCTION 14

2.2 DEFINITIONS 14

2.3 TOWARD A NEW APPROACH 16

2.4 THE MAIN PARADIGMS 17

2.5 PARTICIPATION AND VULNERABILITY 18

2.6 THE DEFINITION IN THE PROJECT 20

CHAPTER 3: LITERATURE REVIEW 21

3.1 INTRODUCTION 21

3.2 OBJECTIVES OF THE WORK 21

3.3 KEYWORDS 21

3.4 METHODOLOGY APPLIED 22

3.5 SETTING 22

3.6 DISCUSSION 22

3.6.1 GUIDELINES 23

3.6.2 INSTRUCTIONS FOR HELPERS (MANUALS) 25

3.6.3 SELF-HELP INSTRUCTIONS 28

3.6.4 RESEARCH, CASE STUDIES, REPORTS AND GOOD PRACTICES 29

3.6.5 CURRENT SITUATION 33

3.6.6 RECOMMENDED APPROACHES 36

3.7 CONCLUSIONS 43

3.8 RECOMMENDATIONS 44

CHAPTER 4: LEGISLATIVE REVIEW 45

4.1 INTRODUCTION 45

4.2 OBJECTIVES OF THE WORK 45

4.3 KEYWORDS 46

4.4 METHODOLOGY APPLIED 46

4.5 SETTING 47

4.6 DISCUSSION 47

4.6.1 THE EUROPEAN PICTURE 48

4.6.2 ITALY 49

4.6.3 HUNGARY 50

4.6.4 SLOVENIA 50

4.6.5 SPAIN 52

4.6.6 IRELAND 52

4.6 CONCLUSIONS 54

4.8 RECOMMENDATIONS 55

CHAPTER 5: SECTOR ANALYSIS 56

5.1 INTRODUCTION 56

5.2 OBJECTIVES OF THE WORK 57

5.3 KEYWORDS 57

5.4 METHODOLOGY APPLIED 57

5.5 SETTING 58

5.6 DISCUSSION 58

5.6.1 DESCRIPTIVE ANALYSIS OF THE SECTOR 58

5.6.2 CURRENT SITUATION 64

5.6.3 SECTORAL EXPERIENCES 69

5.6.4 APPROVED DOCUMENTS OR EXPRESSIONS OF INTEREST 74

5.7 CONCLUSIONS 75

5.8 RECOMMENDATIONS 76

CHAPTER 6: RECOMMENDATIONS FOR GOOD PRACTICE 78

6.1 INTRODUCTION 78

6.2 KEY CONCEPTS 78

6.2.1 ROLE OF PERSONS WITH DISABILITY 78

6.2.2 NEEDS OF PERSONS WITH DISABILITY 78

6.2.3 DIVERSITY AND DISABILITY 78

6.2.4 STAKEHOLDERS AND ACTORS INVOLVED 78

6.2.5 COMMUNITY-BASED APPROACH 79

6.2.6 INTER-SERVICE/INTEGRATED/TRANSVERSAL APPROACH 79

6.2.7 THE DIFFERENT STAGES OF DISASTER 79

6.3 POLICY AND PRACTICE 79

6.3.1 NORMS AND LEGISLATION 79

6.3.2 SIMULATION SCHEMES 80

6.3.3 TECHNOLOGY 80

6.3.4 ACCESSIBILITY 80

6.4 TRAINING AND INFORMATION 80

6.4.1 TRAINING AND CAPACITY BUILDING 80

6.4.2 INFORMATION 81

6.4.3 STATISTICS AND DATA 81

6.4.4 AWARENESS RAISING 81

6.4.5 INTERNATIONAL ALLIANCES AND NETWORKING 82

6.4.6 FUNDING 82

6.4.7 EXCHANGE OF GOOD PRACTICE 82

6.5 KEY ELEMENTS OF A COMMUNICATION RESCUING AND TRASPORTATION SYSTEM FOR DISABLED PERSONS IN CASE OF DISASTER 83

6.5.1 INTRODUCTION 83

6.5.2 PLANNING AND PREPAREDNESS 84

6.5.3 RESCUE AND RECOVERY 85

6.5.4 RELIEF 86

BIBLIOGRAPHY 87

AUTHORS AND PROJECT PARTNERS 94

ACKNOWLEDGEMENTS 96

special thanks 98

ANNEXES 99

ANNEX 1: OFFICIAL DEFINITIONS OF DISABILITY BY INTERNATIONAL ORGANISATIONS 99

ANNEX 2: MATRIX AND GUIDELINES FOR COLLECTION OF LITERATURE INFORMATION 102

ANNEX 3: SUMMARY MATRIX OF LITERATURE PER PARTNER COUNTRY 105

ANNEX 4: MATRIX AND GUIDELINES FOR COLLECTION OF LEGISLATIVE INFORMATION 114

ANNEX 5: SUMMARY MATRIX OF LEGISLATION PER PARTNER COUNTRY 118

EXECUTIVE SUMMARY

In December 2005, the European Commission (DG Environment - Directorate A: Communication, Legal Affairs and Civil Protection) awarded ULSS 20 Verona (Italy) a grant for the co-financed project “Rescuing Injured Disabled Persons in Case of Disasters - Civil Protection’s Challenge in the Challenge” (Grant Agreement 07.030601/2005/423643/SUB/A5).

As has emerged from recent dramatic experiences, persons with disabilities are the most at risk in case of disasters of any typology. With this in mind, the above-mentioned project aims at identifying and establishing shared guidelines and recommendations for efficiently and effectively responding to the needs of persons with disabilities in the case of disasters.

In the implementation of its activities, ULSS 20 Verona has collaborated with a multi-sectoral team of partners Choros (Italy); Codice Europa (Spain); Hope Project (Ireland); The Ministry of Youth, Family, Social Affairs and Equal Opportunities (Slovenia); University of Pécs (Hungary), as well as supporters at the European level such as national and local civil protection units, fire brigades, emergency systems units, social services and associations for persons with disabilities.

This report summarises the findings of the research that was carried out by the partners within the framework of the above-mentioned project. The contents of this report were discussed at the project final conference held in Verona on 8-9 November and modified according to participants’ comments and suggestions.

The report intends to reach a wide audience, including European civil protection units; other organisations dealing in rescue operations (e.g. emergency services, emergency planners and responders, relief organisations); organisations representing persons with disabilities and European policy makers.

The sole responsibility for the contents of this report lies with the author and the European Commission is not responsible for any use that may be made of the information contained therein.

March 2008

CHAPTER 1: DEFINITION OF DISABILITY

1.1 INTRODUCTION

In the context of the project “Rescuing Injured Disabled Persons in Case of Disasters – Civil Protection’s Challenge in the Challenge” a two-day technical meeting was held on the 4th and 5th of April 2006 in Verona. At this meeting, it was agreed that one of the first project tasks was the identification and analysis of existing definitions of disability in order to agree upon one definition of disability to be utilised within the context of the project. ULSS 20 Verona led this activity.

1.2 THE WHO DEFINITION OF DISABILITY

In 1976, the World Health Organisation (WHO) provided a first definition/classification of disability called the International Classification of Impairments, Disability and Handicaps (ICIDH). This classification makes a distinction between impairment, disability and handicap, defined as follows: “an impairment is any loss or abnormality of psychological, physiological or anatomical structure or function; a disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being; a handicap is a disadvantage for a given individual, resulting from an impairment or a disability, that prevents the fulfilment of a role that is considered normal (depending on age, sex and social and cultural factors) for that individual”[1].

According to the ICIDH classification, handicap is a function of the relationship between disabled persons and their environment and it occurs when they encounter cultural, physical and/or social barriers, which prevent their access to the various systems of society that are available to other citizens. Therefore, handicap is the loss or limitation of opportunities to take part in the life of the community on an equal level with others.

The evolution of the ICIDH classification is the ICF (International Classification of Functioning, Disability and Health), published by WHO in May 2001 and accepted in 191 countries as the international standard to describe and measure health and disability[2].

The ICF defines functioning and disability as multi-dimensional concepts, relating to: the body functions and structures of people; activities people do and the life areas in which they participate; factors in their environment that affect these experiences. For each of these components, the ICF provides a hierarchy of classifications and codes. In the ICF, a person’s functioning or disability is conceived as a dynamic interaction between health conditions and environmental and personal factors[3]. The new ICF classification illustrates a clear shift: from describing disability, impairment and handicap in terms of diminishment to describing body structure, functioning activities and participation in an objective way.

The ICF takes into account the social aspect of disability and provides a mechanism to document the impact of the social and physical environment on a person’s functioning. For instance, when a person with a serious disability finds it difficult to work in a particular building because it does not provide ramps or elevators, the ICF identifies the needed focus on an intervention (e.g. the provision of these facilities in the building), not that the person should be forced out of the job due to an inability to work. By measuring the ability/inability of an individual to participate actively in the society, this classification puts all disease and health conditions on an equal level irrespective of their cause, creating a new neutral approach that tries to overcome discrimination and stigmatisation.

1.3 DISABILITY DEFINITION IN EUROPE

The definition of disability is a very complex issue[4]. There is no common definition of “disability” across Europe. Definitions and criteria for disability in Europe vary according to policy objectives, legislation and administrative standards in the different Member States and, as such, differ widely throughout the Member States[5]. Nevertheless, questions of definitions are crucial to the development of coherent policies in respect to disability.

It was in this context that the Directorate General for Employment and Social Affairs in 2002 commissioned a study, produced by Brunel University[6], based on comparative analysis of national policies. The study provides detailed country by country information about national policies in favour of disabled persons and analyses the way in which different definitions of disability have influenced those policies.

The report shows that the different definitions of disability present within single nations are relevant to different policies. The definitions used in anti-discrimination legislation are usually very broad, potentially including people with minor disabilities. These laws focus on the act of discrimination rather than the health status of the person. The definitions used in social policy are more restrictive, as they are used within processes which allocate scarce resources to those whose needs have been recognised.

What emerges from the study is the fact that confusion and lack of clarity concerning the concept of disability present a major barrier to the drawing up of comparative analyses and evaluations of disability policies and programmes within the European Commission. It is therefore necessary to formulate open inclusive definitions of disability at a European level in order to model society in a fully inclusive way.

Notwithstanding the lack of a common definition of disability, there are numerous initiatives at the EU level to strengthen EU commitment and raise awareness of disability issues more generally. In 2003, the EU decided to adopt the European Year of People with Disabilities (EYPD). The concept developed by the Commission and the Member States for the European Year offered disabled people at national, regional and local levels the opportunity to bring their issues of concern to the forefront and contribute to focusing policy priorities and encouraging specific actions[7].

The Year was set up as a people’s campaign, built on a strong alliance of non-governmental organisations representative of people with disabilities, such as the European Disability Forum[8] and disability organisations at the national level, public administration commitment, social partners, corporate support and organisations of service providers. The Commission emphasises the fact that people with disabilities and their representatives should be put at the forefront for the campaign for change and involved in the planning, monitoring and evaluation of changes in policies, practices and programmes[9]. The EYPD campaign has reinforced the message, at all levels, that disability does not mean inability[10].

The EU strategy on disability was clearly fixed in the Disability Action Plan (DAP), established by the European Commission to ensure a coherent follow-up policy to the European Year of People with Disabilities in the enlarged Europe.

The EU strategy is built on three pillars: (1) anti-discrimination legislation and measures, which provide access to individual rights, (2) eliminating barriers in the environment that prevent disabled people from exercising their abilities, and (3) mainstreaming disability issues in the broad range of community policies which facilitate the active inclusion of people with disabilities[11].

The DAP covers the period 2004-2010 and is centred on three operational objectives: (1) full implementation of the Employment Equality Directive, (2) successful mainstreaming of disability issues in relevant community policies, and (3) improving accessibility for all[12].

The Commission emphasises the fact that structured mainstreaming of disability is indispensable in the changing EU economic and social environment. Mainstreaming means that the needs of disadvantaged people have to be taken into account in the design of all policies and measures and that action on behalf of disadvantaged people is not limited to those policies and measures specifically addressing their needs[13].

Disability policies are essentially the responsibility of Member States, but community policies and actions impact the situation of disabled people in many ways[14]. Therefore, the EC recommended that Member States take full account of the DAP when developing national disability policies.

1.4 FROM MEDICAL MODEL TO SOCIAL MODEL

Disability is difficult to define because it is a multi-dimensional concept with both objective and subjective characteristics. When interpreted as an illness or impairment, disability is seen as fixed in an individual’s body or mind. When interpreted as a social construct, disability is seen in terms of socio-economic, cultural and political disadvantages resulting from an individual’s exclusion.

Persons with disabilities, advocacy groups, medical practitioners and the general public all have a different view of disability. And the meaning of disability has evolved over the years through various perspectives. The two major classifications are the medical model and the social model discussed below.

The medical model views disability as a personal problem directly caused by disease, accident or some other health condition and capable of amelioration by medical interventions such as rehabilitations. For the medical model, disability is an intrinsic characteristic of individuals with disability. This assumption translates into practices that attempt to fix individuals’ abnormalities and defects, which are seen as strictly personal conditions. This model has been criticized for its limitations. The model ignores the role of the social and physical environment in the disabling process. Moreover, the model locates the defect in a person’s body or mind and that person may be defined as defective, abnormal and by extension biologically or mentally inferior[15].

In contrast, the social model sees disability not as an inherent attribute of a person, but as a product of the person’s social context and environment, including its physical structure (the design of buildings, transport systems, etc.) and its social constructions and beliefs, which lead to discrimination[16].

There are many variations of the social model but all portray disability as a social construct created by ability-oriented and ability-dominated environments. According to this model, even though impairment has an objective reality that is attached to the body or mind, disability has more to do with society’s failure to account for the needs of persons with disabilities.