Two-year-old Harriet spent seven months – more than a quarter of her life – on a wait list for speech and occupational therapy.
This is typical in the Northern Territory capital of Darwin, where kids in need usually wait between seven and 12 months for help.
And with early intervention critical, long wait times mean some therapies can be less effective by the time clients are seen.
Harriet's mum Elena Madden said her daughter was born with a rare genetic condition called septo-optic dysplasia, which affects brain development and can cause seizures.
Ms Madden said the family contemplated travelling interstate to see a specialist before a spot opened for their daughter.
"We want to set Harriet up to lead the best life that she can and as parents we want to support her in every way that we possibly can," she said.
"For us, any longer wait wouldn't really have been okay because we know these early years are critical for her growth and development."
Increase in wait times, as demand grows
Amy Southwood is the manager of allied health services for the disability support service, Carpentaria, and a speech therapist by training.
She said both wait times for Northern Territory families and the demand for allied health services had "increased quite significantly" in the past few years.
Ms Southwood said difficulty in recruiting staff to the territory had contributed to the delays for clients and some families were choosing to move interstate to access treatment sooner.
During the pandemic, Carpentaria had expected more interstate allied health workers to make the move to the then COVID-free NT, however Ms Southwood said "the opposite happened".
"More people were then prone to staying with their families interstate than making the move up north with fear that with border restrictions and lockdowns, they wouldn't be able to get back down to their families in a timely manner," she said.
Ms Madden agreed the territory was in "desperate need" of more allied health workers.
"I'm a born and bred Territorian I think it's a great place to live," she said.
"I would hate there to be a situation where families like ours, who are passionate and love the territory, have to leave to access services for their family.
'People are fed up with the waiting'
National Disability Services NT manager Mick Fallon said the lengthy wait times could be "really dire" for some clients.
"People really rely on allied health support to be able to lead good lives, being able to access allied health in the territory is a real struggle though, both in Darwin and in rural and remote areas," he said.
"Waiting lists can be extreme."
Mr Fallon said wait times were even longer in rural and remote locations, which typically relied on fly in, fly out health workers.
"What you've got might be fantastic support, but you might need to wait for 12 months for that to come through," he said.
Mr Fallon said a shortage of allied health workers meant some clients, both adults and children, had been going without treatment.
He was concerned some clients, especially in remote areas, had disengaged with allied health services due to the challenges seeking treatment.
"I don't think the data would really reflect how prevalent that need is because I think people are fed up with the waiting, especially in the bush," Mr Fallon said.
Mr Fallon and Ms Southwood both encouraged young professionals to make the move up north to help local service providers meet demand.
Support 'essential for kids'
Mr Fallon said allied health support was "essential for kids, especially".
"Having that support intensely delivered when someone is young will reduce their reliance on the [National Disability Insurance] Scheme and formal supports later in life," he said.
"If it's not there, those kids aren't able to develop the way other kids are able to develop and their reliance on formal supports will increase and potentially be there forever."
Since starting speech and occupational therapy, Harriet's communication skills and vocabulary has improved.
Speech therapist Megan Adams met Harriet at her initial assessment.
"When I first met her, she occasionally said a few single words.
"Now we're seeing her frequently use words for what she wants, what she doesn't want, her favourite things and to be able to socialise and play a lot more with peers and family."
Ms Madden said speech and occupational therapy had given her the skills to better communicate with and understand Harriet using basic signs and language.
"It's really critical for us as a family that we have access to this service in a timely manner," she said.
"We want to encourage other parents to do everything we can to do everything they can to get that support earlier."
