The Centre of Research Excellence in Disability and Health has five relatively straightforward recommendations for equipping the healthcare system to rapidly scale up the healthcare sector’s capacity to care for people with a disability.
Leading health and disability researchers at the University of Melbourne, University of New South Wales, and University of Sydney have called on federal and state governments to enact a targeted coronavirus response for the disability sector, akin to their medical and aged care packages.
Noting a horrific report of a Chinese teenager with cerebral palsy dying of starvation after his brother and father were quarantined — health officials only fed him twice within the week — the Centre of Research Excellence in Disability and Health has warned that neither the healthcare nor disability sector is equipped to ensure tailored, consistent level of care for people with a disability throughout the crisis.
The latter is especially dire considering that, according to the centre’s chief investigator and research director an UNSW’s Centre for Social Impact Gemma Carey, fostering a gig economy of carers through the National Disability Insurance Scheme has meant creating “the perfect system to spread this to people with disability”.
How the national healthcare plan forgot people with a disability
First, however, the centre has issued five relatively straightforward recommendations for equipping the healthcare system to rapidly scale up the healthcare sector’s capacity to care for people with a disability.
Speaking to The Mandarin, co-director of the centre and academic director of the Melbourne Disability Institute in University of Melbourne, Professor Anne Kavanagh notes that not only is the healthcare sector not “working well for people with disabilities in general”, but that people living with a disability can face a range of vulnerabilities to the coronavirus pandemic — from interrelated chronic illnesses to segregated settings to physical, cognitive or intellectual disabilities that make it difficult to access government communications — that have not been factored into the government’s healthcare package.
To that effect, the centre calls for five recommendations for rapidly upscaling the healthcare sector:
- Ensuring all clinics providing testing and services related to COVID-19 are completely accessible and that this is communicated clearly to people with disability and their carers;
- Providing extra resources, such as video conferencing and telephone consultations, to existing specialised medical services for people with disability;
- Creating a dedicated hotline for people with a disability, disability services and families;
- Ensuring sufficient support for people with disability with the most complex needs, particularly if quarantined; and
- Making information accessible (including Easy English, Auslan, large print, captioning in all community languages) and disseminating this information through disability services, advocacy bodies and the National Disability Insurance Agency.
How to rapidly upskill and sustain the disability care workforce
Perhaps more insidious, however, is how uniquely primed the disability sector is to spread the virus.
As Carey explains, the NDIS operates as something of a gig-economy that both increases the risk of exposure for people with a disability and, for any carers experiencing symptoms, economic pressure to work rather than not get paid.
“In practical terms, that one person will have 10 carers coming to their home to do different tasks, and that could be to give medication, it could be to shower them, help with toileting, quite intimate food handling type tasks,” Carey says. “And those ten carers that come in then go on to another participant’s home, and another participant’s home.”
“At the moment, when they don’t show up to do that support, they don’t get back paid. So we’ve actually created a system where we’re bringing a lot of close contact between people with a disability and a highly mobile workforce, and then we’ve incentivised that workforce to come to work, even if they’re sick, because they won’t get wages if they’re quarantined.”
There’s also that crucial first problem of recipients’ needs being forgotten if carers are swapped in and out — on top of that worst-case scenario in China, Carey notes the 2011 death of Canberra woman Stephanie June Fry over confusion in her government-run group home over her choking hazard.
Other risks include casual and self-employed carers having disparate communication with providers, advocacy bodies and/or the NDIA as complications arise throughout the pandemic; the increased likelihood that family members will take on carer responsibilities during quarantine, creating both financial and, in some cases, physical and emotional distress; and the potential closures of both critical and non-critical services.
To that end, the centre offers a whopping fifteen recommendations for rapidly increasing the workforce’s capacity and sustainability throughout the pandemic, which can be broken down by:
- Rapid upskilling of disability care workforce in infection control;
- Developing standby capacity that will allow rapid recruitment and expansion of the disability workforce sector by drawing on students of allied health including occupational therapy, physiotherapy and social work; and
- Increasing capacity to process Working with Children and Police checks so a new workforce can be mobilised quickly.
Provider and service support
- Providing more financial resources to services so they can rapidly scale up their operations when there are closures to schools, day services and other programs. This could be done through the NDIA;
- Ensuring that services that provide specialist supports such as employment and therapy remain financially sustainable if they experience a downturn because their operations need to cease temporarily; and
- Allowing the disability service sector, like the health and aged care sectors, to have priority access at no cost to personal protective equipment including masks, hand sanitisers etc.
Support for complex and self-managed disabilities
- Ensuring the needs of people with disability who self-manage are met as they may find it harder to access new workers and to get access to personal protective equipment;
- Ensuring continuity of support for people with disability with the most complex needs; and
- Providing strong local coordination, potentially through Local Area Coordinators, to triage disability services so that as workers become infected or are exposed to infection, the most critical services are staffed and kept open.
- Providing financial compensation from the NDIA for the casual and self-employed disability workforce (an increasing component of the sector) who may need to self-isolate to avoid them coming to work if sick placing people with disability at risk of infection; and
- Compensating family and carers of people with disability who need to take time off work to care for their loved one. This could include paying family members for a time limited period for support provided during normal working hours.
Physical and emotional safety plans
- Developing a coordinated plan, implemented through the National Quality and Safeguards Commission, to address the potential for increased violence, abuse and neglect against people with disability because of social isolation and disruption to daily routines, particularly in congregated settings such as group homes; and
- Providing emergency support to families who are caring for family members who have behaviours of concern that may pose a risk to the person with disability and/or family members.
Targeted plans Indigenous and non-NDIS registered people with a disability
- Liaising with Aboriginal and Torres Strait Islander advocacy groups and communities to ensure that their needs are met; and
- Ensuring that people who have not yet transitioned to the NDIS and people with disability who do not qualify for the NDIS, but may be vulnerable to COVID-19, receive the services and the support they need.
Since the centre launched its campaign on Friday, the National Disability Insurance Agency released a dedicated webpage announcing the development of an as-yet-unspecified Agency Pandemic Plan, in line with the Government’s Emergency Response Plan.
The page, which is currently available in both Easy Read and audio options, flags that NDIS participants, families and carers can request alternatives to face-to-face meetings, and includes some targeted advice for both participants and providers.
Additionally, the National Quality and Safeguard Commission has launched a website for providers, including a training module, webinar and alert system.
Responding to questions on the disability sector pandemic plan, both the NDIA and NQSC directed the Mandarin to a statement from NDIS Minister Stuart Robert:
“We have plans in place to ensure the NDIA, providers and NDIS participants are well supported, and to ensure continuation of services in the case of an escalation in the incidence of COVID-19,” Robert says. “Participants, families, carers and providers will be given clear direction if services are disrupted in any way, ensuring they have options to continue accessing supports.”
“I am working closely with my Cabinet colleagues, departments and agencies to support a coordinated approach to delivering essential services such as the NDIS to the community.”
At the federal level, Greens senator Jordon Steele-John has endorses the CRE-DH’s plan.
The Centre of Research Excellence in Disability Health has actionable recommendations to ensure everyone who is at risk gets the support and information they need #COVID19
— Senator Jordon Steele-John 🌏🔥 (@Jordonsteele) March 16, 2020
Some accessibility requirements, at least, can be handled at the state level.
A spokesperson for Victoria’s Department of Health and Human Services tells The Mandarin that the state government’s new coronavirus clinics will be accessible to people with disability, and “support workers would be able to assist people with disability access clinics”.
“The department is in discussions with a range of federal agencies, including the NDIA and the NDIS Quality and Safeguards Commission around planning for the needs of people with disability in respect of COVID-19,” they say.
“The department is also liaising with the Victorian Disability Advisory Council and National Disability Services (Victoria) along with other disability stakeholders around how best to engage with and support people with disability and broader sector to respond to the COVID-19 crisis.”