What’s the plan to keep disabled people safe?
The Covid-19 challenge for disabled people is two-fold: keeping them safe, and ensuring disability support continues to be available to them. What's the plan for this? asks Samuel Murray.
While we are rightfully focused on eliminating Covid-19, we need a specific plan that addresses the needs of both the disability and aged-care sectors as well as for the wider disability community. While not all disabled people are at extra risk of Covid-19, we know a disproportionate number will be. They need to be kept safe during any outbreak. At the same time, we need to ensure disability support is available throughout this pandemic, no matter how widespread it is. This will be a difficult task, but we must do so.
Previous research by the Ministry of Health found that people with a learning disability were 1.5 times more likely to be treated for chronic respiratory disease and two times more likely to be treated for heart disease and diabetes. This is important because, in 2018, 50 percent of all people receiving the Ministry of Health’s Disability Support Services had a learning disability as their principal disability.
A literature review by the Donald Beasley Institute found that people with a physical disability are more likely to have chronic conditions, including asthma and high blood pressure. Some physical impairments can negatively affect a person’s immune system. The same review found that deaf and vision-impaired people faced barriers to accessing healthcare, as did people with Autism Spectrum Disorder.
In the 2013 Disability Survey, an estimated 77,000 disabled people reported being in poor health. Fifty-four thousand of these were aged under 65. If we update these numbers with the 2018 Census results, there is an estimated 92,254 disabled people reporting poor health with 60,202 under 65. In the event of a widespread outbreak, it is highly likely that many, if not most, of the hospitalisations and deaths will come from this population.
Yet, there were concerns that the Ministry of Health team that manages disability supports was understaffed even before the pandemic. If the team is still not well-staffed, this must be resolved as quickly as possible. We need a well-staffed Disability Support Services team at the Ministry of Health, and then some.
It is crucial to keep Covid-19 away from disabled people and the people who support them. It is just as crucial to ensure support continues to be available at every stage of an outbreak.
In Spain, there are reports of people abandoned in rest homes. In China, a disabled man reportedly died after his primary carer was quarantined. For some disabled people with high support needs, a lack of support is just as dangerous as Covid-19.
If we have a widespread outbreak, ensuring support is available will be very difficult. Not only will some people be sick, but many others will be unable to work because they need to self-isolate. It is easy to see a scenario where the number of staff that can work plummets.
In addition to helping prevent the people they are supporting from getting Covid-19, the other primary purpose of giving support workers protective gear is to keep a viable workforce in the event of an outbreak. It is not about people feeling safe. It is about preventing a crucial lifesaving workforce from collapsing during a widespread outbreak. I am not sure that is widely understood.
This means we need to pair protective gear with effective training in how to use it and other infection control measures. I know many workers and organisations in the disability and aged-care sector already have a tight focus on infection control, but this will need to be heavily strengthened if we are to prevent deaths.
We will need to consider ways to rapidly expand the workforce during an outbreak to ensure enough workers are always available for essential support. This could include sharing the workforce with the aged-care sector, although they are likely to experience similar issues. Just like with health care, we may need to build a pool of ex-support workers, such as myself, to work if needed.
It is not enough to focus on the organisations that provide support or even on the people currently using support. It has been long acknowledged that there is a significant number of disabled people who do not access funded support. Instead, family and friends support them. Late last year, the New Zealand Disability Support Network estimated that 15,000 disabled people did not access support they were eligible for.
Many disabled people might find their usual unpaid support unavailable during a widespread outbreak. They could need to rapidly access paid support as a short-term alternative. This will also increase the pressure on the workforce.
In a recent research project focused on disabled children and young people that I did with A Better Start, we found that Māori, Asian peoples, and Pasifika were more likely to not use the Ministry of Health’s disability support services. These are the communities that are likely to need additional support during an outbreak.
A growing number of disabled people and their whānau self-manage their supports and support workers. In 2018, 5734 disabled people used the Ministry of Health’s Enhanced and regular Individualised Funding. While this has brought choice and control, in the current situation, it is another group that could rapidly need backup support.
Regardless of whether we move down a level later this month, we need to plan for how we will keep disabled people safe and well-supported during any outbreak. We need to use any breathing room to build capacity and capability amongst the disability and aged-care sectors as well as the wider disability community. This includes a well-staffed Disability Support Service team at the Ministry of Health as well as setting up a pool of support workers who can keep working even during a serious outbreak.
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