Describing healthcare systems for people with intellectual and developmental disabilities: Global chances and challenges

Abstract

This Special Edition was conducted under the auspices of the Health Issues and Comparative Policy and Practice Special Interest Research Groups (SIRGs) of the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD). The aim of this Special Edition is to profile how the health systems in different global jurisdictions respond, if at all, to the health needs of people with intellectual and developmental disabilities. The rationale for the Special Edition is the dearth of information on health systems for people with intellectual and developmental disabilities, a noticeable omission given the substantial evidence of health inequalities experienced by this population. In 2006, Professor Gloria Krahn et al. (2006) coined the term “cascade of disparity” to describe these inequalities, which were evidenced at all levels of healthcare, from health promotion through to health outcomes. These inequalities occurred despite the protections of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which to date has been signed by 164 countries worldwide (United Nations, 2006). Article 25 of UNCRPD specifically protects the right of persons with disabilities to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. Most recently, health inequalities were starkly illustrated during the COVID-19 pandemic when people with intellectual and developmental disabilities experienced higher mortality and morbidity as well as discriminatory practices in treatment access (Cuypers et al., 2023; Jeste et al., 2020; Koks-Leensen et al., 2023; Maulana et al., 2021; Rosencrans et al., 2021; Tenenbaum et al., 2021). These COVID-19 experiences were the impetus for this Special Edition. The country profiles presented here address a key gap in the existing knowledge of how different countries address the healthcare needs of people with intellectual and developmental disabilities and provide an opportunity to share good practices that may be adopted elsewhere.

Given that this Special Edition does not seek conventional research papers, but rather an overview of the structure of health systems, authors were guided from the outset on the type of submission required. As a first step, a pre-submission process was implemented to garner expressions of interest from prospective authors. In the case of multiple pre-submissions from one country, the editorial team facilitated collaborative development of a joint paper.

To encapsulate the pivotal elements deemed necessary by the editorial team, a distinct template was employed, contrasting the conventional structure of scientific papers. The template included the following sections: (1) Abstract; (2) Introduction to the general healthcare system within the participating country; (3) The organization of healthcare for people with intellectual and developmental disabilities; (4) Recent publications from the participating country, both popular or scientific that may be helpful for international readers to understand the national focus of research; and (5) A discussion reflecting on best practices and key challenges. This template aimed to promote similarity across submissions from different jurisdictions. Throughout the process of manuscript preparation, authors were invited to attend a number of Zoom meetings, which provided not only an opportunity to seek guidance and support on their work, but more broadly established an international network of researchers with an interest in this area. This network was an unintended yet welcomed consequence of the Special Edition.

The deviation from the conventional structure of research papers prompted an adaptation of the review process where every country profile was peer-reviewed by at least two local/national reviewers with expertise on the policies and delivery of healthcare (for people with intellectual and developmental disabilities) within the specific country. These reviewers were specifically tasked with checking if the provided national information was accurate and comprehensive in scope. In addition to these local/national reviewers, an editorial peer-review was performed to assure overall quality, adherence to the template, and clarity of the content for international readers.

This Special Edition describing global healthcare systems for people with intellectual and developmental disabilities brings together 13 country profiles. These papers describe how, if at all, these healthcare systems have developed to respond to the healthcare needs of people with intellectual and developmental disabilities. The profiles highlight not only the challenges faced by this population in accessing healthcare across 13 different countries, but also describe where national practices have been developed to specifically ameliorate disparities in healthcare specifically for people with intellectual and developmental disabilities. A qualitative synthesis process was conducted to provide a collective overview of these papers, which aimed to obtain a deeper understanding of underlying trends in healthcare for people with intellectual and developmental disabilities across countries. This synthesis is presented at the end of this Special Edition.

Notwithstanding the benefits of taking a global perspective on issues of relevance for people with intellectual and developmental disabilities, this Special Edition, via a series of online meetings, opened a global conversation among interested parties, which offered the opportunity for participants to learn from models of healthcare in other jurisdictions and consider shared learned lessons and key challenges. As editors, we hope that this exchange among a global network of researchers may develop into an accelerator of research for this vulnerable and disadvantaged population.

The authors have no conflicts of interest to declare.

Not applicable.