Independent living and supported decision-making – more freedom for persons with disabilites

Persons with disabilities should have the opportunity to choose where and how they want to live. The Nordic and Baltic countries face similar challenges when it comes to independent living. Experiences and examples of promising practices were shared at the hybrid event Right to live independently and be included, which was held in Helsinki on 12 March. Video material from the event is available online.

EU initiatives for independent living

The European Commission adopted a new guidance on independent living for persons with disabilities in late 2024. It provides practical recommendations to member states on the use of EU funding to accelerate the transition from institutional care to community-based services and independent living for persons with disabilities.

– Decent quality of life and living independently are prioritized areas in the EU strategy for the rights of persons with disabilities, explains Olga Martínez de Briones from the European Commission.

The strategy contains an ambitious set of actions and flagship initiatives, such as the knowledge base AccessibleEU and the European Disability Card, approved as a directive in the autumn of 2024 and expected to be operational in 2028.

Deinstitutionalisation is a slow process

Most European states have developed strategies for deinstitutionalisation. However, reality can be far from the strategies.

– The progress is slow, says Sirpa Rautio, Director of the European Union Agency for Fundamental Rights.

Rautio also points out that there has been negative progress. For example, a survey from the EU Agency for the Improvement of Living and Working Conditions (Eurofound), shows that thirteen EU member states now have more adults with disabilities living in institutions than they did ten years ago.

People must be supported in making their own choices and decisions

Supported decision-making enables independence

People with an intellectual disability have the same right to make their own decisions as other people. Supported decision-making allows individuals with disabilities to make choices about their own lives with support from a team of people they choose.

– People must be supported in making their own choices and decisions, says Marine Uldry, Human Rights Policy Coordinator at the European Disability Forum.
A recent report from the European Disability Forum shows that there are links between denial of legal capacity and human rights violations in Europe. One of these forms is institutionalisation.

To achieve legal capacity, the support and the tools needed for persons with disabilities to be autonomous and to make decisions must be provided. Marine Uldry also underlines the following step: respecting the decisions.

– The underlying idea is that we are not protecting people, but protecting their right to be independent and make their own decisions, says Marine Uldry.

According to the European Disability Forum, 13 EU member states have supported decision-making implemented in their legal framework. There is also informal support in various areas, including health and mental health.

Promising practices and new laws

Several practical examples on promoting independent living and supported decision-making in the Nordic and Baltic countries were presented.
In Finland, supported decision-making is included as a social service in the new Disability Services Act. It is a subjective right, and the Wellbeing services counties have a special obligation to provide the service.

– A person has the right to supported decision-making when making significant decisions concerning his or her life, explains Rut Nordlund-Spiby from the Finnish Institute for Health and Welfare (THL).

She gives examples of situations where support may be needed: serious illness, major life transitions such as choosing what and where to study, or moving away from home.

In Denmark, a research project is looking into supported independent decision-making for adults with moderate intellectual developmental disabilities.

– There is a need to develop methods and approaches that support voice and influence in the lives of adults with intellectual disability, says Mie Engen from Aalborg University in Denmark.

The purpose of the project is to develop and test approaches to supported decision-making and generate knowledge about new methods for participation and influence. The aim is to do it in a co-creative process involving both professionals and adults with mild intellectual disability.