ENIL – European Network on Independent Living is in the process of carrying out a European survey on personal assistance. The goal of the survey is to gain detailed information on the situation of personal assistance services in as many of the EU member states as possible and also to have a proposal for model legislation for personal assistance as per Independent Living (IL) ideology.
The proposal will be to help members lobby in those countries that still have not enacted legal frameworks.
Several variables are comprised within the survey. Which countries have legislation and which countries have a proposal for legislation on personal assistance in the pipeline? Those countries with existing legislation; is it part of the social service legislation or is there other rights based legislation for personal assistance such as in Sweden? From which level of government does the funding for services come? What assessment tools are being used to decide on the amount of assistance to be acquired, and what is the time span for reassessment? Which groups of impairment are covered by the legislation? What is the age limitation for legislation?
The European Commission’s online tool for disability through the Academic Network of European Disability Experts – ANED’s website was used to find the information on the existing legislation for the ENIL survey. The website has the following address http://www.disability-europe.net and then you click on DOTCOM at the top of the page for the database. The ENIL network is then being used to find experts in the different countries for the specific details of the legislation and legal situations in each of the different countries. Results so far show that countries do have a variety of different kinds of legislation covering personal assistance including: Social Services Acts, Social Benefits Acts, Community Care Acts and Direct Payments Acts. Sweden has the only rights based legislation, with IL members from Norway lobbying for the same since 2000 when personal assistance was covered in the Norwegian Social Services Act. There is national legislation in Sweden, Norway , the UK and in France but also local acts for example in Sofia, Bulgaria. Iceland and Slovenia have legislation in the pipeline for the respective years of 2014 and 2013. Members from Estonia who were expecting legislation report that it has been put on ice. Some countries without legislation are for example Cyprus and Poland.
The Swedish legislation, The Law Concerning Support and Service for Certain Groups of Disabled was enacted in 1994. This law is referred to as the Disability Reform and includes nine other services as rights along with personal assistance for people with impairment. There are three groups covered in this legislation which are for people with large and persistent difficulties in life: people with intellectual impairments, people with lasting mental dysfunction due to brain damage and people with other physical or mental impairment not linked to normal ageing.
The law allows for self-determination, with individuals in need of personal assistance making the decision based on the model of employment. They also decide who to employ (even when the municipality is the service provider). Decisions on the kind of assistance and where and when the assistance is to be carried out are also made by the individuals.
Statistics on the Swedish situation regarding personal assistance were found through the Swedish website http://assistanskoll.se . The Independent Living Institute provides this service in relation to Swedish personal assistance. Statistics showed that as per August 2012:
15,895 persons were receiving personal assistance through the Swedish National Insurance Board
On average people were receiving 119,05 hours service per week
The division regarding gender shows that 46,2 % women and 53,8 % men were receiving the service
The average number of hours for women is 116,16 and for men 117,62
3800 persons were receiving personal assistance through local authorities
Statistics show also that the division of service providers is as follows:
40. 0 % of services are provided through local authorities
46.3 % of services are provided by companies
10.3 % of services are provided through assistance cooperatives
About 2.5 % of services are provided through self – employers
There are about 800 private assistance administrators having from one to thousands of clients.
As we gain more information from this survey we will keep you updated on it’s progress.
Jamie Bolling
ENIL – Executive Director
26/11/012