Disabled people carry the cost when healthcare services fail to recognise their needs, writes Professor Karen McBride-Henry.
Comment: For many of us, life post-COVID is pretty much back to normal. We’ve returned to the office (at least for part of the week), we’re eating out (if we can afford it) and queues at the supermarket are a thing of the past.
But for disabled people, the fallout from the pandemic still features large in everyday life, not least when it comes to healthcare.
About 15 percent of the world’s population—1.3 billion people—is disabled. Numbers are expected to grow, partly because of our ageing population but also because of the long tail of long-COVID.
Disabled people use healthcare services at about double the rate of non-disabled people. But COVID’s arrival and, later, lockdowns made getting care a struggle. Treatment delays undoubtedly resulted in poorer health outcomes, including poorer mental health.
Unlike the supermarket queues, this problem hasn’t gone away. Ongoing workforce shortages and the resulting rationing of care mean the struggle continues for many disabled people.
Barriers to care
The past few years have been something of a masterclass in the problems disabled people can face when healthcare services fail to recognise their needs.
Along with colleagues, I recently completed a review of research on disabled people’s experiences of using healthcare services between January 2020 and February 2023. It’s part of a larger project investigating disabled people's access to care.
Our review identified 81 studies from New Zealand and around the world. The findings showed disabled people were more likely to face significant challenges accessing healthcare. Many disabled people who took part in these studies talked about the sheer size of the healthcare disruptions they faced during COVID.
Reduced availability of disability support services resulted in myriad problems getting routine care. If you’re reliant on a support worker to drive you to a doctor’s appointment, what do you do if they aren’t available any more?
Getting to COVID-19 testing and vaccination centres also presented problems. Many of us were able to drive ourselves to the nearest vaccination venue, but this wasn’t an option for disabled people reliant on support services for transport. Even if they got to the venue, there was no guarantee it was well-designed for disability access.
Telehealth services—speaking to a health provider on the phone or online—were helpful for some disabled people and lessened the effects of lockdowns. However, for deaf people, those with an intellectual disability, or without access to phones or the internet, these services weren’t a viable alternative.
Masks presented other problems for those with hearing, vision or intellectual disabilities by making it harder to understand what was being said.
Disabled people also reported that ableist attitudes of healthcare providers created added barriers to healthcare and made them feel invisible. For example, Deaf people could signal they were deaf and wanted to lip-read, but healthcare providers would refuse to remove their masks. As a result, Deaf people chose not to access healthcare unless it was urgent.
Research shows disabled people who faced other disadvantages—such as being on a low income—were at the most risk of experiencing barriers to healthcare and adverse health outcomes. Those in low-income countries faced additional hardships in accessing even basic health needs, such as sanitation.
‘Disability-blind’ health policies
The problems disabled people had during the pandemic starkly highlight what happens when health policies are “disability-blind” and don’t include disabled people in their design and implementation.
Aotearoa may have fared better than many countries in keeping down the death toll from COVID-19, but our health system now faces the dual burden of a reform and recovery from the pandemic. Arguably, disabled people risk being further marginalised.
There’s an urgent need for research and healthcare policies that are responsive to disabled people's healthcare requirements.
Research also needs to explore the long-term impacts of health system disruption on our tāngata whaikaha (disabled people) and work with them to put research evidence into practice.
Failing to design healthcare services that cater for the needs of disabled people, and ignoring the partnership obligations of Te Tiriti o Waitangi, will have long-term consequences. The number of disabled people requiring care will only grow as the population ages.
Investment in disabled health service researchers is required as well. This will assist in creating disability-responsive research and improving disabled people's health outcomes.
It will also mean we’re better prepared to deal with future pandemics, disasters and emergencies. Supporting disabled people during pandemics is best achieved by including them in pre-pandemic, pandemic and post-pandemic health system planning.
This article was originally published on Newsroom.
Karen McBride-Henry is a professor of nursing at Te Herenga Waka—Victoria University of Wellington.