People with disabilities left behind in Covid-19 response
A few days after the World Health Organization declared Covid-19 a pandemic, the Yokohama District Court sentenced 30-year-old Satoshi Uematsu to death. Uematsu’s crime was the murder of 19 people with disabilities in the Tsukui Yamayuri-en care home in Sagamihara, where he had once been employed. Handing himself in to police, Uematsu said he had committed his crime because he believed that it would be better for the world if disabled people were to just “disappear”.
International media coverage of Uematsu’s sentence was sidelined by reports of the newly proclaimed pandemic. But people with disabilities were indeed in danger of “disappearing” during the response to the pandemic, just as Uematsu had wanted us to disappear from the face of the earth.
In his opening address at the latest hearings of Australia’s Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disabilities, commission chair Ronald Sackville noted that the harrowing phone calls to the commission’s hotline during the early weeks of the pandemic had prompted it to issue a statement of concern in March. In it, the commission had called on the government to “take all necessary measures to ensure the protection and safety of persons with disabilities”.
The Commonwealth Department of Health’s Management and Operational Plan for People with Disability was finally approved on April 16. Noting there were still remaining areas of concern, however, Sackville said, “The current emergency may last a very long time … we owe it to people with disability to put forward our recommendations as soon as possible.”
As the United Nations special rapporteur on the rights of people with disabilities, Catalina Devandas Aguilar, said in her evidence to the commission, “Persons with disabilities in general were an afterthought in the state responses to the pandemic; they were not engaged in the decisions for persons with disabilities and their organisations, and that contributed to their further exclusion.”
Last week’s hearings into the experiences of people with disability during the pandemic were themselves a reflection of the Covid-19 normal, with two of the commissioners appearing from the courthouse in Sydney while a third appeared from her home in Melbourne. Only one of the witnesses chose to attend in person, with the others taking part online or in a prerecording.
Commissioner Sackville told The Saturday Paper the royal commission had provided virtual breakout rooms where witnesses could be briefed on logistics and provided with counselling services if need be. The commission’s outreach activities have been significantly disrupted, with in-person roundtables, consultations and counselling services suspended in favour of telephone and online substitutes.
One of the most basic ways people living with disability in Australia have “disappeared” during the pandemic is our absence from the Covid-19-related data. As noted by senior counsel assisting Kate Eastman, SC, in her opening statement, while there are statistics on Covid-19-related hospital admissions and deaths, as well as the age and gender of the people who have died, “there is no data or statistics that tell us about the rate of infection or death for people with disability”.
Department of Health assistant secretary Simon Cotterell and deputy chief medical officer Dr Nick Coatsworth both confirmed that no government department had collected specific data on coronavirus deaths among people with disabilities. However, Samantha Taylor, the registrar of the National Disability Insurance Scheme Quality and Safeguards Commission, told the hearings that by August 13, eight NDIS participants and one support worker had died while positive for Covid-19, and another 76 participants had been infected.
Other expert witnesses and disability advocates testified to fearing the worst, given the high rates of chronic medical conditions among people with disabilities, in combination with the hazards associated with the types of housing and support services provided to many of them. Disabled witnesses and their family members testified to the disproportionate impact that the pandemic’s social and financial ramifications have had on their overall health and wellbeing.
Professor Anne Kavanagh of the Melbourne School of Population and Global Health cited failures in the initial response, including lack of access to personal protective equipment for people living with disability and their carers, and the lack of information in accessible formats such as braille, sign language and easy-read versions for people with intellectual disabilities. She also cited the sudden withdrawal of services – sometimes at the instigation of the disabled person themselves, at other times after their support workers were exposed to or contracted Covid-19 – and, in particular, the higher degree of potential exposure to Covid-19 for those who live in group homes or attend respite services. Academic and United Nations disability spokesperson Rosemary Kayess noted that some people with intellectual disabilities have been overmedicated and confined to their rooms and denied visits from family members in order to force adherence to physical distancing.
Many witnesses testified about the various obstacles people living with disability face in conforming to Covid-safe protocols. Face masks, for example, are a barrier to communication for deaf people who rely on lip-reading, while others are unable to follow the advice to avoid touching surfaces, whether for physical support or in order to read braille signage. People with intellectual disabilities may have difficulty comprehending the need for physical distancing, while it is difficult or impossible for many disabled people to avoid close physical contact with support workers who may be working with many other clients across multiple sites.
Given the diversity of impairments among people with disabilities though, the impact of the pandemic has not been evenly experienced, with commissioners and witnesses noting that women, people from culturally and linguistically diverse communities and those from First Nations communities have been particularly hard hit.
Commissioner and disability advocate Dr Rhonda Galbally and Women with Disabilities Victoria chief executive Leah van Poppel both told The Saturday Paper about the impact of the digital divide, with those living in supported accommodation as well as regional and remote areas denied access to crucial online resources. Witnesses to the royal commission also described their own mixed experiences of the pandemic, with stress and anxiety mingled with the unexpected bonus of being able to access provisions such as working from home and telehealth services, for which disability advocates had long lobbied. “Everything I have been campaigning for, for 20 years, has now been dropped in my lap and I’m so scared they’re going to go [away],” Melbourne woman Ricky Buchanan said.
The figure of Adelaide woman Ann Marie Smith, who died in April after being discovered in her home in a state of horrific neglect, haunted the royal commission. Testimony was heard about the abuse that might be inflicted by carers in the absence of external scrutiny. Family violence survivor and advocate Nicole Lee testified that it is likely the extreme reduction in contact with the outside world during lockdowns, in combination with the fact that abusers are likely to be always in the background, particularly if they are an intimate partner, has increased the rate of abuse and limited the ability of women with disabilities to seek help. Leah van Poppel expressed similar concerns, noting that, in regard to people with disabilities, women are most likely to experience abuse.
Damian Griffis, chief executive of the First Peoples Disability Network, testified to the intersectional discrimination experienced by Aboriginal people living with disability: “We don’t get … a high enough profile in disability and we don’t get a high enough profile in Aboriginal justice, and we’re walking in both those worlds,” he said. Like the Covid-19 health plans of many mainstream institutions, the strategy developed by the National Aboriginal Community Controlled Health Organisations in partnership with the Commonwealth Department of Health made no mention of disability.
Griffis also spoke of his fears that institutional racism and ableism within the health system could see Aboriginal patients with disabilities triaged away from receiving care, as has reportedly happened with African–American patients in the United States and disabled patients in Britain. The fear of being triaged out of potentially life-saving care is very real among disabled people, exacerbated by comments in both mainstream and social media. Deaf witness Sarah Yahya said she was made to feel unworthy by a “survival of the fittest” attitude among those opposed to the lockdowns. Leah van Poppel told The Saturday Paper that some of the conversations about herd immunity “reveal underlying ableism, suggesting the deaths among high-risk groups such as aged-care residents and people with a disability might be a necessary sacrifice for the nation’s economic wellbeing”.
In his closing address, Ronald Sackville said the royal commission would prepare a report for the Commonwealth government from the Covid-19 hearings, listing 18 areas of significance, including “the collection and reporting of data on the impact of Covid-19 on all people with disability”, whether disability workers should be considered essential workers, and “the provision of Commonwealth funding for a dedicated 1800 hotline and SMS service for First Nations people with disability”.
Looking ahead, van Poppel told The Saturday Paper that “the challenge will be to retain positive resources such as telehealth and the enhanced ability to work from home without losing our visibility in the public space”. People with disabilities have no intention of disappearing from the post-Covid-19 public landscape.
This article was first published in the print edition of The Saturday Paper on Aug 29, 2020 as "‘An afterthought’".
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