FRA opinions independent living

The following FRA opinions build on the findings of FRA’s fieldwork to examine the drivers of and barriers to the deinstitutionalisation process, as experienced by the actors responsible for designing and implementing it, and by the individuals and families going through the transition process. The opinions address the five essential features of successful deinstitutionalisation that FRA identified on the basis of the research findings. The FRA opinions primarily address policymakers in the EU institutions and the national administrations of EU Member States.

When responding to the opinions, EU institutions and Member States should ensure that they fully involve persons with disabilities, through their representative organisations, as required by the CRPD. Establishing or strengthening existing consultative mechanisms, such as advisory bodies that include persons with disabilities and their representative organisations, is one way to ensure the full participation of persons with disabilities in the design, implementation and monitoring of all efforts to further deinstitutionalisation. 

Common understanding of what deinstitutionalisation and independent living mean

Deinstitutionalisation entails fundamental changes in how and where services for persons with disabilities are provided, participants emphasised. It involves both a physical relocation from institutional settings to accommodation in the community, and a transformation in the culture shaping how services are delivered, so that they respond to individual needs and preferences. To ensure that community-based services promote autonomy and inclusion for persons with disabilities, these two elements must work in tandem.

However, understandings of these key terms across the participant groups often diverge from the definitions provided by the CRPD Committee in its General Comment on Article 19 of the convention, the research shows. Some participants saw independent living as meaning that persons with disabilities live in the community with limited or no financial and staff support. Others, particularly at the local level, felt that independent living is not appropriate for those with severe impairments or challenging behaviour. This is partly because of a lack of suitable community-based services for people with complex needs. Nevertheless, several participants noted that such attitudes often mean that deinstitutionalisation processes start with those with less severe impairments, to the detriment of individuals with complex needs. 

These different understandings prevent a common approach to putting deinstitutionalisation into practice. They also create frustration among the many different stakeholders involved in the process. Local-level participants felt they are tasked to implement policy that does not reflect reality on the ground, for example. Representative organisations of persons with disabilities meanwhile worried that staff of disability and other social services, and policymakers, do not incorporate rights-based approaches in their work. This can impede successful transition processes, as different actors take different steps to implement their own understanding of independent living. The Common European Guidelines on the transition from institutional to community-based care aim to address this by providing policymakers at all levels with practical, rights-based advice on how to achieve deinstitutionalisation.

Despite these differences, all the participants with personal experience of deinstitutionalisation – ranging from persons with disabilities to families, staff and community members – emphasised the positive impact it had on their lives. For persons with disabilities, it prompts greater choice and control, more personal space and privacy, and better relationships with staff, families and the wider community.

Commitment to deinstitutionalisation

Participants across countries and stakeholder groups agreed on the crucial importance of commitment to deinstitutionalisation across all levels of governance and among all stakeholders involved in the process. This commitment can derive from outside pressure, for example from the media or the EU, from individual stakeholders committed to deinstitutionalisation, and from the determined self-advocacy of persons with disabilities. Participants emphasised that commitment to developing laws and policies must be matched by a willingness to take the sometimes difficult steps to implement them.

At the national level, the research found strong signals of political will to implement the CRPD through legal reforms and targeted deinstitutionalisation strategies supported by adequate funding and actions to implement. Two-thirds of EU Member States have either adopted a dedicated strategy on deinstitutionalisation or included measures for deinstitutionalisation in a broader disability strategy, FRA’s report From institutions to community living: Part 1 – commitments and structures indicates. Participants welcomed these commitments, but expressed frustration at delays in their implementation. Many stakeholders at the local level argued that, in some cases, local commitment to deinstitutionalisation is stronger than national commitment. They felt that such local-level commitment can serve to inform, strengthen and campaign for greater national commitment.

Funding that is insufficient, poorly spent or difficult to access undermines efforts to achieve successful deinstitutionalisation, participants argued. They highlighted the need to shift funding from institutional to community-based services, and to provide additional resources to cover the costs of running  institutional and community-based services in parallel during the transition phase. Individualised financial support models, such as direct payments and personal budgets, promote greater choice and control for persons with disabilities, they felt. 

Many participants in Bulgaria and Slovakia highlighted the importance of European Structural and Investment Funds (ESIF) in funding deinstitutionalisation. However, using ESIF presents several practical challenges, they pointed out: these provide important lessons for the post-2020 funding period. ESIF’s project-based approach means that funding is time bound, which makes the sustainability of projects questionable if national funding is either not in place or insufficient to continue the activity when the ESIF project ends. In addition, restrictions on which organisations ESIF can finance, and a failure to take full advantage of the different activities that ESIF can fund, can mean that more innovative practices struggle to access financing.

Depriving people of legal capacity both leads to and lengthens institutionalisation by preventing people with disabilities from making choices about their lives, participants reported. It also has an impact on how people with disabilities are viewed, participants highlighted, because it casts them as being unable to express their preferences. This reinforces the findings of FRA’s report Legal capacity of persons with intellectual disabilities and persons with mental health problems, in which participants reported that their guardians took decisions over where they should live.

A change in attitudes towards persons with disabilities

Attitudes towards persons with disabilities are generally improving, participants felt. At the societal level, this is in large part a result of people with disabilities gradually becoming more visible. This contributes to a positive cycle: as people with disabilities become more visible and active in the community, communities are more welcoming to them, making the transition process easier. At the individual level, positive attitudes among staff of disability services empower people with disabilities to transition to the community and set a positive example for other colleagues. 

However, strongly embedded beliefs that people with disabilities should be ‘looked after’ and ‘cared for’ persist among staff, family members and, in some cases, persons with disabilities themselves. When staff hold them, such attitudes both prevent people with disabilities from leaving institutions, and lead to institutional approaches being carried over into community-based services. Among families, concerns about a lack of appropriate support services in the community fuel fears for the safety and security of their relatives if they start living independently in the community. This contributes to resistance towards deinstitutionalisation efforts. For persons with disabilities, the lack of opportunities in institutions to acquire and develop everyday life skills can leave them feeling ill-equipped for life in the community.

Participants felt that positive stories of people with disabilities living ordinary lives in the community help to reshape perceptions of disability and counter the ‘fear of the unknown’. These success stories are important both at the societal level, to help shape public attitudes, and at the individual level, where concrete examples of people transitioning from institutional to community-based services can help alleviate doubts that deinstitutionalisation is possible.

Active cooperation between the people involved in the deinstitutionalisation process

Deinstitutionalisation involves a wide range of actors. Systematic coordination and effective cooperation between them is essential. They include public authorities at the national, regional and local levels, and across sectors ranging from disability services to health, education and employment, as well as third sector organisations. But it also encompasses those whose involvement is personal rather than professional: families, local communities and persons with disabilities. 

Participants spoke extensively about the importance of cooperation, but reported that it is often lacking in practice. They pointed to gaps in cooperation both between different levels of government and across different sectors, driven in part by a tendency for stakeholders to focus only on their specific role in the process and a lack of clarity about which bodies are responsible for what part of the transition process.

Establishing working groups bringing together a wide range of relevant actors can improve coordination, cement cooperation and support a holistic approach to deinstitutionalisation, participants felt.

Some local-level participants reported feeling excluded from decision-making processes. They argued that this left national policymakers, in particular, without access to knowledge and experience of the everyday process of deinstitutionalisation. This increases the risk of developing policies that prove unworkable in practice.

Many participants pointed to the important contribution of so-called third sector organisations, such as associations, non-profit organisations, cooperatives, social enterprises and non-governmental organisations (NGOs), throughout the deinstitutionalisation process. At the policy level, they credited these organisations with achieving legislative reforms through their advocacy works. In implementation terms, they both pilot new and innovative services and provide valued expert advice on how to achieve deinstitutionalisation.

Availability of guidance to support the deinstitutionalisation process

Many participants spoke of struggling to translate the principles of autonomy, choice and control into practice. Practitioners reported an absence of guidance from the national level on how to apply law and policy to the realities they experience in their daily work. They identified more concrete and better targeted guidance as key to enabling them to implement a person-centred approach in practice. Participants also highlighted that guidance should be complemented by opportunities to see and discuss good practices in person. Learning exchanges allow stakeholders to acquire new knowledge and ideas on how to design and implement deinstitutionalisation, they noted.

Gaps in guidance to persons with disabilities and their families left some participants feeling unclear about what would happen to them and when during the deinstitutionalisation process, and reduced their ability to participate actively in the process.

Participants highlighted training for staff as a critical component of transforming institutional practices into person-centred approaches based on an independent living philosophy. This encompasses both training for new staff entering disability services and, in particular, re-training for existing staff on how to change the way they deliver services to meet the requirements of the CRPD. Training for staff working in other sectors such as health, employment and transport is also necessary. Participants emphasised that training should be on-going and based on practical examples.

Practical organisation of the deinstitutionalisation process

Participants emphasised two core elements of organising deinstitutionalisation in practice: developing specialised support services in the community, and making general services available to the public accessible to persons with disabilities. Both are, however, lacking. Specialised support services in the community include personal assistance, housing adaptations, technical aids, sign language interpreters, peer support and day-care centres, among others.

The absence of appropriate community-based disability services prevents people from leaving institutions, as they remain the only source of essential support. It also impedes the full realisation of independent living in the community, by curtailing the ability of people with disabilities to exercise choice and control over their lives. Participants reported that many community-based services are based on a ‘one size fits all’ approach, rather than being tailored to the needs and wishes of individuals. Efforts to develop more responsive services are sometimes undermined by overly rigid rules and regulations, participants report. Developing individual support plans for persons with disabilities is one way to help these services better their individual needs.

Housing, healthcare and transport services are often not accessible to persons with disabilities or unresponsive to their needs. Participants emphasised that being unable to access these services, and facing discrimination and prejudice when trying to do so, deepens the isolation of people with disabilities. This is compounded by the difficulties of accessing employment on the open labour market, which deprive people with disabilities of a route to financial stability and social inclusion.

For persons with disabilities themselves, participants emphasised the role of opportunities to develop independent living skills such as cooking, shopping or cleaning, which are not developed when living in institutionalised settings. Participants highlighted that this can help make the prospect of deinstitutionalisation less daunting for people with disabilities and reduce families’ concerns that their relatives lack the everyday skills necessary for living independently in the community.