“Giving effect to independent living involves redirecting investments and resources from institutional settings and services to accessible and non-segregated places of residence, community-based services and support for persons with disabilities.”

The European Commission released a Notice on “Guidance on independent living and inclusion in the community of persons with disabilities in the context of EU funding”. The Guidance is for EU countries, authorities and organisations using EU funds to support persons with disabilities.

The Guidance suggest EU countries should have a strategy for deinstitutionalisation, prepared in consultation with persons with disabilities.

The strategy should include:

• clearly defined timeline for the overall deinstitutionalisation process;
• needs-based analysis of investment gaps based on the outcome of individual needs assessments and a mapping of existing infrastructure, services and workforce;
• time-bound targets and respective indicators;
• dedicated budget and resources, including for the elaboration and implementation of individual plans for the transition to, and for achieving, independent living;
• clear governance and division of the responsibilities of the main stakeholders implementing the actions;
• robust and independent quality control system, including accessible complaint mechanisms available to persons with disabilities, their families or persons representing their interests;
• monitoring tools to guide the structural reforms needed and related investments.

“Despite deinstitutionalisation strategies being in place in EU Member States, the numbers of children, adults with disabilities and older people in residential care has risen.”

That’s the main finding of Eurofound report on deinstitutionalisation.

The number of children in residential care has increased by 14% (from 410,126 to 466,807).

• The number of children in residential institutions has increased in 11 EU countries, most notably in Cyprus, Spain and Italy.
• The number has declined in 14 countries, especially in Bulgaria, Lithuania, Romania and Greece.

The number of adults with disabilities in residential institutions increased by 29% (from 709,682 to 916,385).

• The number of people with disabilities in residential institutions increased in 13 EU countries. The percentage increases were particularly pronounced – exceeding 50% – in France, Poland, Malta and Portugal.
• The number of people with disabilities declined in 11 countries, most notably in Finland, Greece, Estonia and Hungary.

The number of older adults in institutions increased by 11% (from 2,355,292 to 2,609,193).

• The number of people aged 65 and over in residential institutions increased in 19 EU countries, especially in Estonia, Greece, Lithuania and Portugal.
• A decline in the older population in residential care was in 7 countries, especially in Netherlands.

Hungary failed to provide adequate care and prevent death in institution – court decision

The European Court of Human Rights decided a case about the death of a woman with intellectual disability who lived in a state-run institution in Hungary.

The woman, identified as T.J. in the case, was badly treated and neglected in the institution (including being tied to her bad), suffered many injuries. T.J. died on 25 August 2018 from pneumonia: The suit argued that her death was the result of of long-term neglect and inadequate care in the institution.

The Court decided that the Hungarian state violated both Article 2 (the right to life) and Article 34 (right of individual petition) of the European Convention on Human Rights (ECHR).

The Court decided that the Hungarian state failed to protect T.J.’s right to life:

• Failure to Provide Adequate Care: Hungary had not provided the necessary medical and therapeutic care to prevent T.J.’s health from deteriorating. Despite her evident vulnerability, T.J. was subjected to continuous physical restraints, often tied to her bed, and did not receive proper nutritional or medical support. The social care home was understaffed, and there was inadequate supervision, which led to poor overall care and increased risks to residents’ health. The domestic authorities were fully aware of the poor conditions in the facility, as several reports from the Ministry of Human Resources and the Hungarian Commissioner for Fundamental Rights had highlighted the inhuman and degrading treatment within the institution.
• Failure to Prevent Death: As a resident of a state-run institution, T.J. was under the exclusive control of the State, which had a duty to ensure her safety and well-being. T.J.’s vulnerability as a person with a severe intellectual disability made her dependent on the state for all aspects of her care. Despite clear signs of neglect, including severe malnourishment and repeated injuries, the authorities failed to take any meaningful steps to protect her life. The long-term neglect T.J. experienced, coupled with inadequate medical attention, led to her contracting pneumonia and ultimately resulted in her death. The Court found that the state had failed to prevent the foreseeable risk to her life.

Read more about the decision here.

T.J.’s is far from being the only case of neglect and abuse in institutions. There are many publically documented cases, several ending in death. There will be many times more case we will never hear about. More than 750,000 people with intellectual disabilities are segregated in large “care” institutions.

New Zealand apology for abuse in institutions

New Zealand’s Prime Minister Christopher Luxon has formally apologised to victims of abuse in care homes, following an inquiry into one of the country’s biggest abuse scandals.

The apology, delivered in parliament, comes after a report found that 200,000 children and adults had suffered abuse while in state and faith-based care between 1950 and 2019.

“It was horrific. It was heartbreaking. It was wrong. And it should never have happened,” Luxon said. “For many of you it changed the course of your life, and for that, the government must take responsibility.”