Healthcare for Persons with Intellectual and Developmental Disability in the Community

Abstract

Introduction: While there has been impressive progress in creating and improving community healthcare delivery systems that support people with intellectual and developmental disabilities (IDD), there is much more that can and should be done.Methods: This paper offers a review of healthcare delivery concepts on which new models are being developed, while also establishing an historical context. We review the need for creating fully integrated models of healthcare, and at the same time offer practical considerations that range from specific healthcare delivery system components to the need to expand our approach to training healthcare providers. The models and delivery systems, and the areas of needed focus in their development are reviewed to set a starting point for more and greater work going forward.Conclusion: Today, we celebrate longer life spans of people with IDD, increased attention to the benefits of healthcare that is responsive to their needs, and the development of important healthcare delivery systems that are customized to their needs. We also know that the growing body of research on health status offers incentive to continue developing healthcare structures for people with IDD by training healthcare providers about the needs of people with IDD, by establishing systems of care that integrate acute healthcare with long-term services and support, by developing IDD medicine as a specialty, and by building health promotion and wellness resources to provide people with IDD a set of preventative health supports.

Health indicators in intellectual developmental disorders: The key findings of the POMONA‐ESP project

“…In our sample, use of health services was more common among participants with mild and profound intellectual disability. Extensive research has shown the importance of health promotion and prevention activities for people with intellectual developmental disorders, as they can effectively improve health outcomes, promote participation in the patient's own health care and increase this population's access to health services(Ervin, Hennen, Merrick, & Morad, 2014). In Spain, a study found that people with severe and profound levels of intellectual disability used social healthcare services less than those with mild and moderate intellectual disability, although they had more medical and social needs(Verdugo et al, 2016).…”

Presence with purpose: attitudes of people with developmental disability towards health care students

“…Similarly, it is often assumed that the supervising clinician is aware of the individual patient's preferences and is in the practice of obtaining consent to student involvement. It is important to clarify this with any person receiving health care, particularly with individuals who are exceptionally marginalised and often not empowered in making choices about their own health care experiences . A combination of varied communication barriers (expressive or receptive), cognitive capabilities and lack of advocacy can result in the receipt of suboptimal health care.…”

“…It is important to clarify this with any person receiving health care, particularly with individuals who are exceptionally marginalised and often not empowered in making choices about their own health care experiences. 4 A combination of varied communication barriers (expressive or receptive), cognitive capabilities and lack of advocacy can result in the receipt of suboptimal health care. Future health care providers can be alert to the needs of patients with DD and address them in the following ways, based on recommendations derived from our focus groups.…”

“…In this population affected by DD, patient variables include cognitive, communication and adaptive functioning limitations, and clinician variables include limited time and training. Individuals with DD are well known to have poorer health outcomes that are related to unrecognised, under‐treated or untreated conditions . It is therefore important to provide health care learners with opportunities to recognise and adapt to patient‐related obstacles, as well as to develop the professional competencies necessary to overcome clinician‐related barriers.…”

Chronic illness, disease and impairment: living longer, living well

“…Many health care systems around the world are still struggling with these issues, and various models have emerged [1,2,4].…”