Myths about DI

Where deinstitutionalization has occurred, it has largely failed.

Deinstitutionalization was successful in many countries. The first example is in Trieste, Italy, where institutions closed, and community services were established.

The European Guidelines for the Transition from Institutional to Community-Based Care describe many other successful examples, showing that the myth of fallen DI processes just does not stand.

Deinstitutionalization is resettling people from large institutions to smaller units in the community

Merely settling into smaller living spaces does not guarantee that the institutional culture will not be transferred to a new environment. When providing alternative care and designing community services, it is crucial to consider various factors, such as the extent to which users have a choice, whether they can make decisions about their lives, their needs and desires, and how they value the quality of care.

The size of housing units in the community is also important. Several studies have already been carried out at European level. The community Living in Europe – Structural funds watch organization, monitoring the use of EU funds for DI, warns that when 8-30 people live together, it is not a community form of care or deinstitutionalization but a small institution.

Various European Union regulations and documents, experts, and disability organizations point out that large housing groups are unsuitable for living and care. A housing unit where many people live together is still a small institution. Therefore, we cannot define such units as a community form of care.

We already have deinstitutionalization in Slovenia.

We do have deinstitutionalisation in Slovenia. Its beginnings date back to the 1960s, but we are far from completing the process. Above all, we have not introduced it into the public social welfare system sufficiently. At least some institutions have been closed in certain countries, and people advocated for community care. On the other hand, there have only been some partial relocations from a few institutions in Slovenia, but no institution has transformed completely.

Instead, a so-called two-track system has been developed. Such a system is less efficient and more expensive than if we’ve completed deinstitutionalization. This means that the state now invests money in both intensive institutional care and community services.

The Slovenian train of (de) institutionalization still runs on two tracks. However, as Andreja Rafaelič, Katarina Ficko, and Vito Flaker state in the article Transition to Community Forms of Care in Slovenia (Social Pedagogy, No. 04/04, 2017), we have created many new knowledge and methods of deinstitutionalization.

“Over and over again, we conducted various experiments and overcame many obstacles when introducing innovations, but systemic and legal changes never followed this. Thus, innovation actors have often been exhausted and stopped halfway to deinstitutionalization. When things do not move forward, and we no longer strive for development, things usually return to the old state,” wrote Rafaelič, Ficko, and Flaker, adding that we now have a two-tier social security system with solid institutions and underfunded community services. They point out that both institutional and community forms of care are unevenly distributed across the country.

Institutions can become more humane.

People often think that the most worrying things about institutions are the material living conditions (abandoned or poorly maintained buildings), neglect, and abuse of residents. Even if the material situation is good and there are no visible abuses, the institutions still limit the human rights of the residents. Institutions separate people from communities, suppress free decision-making about their lives and personal expression and foster a sense of being different and unfit to have an equal place in society.

The real problem is the institutional culture, which cannot be changed by freshly painted walls or improved entertainment activities. Namely, institutional culture does not give people the power to make decisions but sets rules and obstacles. Even the most mundane, even banal things are decided instead of them.

Some people will always need institutional care.

Experiences abroad and in Slovenia have shown that we can provide care for people with the most intensive needs in the community. Even people with multiple and complex needs can live in a community with adequate support. Quality community services provide people with a higher level of personal satisfaction and social inclusion.

This does not mean that deinstitutionalization and transition to the community is easy. For many people with disabilities, living in an institution is the only thing they know. They are used to living with severely limited choices. The transition to a community is probably the biggest and most significant change in their lives. As the transition means leaving old life patterns and creating new ones, we can expect that some of these persons will experience a great deal of stress, including hardship. Therefore, they need to be fully supported even during the transition.

People with disabilities will be lonely if they move into the community.

Some argue that people with disabilities are at risk of isolation if they live in a community. They claim that people with disabilities are happier in institutions because they have friends there – other people with disabilities.

However, institutions are synonymous with isolation and segregation. Residents are far from family, friends, and home, as they often live in distant places. People living in institutions can’t decide how and with whom they will spend the day. Their day is organized according to the decisions of the institution’s employees, and they have limited opportunities to communicate with other people when they want.

It should be noted that persons with disabilities who live in the community may also be isolated if they do not receive adequate care and support. That is why we need to provide it. Independent living in a community with a suitable form and measure of support enables the creation of long-term relationships, allows freedom for decision-making about one’s life, and supports communication with other people regardless of obstacles.

Deinstitutionalization contributes to homelessness and crime.

While closing institutions, it is necessary to provide community services and support persons to use them. People need support to establish a satisfying and secure life when moving into a community. Without community support, housing, employment, and support networks, they can indeed become socially excluded, just like others who did not live in an institution but were pushed to the margins of society. Deinstitutionalization is an opportunity for all those people to get support.

Services must be available to all persons with disabilities, those moving from the institution to the community, and those already in the community who are disadvantaged or even at the risk of institutionalization. Only this way can we prevent social exclusion.

To leave the institution, residents must be capable of living independently (without assistance).

Living in a community is a human right and cannot be conditioned by the ability to live without support. Independent living does not mean that a person does not need any support or help with daily tasks. Regardless of whether a person has support in their daily lives, we can still talk about independent living.

But a person cannot live independently if dependent on an institution. Residents in institutions cannot be independent, nor can they learn to live outside the institutions. Only by the experience of living in the community can they learn this.

Living outside the institution carries too many risks for people with disabilities.

Institutions are often more dangerous places to live than the community. Neglect, physical and sexual abuse, forced treatment, and forced labour in institutions are not uncommon. The reasons are various – insufficient staff training, overcrowding, employees making decisions instead of residents, non-transparency, and isolation.

On the other hand, living in a community allows people to take control of the type and level of support they need. Individual needs and desires are at the centre, but at the same time, taking responsibility and the right to live in the chosen environment are also important. The number of incidents did not increase where deinstitutionalization was carried out professionally and following good practice.

Living in institutions is riskier than outside their walls.

Community services are much more expensive.

There is no evidence that community-based care models are significantly more expensive than institutional care. Nevertheless, there is a general unfounded belief that community services cost more than living in institutions. Because of such ideas, decision-makers often prefer the option of institutional care.

Various studies suggest that the difference in costs is not significant. For example, when analyzing the cost-effectiveness of closing institutions in Finland, they found that community-based care was about seven percent more expensive than institutional care. Although the community costs of housing and primary care were lower than in institutional care, the total costs of community care were higher due to using other services. In the institutions, these costs were included in the price of the day.

However, all family members reported significantly better quality of life after the residents left the institution. The hospital care period was shortened, the amount of medication reduced, and their behavior changed for the better. There was also a significant change in people-to-people relationships, as there were significantly more interactions in the community.

Beneficial effects on people thus outweighed the slightly higher cost of community care.