Enforcing the rights of persons with childhood‐onset disabilities: An international statement

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), adopted in 2006 and ratified by 192 UN Member States and the European Union, is a vital framework for advancing disability rights and inclusion (https://www.un.org/disabilities/documents/convention/convoptprot-e.pdf). It outlines comprehensive entitlements for full societal participation and serves both as a vision for equity and a tool for holding governments accountable. However, its implementation remains inconsistent or lacking. In June 2025, the joint congress of the European Academy of Childhood-onset Disability (EACD) and the International Alliance of Academies of Childhood Disability (IAACD) convened in Heidelberg, Germany. The organizers wanted to spotlight the perspective of persons with lived experience of childhood-onset disability. An international group of persons with disabilities, family members, and experts was formed to analyse the implementation of the UNCRPD. Perspectives from 21 nations across five continents were gathered, reflecting diverse socioeconomic and cultural contexts, forming the basis for a statement on the participation and inclusion in everyday life of persons with childhood-onset disabilities around the world (https://forms.gle/W8LtujqLURSHCqPV9). The members of the group systematically analysed the implementation of all 29 substantive Articles of the Convention in their respective countries, then synthesized their findings in a 60-page study. Conducted collaboratively, this offers a global snapshot of challenges and best practices in disability rights, data collection, and policy. The analysis provides strong evidence of both barriers and successful solutions, serving as a practical toolkit for advocacy and action. The research identified ‘golden threads’ in terms of shared issues and experiences that emerged across different countries. The commonalities that resonated most consistently were drawn together and interwoven to form a cohesive tapestry of knowledge and recommendations. Although the ‘golden threads’ appear across all experiences, their impact varies with socio-economic and cultural contexts. From this process emerged six policy recommendations on how to ensure that the rights enshrined in the UN Convention are actually implemented. These recommendations are addressed to governments, policymakers, researchers, and professionals, as well as individuals with disabilities and their families, under the following headings. (1) Enhance economic and social protection, recognizing that a fair opportunity to participate in the economy and society is key to an independent life. (2) Promote robust healthcare services across the life course, from early identification and intervention to adulthood and old age. (3) Ensure full opportunity for inclusion and belonging in education, including training on disability awareness for all professionals in the sector. (4) Strengthen legal protections and monitoring to ensure that the rights and obligations already guaranteed on paper are actually enforced in practice. (5) Improve public accessibility, including in rural areas, as the fulfilment of so many rights is dependent on access to the built environment. (6) Establish coordinated disability data collection because ‘you can't manage what you can't measure’. The group's shared aim is to foster belonging, inclusion, and well-being for all children, young people, and families, including those with disabilities. The challenge lies in translating awareness into meaningful and sustained action. Once the initial interest wanes, efforts often fail to translate into long-term systemic changes or concrete results for persons with disabilities. This snapshot of the current experiences of people with lived experience of disability highlights the urgent need for stronger national accountability, better disability data, and inclusive policy enforcement. This depends on each actor doing their part to improve the system as a whole. Achieving full rights and opportunities requires collaboration among governments, civil society, international partners, and persons with lived experience to remove barriers and build a more equitable future for all. The group was convened by Professor Rainer Blank (Germany) and co-chaired by John Coughlan (Luxembourg) and Deirdre Fitzgerald (Ireland). The other members were Isabel de Antuñano (Mexico), Rafael Bonfim (Brazil), Daniel Clay (New Zealand), Ila Eckhoff (USA), Amy Hogan (New Zealand), Hao Hu (China), Maria del Consuelo Ibarra Rodriguez (Mexico), Adetokunbo Johnson (Nigeria/UK), Agnes Kojc (Slovenia), Emma Livingstone (UK), Na Li (China), Bente Maimann (Denmark), Sushil Man Singh Pradhan (Nepal), Teresa Mano da Costa (Portugal), Rachel Martens (Canada), Sylvia Mochabo (Kenya), Chaeli Mycroft (South Africa), Jeanne Nicklas-Faust (Germany), Nonyelum Nweke (Nigeria), Ezgi Özalp (Turkey), Roopa Srinivasan (India), Evelyn Tanas (Egypt), Selamenesh Tsige (Ethiopia/Canada), and Sabine Vinçon (Germany). The group received no funding for its work. A grant from Cerebral Palsy Foundation enabled members of the group to participate in an in-person workshop on the eve of the Heidelberg congress. The author declares no conflicts of interest. Not required.

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