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On COVID, climate and other public health crises, centre the expertise and needs of people with disability

Introduction by Croakey: As the world faces multiple public health crises, it grows ever more important to disrupt existing power structures and processes that do not privilege the expertise and needs of those communities and individuals who are at greatest risk.

In a recent BMJ article, public policy analyst Pauline Castres (@PaulineCastres) argues that climate change is one of the single biggest threats to the disability community, and yet disabled people have long been ignored and forgotten in climate activism and policy.

“If we are to create a just transition to a greener economy that is fair to everyone and tackle the underlying problems that have caused and driven climate change, we need to put disabled people – a diverse, resourceful, and knowledgeable group of people – at the heart of the climate movement,” Castres writes.

“We must not simply focus on tokenistic and time limited representation and mentions, but enable sustainable leadership across all environmental platforms, networks, and policy frameworks.”

Further, Castres writes that: “Designing and implementing scalable solutions to tackle climate change – while also empowering and engaging people, especially the most marginalised, to hold policy makers to account – will require collaboration, creativity, collective resilience, and resourcefulness. And disabled people are experts at these.”

Castres critiques the contested language and framing of “vulnerability”, saying that it “rarely conveys participation, and eventually leads to exclusion”.

“The term has been commonly used in the context of COVID, for example, but did not lead to greater recognition of the voices of those shielding or those who developed LongCOVID. Nor did it help create long term policies centred around those groups.”

Similar concerns about inequitable COVID policies are raised in the article below by Professors Anne Kavanagh, Helen Dickinson and Nancy Baxter. It was first published at The Conversation on 14 October under the headline, ‘Doing away with COVID isolation rules means increased isolation and risks for people with disability’.

These two articles also raise some timely, critical questions for those involved with developing the National Strategy for Climate, Health and Wellbeing, as well as the planned National Centre for Disease Control and Prevention, not to mention academics and others involved in reviewing and addressing Australia’s responses to COVID and other public health concerns.


Anne Kavanagh, Helen Dickinson and Nancy Baxter write:

Mandatory isolation rules for people with COVID end today (14 October). Pandemic leave disaster payments will also cease for all workers except casual workers employed in aged care, disability, hospitals, Indigenous health services and hospitals.

These changes signal the end of most legislated COVID safeguards. Rules to enforce mask-wearing on public transport, vaccination for entry to public spaces, and isolation of close contacts have been dropped by state and territory governments in recent months.

Many places have also discontinued vaccine mandates for workers in sectors such as aged care, disability, and health.

Despite the clear benefits of good indoor ventilation to reduce COVID transmission risk, many schools, workplaces, and public spaces are poorly ventilated.

The withdrawal of active protections plus the failure to ensure safe indoor air puts people with disability at greater risk than the rest of the population. Action is needed to protect this group.

Serious risks

International studies show disabled people are at higher risk of dying from COVID than their age-matched peers. People with intellectual and psychosocial disability (such as schizophrenia, bipolar disorder and social anxiety disorders) are at the highest risk – three to nine times that of the general population.

In England between Jane 2020 and March 2022, 60 percent of people who died from COVID were disabled.

To date, comparable data has still not been reported for Australians with disability. But there is no reason to believe the risk for disabled Australians is any different than overseas.

Some people with disability are clinically vulnerable because they are immunocompromised due to medications for conditions such as for rheumatoid arthritis or multiple sclerosis. This group also has a higher prevalence of conditions like diabetes, cardiovascular and respiratory disease. These are associated with serious disease and death from COVID.

Many disabled Australians also have difficulties accessing healthcare because of physical inaccessibility and lack of knowledge and expertise of health care providers about disability. This means they may not receive anti-viral COVID treatments, even if they are eligible.

Enforced isolation

Many people with disability continue to isolate at home to avoid infection and are effectively shut out of society as online options for participation dry up.

For people who rely on paid support, isolation is not an option. Their workers are still circulating in the community. Some disabled people live and work in congregate environments with other people with disability – settings associated with higher rates of COVID infection and death.

A significant minority of people with disability have not had the recommended COVID vaccinations and boosters.

Almost one quarter of participants in the National Disability Insurance Scheme (NDIS) aged 16 and over have not had three COVID vaccine doses; less than one-third have had four doses. A third of NDIS participants aged 12 to 15 have not had two COVID vaccine doses. The vaccination rates of the 88 percent people with disability who are not on the NDIS are not reported.

Disability support workers we spoke to in 2020 told us they felt forgotten by government without access to personal protective equipment and tailored information about how to protect themselves and people they supported.

Workers we surveyed in 2021 reported higher levels of vaccine hesitancy than the general population and expressed concerns about vaccine safety and efficacy.

Concern about what’s next

Without isolation periods in place, people with disability are deeply concerned about what will happen when new immune-evasive variants of SARS-CoV-2 (the virus that causes COVID) arrive.

Throughout the pandemic, disability advocates and supporters and academics have drawn attention to the risks of COVID for disabled people.

The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability criticised the federal government for its slow initial efforts to protect people with disability during the pandemic and for delays in the vaccination rollout.

Governments around the world have reassured the public COVID is more dangerous for the chronically ill, elderly and disabled. This has the effect of suggesting their/our lives matter less.

Public health measures – or decisions to end them – signal what our society is prepared to do to care for people at risk. Some advocates have labelled the relaxation of COVID protections as ableist, even eugenicist. Others say it will guarantee the societal exclusion of the clinically vulnerable.

With evidence Long COVID can affect one in 20 of those infected, including previously healthy people, the proportion of disabled people in our community will likely swell in coming years.

Protections needed

Strategies to minimise the COVID risk for people with disability should include:

  • concerted government campaigns to increase uptake of third and fourth doses among people with disability
  • continued access to free rapid antigen tests (RATs) for people with disability and support workers
  • advice about ventilation of indoor spaces, particularly in congregate settings with access to air quality monitors and purifiers if needed
  • free access to respirator (P2/N95) masks for use indoors
  • outreach to ensure people with disability who are eligible for antiviral treatment can access it promptly.

Governments need to work with services and workers to make sure they understand the risks to people with disability if they have symptoms of COVID or other respiratory infections.

Workers who test positive for COVID should be blocked from face-to-face support of people with disability for at least seven days and pending a negative RAT. Access to paid isolation leave for disability workers is critical, so they don’t have to choose between exposing the people with disability they support to illness and paying the rent.

Finally, when new COVID variants and waves inevitably emerge, governments will need to remain open to reintroducing measures including isolation of positive cases and mask-wearing indoors. This could avoid devastating outcomes for people with disability and other Australians at increased risk of serious disease and death.

Author details and disclosure statements

Anne Kavanagh is Professor of Disability and Health, Melbourne School of Population and Global Health, The University of Melbourne. She receives funding from National Health and Medical Research Council and Australian Research Council. She has received funding from Victorian and Commonwealth governments and the National Disability Agency. She is a member of the COVID-19 Disability Advisory Committee and Commonwealth Disability Health Sector Consultative Commitee.

Helen Dickinson is Professor, Public Service Research, UNSW Sydney. She receives funding from ARC, NMHRC, Commonwealth government and CYDA.

Nancy Baxter is Professor and Head of Melbourne School of Population & Global Health, The University of Melbourne. The School Nancy Baxter leads receives research grant funding from the National Health & Medical Research Council of Australia, Australian Research Council, and other Australian federal and Victorian State Government bodies. She serves on the Advisory Board of The Australian Global Health Alliance and on the Board of the Nossal Institute. She has been an unpaid participant in an Advisory Board meeting for MSD Australia.


See Croakey’s archive of articles on disability and health matters

 

 

 

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