Response

Facility/care readiness

The unique vulnerability of disabled people in group homes and residential facilities, psychiatric institutions, nursing homes, and prisons should also be considered. The limited and inconsistent guidelines in such facilities regarding visitations, facilitation of communication and decisions, staff screening, entry back into shared-care facilities after a hospital visit, PPE and readiness to respond appropriately to a pandemic or crisis is a result of systemic issues that need to be addressed.

Future preparedness efforts must focus on increased funding to residential facilities and the development of policies to mitigate risks for staff and residents. These include ensuring residents have appropriate access to testing, planning for ways to separate infected or at-risk patients from other residents, providing PPE for directcare staff, and improving training and support to ensure the safe and high-quality implementation of emergency procedures.

Data collection

Currently, there is little data available about disease, recovery, and mortality rates from COVID-19 for disabled people. However, we know that, in 2013, 29 percent of disabled people surveyed rated their health fair or poor (as opposed to good, very good or excellent) compared with only 4 percent of non-disabled people. Disabled people were far less likely to say they had very good or excellent health – only 10 percent said their health was excellent compared with 33 percent of non-disabled people.392

Collecting and analysing local and national data that includes documented underlying conditions and disability status and aggregated data from treatment decisions will enable the development of equitable strategies for health care allocation in future health crises.

More information can be found in the section Data, privacy and digital technologies in a pandemic above.

Health workers with disabilities

Quite often people forget that disabled people are not always patients: they may also be providers. There are many doctors and nurses with disabilities who are working at the frontline in this COVID-19 pandemic. The principle of manaakitanga should be freely offered to support these workers. This may mean considering how a pandemic changes or shapes accessibility issues, understanding, and acknowledging these workers’ achievements and contribution and making sure they are not ‘invisible’ in our collective stories or reflections on the pandemic.

Response

Any response must recognise the fundamental role of legislation and regulation in supporting disabled people and communities during pandemics/emergencies. These include, but are not limited to, the Human Rights Act 1993, Privacy Act 2020, Code of Health and Disability Services Consumers’ Rights, as well as statutory bodies such as the Ombudsman, the Health and Disability Commission and the Human Rights Commission in investigating and monitoring government pandemic responses.

Access to communication and medical information

Communicating the risks, measures of prevention and treatment options before, during and after a crisis are key to slowing down a pandemic and improving health outcomes. Disabled people should not be kept underinformed about the pandemic and its ramifications. Important advice must be made available in plain language; multiple, accessible formats (such as audio and large print) and in multiple languages.

For example, information conveyed through charts and graphs is inaccessible for blind and low-vision individuals and may be incomprehensible for people with intellectual disability (and others) if not provided in plain language. Similarly, news briefings conducted without captioning or qualified sign language interpreters precludes deaf and hard-of-hearing individuals from being well informed.

Identifying and distributing short and long-term remedies

Treatment and vaccination options need to be transparent, reasonable, and believable to gain the population’s trust. Fair allocation is also necessary. Distributive justice and the societal value of protecting vulnerable populations requires that, after protecting front-line health care service providers, those who are most vulnerable come next. Although disability status alone would not qualify, it is important to note that the disability population suffer higher rates of chronic medical conditions (for example, diabetes and cardiovascular disease), which are associated with worse outcomes from COVID-19.

The continuation of vaccination roll-outs are key for both the response and recovery phases of a public health emergency. It is important that information is provided in a way that reaches vulnerable groups and works for them, for example, consolidating information specifically for disabled people and those who have underlying health conditions or those with low tolerance to stimulation or crowds; supporting decision-making; providing a list of accessible vaccination centres, transport, and information in alternative formats.393

In the context of COVID-19, disabled people are at greater clinical risk of COVID-19 harm and impacts, being more exposed to transmission risk, more sensitive to COVID-19 infection if they have secondary health conditions and less able to anticipate, cope with and recover from the effects of infection. Further, impairments (for example, mobility, intellectual, communication) can create barriers to protection against COVID-19 risk and exposure (for example, handwashing, difficulty in physical distancing without support needs).

Rationing

Rationing requires difficult decisions about the allocation of scarce resources under conditions of extreme time pressure and limited data.

A key consideration is how equality and non-discrimination on the basis of disability are to be interpreted in rationing decisions. There is a risk that medical professionals may unwittingly rate the quality of life of disabled people, and such biases can have a negative impact on medical decisions.

Rationing based on prognosis for survival, a reasonable criterion in a pandemic, and the potential for subjective quality-of-life judgments may similarly enter rationing decisions and result in discriminatory outcomes. It is unethical to use stereotypes or misconceptions about an individual’s disability to ration care – a patient’s ‘worth’ should not be based on the presence or absence of disabilities. Choices by establishments around considering an individual for life‑saving treatment ought to be founded on an individualised evaluation of the patient, using the best available clinical evidence, rather than on quality-adjusted life years that can fundamentally underestimate the value of a person’s existence with a disability.