People with disability are at much bigger risk of getting very sick or dying from COVID-19. But getting a vaccine has been really hard for lots of people in our community, and vaccination rates are still too low. So we have been asking people with disability, families and the people who support them to tell us about their vaccine experiences, so we can tell the government what they can do to make it easier. Here’s what we have heard so far…
“What a mess!” That’s how the COVID-19 vaccine rollout has been described by one of the many people with a disability who have shared their experiences with us. People have told us loud and clear that there have been big barriers from the get-go when it comes to getting the vaccine.
The too-hard basket
Unfortunately, we heard from lots of people about things that made the process too hard. Things like:
- Booking appointments
- Finding disability-specific information about where to go
- Not being able to get priority access
- Hard to find out and prove if you’re in a ‘priority group’
- Being turned away
- Being given inconsistent and contradictory information
- Hard to find accessible vaccine hubs
- Hard to find sensory-friendly vaccine hubs
- Hard to get families and support workers vaccinated at the same time and place
- No options, or long waits for people who need to get vaccinated at home
- Not sure what to do for people with needle or medical phobias
- No options, or long waits for people who need sedation
- Being given the runaround
- Waiting for the vaccine they want to become available
- Hotline staff not having answers or knowledge about disability access
- Not enough support or info for people with disability who do not live in group homes
- Not being able to travel
These kinds of issues were echoed in the damning Disability Royal Commission Report released in late September, which said “the conduct of the vaccine rollout, especially to people living in residential disability settings and disability support workers was ‘seriously deficient’.”
What makes this all even worse is that in 2020 the Disability Royal Commission had already had a go at the Federal Government for not including people with a disability in their initial COVID response, and for their failure to consult people with a disability or representative groups when developing their strategy.
So how could things be better?
We have heard plenty of excellent ideas about how to make it easier for people with disability to get vaccinated.
The most common things people suggested were about:
- Making home vaccinations possible and easy (this was by far the most common request)
- Mobile vaccination units that come to you, or go to somewhere local that is safe, familiar and accessible
- Having your usual trusted GP or health professional have access to enough vaccines so you can go to them
- Having someone to find and book appointments specifically for individual people with disability (and their families too if they want)
- Making sure information is available, accessible, and easy to find and understand
- Having someone trusted to contact, who can offer practical help and answer your questions about getting vaccinated
- Having someone trusted to take you to your appointment and back
What has already been helpful?
We are really happy to have heard from some people that getting the vaccine was a good experience for them. Things that helped included:
- Service providers organising vaccination sessions for the people they support (and sometimes their families too), at their service
- People with disability, families and carers being treated with respect, kindness, and patience
- Staff at vaccine hubs making sure processes were accessible, smooth, welcoming and easy
- Being able to easily find out where to find accessible vaccine hubs
- Having someone to make the bookings
- A person with disability’s family members or support workers being able to get vaccinated at the same time and place
- Quiet, welcoming to all, and sensory-friendly spaces
- The Disability Liason Officer service in Victoria
- Help getting to and from the vaccine hub or locations
- Social stories, videos, and Easy read guides to getting vaccinated
Kudos to all the health workers who have made this possible. We’d love it if the health system was this accommodating all the time!
Most of the people who had an easier time were people who had support from someone advocating strongly on their behalf, like a family member or service provider. People with less support have found it much more difficult.
Over the last couple of months, governments have been doing a lot more to try to make it easier for people with disability to get vaccinated. But States and territories are opening back up while a huge amount of people with disability are still unvaccinated, leaving many people concerned about risks to their health. The disability community is strongly advocating for the availability of home vaccines.
And, now with Pfizer vaccine booster shots being approved, with roll out expected from November 8th, people with a disability will continue to need easy access to the vaccines. Given the challenges with the initial roll out, it remains to be seen if the Government can deliver what is required, and in the right time frame.
Want to tell us about your experiences?
Just head over to the feedback form on our website and tell us about what has been good or bad in your experience.
Vaccine information and resources for people with disability, families and workers
Our friends at IDEAS have listed Easy Read information about vaccines, along with loads of other fact checked COVID information. Plus you’ll find social stories here and here, along with Auslan information here. Creaky Joints has also brought together COVID-19 Vaccine Information for Immunocompromised Patients.
Need help to book an appointment? The Disability Gateway has now said they can help with this.
Call 1800 643 787 – Monday to. Friday – 8am – 8pm.
You can also book an appointment online for an AstraZeneca or Moderna vaccine at a local chemist.
If you live in Victoria there is a Disability Liaison Officer Service that can help people organise their vaccines.
Some people may also be eligible to get the vaccine at home.
Each state and territory has different arrangements about how the vaccine is being rolled out, so please check for your state.
- Victoria – Vaccine information for people with a disability
- Queensland – People with disability, including care facility residents
- Tasmania – Disability information (under ‘COVID-19 vaccination information’)
- Australian Capital Territory – Vaccine information for people with disability
- New South Wales – Accessible vaccination services.
- Western Australia
- South Australia – People with disability
There is an NDIS COVID-19 vaccine payment for some disability support workers in NSW, Vic, WA, ACT and the NT. This is to cover any extra costs that may happen while helping people to get their vaccine.
There are also some temporary NDIS COVID19 measures available, but best to check in with your support coordinator about these to make sure that you are eligible.