People with epilepsy often experience limitations to their enjoyment of economic, social and cultural rights. They have many unmet needs in the areas of civil rights, education, employment, residential and community services, and access to appropriate health care.
Legislation is an important means of addressing these problems and challenges. Well-crafted legislation based on internationally accepted human rights standards can prevent violations and discrimination, promote and protect human rights, enhance the autonomy and liberty of people with epilepsy and improve equity in access to health care services and community integration. Legislation can serve to legally enforce the goals and objectives of policies and programmes related to epilepsy.
The current reality, however, is that the laws that affect the lives of people with epilepsy are often outdated. They frequently fail to promote and protect human rights adequately, and they sometimes actively promote the violation of rights.
To date, nowhere in the world have comprehensive studies been undertaken to determine the presence or absence, effectiveness or ineffectiveness, of legislation in promoting and protecting the civil and human rights of people with epilepsy, which was the reason for the ILAE and IBE Executive Committees to recommend the development of a project on “Epilepsy and Legislation”.
The project will be co-ordinated by the Foundation of Epilepsy Centres in The Netherlands (SEIN), a WHO Collaborative Centre for Research, Training and Treatment in Epilepsy in Heemstede, The Netherlands.
The aim of the project will be to: collect information on existing legislation and regulations related to epilepsy in the areas of civil rights, education, employment, residential and community services, and provision of appropriate health care, from countries all over the world, in order to review the comprehensiveness and adequacy of these legal measures in promoting and protecting the civil and human rights of people with epilepsy.
The results of the project will be useful for policy makers, health planners, administrators, legislators, lawyers, health professionals and patient groups at a national, regional as well as international level.
- Identify key human right issues that are being overlooked and need to be addressed at national/regional levels
- Develop an effective reference guide for professionals working in the area of epilepsy, lawyers and policy-makers as well as advocacy and human rights organisations working in the interest of people with epilepsy at national as well as international levels
- Provide instruments for advocacy and lobbying to improve human rights conditions for people with epilepsy
- Provide useful tools to reform laws and regulations related to epilepsy thus leading to better care and services and improved living conditions for people with epilepsy throughout the world
- Increase awareness among people with epilepsy of the possibilities for better reintegration into society. It will help reducing discrimination and stigma associated with epilepsy.
A questionnaire was developed for collection of data on existing legislation and regulations related to epilepsy in the areas of civil rights, education, employment, residential and community services, and provision of appropriate health care from countries all over the world, in order to review the comprehensiveness and adequacy of these legal measures in promoting and protecting the civil and human rights of people with epilepsy. A number of countries were selected from each of the 6 WHO Regions for data collection in collaboration with the ILAE/IBE regional committees and WHO.
Data were received as follows:
The following documents were developed for publication:
- Basic principles for Epilepsy Legislation: setting out basic principles and rights that should be considered when drafting legislation related to epilepsy with due respect to given cultures or legal traditions. Read the document under the Document Library Section click here
- Guidance Instrument for developing, adopting and implementing epilepsy legislation: outlining the preliminary steps that may be taken before embarking on the drafting process as well as the steps for drafting, adopting and implementing epilepsy related legislation. Read the document under the Document Library Section click here
- Final report including: analysis of data collected through the survey; literature review; examples of good practice; basic principles for epilepsy legislation, and recommendations.