European experiences in transition from institutional to community-based settings 20.3.2018 Sabrina Ferraina, Policy Manager (EASPD)

Represents 15.000 support services in Europe EASPD Established in 1996 Represents 15.000 support services in Europe Mission: promote equal opportunities through high quality support service systems Accredited to the conference of States Parties to the UN CRPD EASPD is part of the European Expert Group on transition from institutional to community-based care (EEG)

Deinstitutionalisation in service provision Long term and/or intense care + In all other fields of life including employment, education, etc.

Residential care provided as shelter and means of survival The context in Europe Residential care provided as shelter and means of survival  These services do not promote a human rights approach Residential care with medical approach  Not in line with the Convention Residential care with balanced medical and social rights approach  Not in line with the Convention Iles of good practice where individualised support is provided and choice and control are made possible

Characteristics of poor service provision Services that are far away from families Low quality human and structural settings Size of centres Cross-border service provision Low expertise of staff Waiting lists Funding of services Lack of legal capacity

Support to the person according to individual needs and wishes What it is about Institutional care Community-base care Isolation from broader community No sufficient control over their life Paternalistic relationships Routine and block treatment Rules of the institution are more important than needs of the users Inclusion in the community Involvements of users in all decisions Flexibility Individual approach User in the centre Support to the person according to individual needs and wishes Deinstitutionalisation is a process but also an approach

Inclusion vs integration

The policy and legal case for deinstitutionalisation UN Convention on the Rights of the Persons with Disabilities (Art 19) – Ratified by both EU (2011) and all EU Member States Council Conclusions on “Enhancing Community-Based Support and Care for Independent Living” – December 2017 European Disability Strategy (2010-2020) UN Convention on the Rights of the Child (Art. 7; 9; 19; 23; 24; 28) ESIF funds UN Principles for Older Persons (Art. 3; 8)

Medical defect model + awareness on CRPD General recognition on the need to change the way long-term care is provided Most EU MS have adopted strategies ! Lack of funding, clear timeframes and benchmarks Often no operational plan accompanying the Strategy Few MS did commit not to build new institutions and/or stop new admissions Variance of responsibilities across authorities ! Coordination issues, gatekeeping issues Sustainability

Good DI processes Involvement of all actors from the very beginning Users at the forefront Stakeholder cooperation Sound planning and monitoring Focus on persons with high support needs Staff training and development Quality of support Needs assessment tools Throughput approach Quality of life indicators

Requirements Workforce Legal frameworks Financial frameworks Services Reorganise HR Legal frameworks Gatekeeping mechanisms Identify perverting effects of not specific legislation Financial frameworks Revise funding systems Services Include quality of life in quality of services instruments Support individuals and communities during transition

Mainstreaming of services What is needed New HR policies Facilitating support models (co-production, person-centred planning, etc) Reorganisation of systems of support Quality assurance systems focused on process & outcomes Needs analysis Integration of services Spectrum of services Mainstreaming of services

Examples of new types of services Distance support Distance learning Support through call centres ICT and assistive technology Home-help and home care Buddy services Legal advice Respite care ….

(Re)confirmation policy objectives  vision Key lessons (Re)confirmation policy objectives  vision Societal consensus based on clear values & stakeholder involvement Empowerment through empowering support Investment approach!  Allocate budget Leadership Ensure choice and control

Collect data on availability of services Recommendations Collect data on availability of services Explore and define link between quality of services and quality of life MS to include in the reports to the UN CRPD information about diversity and availability of services Ensure sustainable funding for service provision

EEG Toolkin on the use of EU funds to promote deinstitutionalisation Available resources European Expert Group (EEG) Guidelines on the transition from institutional to community-based care EEG Toolkin on the use of EU funds to promote deinstitutionalisation www.deinstitutionalisationguide.eu www.deinstitutionalisation.com

sabrina.ferraina@easpd.eu www.easpd.eu www.deinstitutionalisation.com www.deinstitutionalisationguide.eu