One of the pillars of the Independent Living Movement is personal assistance (PA), which ENIL defines as a tool allowing for Independent Living (ENIL’s key definitions). PA should be provided on the basis of an individual needs assessment and depending on the life situation of each individual.
PA provides an opportunity for empowerment and inclusion of disabled people. It is considered a human right by both the IL movement and the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD). However, despite the fact that PA is supported by Article 19 of the CRPD, which most European countries have signed and ratified, many still do not have PA legislation. Some countries have passed PA legislation that does not reflect the philosophy of the Independent Living Movement or the CRPD. This allows for the breaching of human rights. It also confirms the belief of ENIL that politicians are lacking in knowledge about legislation and on the real situation of disabled people. This lack of political will directly affect thousands of lives on a daily basis.
User-Led Personal Assistance in the European Union: A Survey
In the period January 2018 – March 2018, ENIL implemented a survey on personal assistance in the framework of the project ‘User-Led Personal Assistance in the European Union: A Critical Comparative Analysis’, led by Dr Teodor Mladenov. The raw data from the survey is available here. The full inventory, including the guidelines for its completion and the consent form, is available here. An article interpreting the results from the survey has been published in Disability & Society in June 2019 under the title ‘What is good personal assistance made of? Results of a European survey’ and is freely available here.
In the same framework, in the end of 2018, ENIL piloted the Personal Assistance Checklist – a new tool for assessing personal assistance (PA) schemes from the perspective of independent living. The checklist is intended to help advocates around the world to fight for better PA, and it allows, for the first time, to rank PA schemes according to independent living principles. It is available here.
Research on the availability of PA services within countries of the Council of Europe
In 2011 ENIL decided to research the availability of PA services within countries of the Council of Europe area collecting information to compare country situations on PA legislation. Research was carried out by ENIL between 2011 and 2013 including a desktop research and the dissemination of a survey. Disability experts from 21 European countries were involved in that process.
In 2015 ENIL has updated the collected data contacting again disability experts with answers from the following 20 countries: Belarus, Belgium, Bulgaria, Cyprus, Denmark, Estonia, France, Georgia, Greece, Italy, Latvia, Macedonia, Netherlands, Norway, San Marino, Slovenia, Spain, Switzerland, Sweden, UK. Compared to 2013, four new countries were added – Estonia, Georgia, Macedonia and Switzerland. Unfortunately, ENIL could not collect information from Germany, Iceland, Ireland, Serbia and Slovakia, which all participated in ENIL’s previous research project.
Personal Assistance Tables 2015:
- Belgium (Flanders and Wallonia)
- San Marino
- United Kingdom
Comparative survey on Personal Assistance in Europe
The survey presents a summary of the research carried out by ENIL from 2011 to 2013 on the situation of personal assistance legislation in Europe. It involved desk research and the distribution of a survey to disability experts in the various European countries. Information was gathered from 22 European countries, including: Belarus, Belgium, Bulgaria, Bosnia and Herzegovina, Cyprus, Denmark, France, Germany, Greece, Iceland, Ireland, Italy, Latvia, Norway, San Marino, Serbia, Slovakia, Slovenia, Spain, Sweden and the United Kingdom.
Surveys, completed in 2013:
- San Marino
- United Kingdom