Rebecca Kelly's 10-year-old son Ryan has Down syndrome and is medically complex, so if he was to catch COVID there is a chance he will die.
Trevallyn-based Dr Kelly, who is the Down Syndrome Tasmania president and a parent advocate on the National Disability COVID Advisory Committee, has an ever present concern about the devastation the National Plan's vaccination targets could reap on her family.
With the state surging towards opening the state up to the rest of Australia as vaccination rates close in on 70, 80 and 90 per cent, she believes important discussions need to take place to protect a community she said had been neglected so far by the vaccine rollout.
We'll go from a COVID free state to opening up at 80 per cent ... the consequence of that decision is COVID will mostly impact vulnerable people.Down Syndrome Tasmania president Dr Rebecca Kelly
"Where's the planning for the influx of people with chronic health conditions and people with disability to hospitals?
"There needs to be better evidence that this community has been thought about."
The vaccination rollout focused on 1a and 1b communities targeted NDIS participants and providers, but Dr Kelly said there was a number of people in the disability community who sought out private providers and had missed out on vaccination accessibility.
Dr Kelly said examples from the mainland where a small percentage of children were being hospitalised with the Delta strain of COVID laid bare what could happen in Tasmania.
Ryan's disability and co-morbidities leave him as one of the more vulnerable people in Tasmania, a place where he has been able to play sport, go to school, and generally go about his life as normal.
Dr Kelly said with the looming changes to the state's COVID approach, she was considering how his life would change, and whether he might need to pull him out of school, and even remove her other children from schooling as well.
Dr Kelly's perspective is nuanced. Not only is she the doting mother of her son and an advocate for people with Down syndrome to varying levels of government, she is a mathematician and has a developed understanding on the Doherty Institute modelling upon which the vaccination rate goal is based.
"I know how this modelling works, and I know that it's nonsense," she said.
"I've seen nothing to say 80 per cent is an appropriate target ... And it's not 80 per cent of the community, it's 80 per cent of the eligible community.
"I'm really concerned about the under 12 age group. There have been outbreaks in schools, Ryan has a six-year-old sister, if she brought COVID home, there's a good chance he'll die."
She said her family faced a "difficult decision" going forward, and that was one many families in a similar situation would be facing.
"Once we've moved to open up, people with a disability will probably lose access to the community," Dr Kelly said.
"For kids with disability, this will just be furthering the disadvantage they've already faced. It's just another place where they are being held back."
Premier Peter Gutwein was contacted and asked how the government was working to protect the disability community. He was also asked if he would advocate to National Cabinet to ensure the disability community in Tasmania was adequately protected.
A government spokesperson said the vaccination process was continuing.
"Tasmanians over 16 years and living with disability or underlying medical conditions, as well as carers and support workers of people with disability, are being prioritised by the Tasmanian government to receive the COVID-19 vaccination," they said.
"The Commonwealth rollout in disability residential settings with two or more residents is underway in Tasmania.
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"We will continue to work with vulnerable cohorts to ensure they are kept as safe as possible as we look to open in line with the National Plan."
A Health Department spokesman said the disability community was not being left out.
"As some of the most vulnerable members of our community, we have been committed to providing accessible vaccination opportunities to Tasmanian NDIS participants from the outset of the vaccination program," he said.
"We have worked in close partnership with state and federal government departments, the National Disability Service, NDIS providers, and third sector organisations to ensure NDIS participants have had specialised access to COVID-19 vaccination."
Mandatory vaccines for disability care sector?
Dr Kelly's concern was one echoed by much of the disability and group care sector, an area in which there is a high volume of interaction with people with disability.
St. Giles chief executive Andrew Billings said the organisation was "alert, concerned, and planning for" the state to open up, and COVID cases to start emerging.
"One thing though, from a Tasmanian perspective, is we are able to observe the lessons interstate, and we have a strong vaccination rate," he said.
He said St. Giles had been proactive about encouraging staff to become fully vaccinated and had provided a vaccination hub at its workplaces across the state to boost vaccination numbers for workers.
Mr Billings said at least 60 per cent of the workforce was fully vaccinated, and more than 80 per cent of participants had had both doses.
Fellow disability care provider Li-Ve Tasmania maintained similar levels of vaccination coverage as St. Giles.
Operations general manager Nicole Cumine said staff of Li-Ve were almost 60 per cent fully vaccinated, while client rates were about 90 per cent.
She said the organisation supported mandatory vaccination to be rolled out in the disability care sector.
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"It's only a matter of time until it does become mandatory, and we would certainly be supporting of that position," she said.
Ms Cumine said concern was obvious throughout the disability care sector, a result of a lack of consideration for the disability community.
"Where you see angst is opening up to possible high levels of infection, how does that actually look for us?" she said.
"Until we seriously start talking about this, we wont know what it looks like for those vulnerable communities.
"People are keen to see the detail so they can know what the impacts might be for them, and consider what their life might look like."
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