Inquiry finds Omicron response put disabled people at risk
Awhi Ngā Mātua
In news that will likely not surprise the Awhi community, an urgent inquiry by the Human Rights Commission has found that responses to the spread of Omicron caused considerable stress, confusion and put the well-being of disabled people at risk.
Read the inquiry PDF here. Word doc here. Video here.
Disability Rights Commissioner Paula Tesoriero said: “The aspirations and needs of disabled people and their whānau do not appear to have been given prominence in government policy and decision making throughout the pandemic, and some groups reported reduced levels of trust and engagement for disabled people and their whānau during the Omicron phase.”
Awhi Ngā Mātua was born during the Covid 19 pandemic. It was known first as Awhi At Home. We knew as parents of disabled children, that our fellow parents would need support. So often, when you’re a parent of a disabled child you’re isolated and alone. Well before Covid 19, many of us kept our children home over the winter months to try to protect them from influenza, or we kept them home whenever there was a viral outbreak. Many parents can’t have their child in early childhood education or mainstream school due to the risk of catching something.
The pandemic only increased that risk. But there was a time when many of us thought that the pandemic might make everyone change. That care for the disabled, the medically fragile, the immunocompromised might become more widespread as a result of the Covid 19. After all, people were living the lives we were - suddenly finding out washing hands is important (I kid!), using hand sanitiser, wearing a mask, getting vaccinated. All things that are the norm for families with a medically fragile loved one.
I was so hopeful, I even wrote about it: If only we saw other diseases the way we see Covid-19.
My family won’t run out of hand sanitiser or Dettol because we, and other families like us, buy it in bulk. At the first whiff of a new virus a month or so ago, the online support groups for immune compromised families lit up with discussions about who had what in storage and what would happen once people whose lives don’t revolve around the health of their children had to act.
I wrote that in March 2020 and it feels like a million years ago now. I said that I believe the only way to combat Covid-19 is through community. And that too is how we combat measles, whooping cough, influenza and other serious diseases. I said that this requires a massive shift in the way people think. It requires parents to see other children as valuable too. For people to see the elderly, the sick, and children as valuable. It requires an empathy to see that the fear you carry over this virus is the fear immune compromised people and their families carry every day and have done for years and years.
Do you feel now, in 2022 that we have seen more empathy for those who have high health needs? Those who are disabled, have chronic illnesses, are immunocompromised?
I wish I could say that there has been more empathy but in reality I feel like there’s been more ableism. Over the last few months Awhi Ngā Mātua has been supporting parents by email, phone and DM as they grapple with the Government’s changing rules around Omicron.
The move from alert levels to the COVID-19 Traffic Light System saw a sudden reduction in public health protections. This undoubtedly increased risks to disabled people, medically fragile people, and their families, Tāngata Whaikaha, Tāngata Whaiora, and whānau whaikaha Māori.
Mitigations were needed in relation to the greater risk for many disabled people and tāngata whaikaha Māori of getting COVID-19, as well as issues such as risks to disruptions in services, access to essential services and the need for tailored information.
A lot of the feedback we had from the community was that parents felt abandoned, ignored, disappeared. Some said they felt like the message they were getting was that their children do not matter to others. Most of all there was confusion - Why are we doing this when there are more cases than ever?
Many of the issues disabled people identified in the first two years of the COVID-19 response have worsened, while at the same time COVID-19 restrictions and the protections they offered disabled people and their whānau, and communities, have lessened.
There is cause for hope though. Now that there has been a finding, now that we know that the Government increased risks for disabled people…we can look at ensuring it doesn’t happen again.
The Key Recommendations to the Government.
Many of the recommendations will be music to the ears of exhausted and worried parents of children with disabilities. One in particular, to give people more flexible options including how to get the right support for learning if they are staying away from school, is crucial.
Another around carer support, calls on the government to make sure there are more and easier ways to get what people need like masks, rapid antigen tests, a support worker if the usual worker is sick, more help if someone has to isolate at home if they are sick. Many parents have not had access to carers, particularly when they’re sheltering and isolating.
But the recommendation that may have the greatest impact is also the biggest one to commit to: Transforming society’s assumptions about disability
Make sure disabled people are part of making decisions about COVID-19 at all levels of government
Give much better support to whānau and families and other people who care about and support tāngata whaikaha Māori and disabled people
Can we do this? Time will tell. But we at Awhi Ngā Mātua will continue to advocate for, champion and support our families in the community.
We know you will too.
Arohanui,
Emily and Elizabeth