Advancing Care for Individuals with Intellectual and Developmental Disabilities (IDD)
By: Musunuri, S., Graves, L., Shah, P. B., M.,Kind-Rubin, Marsh, T. N., Waller, S., Somlyay, J., Nandil M. I., Yoon, M.N. Torres, N., Hansen-Turton, T., Hayden, E., Spreat, S., Mishra, A.
Woods System of Care
The Network Towards Unity for Health
Abstract
Objective: To conduct research, identify gaps in current care, and highlight key opportunities for
improving primary care for individuals with Intellectual and Developmental Disabilities (IDD),
ensuring that care is tailored to meet the unique needs of this population.
Methods: A literature review was conducted to examine and analyze existing global clinical
guidelines for the primary care of individuals with IDD. In addition, monthly global consultative
meetings were organized to promote collaboration among healthcare professionals and experts
specializing in IDD and related areas of care. These collaborative sessions focused on
synthesizing recent empirical research, expert insights, and firsthand knowledge. To facilitate the
identification of actionable opportunities for improvement, a system based on the 2018 Canadian
Consensus Guidelines for the Primary Care of Adults with Intellectual and Developmental
Disabilitiesi was adopted.
Insights: The gaps in global clinical guidelines and resources for IDD highlight significant
challenges and opportunities for improvement. These include a lack of tailored frameworks and
tools, resulting in fragmented and inconsistent care across regions. The absence of centralized
platforms for accessible guidelines leaves caregivers and providers struggling to find up-to-date
practices. Pervasive stigma, low awareness, and cultural insensitivity contribute to delayed
diagnoses and social isolation, especially in low-income regions. Additionally, the lack of
intersectionality in guidelines, limited involvement of individuals with IDD and their families in
policymaking, and insufficient engagement of other interested parties such as local non-profit
organizations, advocacy groups, and community leaders, exacerbate disparities both in urban and
rural areas. Insufficient training and support for caregivers further hinder quality care.
Addressing these gaps through inclusive, culturally sensitive models and tailored policy
innovations designed to align with the unique social, economic, and cultural contexts of each
country can significantly improve care for individuals with IDD worldwide.
Conclusion: This paper emphasizes the need for more adaptable care models to address the
diverse and complex needs of individuals with IDD. It underscores the importance of policy
interventions to address systemic challenges, such as increasing awareness, reducing stigma,
ensuring specialized training for healthcare professionals, and improving access to resources and
support services for individuals with IDD. By advocating comprehensive clinical guidelines and
tailored policy reforms, this paper aims to improve care and support for individuals with IDD
globally, ensuring they receive the necessary resources to thrive.