On 17 October, ENIL’s Advocacy Officer, Frank Sioen, represented ENIL at the conference “ICavi Models of Independent Living” in Porto. The aim of the conference was to collect feedback on the current Pilot Personal Assistance (PA) legislation in view of the upcoming review of this pilot project.
The conference started with an overview of the progress that has been made in the fields of PA and Independent Living in Portugal. This clearly showed that the current pilot project does not allow disabled people in Portugal to make their own choices and live independently in the community. This was also pointed out by disabled people in the room. One of the main reasons is that the current system is still based on a limited availability of support (maximum 40 hours per week). This means that many people in the system are still forced to stay in an institution and only have limited choices on how and where to live. One of the disabled participants gave the example that he can decide when to wake up and when to go to bed, as long it is after 07.00 am in the morning and before 22.00 in the evening. This is not Independent Living.
Rather than addressing these points, which would be needed to improve the pilot project to realize real Independent Living, the conference seemed more aimed towards protecting the system as it currently is.
Several speakers emphasised the importance of involving disabled people and starting from a personal support plan to realise Independent Living. However, throughout the conference, speakers also stressed the need to protect the progress made and the reality of limited resources, which unfortunately do not allow for full realisation of the dream of Independent Living for all.
It is regrettable, in ENIL’s view, that the conference failed to seize the opportunity to collect feedback and provide strong recommendations to improve the pilot project. Limited resources are a political choice. Therefore, new PA legislation should not continue to reinforce the fake barrier of limited resources but rather start from the objective to enable all disabled people to take control over their own lives, as envisaged by the UN Convention on the Rights of Persons with Disabilities.