Sharon Boyce lives a rich and busy life socially and professionally.
The Toowoomba-based academic, author and advocate's day-to-day activities are made possible by support workers.
However, like most people with disabilities, in the past few months Sharon has been finding support workers harder and harder to get as waves of COVID-19 filter through the community.
"It's unbelievable the impact [it has had]. The fear, 'What am I going to do? How am I going to get out of bed? What am I going to do to get into bed? How can I go to the toilet?,'" Ms Boyce said.
Recently, one of Ms Boyce's support workers had to go back to Nepal.
This coincided with another taking maternity leave and another coming down with COVID-19.
"Until people see what has to be done, they probably wouldn't understand how difficult that is, and how much training has to go into it," Ms Boyce said.
"Things like using a sling and a hoist getting into bed — that process is very long and complex."
Ms Boyce has made sure her sisters have been trained in some parts of her care, but her complex physical disability — which started as childhood arthritis — requires specialised care that is not always readily available.
She said she was forced to try to source other support workers from other agencies and train them up on the job but, even then, she found there were few available.
"I felt like I was a little bit vulnerable, that there wasn't going to be that same level of safety that I had always had," she said.
"It made a real difference because with hardly any staff trained there on the spot, and then the overlay of COVID affecting those people."
She said that, while in the past international students studying health disciplines have been a source of new support workers, border closures had had a big impact.
Even now that borders were open once more, she said, there had not been as many students coming through.
"If you don't have someone who's going to be prepared to come in and do that care, then, literally, you won't survive — you'll be as statistic," she said.
"The struggle really is real to actually have carers to support that process inside people's homes," she said.
'People are having to hit pause'
In 2018, Michael Metcalfe founded an online platform that serves as a "digital match maker" for NDIS participants and support workers.
He said he realised there was a need for more flexibility and a more efficient way to connect support workers and participants.
"There's a lot of turbulence out there right now," Mr Metcalfe said.
"A lot of people are either withdrawing from the workforce, [or] people are needing to isolate if they are testing positive or they are suspected positive," he said.
"People are changing their locations as well."
Mr Metcalfe said that, in recent weeks, the demand for people requesting urgent support and advertising for support workers had increased 100 per cent "week-on-week".
He said many organisations that would normally provide support workers are having trouble finding workers.
"People are looking for all types of services. It could be needing personal care at home to get up and go about their day. It could be assistance in getting out in the community and just, in general, building their capacity so that they can live the life they're trying to live," he said.
"A lot of people are missing out on the daily support that they are used to and that can have a real impact on their life and [on] their family.
"We've had participants getting in touch, saying they're not wanting to leave the house now during the Omicron outbreak, or people who are simply unable to continue with the goals they had."
'Long standing' shortage 'getting worse'
Karen Stace — a senior manager at the peak body National Disability Service — said an NDIS workforce plan released last year estimated the industry would need an additional 83,000 workers in coming years.
"We do an annual market survey each year and our market survey for 2021 indicated that, of providers who were part of that survey, 70 per cent … were having difficulty in recruiting disability support workers, and that did increase from about 60 per cent the year before," Ms Stace said.
Ms Stace said a lack of skilled migrants, who would normally be coming into the country has exacerbated the worker shortage and "decreased the pool" of workers available.
When skilled workers do return, Ms Stace said, the industry will be in competition with other industries that are also experiencing shortfalls.
She said workers required to isolate because of COVID-19 infections or becoming close contacts also put pressure on providers.
"That's made it very difficult for providers to basically keep, retain and be able to meet the workforce needs they [already] had," she said.
Ms Stace she would like to see a 10 per cent uplift in NDIS pricing to help providers recoup the high costs of PPE and overtime, and to attract more people to the industry.
"NDIS participants get a budget in their plan that they're able to use to meet their support needs, and their prices are set by the National Disability Insurance Agency (NDIA)" she said.
"If participant budgets are increased, which enables providers to claim higher prices from the NDIA, some of that would enable them to pay people a better wage."
She said the budgets have remained the same throughout 2021, but underwent some small changes in 2020.
"The pricing is based on that sort of level, of around 30-odd dollars an hour. There's no real capacity for organisations to pay more than that because they're … bound by some price limits that make it really difficult."
Ms Stace said she thinks the industry could benefit from "targeted initiatives" to recruit and train staff, particularly in areas where it is difficult to find staff, such as regional and remote areas.
"Demand does outstrip supply, particularly in certain areas," she said.
"I think it's really important that we start to see some efforts around increasing the pay for disability support workers and community support workers."
Alone for the night, ready to call for help
Wayne Maitland lives just 30 minutes outside Cairns in Far North Queensland.
Like Ms Boyce, he self-manages his NDIS package and employs his own support workers who help him bathe, exercise, prepare meals.
He also works as a counsellor for others with disabilities.
Recently, the amputee — who has a degenerative joint disease — discovered how vulnerable his situation was when his wife needed to go to hospital at short notice and one of his support workers was a close contact to a COVID-19 case.
"It just threw everything. I've got a second support worker but they also support other people," he said.
"The closest real support is my granddaughter and she is 22 kilometres away and she's got two children under six years of age."
He said he felt extremely anxious about how he would manage.
"I actually spent the night here on my own so, if anything had really have happened, triple-0 would have been the first call I would have had to make," he said.
Mr Maitland said he reached out to disability service providers to try to find emergency support workers but there were none available.
He said he believed that the level of study required to complete a Certificate III was deterring some people from becoming disability support workers.
Instead, he said, he would like to see different levels of support workers created, who would need fewer qualifications so they could be employed just for community and social activities, in order to take pressure off the system.
"We lost a heap of support workers at the age of 55 years of age and over. There was one lady I know, she was 73 and still doing support work, but the moment they were told that they had to go on a computer, well a lot of them decided it was just too much trouble."
