The Malta Federation of Organisations Persons with Disability (MFOPD) is the national umbrella organisation for the disability sector and is the voice of all people with a disability in the Maltese Islands.
Today, 5 May, we Europeans are celebrating the European Independent Living Day and for the sake of all European citizens living in Malta, MFOPD wishes to give the following information regarding Independent Living (IL) and Personal Assistance (PA) from the European Network on Independent Living (ENIL) with whom MFOPD is affiliated.
Independent living is the daily demonstration of human rights-based disability policies. Independent living is possible through the combination of various environmental and individual factors that allow disabled people to have control over their own lives. This includes the opportunity to make real choices and decisions regarding where to live, with whom to live and how to live. Services must be available, accessible to all and provided on the basis of equal opportunity, free and informed consent and allowing disabled people flexibility in their daily life.
Independent living requires that the built environment, transport and information are accessible, that there is availability of technical aids, access to personal assistance and/or community-based services. It is necessary to point out that independent living is for all disabled people, regardless of gender, age and the level of support required.
Personal Assistance is a tool that allows for independent living and 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 who choose the employment model that 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.
Furthermore, on 25 March 2019, ENIL hosted an international conference under the title: ‘The Present and Future of Personal Assistance in Europe’. The following are some excerpts from its reporting by ENIL :
Ines Bulic, Deputy Director of ENIL, who chaired the meeting and facilitated the discussions, began by stating the pivotal importance of personal assistance (PA) for ENIL’s work. She also emphasised that PA is still unavailable in many European countries. In addition, there are schemes which are misleadingly called ‘PA’, while being very different from PA as defined, for example, in ‘General Comment No. 5’ on living independently and being included in the community, issued in 2017 by the Committee on the Rights of Persons with Disabilities.
Jamie Bolling, Director of the Independent Living Institute in Sweden, provided the ‘big picture’ by reflecting on the meaning of ‘independent living’ and on PA as a pillar of independent living, making references to the history of the independent living movement. Jamie emphasised that PA should be user-led and that it is about choice, control and the human dignity of the user. She also discussed Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD), which concerns the right to independent living and includes PA as a key prerequisite for achieving this right.
Katarina Ivanković-Kne?ević, Director for Social Affairs in DG Employment, Social Affairs and Inclusion at the European Commission, spoke about PA as a policy priority for the EU. She emphasised the importance of the CRPD, and particularly its Article 19 as providing a common ground for policy-making in the EU, related to independent living and PA.
ENIL’s advocacy officer Frank Sioen provided an in-depth analysis of recent EU policy initiatives and their significance for the future of PA. Frank discussed the European Pillar of Social Rights, exploring its potential impact on policies of inclusion of disabled people across EU member states. He also spoke about recent developments related to the Working Time Directive and their implications for the working conditions of the personal assistants. Frank then looked at the new regulation for the European Social Fund Plus (ESF+) 2021-2027, emphasising how important it is to use the fund for the development of PA schemes instead of residential institutions.
For the last few years, the Malta Federation has been talking about the importance of Independent Living for all those with disability. This means having all services in place and running smoothly without imposing any financial burdens on the beneficiaries themselves. It also means ensuring that people with disability are well-informed about their right to live independently and to be included in the community and have the opportunity to make their own choices.
Marthese Mugliette
President, MFOPD