This week the Disability Royal Commission highlighted several failures to ensure that people with disabilities – a priority group in the rollout – can access vaccinations.
Children and adolescents are of no importance in this report because they became eligible for vaccination only in the last month.
Yet 62% of parents responding to a recent survey by Children and Young People with Disabilities Australia (CYDA) are having trouble securing their child or children with disabilities.
While the number of children suffering from serious illness due to COVID has remained low till date, the Delta version has changed this situation. Countries such as the United States are seeing an increase in the number of hospitalizations among children and adolescents.
As Australia begins to “live with Covid” and ease restrictions, we will see a substantial increase in serious infections among children and people with disabilities – unless vaccination rates in this group increase significantly.
Read more: Opening up will not be ‘safe’ for all Australians when 80% of eligible adults are vaccinated
Why are children with disabilities at greater risk?
Australians with disabilities are at greater risk during the COVID pandemic as many have other health conditions, such as respiratory problems, heart disease and diabetes. This makes them more likely to get sick or die if infected. The same is true of children with disabilities.
People with disabilities are more likely to be poor, unemployed and socially isolated, making them more likely to experience poor health outcomes.
In other countries we have seen people with disabilities die from COVID-19 at a higher rate than their non-disabled peers. In England, about six out of every ten people who died of COVID in 2020 had disabilities, and this risk increases with the level of disability.
Severe COVID is uncommon in children and adolescents and rarely causes death, although children with pre-existing conditions have a higher risk of severe disease.
There is an ongoing debate as to whether the delta variant of COVID causes more severe disease in children than previous variants. However, it spreads rapidly so the number of children who develop serious illness will increase.
Furthermore, because vaccination campaigns have prioritized older groups, we will see that infections in children increase as a proportion of total infections.
We’ve seen it in the United States. Schools were recently reopened and the country recorded the highest weekly rate of new cases among children and young people since the pandemic began.
With a fivefold increase in COVID hospitalizations, US children’s hospitals are reported to be under pressure. In any increase in cases, people with disabilities carry the burden of serious illness.
Children with disabilities cannot book vaccinations
Children and Youth with Disabilities Australia (CYDA) wanted to understand whether children and youth and their families were facing challenges in accessing vaccinations and if so, what were their nature.
Its online survey was open for a week and received 150 responses, which our research team analyzed. Some of the responses were from young people and most were from parents/carers of children and youth with disabilities.
The survey found that 62% of respondents were parents or caregivers who report having trouble securing vaccinations for their child or children, some of whom also faced challenges getting vaccinated themselves .
Overall, 72% of survey respondents were either parents or young people who were challenged with vaccination. This includes difficulties with the booking system, not being recognized as part of the priority rollout, and not being able to book with a GP.
The system is not designed with children and youth with disabilities in mind. Parents and caregivers struggled to get vaccination appointments and prove their or their child’s eligibility.
Read more: First was the vaccination plan for the most at-risk groups. But people with disabilities are being left behind
The system isn’t set up to book for dependents, so parents can’t easily book appointments if kids don’t have their own phone numbers and email addresses.
When calling a call center, things aren’t always easy, as one parent explains:
The call center person only wanted to talk to my 16 year old son and non-verbal. refused to talk to me.
Parents report doing a lot of work to secure an appointment for their child or young person through several different channels, for example:
I spent a total of 7 hours calling various GP practices and sitting on hold and eventually secured my baby appointment. NSW Health Hub took a month to achieve priority eligibility for children with disabilities aged 12-15.
I know people who haven’t been able to secure an appointment for their disabled child. Many GP practices did not know that this group was eligible or would not accept someone who was not a current patient. This is inherently discriminatory.
inaccessible vaccination experience
Once an appointment was booked, many respondents reported that vaccination centers and GP practices were not able to meet the needs of their child or young person. As one parent explained:
My son has Down syndrome and severe intellectual disability and going to the vaccination center is painful. He has a phobia of needles and has to be under general anaesthetic to take blood […] Hospital.
Some youth with disabilities have experienced high levels of medical trauma in the past and therefore find it very difficult to access routine immunization procedures. One parent told us that:
I know of many incidents where parents have to do restrictive types of exercises to make sure their disabled child was able to remain stable during vaccination, lots of trauma and anxiety, future stress/trauma Not to mention the possibility of.
In many places the lack of access to GP or specialist services means that parents have to make difficult decisions about whether to put their child through a painful process or put them at risk of being unvaccinated Go.
Read more: ‘I’m scared’: Parents of children with disabilities struggle to get down to the basics during coronavirus
Some good practice but not comprehensive enough
However, there are some areas where things have worked out.
Victoria has a Disability Liaison Officer service that seeks to connect people with disabilities to appropriate immunization experiences. One parent explained:
It was initially a challenge until I was made aware of the Vic Disability Liaison support for COVID vaccination. They were awesome and supported my daughter to take her first dose yesterday. Without them I would still be waiting, without any support and worry. I understand this is only available in Victoria and should be available everywhere.
And some families have GPs who went the extra mile to get vaccinated in a safe and proper way.
But these good examples are not widespread and the communication around specialist services is not as strong as it could be.
As the country moves towards living with COVID and gradually lifting public health restrictions, it is imperative that we vaccinate more and more children and young people with disabilities. Otherwise we are likely to see a large number of infections and severe disease in this group.
Identifying individuals and families who are eligible and providing appropriate specialist support so that they can be vaccinated is a priority.