Promoting Decision Making Capabilities in the Healthcare of Adults with Intellectual and Developmental Disabilities: Ethics and Practice

Sullivan, William F.; Heng, John; Bach, Michael

doi:10.1007/978-3-030-74675-9_3

Cited by 7 publications

(12 citation statements)

References 25 publications

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“…Almost all persons with IDD are capable, to some extent, of manifesting practical reason. They can and should be supported by other members of the community to do so and to have opportunities to realize and enhance such capability (Sullivan et al, 2021 ).…”

Section: Introductionmentioning

confidence: 99%

Ethics framework and recommendations to support capabilities of people with intellectual and developmental disabilities during pandemics

Sullivan

Björne

Heng

et al. 2022

Policy Practice Intel Disabi

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A growing body of knowledge highlights the negative impact of the COVID‐19 pandemic on the health and well‐being of many people with intellectual and developmental disabilities (IDDs) and their caregivers. The underlying reasons are not only due to biomedical factors but also ethical issues. They stem from longstanding and pervasive structural injustices and negative social attitudes that continue to devalue people with IDD and that underlie certain clinical decisions and frameworks for public‐health policies during this pandemic. Unless these fundamental ethical shortcomings are addressed, pandemic responses will continue to undermine the human rights and well‐being of people with IDD. This paper proposes an ethics framing for policy and practices regarding clinical care and public health based on Martha Nussbaum's approach to Capability Theory. Such a framework can reorient healthcare professionals and healthcare systems to support the capabilities of people with IDD to protect, recover, and promote health and well‐being. It could be applied during this pandemic and in planning for future pandemics. The paper presents some practical recommendations that follow from applying this framework.

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Section: Introductionmentioning

confidence: 99%

Ethics framework and recommendations to support capabilities of people with intellectual and developmental disabilities during pandemics

Sullivan

Björne

Heng

et al. 2022

Policy Practice Intel Disabi

Self Cite

View full text Add to dashboard Cite

show abstract

“…The aims of this Editorial are to raise awareness of the disparities that exist for people with disabilities (PWD), highlight special considerations in the dermatologic setting, and urge a call to action for dermatologists to strive to deliver equitable care to this population. To supplement this discussion, in the Table we present sample scenarios with proposed best practices.…”

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confidence: 99%

“…It is well documented that PWD are more likely to experience difficulties in accessing preventative care, including mammograms or Papanicolaou tests, and thus may have more advanced disease at the time of detection . While further research is needed in dermatology to precisely capture practice gaps for PWD, these data can be intuitively extrapolated to identify dermatology-specific barriers to care.…”

mentioning

confidence: 99%

“…A previsit screening question by a staff member can determine a patient’s unique needs prior to the appointment. An example screening question is, “Do you have any physical, cognitive, or other special needs that we may accommodate for during your visit?” If a disability is identified, additional appointment time could be allocated to ensure that patients can make their concerns understood …”

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confidence: 99%

“…During the visit, health care professionals should engage with both the patient and caregivers to ask about home environment, care team, and barriers to care. Simplified medication routines with clear written instructions should be provided when formulating a treatment plan . When transportation and accessibility impede follow-up, one way to broaden our reach is via telehealth.…”

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confidence: 99%

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Achieving Equitable Care for People With Disabilities

2020

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Twenty-two percent of adults in the United States report living with a disability. 1,2 Since the passage of the Americans with Disabilities Act (ADA) in 1990, there have been crucial improvements in environmental and public service accessibility. 3 However, because of persistent socioeconomic inequalities, this population continues to receive suboptimal health care. 3 The aims of this Editorial are to raise awareness of the disparities that exist for people with disabilities (PWD), highlight

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Policy and practice issues in making an advance care directive with decision making support: A case study

Sheahan

Bigby

Douglas

2023

Aust J Social Issues

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The Medical Treatment Planning and Decisions Act 2016 (Vic) is a step toward law reform to implement supported decision making and the rights of people with disabilities enshrined in the United Nations Convention on the Rights of Persons with Disabilities. The Act includes provisions to enable a person, who might otherwise be assessed as being without decision making capacity, to make an advance care directive with support. This case study explores the implementation of the Act through the experiences of a person with intellectual disability, their medical practitioner and supporter in making an advance care directive. The findings identify shortcomings of the Act that effectively exclude people with severe intellectual disabilities from supported decision making. They illustrate the need for greater institutional support for supported decision making and educational strategies for medical practitioners if the potential of the Act is to be realised for people with intellectual disabilities. Finally, the findings indicate the relevance of the La Trobe Support for Decision Making Practice Framework as a guide to decision support in this context.

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Promoting Decision Making Capabilities in the Healthcare of Adults with Intellectual and Developmental Disabilities: Ethics and Practice

Cited by 7 publications

References 25 publications

Ethics framework and recommendations to support capabilities of people with intellectual and developmental disabilities during pandemics

Ethics framework and recommendations to support capabilities of people with intellectual and developmental disabilities during pandemics

Achieving Equitable Care for People With Disabilities

Policy and practice issues in making an advance care directive with decision making support: A case study

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