Policy document on disabled people with a chronic illness
February 2008
“In the development and implementation of legislation and policies to implement the present Convention, and in other decision-making processes concerning issues relating to persons with disabilities, States Parties shall closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organizations.”
Article 4, paragraph 3 of the Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities
Policy document on disabled people with a chronic illness
List of contents
FOREWORD 3
INTRODUCTION 5
Definition 6
This booklet 7
CHAPTER I – FUNDAMENTAL RIGHTS OF PEOPLE WITH A CHRONIC ILLNESS 8
The right to life 8
Right to represent their interests 9
Equalisation of opportunities 10
The barriers faced by persons with chronic illness 11
Social model for rehabilitation processes 12
Conclusion 13
CHAPTER II – CITIZENSHIP 14
CHAPTER III – STRUCTURES AND SERVICES 17
Access to health and social services 18
Access to education 18
Access to employment 19
Best practices 20
Effects of Rehabilitation on the Family 21
What are the possible effects of disability on the family? 21
CHAPTER IV – PUBLIC AWARENESS 22
Need for information, communication and knowledge 22
Media 23
CHAPTER V - PROPOSALS FOR ACTION 25
APPENDIX – About EDF and Chronic Illness Committee 28
FOREWORD
The European Disability Forum promotes the Human Rights approach to disability. During the last decade of existence of EDF, major achievements confirm that the promotion of the rights of people with disabilities, far from being totally achieved, is in a good track and little by little European societies develop legal frameworks and positive action to prevent discrimination against people with disabilities. The most important development took place in December 2006 with the adoption of the UN Convention on the Rights of people with disabilities.
The disability movement is inclusive of all people that due to barriers in society face discrimination to access education, services, employment, etc. This is the reason why there is a need that the European disability movement represents also people with disabilities that have been traditionally excluded from the disability strategies. Examples of those excluded movements are people with psycho-social disabilities and also people with a chronic illness, rare or invisible diseases. EDF has fought for 10 years against the narrow definition of disability that in many countries is excluding those groups of people with disabilities from the protection of anti-discrimination legislation as well as from the social inclusion strategies.
It is important to recall on the definition provided by the United Nations Convention on the Rights of Persons with disabilities: “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.” This definition of persons with disabilities will help to understand how persons with chronic illness may be part of the disability movement.
The reason why EDF has produced this core policy document is to ensure that the needs of people with a chronic illness are included in the disability agenda and to support the inclusion of their representative organisations in the wider movement of people with disabilities as well as to promote active inclusion policies and strategies for people with a chronic illness.
This core policy document should help to ensure that people with a chronic illness are considered as a target by the non-discrimination strategy of the European Union. The movement of people with a chronic illness is demanding that. The European Union is not clarifying this situation, the Court of Justice of the European Communities (ECJ), in the case Chacón Navas, have not clarified if people with a chronic illness are under the scope of the protection of the directive 2000/78 to prevent discrimination in the field of employment.
This document should open a wide debate among all stakeholders in disability in order to ensure that organisations of people with a chronic illness fully participate in the promotion of all the legal protection and positive actions that have to be created for people with disabilities in Europe. All stakeholders have to support the needs of people with a chronic illness to overcome the medical model that considers just their condition as patients and not as citizens with the same rights that all members in all areas of life and not exclusively in the field of health.
This document was produced with the support of the EDF Chronic Illness Committee composed by representatives of the movement of people with chronic illnesses, rare and invisible diseases. I would like to thank all members of the committee for the work done that represents their interests, needs and demands to European society.
Yannis Vardakastanis
President of EDF
INTRODUCTION
This booklet presents a policy strategy addressed to the European disability movement, European Institutions and European governments to introduce relevant policies and effective recognition of the rights of people with a chronic illness within the policy making of the European Union and its member states.
The European Disability Forum (EDF) is an organization representing all people with disabilities. This includes people with physical, sensory, mental, psychosocial, and intellectual disabilities or impairments, as well as people with a chronic illness who often have unseen disabilities. EDF represents more than 50 million disabled people in the European Union. The main aim of the organization is to promote the fulfilment of the rights of disabled people at European level as well as the mainstreaming of disability through all policies of the European Union and its member states.
EDF fully embraces the social model of disability which means that people with disabilities are limited by their disabling environment. A key element to develop accurate policies tackling the needs of people with disabilities is to fight the barriers that create discrimination in European societies. Therefore EDF promotes the development of European anti-discrimination legislation to protect the rights of disabled people. Together with the anti-discrimination legislation, EDF promotes the positive action as the best strategy to lead to more inclusion for people with disabilities.
It is very important that people with a chronic illness recognize themselves as part of the disability movement and therefore the European Disability Forum should also integrate the needs of people with a chronic illness within the definition of its lobbying strategies and internal structures. We must remember though that some people with a chronic illness do not see themselves as having disability and there will be a need to take account of their views.
The situation of people with a chronic illness is dealt in many cases from the perspective of the medical care. It is the purpose of this policy document to enlarge this view towards a more comprehensive and complete vision of the needs of people with a chronic illness based on the social model to recognise the rights of people with a chronic illness in all areas of life. EDF believes that the UN convention on the rights of people with disabilities is fully applicable to all people with a chronic illness and should be the framework of a social approach to their needs.
EDF’s main motto is “nothing about us without us”, the only organisations entitled to represent the interest of people with a disabilities are those ones controlled by people with disabilities themselves. Any policy initiative tackling the needs of people with a chronic illness has must be done in consultation with legitimate organisations representing the interests of people with chronic illnesses at European, national, regional and local level.
Definition
It is very difficult to find a single definition of chronic illness to include all the movement of people with chronic illnesses. Therefore even though there are many definitions of the term chronic illness, there is not one generally accepted definition. All definitions however have in common that they refer to a process that affects the person for a lifetime and that for most it is irreversible. Therefore a definition of chronic illness for the purpose of this document is that a chronic illness is an illness that for the majority of people is irreversible, that for many often is invisible and that requires social support, medical support and flexible systems which should ensure the social inclusion and employment options for those so defined.
It is important to mention that the role of both the family and carers is a key element in the analysis and that the impact of a chronic illness is also affecting other family members and friends as well as work colleagues, fellow students, etc. It is therefore very important to ensure that the analysis of the needs of people with a chronic illness is understood globally including the environment and not just the person in isolation. In many areas where discrimination on the ground of disability exists, parents’ organisations of people unable to represent themselves have claimed the recognition of “discrimination by association”. This is an area that should also be explored for family and carers of people with a chronic illness.
Chronic illness in itself is not by definition seen as a disability. The question is whether the person has to deal with social barriers in daily life. A person with a chronic illness facing barriers by a disabling society could then be considered as a disabled person. In this sense not all people with a chronic illness are considered as disabled people as long as the chronic illness does not have the effect of being a social barrier.
So, the mere fact that someone has been diagnosed as a person with a chronic illness does not mean that we speak about a disability. The person himself must experience the limitations resulting from the illness and/or the way society reacts to it to experience disability. The diseases have a limiting effect on the ability of the persons to live their life in the way that fits their own preferences. We speak here about the effect of fatigue, pain, fever etc, but also about the stigmatisation, the way the health care system in particular, and society in general, is organized.
The definition of chronic illness and the interaction of the person with a chronic illness with the social barriers place our discussion in line with the definition provided by the UN Convention on the Rights of People with Disabilities: “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.” Therefore provided that the chronic illness provokes an impairment and that the interaction with various barriers may hinder the effective an full participation of the person with a chronic illness in society, then we will speak about disability.
As an example of the disability movement’s point of view, it is not relevant if a blind person is blind from birth, from an accident or from a disease like diabetes. On the contrary, the barriers that society causes to the individual are the issue to tackle.
The UN Convention on the rights of persons with disabilities defines them as “those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others”. It must be said that the most advanced interpretations in this definition tend to identify people with a chronic illness in the category of “long term physical” which must include the chronic condition of an illness.
This booklet
This booklet will cover the needs of people with a chronic illness in relevant areas of life. There are many fields: employment, education, access to goods and services, new technologies, and also medical treatment and medical care (“medical care is a pre-condition for equal participation”[1])
People with chronic illness represent themselves through their own organizations. EDF recognises that organisations of people with disabilities are the legitimate voice of needs of people with a chronic illness. People with a chronic illness are part of the disability movement since they face the same barriers and discrimination and fight for the recognition of the same values and rights.
This booklet will cover the areas of fundamental rights of people with a chronic illness, the principles of citizenship; the structures and services, a strategy of a public awareness and finally, a proposal for action at European level. All this areas should give to all relevant actors in the field of disability a suitable instrument to better tackle the needs of people with a chronic illness.
Since 30th March 2007 the signatory and ratification process of the UN Convention on the rights of people with disabilities has been launched. Many European Union member states as well as the European Commission have already signed and will have the obligation to ratify the Convention. This is the reason why this booklet already relates to some of the articles contained in the Convention since this will become a key element as soon as the European Commission and EU member states will ratify it.
CHAPTER I – FUNDAMENTAL RIGHTS OF PEOPLE WITH A CHRONIC ILLNESS
The situation of people with a chronic illness is quite diverse and complex, with different needs regarding their inclusion in European societies. In many cases there is a great dependency on health systems and somehow a lack of independence in many of the decisions that they have to take daily. This is the reason why people with a chronic illness are particularly vulnerable to all kinds of discrimination and often their fundamental rights are neglected or denied.
The way European societies are approaching the needs of people with a chronic illness is still much focused on a medical approach and it forgets other aspects related to their social needs. Therefore so far the views of people with a chronic illness have been neglected in many issues, in areas such as: the health systems, where decisions are too often taken without considering the view of the person with a chronic illness; the education systems often do not take on board the need of students with chronic illnesses; the employers do not understand the reasonable accommodation principle in a way where people with a chronic illness should enjoy flexibility (e.g. to get appropriate medical treatment during working hours); people with invisible diseases are systematically discriminated, in many cases with a degrading treatment, etc…