Personal Assistance is a tool which allows for independent living. Personal assistance is purchased through earmarked cash allocations for disabled people, the purpose of which is to pay for any assistance needed. Personal assistance should be provided on the basis of an individual needs assessment and depending on the life situation of each individual. The rates allocated for personal assistance to disabled people need to be in line with the current salary rates in each country. As disabled people, we must have the right to recruit, train and manage our assistants with adequate support if we choose, and we should be the ones that choose the employment model which is most suitable for our needs. Personal assistance allocations must cover the salaries of personal assistants and other performance costs, such as all contributions due by the employer, administration costs and peer support for the person who needs assistance.
Article 19 of the UN Convention on the Rights of Persons with Disabilities requires States Parties to put in place personal assistance services, by stating that disabled people must “have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.”
Defining elements of personal assistance
Personal assistance must not be confused with home care, or other types of support services which are not controlled by disabled people themselves. For this reason, the General Comment 5, on living independently and being included in the community, includes a definition of personal assistance in paragraph 16(d), listing elements which distinguish personal assistance from other services:
i) Funding for personal assistance must be provided on the basis of personalized criteria and take into account human rights standards for decent employment. The funding is to be controlled by and allocated to the person with disability with the purpose of paying for any assistance required. It is based on an individual needs assessment and upon the individual life circumstances. Individualized services must not result in a reduced budget and/or higher personal payment;
(ii) The service must be controlled by the person with disability, meaning that he or she can either contract the service from a variety of providers or act as an employer. Persons with disabilities have the option to custom design their own service, i.e., design the service and decide by whom, how, when, where and in what way the service is delivered and to instruct and direct service providers;
(iii) Personal assistance is a one-to-one relationship. Personal assistants must be recruited, trained and supervised by the person granted personal assistance. Personal assistants should not be “shared” without the full and free consent of the person granted personal assistance. Sharing of personal assistants will potentially limit and hinder the self-determined and spontaneous participation in the community;
(iv) Self-management of service delivery. Persons with disabilities who require personal assistance can freely choose their degree of personal control over service delivery according to their life circumstances and preferences. Even if the responsibilities of “the employer” are contracted out, the person with disability always remains at the centre of the decisions concerning the assistance, the one to whom any inquiries must be directed and whose individual preferences must be respected. The control of personal assistance can be exercised through supported decision-making.
ENIL’s work on personal assistance (PA)
ENIL supports our members, other disabled people’s organisations and the authorities, when requested, by providing technical assistance on personal assistance. The model national personal assistance policy, developed by Adolf Ratzka in 2004, is one of the key documents explaining how a personal assistance scheme should work. In 2019, we piloted the Personal Assistance Checklist – a new tool for assessing existing PA schemes from the perspective of independent living. The PA Checklist can also be used when drafting proposals for PA legislation, making sure that it contains all the necessary elements that will enable disabled people to live independently. To improve understanding of the difference between PA and home care, we also developed a useful comparison table. It is available in English and in Spanish.
Many of our members developed video materials to explain how what a PA does and how personal assistance facilitates independent living; watch the videos by ULOBA, Norway and i-living, Greece. JAG, a cooperative from Sweden, provides personal assistance to people with intellectual and multiple impairments (sometimes referred to as people with “complex or complicated support needs”). They have developed a model, which allows people who use communication devices or need support in making decisions to be in control of their assistance. Other organisations, such as the National Center for Independent Living (NCIL) in the UK (no longer active), have developed a rough guide on employing and managing personal assistants, while other guides, such as this one, aim to help young disabled people transition into adulthood and become PA employers themselves.
Data about availability of Personal Assistance in Europe
From 2011 until 2013, ENIL carried out a survey into the availability of PA services within countries of the Council of Europe area and has compared country situations with regard to PA legislation. Disability experts from 21 European countries were involved in that process.
In 2015, this data was updated, covering a total of 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. The information was presented as Personal Assistance Tables and summarised in a report.
Between January and March 2018, ENIL carried out another 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 (with funding from Horizon 2020). 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 available here. We also contributed to this Thematic study, published by the European Commission.
As part of the same project, at 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.
In June 2020, ENIL launched its first Independent Living Survey, with the aim of collecting general information about access to Independent Living of disabled people across Europe, and detailed information about Personal Assistance schemes or systems. The Independent Living Map – a result of the Independent Living Survey – is available here. This information is being regularly updated, with the support of ENIL members.