Covid-19 membership survey of parents and whānau of people with Down syndrome

By Sarah Paterson-Hamlin and Zandra Vaccarino

In early 2021, the NZDSA wanted to undergo a stocktake so we could understand how our members were experiencing COVID-19. The information gleaned shaped how we could support our community as well as ensuring that our systemic advocacy was relevant to the needs of our community.

Omicron has had significant impact in New Zealand, and while we had some feedback we thought it would be timely to do another survey so that we have a clearer understanding of how parents, whānau, and people with Down syndrome were experiencing the Omicron environment.

The stories you shared and your feedback from the survey will ensure that the NZDSA can effectively represent the Down syndrome community when we advocate to various Government Ministries and Providers. We noted that you are finding our COVID-19 Bulletin useful so we will continue to provide you with our regular COVID-19 Bulletin.

Respondents All but one of the respondents were parents of a person with Down syndrome. None of the respondents lived with Down syndrome themselves. 88% had their child living at home, with 6% in supported living arrangements, and one respondent each with their child living independently and in residential living arrangements. Most of the people with Down syndrome discussed were under the age of 30, with 12% in the 31-45-year age range, 35% between 22 and 30, and 53% being 21 and under. The geographic spread of respondents was diverse, including good representation from those areas most impacted by Omicron-related lockdowns.

As might be expected, the variety of responses were as diverse as the Down syndrome community itself to most of the questions. Some whānau reported positive experiences from lockdowns, government support, communications received, and ongoing benefits such as remote speech and language therapy sessions. Others reported long-term mental and physical health challenges as a direct result of lockdown measures, for both their person with Down syndrome and for the wider household.

“The impact... is huge as people are still needing to isolate or be at home sick with COVID-19... there are huge impacts on staff shortages with disability services that impact us greatly as things may change on a daily basis.”

Support and Services Respondents were overall positive about the continuation of health services during the Omicron outbreak, although many mentioned staffing shortages. It was in the areas of respite care, community activities, and education that Omicron’s impact was felt most keenly among respondents. In addition, though many were understanding of health, education, and other services being in a completely new scenario, there was general dissatisfaction with the clarity of information flow.

“We would like our GP to have been a lot better informed about children’s vaccines, and in communicating early vaccination availability to families with vulnerable people. Also – to have had some personal contact from GP or paed(iatrician) directly... School support was not wellestablished during Omicron, but is starting to get better for us – this is because our school is pro-active.”

The response above and the graphs indicate the variety of experiences families had.

The graph demonstrates the shift from general satisfaction with supports and services prior to the pandemic to a much less positive picture during the Omicron outbreak. This is particularly concerning in light of the many responses that reported negative mental health impacts on their person with Down syndrome as well as the wider whānau. Respondents who mentioned mask or vaccine mandates were divided between those who were anxious for these to continue or concerned that they had relaxed too soon, resulting in further isolation for them and their immunocompromised loved ones, and those who disagreed with the mandates and found them to have had a negative impact on their services, reducing those they were able to access due to either staff shortages or their own decisions regarding these.

Vaccination While the vast majority reported positive experiences with vaccines, testing, and the information provided during the pandemic, the disagreement and controversies around COVID-19 vaccination visible in the general population were unfortunately also clear in the responses to this survey. For example, although 74% of respondents felt they received the information they needed, when they needed it during the pandemic, one respondent commented that neither NZDSA nor the Government should have been providing any information about the Pfizer vaccine. More common, however, was the response that Government and providers had done extremely well in the circumstances, but that service provision, balancing family life, and the ability to engage socially were all significantly and negatively affected by Omicron.

“provider communication has been excellent all the way through”

The experience of the vaccine itself appears to have been overall positive, as the graph to the right indicates. However, the 29% who responded ‘N/A’ is concerning. A slight majority of those answering N/A had children under the age of eligibility at the time (12), but the remainder – 13% of the total responses - represent those who disagreed with vaccination and did not take it up: a disproportionately high percentage compared with the general population, of which only 4% have not received the vaccine.

The quotations demonstrate some of the complexity of this issue for the community.

“My spouse is anti-vax. This has been a major source of stress in addition to the medical issues of the pandemic.” “We have had no supports due to vax mandate” “[It’s] too risky to even go to a cafe now as masks not required or vaccine passes” “[The impact of COVID-19 has been] probably the same as most families, my older children more so especially with the introduction of vaccine passports. They were unable to socialise or play their sports. Thankfully they can do those things that are important to them now.”

The survey also included interesting insights in regards to the experience of Omicron itself for people with Down syndrome, isolation when someone in the household tested positive, where information was received from, and well-being during Omicron restrictions. We will explore these in the Spring edition of Chat 21.