It also outlines input from the families of individuals going through the transition to community-based living, members of local communities, and the various people responsible for designing the process and implementing it on a daily basis. In so doing, it can serve as an important resource for policymakers looking to take this important work forward – with the ultimate goal of ensuring that people with disabilities can live independently in the community on an equal basis with others.
Key findings and FRA opinions
This video shows what a transformation deinstitutionalisation can have on the lives of people with disabilities:
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.
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.
Member States could make use of the Common European Guidelines on the transition from institutional to community-based care to inform trainings on key concepts for stakeholders responsible for deinstitutionalisation policy and implementation. The European Commission should support the development of a common understanding of deinstitutionalisation in actions supported by the European Structural and Investment Funds by further promoting use of the Common European Guidelines, particularly at the national level.
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.
The European Commission should include comprehensive and explicit measures, within its areas of competence, for the protection, promotion and fulfilment of the right to independent living in the post-2020 European disability strategy. To deliver on commitments contained in the European
Pillar of Social Rights, the EU legislature should proceed swiftly with concrete legal initiatives to implement the principles and rights enshrined in the Pillar.
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.
EU institutions and Member States should take advantage of the full range of EU financial tools to support the transition from institutional to community-based support. This should include training and capacity building for staff, developing individual support plans and funding home adaptations and other infrastructure. The EU legislature should ensure that the post-2020 ESIF regulations build on the current legal framework and contain strong fundamental rights guarantees to ensure that the EU fully respects its human and fundamental rights obligations under the CRPD and the Charter for Fundamental Rights.
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.
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.
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.
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.
EU Member States should facilitate learning exchanges between localities, regions and countries. The European Commission should further develop and strengthen mechanisms to foster exchange of good practices between EU Member States. This should incorporate funding, including through the use of ESIF, short-term field visits and longer-term professional exchanges to enable peer-to-peer learning.
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.
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.
EU Member States should ensure that adequate, good quality and freely chosen personalised support for independent living is available for all persons with disabilities. This support should be available regardless of an individual’s living arrangements. It should also be under the user’s control. EU Member States should pay particular attention to developing personal assistance services.
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.
EU Member States should develop measures to ensure non-discrimination on the grounds of disability in employment and occupation, in line with their obligations under the Employment Equality Directive and in cooperation with their national equality bodies. They should develop programmes to facilitate equal access to employment on the open labour market for people with disabilities.
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.
I was up in the main house [of an institution for women with intellectual disabilities] at first. I don’t know why; my mam just told me it would be better for me.
It was big dorm rooms up there. Eventually I moved down to [another unit] and I got my own room.
The staff were still on duty at night though, they used to open the door at night, checking you were OK. There would have been a lot of people in that house.
When they first started talking about moving out into the community, I wasn’t too sure about it. I didn’t know what I was going to face. But I said, sure, I’ll give it a go.
I moved into a house with four other girls. That didn’t suit me at all, though, they expected me to do everything.
I used to go up to [the institution] every day after work, I was telling [the manager in charge], ‘I have to move out, I want to move out’.
My family didn’t let it happen for a long time, though, they were dead set against it. They didn’t think I’d be able to do it, living on my own.
In the end, [a support worker] came down with me to [the family home] and I told my sister: ‘That’s it, I’m moving out, I need my own space.’ And so they said: ‘Well, alright then Cathy.’
I went and viewed apartments myself, with [the support worker] and my younger sister. I saw this apartment and I said: yes, this is the one.
I have my own balcony, with a few plants, and I can see over to the river from the balcony. I have a spare room, and my sisters come and stay. My name is on the lease, and if I have any problems, the landlord comes, no hassle.
I go to work from 10.00-14.00, three days a week, but I get the bus so I’m out from 8.30 to 4.00.
I go to the local day service on Wednesday mornings, and I’m into all the community activities here, the youth club, the ladies’ group.
The neighbours are friendly, they called over when I first arrived, to see if I was ok.
I don’t mind being here on my own in the evenings, I’m tired, I’ll watch a bit of telly. I don’t stay here on my own on the weekends, though, it might be a bit lonely.
So every second weekend, I go to [her care worker]’s house, she lives with her partner on a farm. Every other weekend, I go and stay with my friend [Bernadette] in [town]. There’s no staff there, just the two of us for the weekend.
What else do I need in my life? Nothing, I’m happy the way I am.
My story is not easy to tell. I was born in 1957, I don’t know why my mother abandoned me, maybe she was poor or maybe she didn’t want me. As soon as I was born I was sent to a Catholic institution.
Then one day, I was called and they told me that I could go and live in a flat and that I could choose whom to share the flat with. I discarded so many names and then I said yes and, my friend Francesca said yes, that it was fine for her too and we moved.
When we saw it for the first time, the flat was empty but cool, then we chose the colour of the kitchen and I chose light blue. There was the light-blue kitchen as I wanted it to be.
No, she doesn’t! She comes back because she always forgets to make her bed in the morning. She makes her bed. I make mine. Then she prepares coffee.
After that, we get ready: we check the lights, the water and the gas. Then we go to the bus stop and wait. We get off in Moccia. We walk to the residence and ring the bell: ‘Who is that?’ asks Franco. ‘It’s us!’
We go upstairs. We are independent at the residence.
I’m in charge of cleaning and doing some work in the [pizzeria’s] kitchen: I wash the salad and cut it to put it on the plates. Then at about 4.30pm we go back.
The bus brings us back home and as soon as I arrive, I immediately have a shower and I relax watching TV and then go and do some shopping if I need to or I go out and have a coffee at the cafe.
I like my life at the moment and I wouldn’t change it; living in a flat with Francesca is fine. I’ve learnt so many things and I like to do them!
I’m quadriplegic - I cannot move either my arms or my legs. I am from a family of seven and it was not easy to manage my impairment. So when I was five, I moved to a big institution in a large town – my father moved with my whole family to be closer to me.
At the beginning it was difficult: I felt disoriented and I missed my family. But later I found my feet. In the institution I met people living with the same condition and I became aware of the difficulties I was going to face.
I graduated as a business secretary. When I was 18, my father died and I needed to work. The disability benefit wasn’t enough. We created a cooperative society to obtain jobs to carry out in the institution.
In 1982, I found an external job. I wanted to work and I wanted a real job, with other people.
Together with the institution and support from an NGO, we found suitable accommodation for me in a community in the centre of Italy. It was a community not only for people with disabilities.
It was a completely different experience compared to the institution: there were no time schedules besides the meals and we had to organise our own days. I used to write for an internal magazine and we also used to deal with social problems... we were very active!
In this community I met my wife, Paola. She visited the community with her friends from an institution in Tuscany. I went to Tuscany to visit Paola.
I met the director of the institution. When he saw that I was interested in Paola, he suggested that I could be integrated into a family shelter nearby, so we could be closer and avoid the journey. I moved in 1990. I spent two years at the family shelter. During this time Paola and I were preparing the documents for our wedding.
Getting a flat became an urgent necessity as Paola and I wanted to get married. But the bureaucracy was complicated.
Our problems in getting married were not only bureaucratic but also practical. Paola’s parents were opposed to the idea, they didn’t want her to live with me; they would rather have her at home with them.
But Paola was very determined and she won. We got married in 1995. We made it. We got what we wished for, what we wanted.
Now we live together. We have a care-giver who stays with us all day and sleeps at our place. She does the shopping and cooking. We get along with her.
During the day a guy comes to help her with the housework. Both Paola and I work in the institution’s cooperative societies: I am in charge of the wheelchairs and Paola of the estate office.
During the summer, we go on holiday to the seaside with a group and we spend two weeks there. We spend important holidays with Paola’s dad.
It was a journey in stages, but a very fruitful one.
I was the son of a single mother who left me with my grandparents because she wasn’t able to take care of me. I spent my early childhood with my grandparents and three young and single uncles in the countryside.
I went to school up to secondary school after I had failed four times in primary school.
A difficult period began; I started drinking, did occasional jobs, and started working as a pizza man for a long time. It is a confused period, of drinking, messy days and I often slept in the street because I was too drunk. At home the relationships got tense: my uncle drank too and sometimes beat me.
I thought I was another person and sometimes when I drank I slept out during the night ... it was a life that could not continue for a long time ... in that period I didn’t work much. I started working when I was 20.
During this period, I got in contact with a “lady of the province”, who maybe was a social assistant who pointed me out to the local Mental Health Centre, where I met Dr Romano who sent me to the family shelter created by the institution.
I owe a lot to the institution because ... I have to say another thing, it helped me also give up drinking ... I used to drink ... yes, I used to drink.
When I turned 25, I got my secondary school licence by attending evening classes. When the family shelter was closed because of administrative problems, I was moved to the institution. I consider it to be a positive experience too. The institution had some more rules, a more rigid time organisation compared to the family shelter.
I lived in the institution from 1990 to 2003. My addiction problems continued even during the institution period; my health worsened too. I succeeded in giving up drinking when I was 34. On 15 May 1995, I gave up drinking.
In July of the same year, I met my present partner in the institution. I applied for social housing and I received a flat where I gradually moved. Moving to an apartment was for me a big change: I bought the furniture with my partner and together decorated the flat.
I had a life ... having a house feels like I won the lottery.
My life routine has changed: I invite friends over or I’m invited by them. I decide my life routine together with my partner: the house is a completely different thing.
My current condition is independent living. I live with my partner, we take care of each other, and I’m satisfied and happy because I succeeded in changing my life. I don’t live in a protected apartment with an assistant: the responsibility is entirely on me and my partner including the costs and everything else.
I’ve been integrated in the social cooperative society linked to the institution and I’m working again as a pizza man. I’m only assisted in money management: some money is provided directly to my bank account and some is provided weekly in cash from the institution’s administration for me to pay daily expenses.
I’m supported by the institution’s psychiatrist.
Now I’m waiting for social benefits in order to do what I like, such as looking for mushrooms or going around with my car.
Thanks to the family shelter and the institution, I started a regular life.
I had been living in an institution since I was seven.
I was chosen for relocation to supporting living and underwent training in the training flat. The training apartment looks like a regular flat, with its own living room, kitchen, bathroom and equipment such as washing machine, unlike all other ‘rooms’ in the institution.
I learned new skills like cooking, cleaning, taking care of money.
Several months ago, other clients and I moved together to our own supported living flat in the centre of the town, where I live with five other people (two in one room).
There is also one room for instructors, who have been living with us (one at a time, altogether four rotating in shifts).
I was afraid of living outside of the institution for the first two weeks, but then I settled very well and now I am not afraid anymore – except for the fact of living on the highest floor.
For the future, I have a dream of being able to work as either a chef or a cleaning person in the restaurant and to have my own little house with a big kitchen.
I am particularly happy about being able to make my own plans, decisions and choices, especially over the weekends.
Although my daily plans are quite similar to what they were when I lived in the institution, now I can choose what I want to do.
I have more privacy and I do not need to wake up with others very early in the morning. I can decide whether to do some writing, or sit and have some coffee in peace.
Before I moved to the [supported living] flat, I lived in an institution.
The main difference is that in the institution I had to share a room with seven other clients – all of them were girls. The boys had a different room in the same section of the building.
Now I share a room only with one girl – she is my best friend.
Last year, I was told by the director of the institution that I had been selected as one of six individuals for deinstitutionalisation.
The director had a meeting with all of us and explained the process of training and moving to the flat. They provided us with information about what it would look like and what we can expect. I was asked whether I would be willing to move to the flat and I agreed; I was looking forward to moving to the flat.
As the first step, we moved to a ‘training flat’. The director described the whole process to us – that we would go to the training flat to learn all the skills necessary for independent living and, after that, we would move to a supported living flat, outside the institution.
We learned how to prepare food, wash our laundry, iron our clothes, how to count money, how to go to a shop and buy things, how to buy tickets for the train or bus.
Sometimes we went for walks with our instructor to learn how to get oriented in the town.
A year ago, we moved to the supported living flat. We call it ‘home’.
At the beginning, I was afraid to go there, because I could not imagine what it would look like and I did not know anybody in the neighbourhood. The flat is located high in the block of flats and at the beginning I was scared of the height. I did not even go on to the balcony. Now I do.
Now I have some friends in the block of flats – three girls from the lower floor. Sometimes we chat when we are waiting for the lift or when the girls play in front of the block of flats.
I do not have keys and never spend time in the flat alone. We always have some sort of supervision or ‘company’ from the instructor or another employee of the institution.
I would like to visit my family one day, but I don’t believe it will happen. My family visited me only once.
I would also like to live even more independently than now – having my own family. But I don’t know whether it is possible, it’s just my dream. My dream is to have a proper job outside the institution.
I would like to work as a nurse for older people. I want to earn money since I only have my disability pension, which is very low.
I come from a village in eastern Slovakia. I still have a grandmother there, who I occasionally visit.
Before coming to my social services home, I lived in the children’s home in the nearby town. Looking back, I mainly remember the strict rules applied there. I was allowed to go out only for two hours a day and if I broke those rules, I was punished; I was not allowed to go out the next day.
When I was 18, I had to leave the children’s home. According to the rules, when somebody finishes their education and becomes adult they have to leave.
The home’s director arranged for me to move to a social services home.
I currently live in the supported living flat operated by the institution. I share my bedroom with one roommate. This does not grant me the privacy I dream of. The kitchen is next to my bedroom, we make our own breakfast together there.
Since having supported living, I can go out unaccompanied. However, I cannot leave unnoticed, as supported living is within the institution without a separate entrance.
I must also tell the social worker when I want to go out. Sometimes I visit the leisure centre in town. It runs leisure activities for the institution’s clients, once or twice a week.
I regularly visit the Labour Office in the nearby town. I have to go there, since I am unemployed. I regularly meet the official to get job offers or other activities aimed at finding job.
A year ago, I finished a nursing course organised by the Labour Office. I could be employed as a caregiver, but because of the high unemployment rate, I still have not been able to find a job.
Before completing the course, I was allowed to assist caregivers, for example doing the laundry, giving clients something to drink. Before I attended the course, I was not allowed to feed clients, the course is necessary for feeding.
I would like to work as a caregiver; I want to use the education I got during the course. Within the institution, I had worked as a caregiver and as a handyman. I also applied for a job outside the institution, but have not been successful yet.
Not being formally in the deinstitutionalisation process, I did not get training or consultations on the process. My current situation allows me to make small everyday decisions mainly on what I am going to do during the day.
The choice and control I have over my life is limited because I am without almost any income. I receive just small social benefits and sometimes also an intermittent salary for occasional working activities. With almost no income, I am not even able to go out for a meal, to go shopping, etc.
In the future, I would like to find a job and to live outside the institution in a small flat, for example. I would prefer to live there alone. I can even imagine moving to another town, like Bratislava since there are more job opportunities and higher salaries.
I also think that, like many other people from the town, I could go abroad to work as a caregiver there. However, I am aware that it might be difficult since I do not speak a foreign language.
All names used in these stories are pseudonyms.