The European Commission launched its new Guidance on independent living and inclusion in the community for persons with disabilities in the context of EU funding on 20 November. This document aims to clarify how EU funds should be used to support the transition from institutions to independent living in the community. It is a tool to prevent EU money from being used to further the segregation and institutionalisation of persons with disabilities.
We believe this guidance is a positive step towards compliance with human rights and appreciate the Commission’s work on it. Below, we explain why it’s needed, for whom it’s intended and how it will help ensure independent living for persons with disabilities.
Why the Guidance was needed
The right to independent living and inclusion in the Community is guaranteed in Article 19 of the UN Convention on the Rights of Persons with Disabilities and its General Comment 5.
While the Convention has been ratified by all EU Member States and the EU itself, there are still 1.4 million persons with disabilities living segregated in institutions in the EU. Furthermore, a recent report by Eurofound shows that these numbers have increased in the last decade in 13 EU Member States, sometimes dramatically so.
There is also an ongoing issue of EU funding going towards renovating or building residential institutions, despite this not being allowed. While the EU has limited power to stop the Member States from spending their own money, it does have the power to control how EU funds are spent. This guidance is, therefore, intended to ensure that EU money no longer goes towards these segregating settings.
The guidance doesn’t just cover funds spent within the EU. It is also intended to guide the expenditure of EU money for external action and any EU projects funded internationally.
What does it say about that transition to community living
The guidance makes it clear that authorities must redirect resources away from institutional settings and towards accessible and non-segregated places of residence, community-based services and support.
It underlines that the transition towards independent living involves phasing out existing institutional infrastructure and services in a clearly defined timeframe. This means it is not enough to simply enable people to leave institutions; there should be no new admissions into them, and they should all eventually be closed. It also stresses the need for a dedicated budget and resources to make this a reality.
In order to clarify what settings are appropriate for persons with disabilities to live in, the document states that “places of residence of persons with disabilities can take many forms, from individual dwellings to cohabitation arrangements, and different types of tenancies (e.g. ownership or rental).” This includes the so-called “residential” services, such as social housing, self-managed co-housing or free matching services that assist persons with disabilities in finding a place to live in the community. It is, however, required that the place of residence of a person with disabilities not be segregated or isolated from the local community.. It is, however, required that the place of residence of a person with disabilities not be segregated or isolated from the local community.
Beyond this, the guidance underlines that “the right to independent living is not consistent with the practice of replacing large-scale institutional settings by (or transforming them into) smaller ones where the preconditions for independent living and inclusion in the community are not met, nor with having persons with disabilities living in their homes without the support mechanisms that enable their inclusion in the community.”
It also states that authorities must plan for the future use or repurposing of the institutional facilities once vacated, to avoid incurring additional and unnecessary costs. We welcome this clarification as the cost issue is often brought up as a reason to delay deinstitutionalisation.
Finally, the guidance reiterates the need for independent quality control systems, including accessible complaint mechanisms available to persons with disabilities, their families or persons representing their interests. This is to enable people to easily flag issues with services provided to them and to have them addressed swiftly and adequately.
Where it advises money should go instead
The guidance recommends the following:
- Personal assistance schemes
- individual budgets or personal budgets which can facilitate the tailoring of funding to the individual needs of persons with disabilities
- Preventing institutionalisation through guidance and support for families, including foster families, accessible and inclusive early childhood education and care
- Provision of individual accessible social housing;
- Professional home care, to enable persons with disabilities to continue living in their usual place of residence
- Making sure services for the general population are also available, accessible, inclusive and adaptable for persons with disabilities
- Affordable assistive technology and innovative accessible technological solutions
- Improving accessibility of the built environment, community facilities, infrastructure, transport, goods and services
- Building up a skilled and sufficient workforce and improving the attractiveness of the care and support services sector, including by ensuring fair working conditions, and strengthening the profession of personal assistant
- training on independent living for public authorities, healthcare as well as social and support services staff, including personal assistants and social workers
- Making sure information on services and programmes reaches their intended users through effective outreach.
- Ensuring the availability of supported decision-making services, particularly for adults with mental health problems and psychosocial disabilities, and adults with intellectual disabilities or complex support needs
- Support to redress the effects of long-term institutionalisation of persons with disabilities leaving institutions and to accompany persons with disabilities in developing autonomy and self-sufficiency
- Improving data collection on persons living in institutions and properly monitoring the deinstitutionalisation of persons with disabilities
- supporting inclusion during crises and rapid response efforts, as well as inclusion in evacuation, relief and recovery measures and full accessibility of support in situations of disaster and humanitarian emergency.
Who is the guidance for
The Guidance is intended for all authorities that decide how EU funding is used or deliver projects financed using EU money under shared management. This most commonly refers to what are known as the “managing authorities”. These bodies provide information on the programme, select projects and monitor implementation. In the EU Member States, some of these operate at the national level, others at the regional level.
It is also for service providers and persons with disabilities themselves, so they have clarity on what the European Commission considers the best approach for independent living and inclusion and what they consider to be institutions.
How it is made practical and easy to follow
The guidance should be understandable to people who do not have a background in human rights or a knowledge of the UN Convention on the Rights of Persons with Disabilities.
To avoid confusion, section 4 of the guidance contains a list of suggested actions that EU funding can go towards.
There is also an annex containing a self-assessment tool for operations under EU funds. This helps the managing authorities and the users of EU funds to cross-check, in a simple way, whether their actions will further institutionalisation or promote independent living and inclusion in the community.