In a ground-breaking judgment today, the European Court of Human Rights (“the Court”) condemned Hungary for failing to protect the lives of institutionalised persons with disabilities. States must effectively investigate the context and conditions in which people in institutions die, the Court also said. The judgment sends a strong message against institutionalisation and guardianship regimes that continue to affect tens of thousands of people with disabilities in Hungary and beyond. As a human rights organisation dedicated to the rights of persons with disabilities, Validity was granted standing to pursue the case. The Court did this in light of the refusal of the state-imposed guardian to take any meaningful steps to address the horrific treatment that resulted in the death of Ms. T.J., a 45-year-old woman with an intellectual disability who was detained in the notorious Topház institution since 1983.

• For an Easy-to-Read summary, click here.
• For a plain language version of the judgement, click here.
• A cikket magyar nyelven itt olvashatja el. / The article is available in Hungarian here.
• View the Press conference here: Press conference on Topház Judgement of ECtHR, 11 October 2024 (youtube.com)

Commenting on the judgment, which comes following seven years of complex legal action in Hungary and before the European Court of Human Rights, Validity Executive Director Steven Allen said:

“In Hungary and across Europe, persons with disabilities continue to face the horrific consequences of being detained in closed institutions and placed under guardianship – condemning them to what has been called ‘civil death’. T.J., similarly to other residents of the institution, found herself under the complete control of the Hungarian authorities, and ultimately a system which failed to recognise her dignity and humanity. Her state-appointed guardian refused to act, and the Hungarian authorities repeatedly attempted to prevent any investigation into the causes and circumstances of her premature death. When they did eventually investigate, they simply determined that T.J.’s death was the result of pneumonia and her ‘disability’. Today, the Court has thoroughly rejected these arguments, and has recognised the crucial role of organisations such as Validity in seeking accountability for the most grave human rights violations faced by persons with disabilities.”

The Court found that Hungary could not escape responsibility because “in practice, she was fully dependent on the institution for her most basic human needs including her place of residence, her medical treatment, her daily activities, and her interaction with the outside world. (…) Ms T.J.’s long-term institutionalisation and her ensuing loss of contact with the outside world necessarily made such dependence even greater.” (para 76).

The case was initiated by Validity in 2017. T.J. lived in the large-scale institution in inhuman conditions, along with over 200 other people with disabilities who were placed in the institution. There, she spent prolonged periods of time tied to her bed or a radiator. When Validity representatives discovered T.J. in the institution during a spring 2017 monitoring visit, they found her to be severely malnourished, heavily medicated and non-responsive. T.J. was tied to a bed with a makeshift restraint, and her muscles showed evidence of atrophy due to long-term lack of movement. Despite all this, the authorities focused their investigation on her immediate cause of death, the pneumonia, which she periodically contracted while in the institution. Validity monitors also noted that T.J. had an open wound on her forehead and a black eye.

Many other residents of the institution, including children with disabilities, were found in similar, life-threatening situations. Nevertheless, and despite Validity’s urgent appeals calling for the victims to be immediately released from the institution and provided with support, none of the responsible authorities took any action. The police closed criminal investigations, the Government fired a director of the care home and handed over the institution to the Hungarian Charitable Service of the Order of Malta to maintain, and the European Commission denied any responsibility – despite clear evidence of EU funding being spent on the institution.

A little over a year later, in 2018, T.J. died.

Šárka Dušková, Validity Litigation Director, explained that the victims of Topház have faced – and continue to face – almost insurmountable barriers to accessing justice.  She explained:

“The fight to vindicate the rights of Topház victims turned into a struggle to access justice at all. As the victims or their family members were unable to complain themselves, Validity brought all the legal challenges on their behalf. The mere attempt to find out the names of Topház victims’ public legal guardians consumed 5 years of litigation, as the state repeatedly refused to provide their names. Four different criminal complaints were dismissed. Numerous international submissions and United Nations Treaty Body recommendations seemingly had no effect. After 7 years of intensive litigation, the only domestic vindication remained a declaratory court judgment in an actio popularis (anti-discrimination) case, which confirmed the human rights violations but provides no redress to victims. Topház has been allowed to operate as it always did.  The new managers continue to refuse access to Validity lawyers.”

The Topház case became an emblematic example of denial of access to justice to institutionalised people with disabilities. At least ten people died in Topház in the one-year period between 2017-2018, while countless others experienced severe ill-treatment and torture, all despite Validity’s intensive efforts to call for accountability. Tens of thousands of other victims remain in institutions in similar conditions across Europe, their stories hidden behind the institutional walls, never brought to light and to justice.

Adél Kegye, the lawyer representing the Validity Foundation in the domestic proceedings, said that the case presents a sad vision of the Hungarian justice system:

“Neither the police nor state bodies in charge of monitoring the Topház took any action against the torture at the institution, which was widely documented by Validity. Instead, they even filed a complaint against the NGO for taking unauthorised photographs. If the police had taken our complaint seriously and investigated the matter fairly, and if the ministry had taken preventive measures, T.J. would still be alive today. Throughout the years of legal proceedings, there has not been a single actor in this case, other than the NGO, that has had the interests of people in the most vulnerable situations at heart. It is tragic that the civil action against the institution, which was launched in 2017, has not yet been concluded. The question is whether this case will finally result in the Government’s reckoning that has been pending since 2017.”

Today’s judgment brings a ray of hope into this grim picture. Throughout the proceedings, the Hungarian government argued that T.J.’s death at the age of 45 years old was a “natural death”. The Court exposes, in reality, that Hungary’s systemic failures shamefully allowed her premature death due to decades of horrible neglect and ill-treatment. In a careful and in-depth analysis of the whole context, the Court condemns the threat to life posed by the institutionalisation in Topház itself. It also criticises the system of guardianship and oversight over the institution that prevented others to help the victims leave the institution or seek justice and redress. And further, it explains how the ensuing investigation, which only focused on the immediate medical cause of death, completely ignored the context in which the death occurred.

While the judgment relates to T.J.’s individual situation, the Court was careful to emphasise that this was a systemic problem, affecting not only T.J., but the public interest in general (para 88 of the judgment). At least ten other people died in Topház under similar circumstances as T.J. during the same time period due to the profound neglect of the state, and there has never been any, effective investigations, let alone redress for the victims. Hundreds and hundreds of other people die in similar institutions, shielded away from the public eye, all across Europe. Indeed, while the Court’s judgment is groundbreaking, the story it tells is far from unique.

Sándor Gurbai, Validity’s Impact Manager said:

“A country’s decision-makers and leaders can be judged by the way they treat their citizens, who can only live a dignified life and exercise their rights with meaningful and appropriate support. A similar quote is attributed to Mahatma Gandhi. T.J.’s case shows that persons with disabilities who are institutionalised are not a priority for state actors. By depriving her right to live in the community and her legal capacity, T.J. was disenfranchised in all aspects of her life in the institution, and even the circumstances of her death were not investigated. In this judgment, the Strasbourg Court condemned this practice.”

The Validity Foundation continues to identify similar violations across Europe every day. Simona Florescu, Validity’s Litigation Manager said:

“Validity is one of the few organisations in the world litigating the rights of victims with disabilities who have been locked in institutions and deprived of their legal capacity. Throughout the years we have noticed governments make cosmetic changes, such as carrying out renovation works or opening small group homes on the same premises as those big institutions where T.J. died. In our work, we see that persons with disabilities are still ill-treated with impunity in small group homes, they continue to die at the hands of their alleged caregivers. This is happening while states pay lip service to international judgments while refusing to engage in meaningful reforms which would ensure that persons with disabilities can exercise their rights.”

Validity has submitted one other application to the ECtHR against Bulgaria in a case where children with disabilities have been tortured by the staff of a small group home. Validity is also conducting litigation in other similar cases in Czechia and Slovenia. All of these instances confirm that violence and abuse are inherent in the institutional culture.

Validity will continue to work on these cases both by bringing them to court and by ensuring that they are properly implemented at national level. Validity calls on the Council of Europe to make that its supervision of the implementation of the judgment is carried out in the spirit of the rights of persons with disabilities, as laid down in the UN Convention on the Rights of Persons with Disabilities.