CONFERENCE „Dignity + Independent living = DI“

12 – 13 October 2017, Tallinn

KETRI KUPPER Working Group on Ageing, UNECE

23-24 Nov 2017

THE CONFERENCE FOCUS

• The conference aim:

• advancing discussions to accelerate transition from institution-based services to community-based

services in the EU Member States;

• new approaches to the development of the concept and financing of DI;

• new approaches to the promotion of human rights respectively;

• support the development of the EU-wide framework of participatory social welfare policies;

• provide input to the draft Council Conclusions on DI to be presented for adoption by EPSCO in

December 2017.

INDICATED RISKS

• RISK No 1: Lack of clarity about alternatives to institutional care• Legitimate concerns of users and families that they will be abandoned without adequate

services• Lessons learned from mistakes in DI processes

• RISK No 2: Costly, wrong replication of institutional culture on smaller scale• Hijacking of DI discourse by techno-bureaucratic complex with vested interests and

closeness to decision-makers.• Spending on “bricks and mortar”, investing into new, smaller buildings rather than into a

new person-centered services.

• RISK No 3: DI as a mere EU-funded exception to the rule of institutional care• Some Member States use ESIF for creating innovative services in the community but keep

national resources flowing mainly into the long-established institutional ones• Community-based services remain the exception, seen as experiments or “pilots” –

dominance of institutional model is not challenged – and they are financially unsustainable

SUGGESTED SOLUTIONS

EU level• Ensuring correct use of funds (ESIF) in line with ex-ante conditionalities

• Strengthen monitoring of the ex-ante conditionalities on the transition from institutional to community-based care.

• Ensure more transparency and an efficient complaints system. • Strengthen Partnership Principle, guarantee effective involvement of civil society as

watchdog. • It is not just about the funds – the European Commission has other tools,

too• KNOWLEDGE: Systematically use existing indicators for Article 19 CRPD. • Adopt Commission Communication on transition from institutional to community-

based services!• DISABILITY STRATEGY: The next Disability Strategy must be more forward-looking

and identify Article 19 CRPD as a key priority.

SUGGESTED SOLUTIONS

National level• Re-directing the funding to new types of services

• Follow the money: Need for better data collection and analysis – in many MS, most funding (even over 90%!) still goes to institutional care, spent on buildings, non-person-related staff costs etc.

• Remove perverse initiatives for institutionalization (more funding if child goes to institution)

• Ensure that money saved by closing institutions is re-directed to new type of services (and not to other policies)

National, regional level• User involvement, co-production, avoid top-down decision-making

• Real involvement of disabled persons´ organizations (DPOs), family organizations, and individual users (rights-holders).

SUGGESTED SOLUTIONS

All levels • Beyond social policy as such – mainstreaming inclusion across a broad

spectrum of policies:DI requires more than just closing institutions and more than creation of services to replaces them. It requires coordination of a number of policies:

Transport (accessibility), housing (Housing First!), urban planning (accessibility of public spaces, creating of community space for interaction of persons across the life course), education, employment, public procurement, research (including on ICT - personalization).

MAIN MESSAGE

We need PERSONALIZED support services allowing the users to be EMPOWERED, to exercise their SELF-DETERMINATION and their role as a SOCIAL BEINGS.

This requires PROFOUND reforms, not decorative changes or superficially nice-looking replication of old institutions on smaller scale. Politicians may like to cut ribbons… but person-centered services are essentially invisible.

The reforms have to be THOUGHT THROUGH with the people who are concerned.

Thank you!

Conference materials:

• Official conference website:• https://www.eu2017.ee/political-meetings/dignity-independent-living-di

• Opportunity to re-watch the whole conference:• First day: https://livestream.com/eu2017ee/events/7794062• Second day: https://livestream.com/eu2017ee/events/7794073