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As the motu moves beyond the acute phase of the pandemic, and rapidly altered healthcare delivery approaches, disabled people – accounting for almost one-quarter of the population – have largely been forgotten
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Aotearoa New Zealand ratified the United Nations Convention on the Rights of Persons with Disabilities (CRPD) in 2008. The convention guarantees disabled people rights to the highest attainable health standard without discrimination on the basis of disability. Yet, recent research into the delivery of healthcare and support services has highlighted inordinate barriers experienced by disabled people in accessing services during the COVID-19 pandemic.
Unlike research into the general population, there has been only limited focus nationally and internationally on disabled peoples’ experiences with healthcare and disability support over the pandemic. A team of researchers from Victoria University of Wellington, Massey University, and Kaitiaki Research and Evaluation have been seeking to fill this gap.
Recent research from the team published in the International Journal of Environmental Research and Public Health1 and the Journal of Visual Impairment & Blindness2 describes the unique experiences of Deaf people and those with vision impairment living in Aotearoa over the pandemic.
This research is especially important given the longstanding impact poor healthcare and disability support access can have on outcomes for people with requirements that are, in many cases, distinct from the general population. Several findings are directly relevant to primary healthcare service delivery, particularly given general practice’s role in gatekeeping access to other healthcare services.
The imposition of universal face-mask use created obstacles for Deaf people and led many to disengage from health services. Research participants argued that a human rights framework requires health professionals to ensure that communication barriers are removed. They advocated for the universal use of face shields or masks with plastic cutouts to enable Deaf people to lip read and see facial expressions. The following quote from a participant illustrates this issue.
“Visiting a GP with the mask is frustrating. I understand they’re trying to protect themselves too, but they could choose those face shields and just use that. Then there would be better communication, and it’s their responsibility to have that” – Deaf participant.
Similarly, those with vision impairment highlighted that mask wearing led to difficulties hearing people, compounding vulnerabilities when entering newly reconfigured places.
“I was only going to places I really knew. I rely on being able to hear people when they talk, and masks muffle sounds and so do Perspex screens, and I can’t hear properly. I find it really hard to communicate with people” – participant with vision impairment.
Deaf people in hospital emergency departments were also denied interpreters because of infection-control policies. When interpreters were not viewed as occupying an integral role in health service delivery, Deaf people reported facing prolonged treatment delays.
“One of my friends was rushed to hospital. She was in a lot of pain, and they didn’t give her any pain relief for three hours while they were waiting for an interpreter” – Deaf participant.
On a day-to-day level, people with vision impairment reported losing access to formal support from carers and support workers caused by COVID-19 sickness and fear, and inefficiencies in health and disability support. Consequently, many people with vision impairment reported being unable to attend health appointments, exercise and buy necessary food or pick up medications.
“Support just stopped. I felt isolated and alone. I now have no help from disability services” – blind participant.
People with vision impairment spoke about the loss of physical contact and signals in newly reconfigured spaces, such as supermarkets, pharmacies, general practices and workplaces. For example, arrows and physical markings on floors to indicate where to stand as part of social distancing, or where to sanitise hands, were unable to be seen by those with vision impairment.
For Deaf people, gatekeeping from receptionists and other non-medical staff who were unwilling to engage with Deaf people heightened frustration as they could not hear what staff were saying. At a system level, there was also loss of contact between providers, meaning test results were not followed up and/or communicated to the patient.
The research also identified a series of ableist assumptions that contributed to access difficulties. Most common was the assumption that Deaf people can readily engage with the English language; this belief fails to appreciate that New Zealand Sign Language is a unique language denoted by its own grammatical and sentence structures, and English is often the individual’s second language.
Significant commentary from both Deaf people and those with vision impairment centred on mental distress caused by ineffective health and disability support service access.
“COVID has impacted my short-term health badly. The long-term impact is on my mental health” – participant with vision impairment.
The following practice shifts would enable improved person-centred practices for disabled people.
1. Accessibility – ensure that interactions with health services are accessible to disabled people.
Key considerations include:
2. Continuity of care – prioritise the communication of patient test results and follow up using accessible formats as required.
3. Training – this should be provided for all staff, including receptionists and security personnel, to acknowledge that these roles can function in a gatekeeper capacity and are essential to ensuring disabled people can gain immediate access to the health setting.
4. Wrap-around support – identify people who require wrap-around support and be prepared to liaise between disabled people and relevant support services.
Although Aotearoa is a signatory to the CRPD, the reality is that, as a country, we fail to meet the needs of some disabled people. This has contributed to delays in accessing healthcare or, for some people, no access to necessary healthcare. The CRPD should be foundational to all health policy and practice – by doing so, disaster and pandemic management will naturally encapsulate the needs of disabled people. Notably, the centrality of CRPD needs to occur in tandem with exercising the principles of Te Tiriti o Waitangi in meeting the needs of tāngata whaikaha (disabled people).
Tangible first steps that health professionals and support staff can take in their own journey to improving care for disabled people include undertaking disability awareness and sensitivity training, and identifying physical changes their workplace can make to support disabled people to engage with health providers. This way, responsibility for accessing effective healthcare services does not remain solely the responsibility of the disabled person.
Michael Roguski is a director of Kaitiaki Research and Evaluation. Tara Officer is a registered pharmacist and a lecturer at Victoria University. Gretchen Good is a senior lecturer in Disability and Rehabilitation Studies at Massey University, Palmerston North, and identifies as a disabled academic and advocate. Solmaz Nazari Orakani is a disability researcher at Victoria University. Daniela Händler-Schuster is a professor of nursing at the Zurich University of Applied Sciences, Switzerland. Karen McBride-Henry is a professor of nursing at Victoria University
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