This month, young people with disability joined the list of people who are allowed to get the COVID-19 vaccine. Being eligible is one thing – but how easy is it to actually make happen? Just as we have heard from so many people with disability and families in our community – Heike and her son Bodhi found out just how difficult it can be – the hard way. This is Heike’s open letter to the government.
Since Monday the 9th of August children aged 12-15 years with disability or pre-existing medical conditions are eligible to receive a covid vaccination.
I am the mother of such a child.
My youngest has an as yet unknown disability. Should he get Covid he will struggle to survive. My husband and I are fully vaccinated and our 18 year-old son will have his second jab in about two weeks.
If you know that our oldest son died in 2018 (aged 17) from pneumonia related to the disability he shared with the youngest, you can maybe imagine my relief when our youngest (born April 2006) became eligible for a vaccine.
So on Monday the 9th, I sat down with my morning coffee and smartphone to book an appointment.
The website of the wonderful vaccination hub at Sydney Olympic Park (run by NSW Health) where I received my shot (as carer, in the b2 category) guided me through the mandatory eligibility section. The answer was prompt: “not eligible, your appointment has been cancelled.” I figured this was simply a case of the website not yet being updated, so I rang them. The phone message sent me back to the website. That was dead end number one.
I remembered we could also contact our GPs, so I rang them. Their answer was equally prompt: “We would love to vaccinate your child, but we don’t have any Pfizer”. I then rang and emailed (depending on what their way of booking was) numerous wheelchair accessible GPs in my area: I found some in Gordon and Lane Cove that had Pfizer but insisted children under 16 were not eligible or said they were not able to give it due to licencing issues. I rang GPs in Pymble, Wahroonga, Lindfield, and Roseville. They didn’t have Pfizer. The vaccination hubs at Roseville and Ryde would only accept bookings online, but there was no way to enter the details for an under 16 year old? Dead end number three.
Then, bingo! I managed to secure an appointment at Royal Prince Alfred via the NSW vaccine finder The only problem was, I could only find an availability for a first shot – and because I could not find a slot for a second shot, I was unable to book at all. Dead end number four.
I rang the Children’s Hospital at Westmead, who have a vaccine clinic in their old ED, and they know my kiddo really well. They don’t do public vaccines (yet?). Dead end number five.
I tried HotDoc and found availabilities – but none would allow me to book an under 16 online, and none accepted phone bookings. Dead end number six.
I was getting desperate.
I was not the only one. The parent grapevine had kicked into action. Some people had managed to obtain an appointment via an NDIS service provider. I was not informed about any of these things (we mainly use mainstream services) but thanks to my fellow activist parents, I received a link to make a booking. The online booking form only allowed a birth year as late as 2006, but since that is my child’s birth year, I thought we were good. I received two text messages confirming the appointments for the first and second shot. Success.
The day before I was due to go, one of my friends went with her child. She was told to go away – this was a private clinic and she should not have been given the link. As her child was booked for a minor procedure the next day, the nurse turned a blind eye and vaccinated my friend’s child after all. Only after I left a comment on their Facebook page was I rung by the company providing the vaccines. They were very apologetic, but no, the booking had to be cancelled. But not to worry, next week was a public clinic, so all I had to do was make a new appointment. Dead end number seven – but also bingo.
This morning (August 16), we rocked up to said clinic for our appointment. And I kid you not, we were turned away. There was some argy-bargy about 12-15 year old children not being eligible, and there only being a nurse available on site and no doctor. Dead end number eight.
Now I really was desperate.
Since I was halfway down to Sydney Olympic Park, I loaded my youngest back into the car and drove to the vaccination hub. I was at my wits end. I needed to talk to a human being who could help.
We were led to the Help Hut via the accessible ramp around the back, and there an angel appeared at the door.
She listened to our predicament, talked briefly to her supervisor, and sat us down. “I’ll sort you out”, she said. And boy, she did! She did the intake (which involved some slight “creative” answering of questions), and hey presto, about ten minutes later the first Pfizer shot went into my son’s arm.
I nearly burst into tears.
The NSW Health staff were amazing. They were understanding, professional, and courteous. They talked to my son (many people are intimidated by his electric wheelchair and talk over him to me) and were very gentle and caring.
I walked away with an enormous sense of relief.
I understand we are in an unprecedented pandemic, but really, does it have to be this hard? Do we really have to spend hours trying to get an appointment, and argue with GPs who claim our children are not eligible? Be turned away because some paperwork is not sorted? Can’t websites be updated? Why is there no information for us?
Thank heavens for our NSW Health angel today. I will sleep better tonight.
Information for people with disability about COVID-19 vaccines – Australian Government Department of Health
COVID-19 vaccine information for disability workers – Australian Government Department of Health