‘Better Together’: achieving a global professional network for childhood disability

While considerable transformation has occurred in high-income countries (HICs) over the last 50 years in our understanding and approach to childhood disability, enormous disparities exist at a global level. The progress in HICs has mainly been driven by parents with support from professionals. Additionally, three associations, the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM), the European Academy of Child Disability (EACD), and the Australasian Academy of Cerebral Palsy and Developmental Medicine (AusACPDM) along with this journal have been instrumental in fostering these advances. Yet, many of the world’s disabled children still face stigma and are not given access to basic education and health care, much less specialized support for their additional needs (www.unicef.org/media/84886/file/SOWC-2013.pdf). As the 3rd International Alliance of Academies of Childhood Disabilities (IAACD) Conference approaches, hosted by the AusACPDM in March 2022 (www.bettertogether2022.org), and a newly elected Executive Committee assumes leadership, we the Founding Members of IAACD have been invited to provide a brief background and history of its establishment. These three academies had separately worked to engage the global professional community with reduced membership fees, sponsored meeting attendance, access to best practice guidelines, and regional workshops. However, this approach was insufficient at a larger scale and failed to stimulate the development of regional professional capacity for advancing knowledge and services for children with disabilities. In September 2013, we organized an international conference held at the Sea of Azov which focused on disseminating evidence-based practices to lower resource settings. Here, the concept of a global professional network based on an alliance of regional academies was formulated. We approached the AACPDM, EACD, and AusACPDM, with all enthusiastically supporting the proposal. A memorandum of understanding between them was drafted in January 2014 in Washington, DC and officially signed in July 2014 in Vienna with the vision of ‘improving the health and well-being of children, youth and adults with childhood-onset disabilities around the globe’ through ‘enhancing local multidisciplinary professional capacity and expertise through an international collaboration between academies.’ A Steering Group was established to develop the governance and management structure of the IAACD; several committees were created to provide educational resources, support best clinical practices, and facilitate establishment and inclusion of new member academies. The Constitution was signed in Montreal in 2017. The Governing Council was established in September 2021 with delegates from all member academies and the first Executive Committee elected, thus positioning the IAACD on a solid foundation for growth. As a foundational principle, the key to greater impact is through the power of regional academies that build professional capacity and interdisciplinary strength, engage with families and parent organizations, and influence governments and other stakeholders. Recognizing the challenges for academies in low- and middle-income countries (LMICs) where capacity is very limited, the Membership Committee has developed processes to mentor the development of aspiring associations and to help them achieve the standards set by IAACD. These include registered non-profit status, an accountable governance structure, respect for human rights and ethical practices, multi-professional membership with equality among members, and commitment to evidence-based education and training. The IAACD now has welcomed member academies from Mexico, India, China, Southern Africa, Sri Lanka, and Eastern Africa for a total of nine full members with provisional members from Latin America and the Republic of Korea. One of the important achievements of the IAACD has been the work of the Global Professional Education Committee. It initiated a collaboration with CanChild establishing the Knowledge Hub1 on its website as an extensive online resource (www.iaacd.net). It conducted workshops in member academy meetings in priority areas, and initiated networking support for professionals around the world as children’s services were being impacted by the COVID-19 pandemic. As one example of strategic efforts to partner with other major global organizations, the Best Practice Committee collaborated with the World Health Organization’s Rehabilitation 2030 initiative in the development of a global Package of Interventions for Rehabilitation in cerebral palsy that is now under review by external experts.2, 3 Existing practice guidelines have largely been established within HICs, and member academies are keen to adapt, translate, and disseminate these for implementation in each unique context. The Communication Committee spearheaded the Logo Competition and the Finance Committee is charged with identifying new funding sources to support IAACD activities. The newly established Research Committee is working to advance collaborative research opportunities in priority areas of high relevance to LMICs and build local research capacity. The first Triennial International Meeting was held in Stockholm, Sweden in June 2016 as a joint meeting with the International Cerebral Palsy Conference (ICPC) that had previously held four conferences since 2004 (Quebec, Oulu, Sydney, Pisa). The meeting was hosted by the EACD and had more than 1500 participants. A second similarly successful meeting, hosted by the AACPDM, was held in Anaheim, California in September 2019,4 and the third hosted by the AusACPDM in March 2022, was initially planned to be in Melbourne but is now virtual. The Conference Planning Committee developed a process for the selection of future Triennial Conference hosts with all member academies eligible to apply. The competitive bid from the EACD was recently accepted for the 2025 IAACD Conference to be held in Heidelberg, Germany. The global challenge to effectively support disabled children is enormous, and greater collaboration and coordination within the IAACD and with other global efforts is essential to improving the lives of all children, ‘leaving no child behind’.5 The IAACD is pleased to partner with Mac Keith Press to establish two international awards to recognize outstanding contributions to the field of child disability and to innovations in child disability coming from low resource environments. These awards will be an important recognition of specific contributions and draw greater attention to this important global need. People and ideas come and go but it is sustainable structures that ensure progress over the long term. The IAACD, now a professional network connecting six continents, has hopefully achieved the sustainable structure required for the next generation of leaders continuing the work on improving the lives of disabled children through nurturing and support of professionals in their work.

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