At the end of 2023 the European Commission will adopt Guidance to Member States on Independent Living and inclusion in the community. For ENIL this is one of the most important policy initiatives within the European Strategy on the Rights of Persons with Disabilities 2021-2030 (ESRPD). We developed in-depth proposals which were presented at our launching event. A full recording is available here.

“The EU is so far missing a legislative document on Independent Living. Two important ingredients for Independent Living are fair personal assistance and accessible but also affordable housing.”

Stelios Kympouropoulos, Member of the European Parliament and former board member of ENIL, opened the event. According to MEP Kympouropoulos, the EU was so far missing a legislative document on Independent Living. This created a dangerous gap between the UNCRPD, the European Disability Strategy and the actual implementation. Two important ingredients for Independent Living were fair personal assistance and accessible but also affordable housing. These provisions should become clear in the EU Guidance. Other crucial factors of inclusion in the community were access to inclusive education for disabled children and access to employment. The expertise of disabled persons and their representative organisations should be taken on board in the EU initiative. For the Commission guidance to have a positive impact on people´s lifes, the EU has to increase its financial support. As an MEP and faithful supporter of the Independent Living movement I commit myself to ensuring a positive outcome of this initiative.

“The upcoming Guidance on Independent Living is one of our flagship initiatives. We need person-centred, local and quality services”.

Nora BEDNARSKI Member of Commissioner Dalli’s cabinet in charge of the rights of persons with disabilities, presented elements of the view of the leadership of the European Commission and explained that she wanted to share the progress in implementing the ESRPD in relation to Independent Living and inclusion in the community. The focus on the rights of persons with disabilities was reinforced with two flagship initiatives. The first flagship, the Guidance on Independent Living would not reinvent the wheel. They were going to build on the Guidelines on Deinstitutionalisation adopted by the Committee on the Rights of Persons with Disabilities and General Comment No 5. The Commission would explore examples to look at obstacles and challenges. The second flagship which would come out next year, was the framework for social services of excellence. The message of the European Commission was that we needed person-centred, local, quality services. Right now the Commission was in a process of listening, to member states and civil society organisations.

“At the moment there are 26972 disabled people living in institutions in Andalucia and 11 with personal assistance. Not enough is being done for our freedom, despite freedom being a fundamental right”

Cesar Gimenez, individual member of ENIL and member of the IL task force, described the situation in Spain and his home region, Andalucia. Cesar began his contribution by voicing surprise about the EU rhetoric saying that disability was a priority and the low number of MEPs attending events like the one today. Also, he was not yet convinced about the term “person-centred”. In Spain this term was used to describe group homes or smaller residential centres. No matter how good those institutions looked on the outside, they were not nice places to live inside. At the moment there were 26972 disabled people living in institutions in Andalucia and 11 with personal assistance. This was very sad. Not enough was being done for our freedom, despite freedom being a fundamental right. Finding accessible and affordable housing was also difficult. The word accessibility had not been mentioned once so far. The low employment rates or the exclusion from education were significant barriers too.

“In Flanders the waiting lists for the personal budget are much longer than for an institution which leaves people without choice. Every applicant who passes the assessment needs to receive the budget immediately”

Katrijn Ruts, Policy Advisor at GRIP, a Belgium member organisation of ENIL, presented insights about the state of Independent Living in the Belgium region of Flanders. During the last years Flanders had made some steps forward by implementing reforms on education, employment and support. Nevertheless, the region still had enormous problems with segregated schooling, sheltered employment and institutions. For a disabled child the waiting list for a place in an institution was much lower than for the personal budget. When families with a disabled child didn´t manage, the institution was the only solution. The funding going into the personal budget was increasing every year and the number of budget holders was going up too. Still for some people the waiting time was up to 20 years which was a shame. 16 000 people were on the waiting list and in addition 4000 – 5000 children. In 2021 GRIP had adopted a manifesto on personal assistance. Every applicant who passed the assessment needed to receive the personal budget straight away. PA had to give recipients the freedom to live who was to work for them, where, when and for which tasks. Affordable and accessible housing were also a problem. 180.000 were on a waiting list for renting a social house.

Katrijns´ presentation is available here.

“The European Parliament has taken a strong decision in favour of person-centred services and deinstitutionalisation. Now it is for the European Commission to act”

Anne-Sophie Pelletiter, Member of the European Parliament (MEP) from France and rapporteur of the resolution “towards equal rights for persons with disabilities”, remarked she would like to see events such as the one today to be more inclusive for people who didn´t speak English or needed sign language interpretation. MEP went on the explain her resolution had been based on her experiences as a carer for persons with disabilities. While working this job, she had never had enough time to properly support the disabled person. Usually, she only had 30 minutes to help someone to have lunch. There was never time to take a walk. It was clear to her that we needed more and better services for disabled people. By adopting her report the European Parliament had taken a strong decision in favour of more person-centred services and deinstitutionalisation. Now it was for the European Commission to act. Contrary to the UNCRPD, the EU was continuing to invest in institutions. This needed to stop. Since 2008 there was a directive being blocked in the Council of the EU. This horizontal anti-discrimination directive could have a positive impact on the rights of disabled people. MEP Pelletier said that since her election she had asked about this directive in every text she had worked on. She was also pushing for the European Parliament to routinely offer sign interpretation during sessions and publications in easy to read. At the moment the Parliament was not a good example in accessibility.

“I am currently the only disabled woman in the European Parliament which is a shame. I want to see more disabled female candidates in the next elections”

In a video contribution, Katrin Langensiepen, MEP from Germany, talked about being the only disabled woman in the European Parliament. According to the UNCRPD political participation was a human right. For her and her colleagues it was crystal clear that Independent Living was crucial. Independent Living was about being able to decide when to eat, when to go to bed, getting married, to choose a job. Independent Living also meant not being in an institution. It was crystal clear that institutions needed to be phased out. In the European Elections next year, she wanted to see more disabled women being elected.

“MEP Pelletier and ENIL have delivered excellent materials to inform the Commission Guidance on IL. Solid personal assistance schemes are key. Now we need the support of Member States.”

Katarina Ivanković-Knežević, Director at the Directorate for Social Rights and Inclusion at the European Commission, explained that she was very familiar with the resolution produced by MEP Pelletier which was excellent work and a good base for the work of the Commission. Ms Ivanković-Knežević thanked ENIL for the proposal on the Guidance on IL as those would ease the debates and concerns within the Commission. The ENIL document would also form part of the base for the Guidance on IL. All previous speakers had mentioned the importance of services and personal assistance. PA was a difficult topic because of the budgetary constraints. One key to IL was lying in a solid system of PA. The accent within the new Commission Guidance on IL would certainly be personal assistance. The need and demand for this service was much higher than what the member states currently had to offer. Also, the profession needed to become more attractive. The Commission could guide member states how to address PA. Redistribution of budgets was a topic which was key in this context. A DI process including a commitment to ending all institutions at a certain date was needed. Every DI process should include accessibility and affordability of services but also needs like transport and housing. The Guidance was planned for the end of the year. The Commission would use the time to reflect well with all of you.