Children with suspected disabilities enduring 12-month wait for diagnosis in parts of Sydney

Stephanie Dalzell

Children with suspected disabilities are waiting up to a year for a diagnosis in parts of Sydney, leaving parents at "breaking point" and doctors accusing the NSW Government of dropping the ball.

Key points:

  • In Campbelltown, on average, children had to wait 12 months before being assessed
  • Parents cannot access disability funding before their child is assessed
  • Experts say treatment is crucial early in development

A diagnosis, typically made by a specialised team including a paediatrician, occupational therapist, speech pathologist and social worker, is required for a child with a disability to access funding.

However, figures obtained by the ABC show children in Campbelltown, in Sydney's south-west, were left to wait an average of 12 months before receiving an assessment and diagnosis last year.

The Nepean Blue Mountains Local Health District recorded the same waiting time, while in Fairfield, it was eight months.

It was a different story in the South Eastern Local Health District, which includes hospitals like Prince of Wales, where children waited just three to six months.

Campbelltown paediatrician and former Labor MP, Dr Andrew McDonald, said it was postcode discrimination.

"This means that your future depends on where you live, if you have a disability," he said.

"In autism, intervention below the age of five is crucial to the long-term outcome, but if you have to wait 12 months to get appropriate diagnosis and therapy, that is 12 months wasted — that will never be got back — and a young child will have a lifelong handicap from a lack of services that should be available to them."

A group of women sitting.PHOTO: Mothers share stories in the support group at KU Starting Point Macarthur. (ABC News: Steph Dalzell)

Larraine Brown manages KU Starting Points Macarthur, a support service centre near Campbelltown for children with disabilities.

She said many parents were in a state of limbo.

"They don't know where to turn," she said.

"If a child ... is put on the waiting list at two, and they are not given a diagnosis until the age of three, we've missed a really crucial stage in their development."

Parents at 'breaking point'

Each week, the parents gather at the Macarthur centre to share their stories. They all read the same.

Krystal Schneider's daughter waited 13 months for an assessment.

"If you don't know what's wrong with them, what are you meant to do in the meantime?" she said.

A child sitting at a table.PHOTO: Jonathan Phelps is all smiles while at KU Starting Points Macarthur. (ABC News: Stephanie Dalzell)

"It's such a struggling period to go through, people are at breaking point," she said.

Rebecca Winters' eldest son Connor waited one and a half years.

Her youngest son started school while he was waiting for an assessment, and missed out on funding.

"He's now having some struggles at school and I believe it's because he didn't get the diagnosis early enough to get help."

Government 'needs a statewide plan'

President of the NSW Australian Medical Association (AMA) Brad Frankum said it was crucial the waiting lists were reduced.

"The first thing the Government needs to do is understand the problem," he said.

"I don't believe we've kept up very well with expanding paediatric services more generally across the state in recent years, and I'd call on the Government at this point to really look at having a statewide plan for paediatric services."

Health Minister Brad Hazzard said he would meet with the AMA to discuss the issue.

"While there is variation in how each local health district implements comprehensive diagnostic assessments, I am assured by the department that all urgent cases are prioritised on individual clinical need," he said in a statement.

"But if more needs to be done it will be done."