Hope in young hands

Not long after the sun breaks dawn on a wet August morning, Sandy Hely empties the dosette box with today’s cocktail of half-a-dozen pills into a cup. She draws back the oral syringe to 2.5ml of cloudy, white liquid and lays it all on a tray. She walks it up the stairs to Harper, her 20-year-old daughter with a rare condition called ZTTK Syndrome. As if she’s on autopilot, Harper knocks back the cup of pills like it’s a glass of water and pushes the syringe into her mouth without a blink away from her iPad, knowing she’ll have to do it all again 12 hours later.

The morning roads begin to fill with a peak hour rush when I arrive at their City Beach home as Harper’s support worker for the day. Play School fills Harper’s pink-coloured room with nostalgic music as she greets me with a smile and a cheery “hey Gracie!” As I help her make a strawberry smoothie for breakfast and we plan our day, I can see the weight lift off Sandy’s shoulders. She now has the day to focus on her own needs and that of her other three children. “We are very aware that the other children often feel like they’re not prioritised so having a support worker means I’m able to give them the attention they need, I think that’s the fundamental thing,” she says.

Sandy (left) and Harper (right) in their family home. Photo: Grace Burmas.

Not every family is as lucky as the Helys.

The demand for support workers in the disability sector has grown exponentially since the roll out of the National Disability Insurance Scheme (NDIS) in 2016. As more people become eligible for funding under the NDIS, the supply of workers struggles to keep up with the growing demand. The disability sector is now falling short and the call for more young support workers is louder than ever. Why would people, especially young people, want to spend their precious time supporting someone else?

Harper got her NDIS plan in 2019 and Sandy says it opened up her world. Photo: Grace Burmas.

National Disability Services (NDS) is the peak body for non-government disability services in Australia. It says the sector is short of roughly 120, 000 workers across the country. Julie Waylen is the WA state manager for NDS and says in Western Australia alone, there are 20, 000 vacancies. “We know the disability sector is one of the largest and fastest growing sectors.

“We also know competition for workers is really high and it’s very difficult in terms of the demand for workers generally in all industries,” Waylen says.

There are more than 430, 000 people supported under the NDIS, looking for services to spend their funding on. You don’t have to search far to notice the need for workers. Facebook groups for support workers are inundated with posts. Providers such as Activ are sharing the stories of their workers on social media to inspire more. Even the federal government released A Life Changing Life campaign to entice people into the support sector.

“We know the disability sector is one of the largest and fastest growing sectors.”

Julie Waylen

The cry for support workers is even louder in Aboriginal communities where the rate of disability is higher than that of non-Aboriginal people. Kerri Colegate is the director of KM Noongar Consultancy Services who run a yarning group for Aboriginal people with a disability. She says having Aboriginal people support fellow Aboriginal participants is vital, but the shortage is severe.

“It’s very, very obvious that there really is a lack of Aboriginal support workers out there, it would be absolutely fantastic if we could get some more.

“I believe that it’s a great field to work in and very rewarding, I also think it helps overcome a lot of the shame that occurs for Aboriginal people with a disability,” she says.

Support groups like Colegate’s are combatting the shortage of workers by providing culturally-focussed support to multiple people at a time. She says there is a lot of work to be done recruiting more Aboriginal support workers, but she feels optimistic about the future of the industry.

Among all areas within the sector who are bearing the brunt of the shortage, runs a common thread of hope. Young people. They usually find their feet in the workforce by brewing coffees or selling clothes, but many young people have skipped past the possibility of having a casual job that cares for another individual. I know I did.

The discrepancy between the high percentage of young people under the NDIS and the low percentage of young support workers is pronounced. Are young people turning a blind eye? Colegate says most young Aboriginal people don’t know support work is an option for a job. “We were always the primary carers in our own homes and our own kinship groups and do our own caring.” She says the notion of being paid to care for someone you don’t know is a foreign concept to some.

Waylen pins it down to hesitancy, which she says stems from a misunderstanding of what the job actually is. “It is really supporting people with a disability to be able to reach their goals, so the person with the disability is in control and you’re supporting them in their choices,” she says. The idea of having to care for someone in the way a nurse or aged care worker does can deter young people from a caring role. Waylen says support work differs from these lines of work in its attention to emotional support.

There is a noticeable gap in the market for young support workers. Infographic: Grace Burmas.

People in their 20s are trying to navigate their own emotions through the convoluted maze of the world, so how is there space to help someone else do the same thing? From my experience, there is a link between the two. There is no difference between the way people living with a disability and people living without one find mentors in their life. I’ve found that Harper’s curiosity about the way I play out my early 20s, makes me reflect on my decisions in a nuanced way.

Waylen says this is the reason young NDIS participants want young support workers. “What’s important for people with a disability is to be able to reflect their needs, goals and aspirations, so having young people work with young people is really appropriate,” she says.

I am only one year older than Harper and her mother Sandy says that proximity of age is important. “I think she wants to see herself replicated in the experiences she’s having, like any young person, that’s just a normal part of growing up and she feels the same as we all do,” she says. 

Harper and I came to work together through our parents being friends. Video: Grace Burmas.

I am among many young people who entered the disability sector with no experience. Liam Borbas is also among them.

Borbas is a 22-year-old support worker who came to the disability sector through word of mouth. He says he originally got into the field by applying for jobs on Gumtree and Seek. “Providers will post adds seeking workers like any other casual job,” he says. Then when Borbas moved intrastate, he posted a profile of himself to the Facebook group called Support Workers, Carers and Families in Perth. His post attracted a lot of attention. He says he got two jobs and still gets comments of interest to this day. 

With no prior experience or any health work qualifications, Borbas gained training and experience gradually through his provider. “I feel like it’s one of those jobs where there are some things that are handy to learn in training but it’s mainly if you have the personality, the altruism and the mindset for it, it’s a great job.

“I think young support workers are absolutely vital because it benefits everybody.”

Sandy Hely

“I spent years making coffee for people and you make someone a cappuccino and it’s like thanks mate and it’s five minutes of satisfaction for that person’s day, but working support work, you can see that you’re actively making an impact on someone’s life and you feel good about the work you do,” Borbas says.

Unlike me, Borbas supports someone who is double his age, proving young workers are not confined to only care for fellow young people.

Liam works with Bryn three times a week, including taking him to his football games. Video: Grace Burmas.

As a young person, it can often feel like the weight of the world’s problems are placed on your shoulders. The support worker shortage differs because it doesn’t work as a one-way street. Sandy says employing a young support worker creates a type of symbiotic relationship where both individuals learn and benefit from the experience. “I think young carers are absolutely vital because it benefits everybody,” she says.

“What’s good for people with a disability is good for everyone, so you create a really cohesive community for people.”

Julie Waylen

Waylen agrees with this notion. “What’s good for people with a disability is good for everyone, so you create a really cohesive community for people,” she says. This is what drives the disability sector. Community. Support work doesn’t just help the individual with a disability, it helps the entire community around that person. Whether it’s giving siblings more time with their parents, or the parent or guardian more time with themselves.

When the sun is reaching the horizon, I leave work. After doing hairstyles, making breakfast, walking the dogs, doing physio, going out for a chai latte, making lunch and watching Glee, the day is done. Harper waves me out the door with a joyous “I’ll miss you girly.” With a smile on my face, I reply “I’ll miss you too.”