Discrimination and Other Barriers to Accessing Health Care: Perspectives of Patients with Mild and Moderate Intellectual Disability and Their Carers

Abstract

BackgroundPeople with intellectual disability have a higher prevalence of physical health problems but often experience disparities in accessing health care. In England, a number of legislative changes, policies and recommendations have been introduced to improve health care access for this population. The aim of this qualitative study was to examine the extent to which patients with intellectual disability and their carers experience discrimination or other barriers in accessing health services, and whether health care experiences have improved over the last decade years.Method and Main FindingsTwenty nine participants (14 patient and carer dyads, and one carer) took part in semi-structured interviews. The interviews were audio-taped and transcribed and analysed using thematic analysis. Eight themes were identified. Half the participants thought that the patient had been treated unfairly or had been discriminated against by health services. There were accounts of negative staff attitudes and behaviour, and failure of services to make reasonable adjustments. Other barriers included problems with communication, and accessing services because of lack of knowledge of local services and service eligibility issues; lack of support and involvement of carers; and language problems in participants from minority ethnic groups. Most participants were able to report at least one example of good practice in health care provision. Suggestions for improving services are presented.ConclusionDespite some improvements to services as a result of health policies and recommendations, more progress is required to ensure that health services make reasonable adjustments to reduce both direct and indirect discrimination of people with intellectual disability.

An examination of perceptions of individuals with an intellectual disability, with and without co‐morbid schizophrenia: effects of labels on stigma

“…; Proctor & Azar ; Ali et al . ). However, it is frequently noted in the literature those with ID have received minimal attention and consideration compared to other diagnoses (Corrigan ; Ditchman et al .…”

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

“…People with intellectual developmental disorders have a high prevalence rate of mental disorders, and they need more specialized mental health care. to and use of health and health-related services on the same basis as other people has been called into question by various studies(Ali et al, 2013;Tuffrey-Wijne et al, 2014), which argue that people with intellectual developmental disorders suffer from more health problems than the general population, they do not have adequate access to health care, and they tend to use emergency services more than outpatient or specialised services. to and use of health and health-related services on the same basis as other people has been called into question by various studies(Ali et al, 2013;Tuffrey-Wijne et al, 2014), which argue that people with intellectual developmental disorders suffer from more health problems than the general population, they do not have adequate access to health care, and they tend to use emergency services more than outpatient or specialised services.…”

Giving Context to the Physician Competency Reference Set: Adapting to the Needs of Diverse Populations

“…Although the qualifiers presented in this Article are specific to training physicians to become competent in caring for individuals who are LGBT, GNC, and/or born with DSD, the underlying process for developing these qualifiers can be applied in other contexts. Inequities in health care and concomitant health disparities experienced by individuals with diverse backgrounds including race, ethnicity, religion, and different language speakers are well described in the literature, 10 as are the bias and discrimination in health care experienced by people based on physical, intellectual, and/or sensory disabilities 38 ; mental health 12 ; weight 13 ; and pain perception. 39 Establishing medical training programs that produce health care providers with demonstrated competence to care for patients with all identities, backgrounds, and abilities is a crucial step toward achieving health equity.…”