Sydney mom turns to Twitter in determined bid to get daughter with Down’s syndrome vaccinated | Nationwide disability insurance coverage scheme
The mother of a 14-year-old with Down syndrome was forced to contact Twitter to find a vaccination appointment for her daughter as parents urge Australian authorities to improve access for eligible children.
Federal Minister of Health Greg Hunt announced this month that children aged 12 to 15 with certain pre-existing conditions will be able to receive the Pfizer vaccine starting August 9th. This week it has been expanded to include all NDIS participants ages 12 to 15.
However, several parents have told Guardian Australia that it was almost impossible to find an appointment – and some had to go to extraordinary lengths to book a slot.
Yolande Cailly said her daughter’s pediatrician advised that Zoe, 14, would likely die if she contracted Covid.
After the federal government announced that it would open eligibility to some 12 to 15 year olds, Cailly tried to book an appointment before the August 9 start date. “I started looking on platforms like HotDoc and there was just nothing,” she said.
Cailly, who lives in the Ashfield suburb of Sydney, said she called her local GP who said “they had no idea if they would ever get more vaccines,” while other doctors listed on the federal government’s booking website also did not were able to help.
“I checked with New South Wales Health at the time, and again they had no way for us,” said Cailly.
After August 9th, the mother tried to book with a state government vaccination center but found that “every time I tried to make a booking, it was rejected because of age”.
Cailly said she told NSW Health to notify IT to update the system to allow children ages 12-15 to make a booking.
“And then the lady on the phone said, ‘Oh, you have to check every seven to ten days.’
“Then I questioned the fact that non-priority groups like HSC students were given priority, and then she replied, ‘Oh, everyone calls us with a sense of legitimacy.'”
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In the UK, researchers found that people with Down syndrome were 36 times more likely to die from Covid than the general population.
Cailly said she started talking to her pediatrician about the possibility of getting Zoe vaccinated in February. “We discussed what if she got Covid and he just said bluntly to me, ‘Unfortunately, she has no chance of survival,'” said Cailly.
“She has heart disease, she has respiratory disease. It is always in the back of the mind, the risk for them. “
After filing a complaint through a contact form for NSW Prime Minister Gladys Berejiklian, whose office referred her back to NSW Health who didn’t respond, Cailly began venting her frustration on Twitter last week.
“While I was agitating on Twitter, this guy contacted me and said I should try Healthcare Australia,” she said. Healthcare Australia has been hired by the federal government to vaccinate NDIS participants.
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Cailly was able to use a link that another Twitter user shared with her to book the appointment.
But when she showed up last Wednesday, she was turned away and said the company was not yet required to vaccinate 12-15 year olds.
“[The doctor] apologized very much, he was very understanding and said, ‘Look, I know she has to get the vaccine, she belongs to a priority group, we want her to be vaccinated.’ “
The next day the clinic called Cailly and told her that the contract problem was resolved. “I was there within 15 minutes of getting the call,” said Cailly. “That was a great relief”
Cailly asked how other families with fewer resources or other barriers would fare in navigating the system.
“People find out just by stumbling upon this organization that is actually supposed to vaccinate people with disabilities,” she said.
“If this is the path to vaccination for these children … it must be clear. It has to come from the government, be it Commonwealth or state government, in the end it doesn’t matter.
“But the information has to be made official that this is the way to get these children vaccinated. Because everything happened accidentally, by talking to others, basically taking a risk. “
The advocacy group Every Australian Counts published an open letter on Tuesday from another mother, Heike Fabig, who also had difficulties getting a vaccination appointment for her child.
Mary Sayers, the executive director of Children and Young People with Disability Australia, said her organization had heard similar stories. She said access is currently worst in NSW. “There’s a tremendous amount of frustration I think it’s fair to say,” she said.
By Wednesday, the NSW Health website was accepting bookings for eligible 12-15 year olds at state government vaccination centers.
A spokesperson for NSW Health said that its vaccination clinics “in accordance with advice from the federal government are offering Pfizer vaccine to eligible children ages 12-15.”
“In NSW Health vaccination clinics, appointments can be made for children who are eligible for the eligibility test,” said the spokesman.
“NSW Health has developed a consent process to support informed vaccination of eligible children.
“An online consent form is under development and a preliminary paper-based consent form has been set up.”
When asked whether parents of NDIS participants between the ages of 12 and 15 had advice on vaccinating their children, the National Disability Insurance Agency referred inquiries to the Federal Health Office.
A federal health spokesman said the government is “working with states and territories to vaccinate school-age children in both mainstream schools and schools with disabilities.”
“There are notices on the health website,” said the spokesman. “Vaccination routes are general practitioners, government centers, and centers for disability providers.
“Healthcare Australia is one of the Commonwealth’s commercial vaccination providers, working with disability organizations to deliver vaccinations.
“The parents are communicated regularly and we want to encourage them to connect with their usual ways.”