Basic concepts of DI

Institution

An institution is an establishment that tends to cover all the persons’ needs under one roof and all aspects of a person’s life by specific rules and authority. Although this feature is common to all institutions, they differ from each other (in some places, one feature prevails, in others, another).

The characteristics of the institutions are as follows:

  • cover all individual needs (including leisure),
  • transition between statuses is difficult (for a user to become employed),
  • disciplinary techniques,
  • use of coercion (an increase of medicines, restraint, etc.),
  • the daily life of users is adjusted to the schedule and work of employees,
  • collective treatment of people (no individual approach),
  • geographical distance from cities,
  • the requirements and interests of the organization usually take precedence over the individual needs of users,
  • residents are separated from the wider community and/or forced to live together,
  • residents do not have enough control over their lives and the decisions that affect them.

The European guidelines for the transition from institutional to community-based care outline many reasons why living in institutions is not suitable for anyone. Namely, institutions often confiscate personal property from users, offer them only a rigid routine, users have minimal contact (or no contact at all) with people outside the institution, and so on.

The Common European Guidelines for the Transition from Institutional to Community Care authors highlighted psychological and sexual abuse, excessive use of coercive means, inhumane and unhealthy living conditions, unhealthy food, impurity, etc., as harmful. Institutionalization also leads to poorer social and community services (not so much demand as most users is in the institution) and consequently leads to discrimination and social exclusion of people with disabilities or mental health problems.

Community care

In response to institutional care, deinstitutionalization began to develop worldwide. At the same time, various community-based services have started to develop. In the European Guidelines for the Transition from Institutional to Community-Based Care, the authors define community-based care as a different set of services that enable individuals with disabilities to live in a community regardless of their difficulties or the extent of their needs.

Community care includes all: education, culture, leisure, employment, health, and accommodation services. With the help of such services, we can ensure that people with disabilities can live as independently as possible in the community.

Community care is intended for an individual and a group of individuals, so services must be tailored to the person. They must be based on the wishes and needs of the person. In this, community care differs from the care people receive in institutions – care in an institution is organized according to the supposed collective needs of all users. Often, no one asks or pays enough attention to their users’ needs. The institutional care system assumes that all users have the same needs, although there is no answer to this question at all. Thus, in contrast to community care, care in an institution does not address the needs of each individual.

While institutional care excludes individuals, community care must ensure that people participate in the community as equal members. We increase community participation by providing equal and accessible services to all.

Independent living

Independent living means that individuals can live their lives independently of other people and have free choice, influence, and control over it. This is already ensured by Article 19 of the Convention on the Rights of Persons with Disabilities, which states that everyone can choose where, with whom, and how they will live. This allows the individual to make decisions about their life. And this is the basis of independent living.

Independent living requires that surroundings, information, and transport are accessible to all people in the community. If not, aids must be available to make the surroundings, information, and transport accessible to everyone.

Various services in the community must be available and accessible to all people, both those with and without disabilities. They also must provide everyone with equal access and information.

Personal assistance is one of the services that allows the user to live an independent life, as described in the paragraphs above. As part of personal assistance, the employer, i.e., the person with a disability, hires a worker and trains them for work (to help with daily tasks, hygiene, shopping, etc.). The assistant thus enables the person with a disability to live independently. People with disabilities must have the right and opportunity to choose and train their assistants and decide on the method of hiring their assistants.

In addition to personal assistance, which is not the only measure for independent living, creating and developing new or existing services is necessary while connecting and cooperating with the community. Access to housing, education, public transport, individual service packages, health services, and other public services must be ensured. It is necessary to strengthen the power and influence of people with disabilities to become part of the community and be respected. At the same time, it is necessary to re-evaluate the roles in society.

Independent living is based on human rights. Individuals arrange their lives according to their wishes, abilities, and needs. In this way, they accept responsibility for their decisions, which also applies to  ​​personal assistance management.

Normalization

Revaluation of social roles or normalization is of crucial importance in community care. It helps us ensure that the institutional care model is not transferred to community services. At the same time, it contributes to social inclusion by changing societal perceptions of people experiencing long-term hardship.

It also means providing people with disabilities a chance to live the everyday lives others live and replacing stigmatized roles with valued roles in the community.

Normalization consists of five principles *: deepening relationships, increasing choice, developing participation, individualizing development, and intensifying socializing. The principles mainly cover the interrelationships between users, employees, and the community. If we follow the principles of normalization, we can contribute to improving users’ quality of life.

The purpose of normalization is to evaluate existing services and compare life in the institution with life in the community. Based on the findings, we identify steps to improve the situation.

The criteria for normalization are societal views of “normality,” as each society, according to cultural differences, is subject to a different framework for this notion.

 

* Brandon, D. (1991), Increasing Value: The Implications of the Principle of Normalization for Mental Illness Services. Salford University College.

Transinstitutionalization and reinstitutionalisation

Transinstitutionalisation, like deinstitutionalization, involves the relocation of people. However, we must be aware that resettling people to another institution is contrary to the philosophy of deinstitutionalization.

Reinstitutionalization is when people move from an institution to a community, spend some time there, and then return to the institution.

One could easily mix these two processes, but reinstitutionalization is actually the opposite of DI. It is necessary to establish sovereignty in people who have moved to the community and support them to gain power in their independent lives.