Protecting people with disability during the pandemic

The Australian government has now announced a tailored COVID-19 strategy for people with disability, but it should have come sooner and may not go far enough.

In this post, Professor Anne Kavanagh, University of Melbourne (@Kavanagh_AM) reflects on the strategy and the work still to be done. This post was originally published on the University of Melbourne’s Pursuit website.

People with disability are at significant risk during the COVID-19 pandemic, but you’d be forgiven for not knowing this as Australia’s senior government officials and politicians have barely mentioned disability.

Indeed, the Prime Minister has regularly held press conferences without an Auslan sign language interpreter for the hearing impaired, and only now are we seeing Easy English resources on COVID-19 being produced for people with intellectual disability.

The government’s plan requires significant coordination between the disability and health sectors.

As the COVID-19 pandemic unfolds in Australia, disability advocacy groups and academics have called for a tailored strategy for people with disability covering prevention, screening, quarantine and treatment.

The Commonwealth Government responded to these calls and last week released the Management and Operational Plan for people with disability in COVID-19. I am one of the people overseeing the development and implementation of the Plan, sitting on the Advisory Committee.

While the Plan is welcome, highlighting the Government’s commitment to upholding the United Nations Convention on the Rights of Persons with Disabilities (CPRD), it should have happened much earlier.

In order to uphold the right of people to have access to the same standards of health care provided free from discrimination and bias, its implementation will require detailed work. This means significant coordination between the disability and health sectors, and government agencies including the National Disability Insurance Agency and the National Quality and Safeguards Commission.

It also requires leadership from State and Territory and Commonwealth governments.

The slow response for people with disabilities contrasts with what we have seen for Aged Care. Here, the government planned early; in part because previous experience with influenza showed that infection can spread rapidly in congregate living (a place where a number of people reside, meet or gather in close proximity for either a limited or extended period of time) like nursing homes.

There are concerns about the health and wellbeing of disabled people who live, work and recreate in congregate living settings.

However, these same concerns equally apply to disabled people.

In fact, one of my major concerns about the Plan is that is doesn’t go far enough to protect the health and wellbeing of disabled people who live, work and recreate in congregate settings.

Children and adults with disability with high and complex support needs, including those with intellectual or cognitive disabilities, may be more likely to be exposed to COVID-19 because they are less able to physically distance themselves and personal hygiene practices may be suboptimal.

Disabled people are also more likely to have chronic conditions that place them at higher risk if they become infected.

According to the Australian Bureau of Statistics Survey of Disability, Ageing and Carers, approximately 1.5 million Australians with disability receive assistance from formal providers – 170,000 receive this assistance daily. This means that they have support workers come into where they live, often providing assistance with tasks like feeding, bathing and toileting which require close contact.

The support workers usually provide care to many people with disability and older Australians, increasing the network of people that the disabled person receiving care is exposed to.

Approximately 1.5 million Australians with disability receive assistance from formal providers.

Effectively, it becomes impossible to lockdown and limit contact to a household. Add in congregation and the risk of infection increases manifold.

According to the Survey of Disability, Ageing and Carers, 13,500 disabled people aged 15 to 64 years are living in cared accommodation, but this number is likely to be higher as there can be limitations in the survey in reaching these population groups. Internationally, outbreaks in these settings has been reported frequently.

People with disability, particularly people with intellectual and psychosocial disability, are also overrepresented in prisons.

On top of these numbers, around 21,000 people with disabilities work in congregate environments, including supported employment in disability enterprises on jobs like packaging, cleaning and food services.

It is difficult to get exact statistics of people working in these environments, but they range in size with many employing hundreds of disabled people. There’s also day services where groups of people with disability participate in a range of activities.

While closing congregate living environments like groups homes may not be possible, it is surprising that some disability enterprises and day programs remain open.

The National Quality and Safeguards Commission has advised that providers consider alternative ways to support people with disability who are attending centre-based services, but the decision about whether a service stays open is left to individual providers.

The strategy must be tailored for people with disability covering prevention, screening, quarantine and treatment.

This means that providers are making different decisions about whether they can protect the safety and wellbeing of people with disability and their support workers – with some staying open and others closing their doors.

In fact, the Commission doesn’t have regulatory oversight of all centre-based services and, even where it does, there is no mechanism to ensure that providers are complying with public health directives regarding physical distancing and hygiene.

This lack of regulatory oversight is particularly problematic with the temporary withdrawal of the Community Visitor program during COVID-19.

Community Visitors are volunteers empowered by law who visit disability accommodation services and observe interactions, inspect documents and other material to identify areas of concern including abuse and neglect.

Visits from family members and friends are also restricted at this time, removing another layer of protection and leaving people with disability living in congregate accommodation at heightened risk of violence, abuse and neglect. This is something that the Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability has already laid bare in these settings.

Given we know the risks of these settings and the fact that many people with disabilities have health conditions that make them more vulnerable if infected, it is again surprising that some centre-based services are still open and alternative arrangements are not being made to support people.

Some centre-based services are staying open, while others are choosing to close.

Decisions about whether services remain open shouldn’t be left to individual providers to make.

There is no doubt temporary closure of centre-based services will be difficult, posing additional challenges for people with disability, their support workers and carers.

But this is a sleeper problem. If infection occurs, it has the potential to spread rapidly across different living, working and recreational settings.

When group settings are unavoidable, it is critical that services are independently monitored so that we know that infection control is of the highest standard and that violence, abuse and neglect isn’t being perpetrated.

Mitigating the risk of infection for people with disability in congregate environments requires urgent attention and would go some way to ensuring that people with disability receive the same level of protection as the rest of Australia.

This post was originally published by Professor Anne Kavanagh (@Kavanagh_AM) on the University of Melbourne’s Pursuit website.