Professionals and individuals with lived experience of childhood-onset disabilities: Developing networks to improve care

Abstract

Many countries of the world have made enormous efforts to care for individuals with disabilities, to integrate them into society, to share knowledge, and to build global networks. The Convention on the Rights of Persons with Disabilities (CRPD) has meanwhile become a reference standard for social participation, policy, and politics.

Ecological and economic considerations may challenge these efforts. The UN Committee on the Rights of Persons with Disabilities has found that austerity measures can cause gross and systemic violations of disabled people's human rights. A society is only as strong as how it cares for its most disadvantaged members; we have to advocate and emphasize that society should serve them, learn from them, and treat them as individuals with equal rights and not consider them only as cost factors. We must advocate for a society that fosters networking beyond boundaries. Only by practicing a culture of listening and sharing, by networking, will we understand that ultimately we need each other. Experiencing and strengthening this bond every day also contributes to our own well-being. Only by networking (in the true sense of the word), can we experience that the whole of the world is much greater than the sum of our nations and ourselves.

It is encouraging that interest groups are being established in many countries and that scientific academies like the International Alliance of Academies of Childhood Disability (IAACD) and European Academy of Childhood-onset Disability (EACD) are growing networks of professionals and users, including individuals with lived experience of childhood-onset disability. Networking between different professionals, interdisciplinary research, and consumer-led research and practice has become a worldwide standard. Goal-directed, family-centered research and clinical work ensure effective and efficient care, recognizing individuals with disabilities as partners. It is the implementation of human rights.

Networking starts with searching and finding those who need us, and then to listen, to share, to discuss with them, and to finally include them in all our activities. The conditions to assess, care, and treat individuals with disabilities may differ between Europe and other regions, but the needs and wishes are often the same. The degree to which these needs are met are different in each society. There may be some correlation with income; however, there is also a correlation with each culture's attitude. Referring to the motto of the 2024 EACD conference in Bruges (‘Composing a new symphony’), we might say that in some regions and areas of the world there are symphonies which are already part of the repertoire; whereas in other places, orchestras are still being formed to play a symphony.

In preparation of the 4th joint IAACD–EACD conference, which will be held 24th to 28th June in Heidelberg, we started early to develop networks. Interviews with more than 160 people across 17 countries of all regions of the IAACD were conducted and are presented weekly as ‘International Voices of Childhood-onset Disabilities’ on our website (https://eacd-iaacd2025.org/). In total, 130 multiple speaker formats mainly from international research networks and around 1000 free papers have been accepted. This will enable more than 1000 presenters from over 70 countries to participate and show their great motivation to share and to build networks. With this meeting we hope to support the international networking of professionals of numerous disciplines and of individuals with lived experiences and their caregivers. Strengthening advocacy, consumer-led research, and clinical knowledge may be a good answer to the current worldwide challenges.