Down Syndrome Ireland outlines concerns on Department of Health COVID-19 guidance

The Department of Health has recently published new guidance on the ‘Ethical Considerations Relating to Critical Care in the context of COVID-19’. Down Syndrome Ireland, along with other groups, immediately looked for clarification and reassurance that people with disabilities will have equal access to critical care should they need it.

The guidance states that all patients with confirmed COVID-19 needing critical care will be assessed and the “presence of comorbidities and frailty” is among the criteria which will be considered when healthcare professionals are deciding whether to admit to a critical care bed.

Responding to the guidance, Down Syndrome Ireland’s Head of Member Services Nicola Hart said:

“These are unprecedented times and the HSE is under extreme pressure. But people with Down syndrome and other disabilities and their families are concerned that the new guidance could result in them not getting equal access to critical care.

“In the absence of a clear working definition or scale, frailty is a subjective term. Having no clear definition of frailty could impact on decision making with regard to people with lifelong disabilities. We know that Down syndrome could be considered a comorbidity, and anyone requiring support for daily living can be potentially classified as frail, depending how this is measured. When faced with more patients than ICU beds, will there be a value judgement, conscious or otherwise, that the life of a person with Down syndrome or another long-term disability is worth less than someone without?”

The charity is calling for the ethical guidelines to explicitly state that perceived frailty or underlying health conditions may not predict response to treatment in groups where the condition is a stable long term physical or intellectual disability and also that children and adults with disabilities, who by definition have underlying health conditions and may be perceived by others as frail, have a right to equality of access to health care.

“People with Down syndrome may need additional support, but they are still valued members of their families and communities and should not be discriminated against on the basis of their disability. In addition to the Government commitment to ‘minimise the health, wellbeing and social impact for people who may be at greater risk’, the state has obligations under the UNCRPD to ensure people with disabilities have access to the same quality and standard of healthcare as everyone else.

“This is a particularly difficult time for us all, even more so for anyone falling into a vulnerable group, and families need to hear that the rights of people with disabilities are still being upheld, and that consideration is being given to their individual needs in difficult circumstances,” Ms Hart said.

Down Syndrome Ireland is calling for the Department of Health to update the document to provide people with disabilities and their families reassurance that the human rights of people with disabilities are protected.

“We do know that everyone is doing the best they can, and would like to express our support for everyone working to help people during this unprecedented crisis, and assure our healthcare workers, our front line workers, the National Public Health Emergency Team, the Department of Health and HSE services that their work is very much appreciated,” Ms Hart added. 

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