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‘Breaks your heart’: Rural kids waiting on critical development services

Natural disasters and the pandemic have compounded the scarcity of support for children in regional Australia, putting them at risk of a cycle of disadvantage. Former Citizen cadet Jordyn Beazley reports in this special project, in collaboration with The Guardian Australia.

‘Breaks your heart’: Rural kids waiting on critical development services

Teacher Taryn Stephens working with her son Lachie, who has a speech disability, in Warren in western NSW. Stephens says children in the region are not getting the health and education support services they need. Photograph: Mike Bowers/The Guardian (with permission).

Words by Jordyn Beazley
 

At St Mary’s Parish school in Warren, Taryn Stephens can tell which of her pupils haven’t yet had luck accessing the help they need.

“I can point every single one of them out,” the teacher says. “There’s a lot of them.”

Stephens says it is this health and education support, regularly available in the city, that determines the course of a child’s life. What they need is specialists who help children read and write, articulate themselves, regulate their emotions, and socialise.

But these services are scarce in Warren, a six-hour drive north-west of Sydney in the Orana region of New South Wales. It’s the same story across the central west and far west.

“It breaks your heart because these children deserve every opportunity and they’re not getting it purely because of where they live,” Stephens says.

“It’s wrong. It is so wrong.”

An estimated 180,000 children in rural NSW are in need of childhood development services that are just not available in their region, according to the healthcare charity Royal Far West.

Amanda Wilson, Royal Far West’s general manager of child and family services, says the number of country children needing development services has grown by 23% every year for the past decade.

Speech pathologist Anna Carter in her rooms in Nyngan. Photograph: Mike Bowers/The Guardian (with permission)

Speech pathologist Anna Carter in her rooms in Nyngan. Photograph: Mike Bowers/The Guardian (with permission)

She says this is because of the cumulative stress of drought, bushfires, the pandemic and floods, coupled with the tyranny of distance, the scarcity of health services, long waitlists and cost.

“We estimate that 180,000 children across rural and remote Australia need support for their developmental health and future wellbeing, yet cannot access support because of where they live,” Wilson says.

Children living in rural Australia are twice as likely to start school developmentally vulnerable than city kids, Royal Far West says.

In central west and far west NSW, there were more than double the number of children who were developmentally vulnerable in two or more ways than the rest of NSW, the region’s primary health network found in 2015.

Yet demand for early intervention services for children outstrips the number of specialists. A decade ago there was a gap in city-versus-country services, with approximately 10 speech pathologists per 100,000 people in rural areas, and 26 per 100,000 in major cities, according to Royal Far West.

In February, Speech Pathology Australia found there were enough job advertisements to rehire 13% of the speech pathology workforce.

“The demand is massive,” says president Tim Kittel. “It’s growing at an exponential speed, and it’s outstripping how many professionals we have. It’s terrifying.”

Nichole Jenkins, who runs an early childhood education business in western NSW, recalls that 20 years ago less than a quarter of children in preschools needed developmental support. Now, she says, it’s about 90% of children, “and a lot of it is really significant”.

“Working in the childhood space, we can already see at three years old exactly where a child is headed if they don’t get support,” she says.

A study published in the International Journal of Speech Pathology found developmentally vulnerable children are at risk of a cycle of disadvantage stemming from behavioural issues and learning difficulties. A high proportion of young Australians who’ve committed crime have untreated speech disorders, the report states.

‘Frustrating’ hunt for help

The battle to access allied health services affects Stephens personally.

At her home, a hobby farm just outside Warren, she regularly takes her three-year-old son Lachie through a list of games to help with his speech disability. With a cheeky smile, Lachie cups his hands around a pretend birthday cake, gulps in air then puckers his lips four times to blow out the imaginary candles. It’s a lip protrusion exercise.

Stephens’ husband takes an afternoon off work every week to take Lachie the 1.5-hour round trip to Gilgandra to see his speech pathologist. The cost is aided but not entirely covered by the national disability insurance scheme (NDIS).

Vivianne Prince, from Maranguka Community Hub, says it needs to be easier for Aboriginal families to navigate and interact with services. Photograph: Jordyn Beazley/The Guardian

Vivianne Prince, from Maranguka Community Hub, says it needs to be easier for Aboriginal families to navigate and interact with services. Photograph: Jordyn Beazley/The Guardian

Soon, their speech pathologist will go on maternity leave, and Stephens is nervous about what this gap in support will mean for her son’s development.

“Early intervention is obviously key for success and we just can’t get it. So as much as we’re getting the [NDIS] funding for things, which is great, we actually won’t be able to spend it if there’s nobody here to give us those services,” she says.

“If you don’t spend the money, you lose it. So it’s frustrating.”

‘Down to the wire’

An evaluation of the NDIS in the early childhood intervention sector by the University of New South Wales in 2018 found a lack of specialists in rural and regional Australia has compromised the scheme for country communities.

A spokesperson from the National Disability Insurance Agency (NDIA) said it recognised the challenges faced by rural and remote communities accessing services and is working to address the gap in specialists.

The NDIA has implemented higher price limits in remote and very remote areas in response to higher costs involved in accessing services, the spokesperson added.

The federal regional health minister, Dr David Gillespie, told Guardian Australia: “As a former regionally based doctor, I am acutely aware of the health workforce recruitment challenges across regional, rural and remote Australia.”

Gillespie said the Coalition’s recent budget included more than $290m to improve healthcare in rural and regional Australia and to attract healthcare staff.

“This builds on the long-term $550m Stronger Rural Health Strategy which has already grown the number of full-time equivalent GPs, nurses and allied health professionals in regional, rural and remote areas by 5,000 since 2018.”

Jenkins recalls 10 years ago when specialists frequently delivered outreach services, but it has declined.

Alison Campbell, a specialist in regional NSW, says the change occurred in 2011 when the federal government took over funding primary healthcare from the states.

Campbell says under successive Labor and Coalition governments the funding for allied health services has been short term, contributing to a high turnover of specialists.

“It always comes down to the wire,” she says. “The staff we have end up looking for jobs elsewhere because the federal government agencies don’t pull together quick enough to guarantee the service will be delivered for another 12 months.”

An hour’s drive west of Warren is the outback town of Nyngan. Anna Carter opened the town’s first private speech pathology practice earlier this year.

Within two weeks of opening, Carter’s books were full. She had parents calling from as far away as Dubbo, almost two hours’ drive away.

“There hasn’t been a day I haven’t got a new referral, which is crazy,” she says. “I get parents approaching me in the supermarket asking what they can do.”

Carter is worried that telehealth is increasingly seen as a fix for the lack of specialists in the region. She says while the system is beneficial for some children, it doesn’t cut it for kids with complex needs.

In Bourke, Royal Far West runs a screening program to help diagnose and treat children with developmental challenges. Without any permanent allied health staff in town, educators are reliant on telehealth.

Vivianne Prince, a Wangkumarra and Ngemba woman and a director at the Aboriginal-led justice reinvestment program Maranguka in Bourke, says while telehealth helps fill a gap there is still a need for face-to-face services.

Prince says access is the main issue, but there’s also an element of fear for Aboriginal families.

“As an outcome from past lived experience, some Aboriginal families are fearful from having close relationships with government departments, for fear of being judged in their capacity to parent,” she says.

“We’ve just got to find a way to advocate, navigate and interact with the service system to make it easier for our families.”

Travel for this project was supported by the Melbourne Press Club’s Michael Gordon Fellowships program

This story is co-published with The Guardian Australia. Reporter Jordyn Beazley is a former cadet at The Citizen, and a graduate of the University of Melbourne Master of Journalism program. 

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