Personal assistance (PA) is an important concept in the framework of the Independent Living philosophy and essential for disabled people in need to live their lives with dignity, fully included in the community and to realize their potential. PA is one of ENIL’s main areas of work as and again high on the 2015 agenda with the updating and expanding of the PA database for PA legislation in Member States and other European countries.
In 2013 ENIL published 21 tables with information on the situation of PA legislation in the respective countries – Belarus, Belgium, Bulgaria, Cyprus, Denmark, France, Germany, Greece, Holland, Iceland, Ireland, Italy, Latvia, Norway, San Marino, Serbia, Slovakia, Slovenia, Spain, Sweden and the United Kingdom. These can be found here on ENIL’s webpage.
Updating the tables is a process that will allow ENIL to see whether PA is moving forward. ENIL is still collecting and analyzing information and in this article presents the first analysis based on the tables that have come in from 13 countries: Belarus, Cyprus, Georgia, Greece, Holland, Italy, Latvia, Macedonia, Norway, Slovenia, Spain Sweden and the UK. If you live in a country not mentioned in this list and are willing to give us information about your country’s PA legislation, please do so. The link for the survey is here.
The first conclusion that is not optimistic is that only 5 of the 13 European countries have PA legislations integrating the crucial tool of PA for independent living into their legal frameworks – Italy, Latvia, Norway, Spain, Sweden and the UK. From the tables it can also be seen that within these countries the legislations are not living up to what was expected. For example one of the problematic aspects of Italian legislation is that every region has its own regulation and hence disabled people have different levels of access to PA services depending on their geographic location. Another negative fact is that the social model of disability is not being implemented during the assessment process. In Spain, for example, assessment procedures still rely solely on medical scales.
In 7 of the countries (Belarus, Cyprus, Georgia, Greece, Holland, Italy and Macedonia) statistics of people needing personal assistance are not publicly available, hence it is not possible to evaluate if the numbers change with time. What is also alarming is that people with mental health problems and with intellectual disabilities are marginalized in having limited access to PA services and eventually are institutionalized or have the only option of living with families. For instance, it is reported that in Italy “although not arranged for by law, in practice people with mental disabilities are entrusted to families or institutions”. Even in countries like Italy, Norway, Spain and UK where there is PA legislation, this problem exists.
In Sweden, on the contrary, institutions were closed in January 2000 and persons with intellectual disabilities can live in their homes with PA services 24/7. The changes in PA legislations are often in the direction towards cutting of funding which is going against the UN CRPD that guarantees the situation of disabled people is not to regress. This is the case of the UK’s centrally funded Independent Living Fund which was recently closed despite the strong campaign of our allies from Disabled People Against Cuts (DPAC). In Slovenia there is another paradox – persons with certain types of impairments are in practice discriminated because providers of the PA service are different NGOs. Only one organization is providing services cross-disability, the rest ensure PA service on the basis of a specific type of impairment with only their members being eligible to get PA.
The problems that the different countries face today in the area of PA are disparate – some are still struggling to convince their governments that PA support is a human right and without it many disabled people are confined to live closed in their homes or in institutions; whereas other countries have already adopted PA legislation and now work for improvements. However, beyond all questions stays the fact that all countries need to implement the UN Convention of Persons with Disabilities (CRPD) whose articles define the rights of disabled people. If this is done, then the need of personal assistance will inevitably be recognized and steps towards a working PA legislation will be made.
The analyses of the data collected will continue over the next months and a final report will be presented before the end of the year. Your comments on the tables are welcomed at firstname.lastname@example.org . Or please fill in the survey for your country – ENIL PA Survey.
Photo: Personal assistance label