Crucial disability support services have been slashed amid the coronavirus pandemic. Support workers are pleading for testing kits and personal protective equipment, and warning that slow-moving procedures are risking the lives of thousands.

The disability sector has been largely ignored in the government’s stimulus package, with carer unions and the opposition calling for the disability sector to be given the same stimulus benefits — including personal protective gear and retention payments — as the aged care sector.

Romola Hollywood, director of policy and advocacy for People with Disabilities Australia, told Crikey that people with disabilities feel forgotten in the government’s messaging.

“We’re hearing a lot of public messaging and people with disabilities are not mentioned. We feel invisible,” she said.

Naomi Clarke is the chair of Young People in Nursing Homes, an advocacy group aimed at getting people with disabilities proper home support. She lives with quadriplegia and respiratory failure and says the NDIS is moving too slowly to provide support.

“It’s a terrifying time to be dependent — there is no such thing as self-isolation because we rely on other people,” she told Crikey.

Clarke uses the NDIS to travel to a specialised group-fitness centre — now a potentially lethal exercise. She contacted the NDIS to try to reallocate the funding to rent a exercise bike in her home but has to wait until her plan ends.

“I’m in limbo for my exercise and that scares me because my spinal cord is tethering. I don’t want to lose function and muscle,” she said.

When registered stores sold out of personal protective equipment, she contacted NDIS to try to use funds to buy supplies from eBay but was told a response could take four weeks.

“I could be dead by then,” she said. “It’s critical people are trusted to make decisions along the way for themselves. You can’t explain later if you’re dead.”

Kelly Cox, a support coordinator at NDIS provider Karina & Co on the north coast of NSW, says a lack of information from the government had left providers reeling.

“Providers who aren’t medically trained are trying to make decisions on whether it’s safe to work. There’s no information around what is an essential and non-essential service,” she told Crikey.  

Testing and personal protective equipment have not been prioritised for the disability sector, she says, despite people with disabilities often having compromised immune systems. 

“We should be fast-tracked for testing. We have a huge group of people who are at increased risk, and staff who may be going to multiple people’s houses. It could be catastrophic.”

Jess* has experienced service cancellations first hand. She uses a registered mental health provider for assistance with everyday tasks.

While registered providers are obligated to offer continuity of services, in Jess’ case this meant replacing a much-needed shopping trip in the city with a video chat.

“I would have thought my mental health provider should have been the ones most reliable during a crisis,” she told Crikey. “I was angry and frightened, not for myself but for disabled people around the country. What’s going to happen when we need support?” 

Greens Senator Jordon Steele-John slammed the Coalition’s response to people with disabilities. 

“The government’s lack of action in this debate constitutes negligence of the highest order,” he told Crikey. “Every day the government wastes, failing to listen, take action or grasp the threat the virus poses to people with disabilities brings thousands of us closer to harm.” 

So far, the government has announced NDIS plans to be extended by up to 24 months and offered financial assistance to providers including advance payments for one month and a 10% coronavirus loading on some supports. The government is also meeting regularly with disability representation organisations.

A spokesperson for the Department of Social Services told Crikey: “Minister for the National Disability Insurance Scheme Stuart Robert [has] reiterated a commitment to continue working collaboratively to ensure appropriate safeguards and supports are in place for people with disability, their carers and the disability sector as a whole.”

But Steele-John says their actions had very little effect on the ground.

“They’ve got this 10% loading to cover costs [such as sanitation], but they haven’t increased the overall value of people’s plans to match — so in effect, all the agency has done is decreased the overall buying power of clients,” he said. 

The lack of personal protective equipment, sanitary equipment and proper training for staff amounted to discrimination, he says.

“The disability workforce has not been prioritised in the same way health care or aged care sectors have been.” 

Those on the NDIS needed extra funding to purchase direct support worker hours as group events are cancelled, he says, while providers needed targeted financial support to ensure they could retain staff. 

“The amount of time we have to fiddle around and piss around the edges, it is shrinking down rapidly.” 

*Name changed for privacy