Reflections on the FRA report: how can the EU further support independent living? Prof. Lisa Waddington, European Disability Forum Chair in European Disability Law, Maastricht University

Faculty of Law 1. Promoting a more accessible environment and community to further independent living (1) The Commission intends to propose a European Accessibility Act. This should cover parts of the built environment and accessibility of goods and services. The Act will be an internal market instrument. However, the disability rights dimension is also very important.

Faculty of Law 1. Promoting a more accessible environment and community to further independent living (2) It is vital that the legislator takes into account: - the UN CRPD; - the accessibility needs of people with mental health problems and people with intellectual disabilities; and - considers how the Act can have the maximum impact on supporting the right to independent living.

Faculty of Law 2. Using the goodwill of the Member States to take forward EU disability policy in light of the UN CRPD (1) The prohibition of discrimination on the grounds of disability can contribute to independent living. However, the proposal for a EU directive prohibiting discrimination on a number of grounds, including disability, and extending beyond employment, is blocked in the Council, and very unlikely to be adopted.

Faculty of Law 2. Using the goodwill of the Member States to take forward EU disability policy in light of the UN CRPD (2) Nevertheless, there is a lot of support from Member States for further action to implement the UN CRPD. The Commission must find a way of using this goodwill, also with regard to policy on independent living.

Faculty of Law 3. Measures to ensure personalized support for independent living, and mobility of support when individuals move to another EU Member State (1) At present EU Member States provide for different levels of personalized support for independent living, and the support is funded in different ways. Support can be provided in cash or kind.

Faculty of Law 3. Measures to ensure personalized support for independent living, and mobility of support when individuals move to another EU Member State (2) Support can be provided through the social security system (insurance based scheme) or through the general taxation system. These different ways of providing personalized support impact on the mobility of the benefit between EU Member States.

Faculty of Law 3. Measures to ensure personalized support for independent living, and mobility of support when individuals move to another EU Member State (3) Benefits in kind cannot be exported at all. Benefits in cash can be exported in some circumstances – but situation is unclear. The situation is confused and intransparent and EU law does not clearly address such benefits.

Faculty of Law 3. Measures to ensure personalized support for independent living, and mobility of support when individuals move to another EU Member State (4) Report from trESS (Training and reporting on European Social Security), Coordination of Long-term Care Benefits – current situation and future prospects, Think Tank Report 2011, reflects on three possible Solutions which would ensure greater coordination. network.org/PUBLIC/EUROPEANREPORT/trESSIII_Think TankReport-LTC_ FINAL_amendmentsEC- FINAL.pdf

Faculty of Law 3. Measures to ensure personalized support for independent living, and mobility of support when individuals move to another EU Member State (5) A twin tracked approach is needed to move forward: - Member States must review their provision of personalized support and ensure that it is line with the UN CRPD; and - the EU must work towards better coordination to facilitate mobility..

Faculty of Law 4. Exchange of information and best practice amongst Member States and EU funded research on independent living (1) The EU provides a forum for exchanging information and best practice amongst Member States, and can fund research.

Faculty of Law 4. Exchange of information and best practice amongst Member States and EU funded research on independent living (2) These things are already happening through: - The High Level Group - The Academic Network of European Disability experts (ANED) - Fundamental Rights Agency - Specific and ad hoc research projects - EU research programmes – FP7 and Horizon 2020

Faculty of Law 4. Exchange of information and best practice amongst Member States and EU funded research on independent living (3) The legislative proposals for Horizon 2020 were tabled at the end of Independent living is mentioned as an area where research will be funded – but focus is highly medical.

Faculty of Law 4. Exchange of information and best practice amongst Member States and EU funded research on independent living (4) Research funded by the EU related to independent living must not only focus on technical developments or medical research, and must not only focus on the needs of people with mobility or physical impairments. Research is also needed on independent living which takes account of the human dimension, and which is relevant for people with intellectual disabilities and people with mental health problems.

Faculty of Law 4. Exchange of information and best practice amongst Member States and EU funded research on independent living (5) Research on independent living must also integrate the user perspective, including that of people with mental health problems and people with intellectual disabilities, and be based on the principles of participatory research.