2021Internal Medicine JournalOpen access

Palliative care for adults with intellectual disability

Robyn A. Wallace

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Abstract

Contemporary disability principles and values suggest that adults with intellectual disability should be able to access and participate in any mainstream service rather than having a separate service for them. In the case of healthcare services, achievement of optimal access to and participation in healthcare by adults with intellectual disability requires the presence of both adequate disability supports for the person and reasonable adjustments to generic health systems to enable a person-centred approach to care. Development of an interface between people with lived experience of intellectual disability, disability and health sectors help clarify the required nature of disability supports and types of adjustments to mainstream health services. The article describes a case study of an adult with intellectual disability with a serious illness warranting palliative care, and focusses on the reasonable adjustments to mainstream core palliative care principles for adults with intellectual disability.

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What this paper is about

Contemporary disability principles and values suggest that adults with intellectual disability should be able to access and participate in any mainstream service rather than having a separate service for them. In the case of healthcare services, achievement of optimal access to and participation in healthcare by adults with intellectual disability requires the presence of both adequate disability supports for the person and reasonable adjustments to generic health systems to enable a person-centred approach to care. Development of an interface between people with lived experience of intellectual disability, disability and health sectors help clarify the required nature of disability supports and types of adjustments to mainstream health services. The article describes a case study of an adult with intellectual disability with a serious illness warranting palliative care, and focusses on the reasonable adjustments to mainstream core palliative care principles for adults with intellectual disability.

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Available abstract

Contemporary disability principles and values suggest that adults with intellectual disability should be able to access and participate in any mainstream service rather than having a separate service for them. In the case of healthcare services, achievement of optimal access to and participation in healthcare by adults with intellectual disability requires the presence of both adequate disability supports for the person and reasonable adjustments to generic health systems to enable a person-centred approach to care. Development of an interface between people with lived experience of intellectual disability, disability and health sectors help clarify the required nature of disability supports and types of adjustments to mainstream health services. The article describes a case study of an adult with intellectual disability with a serious illness warranting palliative care, and focusses on the reasonable adjustments to mainstream core palliative care principles for adults with intellectual disability.

Key concepts: Intellectual disability, Mainstream, Medical model of disability, Medicine, Palliative care, Health care, Service (business), Nursing

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