EU Agrees on Regulation to Protect the Rights of Adults with Disabilities

The European Parliament and the Council have agreed on a Regulation to protect the rights of adults in cross-border situations, marking an important step for individuals needing support in another EU country. The agreed text incorporates some long-standing demands of the disability rights movement, particularly regarding supported decision-making, legal capacity, confidentiality, and respect for a person's will and preferences. The Regulation aims to establish clear rules for providing assistance to adults in need of support (for example, people with intellectual disabilities, dementia, or Alzheimer's disease) in cross-border situations such as receiving medical care abroad, owning property in another Member State, or moving to another EU country. This makes the law especially important for persons with disabilities and elderly people. The European Commission’s original proposal did not fully comply with the obligations of the UN Convention on the Rights of Persons with Disabilities, as it only envisaged substitute decision-making rather than emphasizing support and autonomy for adults, and it did not reference the rights enshrined in the Convention. During negotiations, advocates called for EU rules to ensure the protection of autonomy, legal capacity, and freedom of choice rather than reinforcing substitute decision-making and segregation. This position was clearly communicated to the Council and Parliament and was affirmed by the UN Committee on the Rights of Persons with Disabilities and the UN Special Rapporteur on the rights of persons with disabilities. As a result, several improvements aligned with these demands were introduced: clear references to support measures for exercising legal capacity and powers of representation granted to adults; definitions of "protection" and "representative" including supported and joint decision-making and authorized persons; grounds for refusal of recognition if the adult was not given a genuine opportunity to be heard; introduction of a European Support and Representation Certificate, which can be requested by the adult themselves or their representative; explicit mention of the UN Convention in the article governing relations with other instruments; exclusion of provisions on national registries, which is considered an important achievement in confidentiality and data protection. These provisions were included based on the joint position of the European Network on Independent Living, Inclusion Europe, Mental Health Europe, the European Autism Council, the Validity Foundation, and the AGE Europe platform. However, the agreement does not fully comply with the UN Convention as it does not prohibit cross-border institutionalization of persons with disabilities: provisions on placement in another state require consideration of the adult's interests and "where possible" their will and preferences, while substitute decision-making remains and can be recognized at the discretion of the receiving states. The next steps include the formal adoption of the agreement before it enters into force. Monitoring of the final phase and promotion of full implementation considering legal capacity, equality, independent living, and confidentiality continue. The Regulation is expected to be published in the Official Journal of the EU in early 2027, followed by direct application in EU countries. Subsequent work will continue on amending national laws towards support rather than substitution and representation. Source: European Disability Forum.