The average waiting time for a child neurodevelopmental assessment in the public system has blown out beyond two years at several services across Greater Sydney, while other services have slashed their waiting lists by tightening the eligibility criteria.
The long waiting times mean children miss out on crucial early intervention for developmental delays or neurodivergent conditions such as autism, or that paediatricians “fudge” a diagnosis to get the child the help they need.
Professor Adam Guastella, the Michael Crouch chair for child and youth mental health at the University of Sydney’s Brain and Mind Centre in Westmead said waiting lists were tracking at six to 18 months before the pandemic – and now up to two or even three years. He has seen the figures for two services in Greater Sydney and has spoken to service directors across the state.
“That’s really an important delay considering that families are typically noticing potential concerns between the ages of two and three and then often not getting an assessment until five or six,” Professor Guastella said.
“In between that time, kids may have started school and there’s a lost opportunity for early intervention to deliver supports that can make a difference for the child.”
Professor Guastella said the prevalence of neurodevelopmental conditions suggested about one in 10 children require an assessment of this kind, which examines a child’s language, cognitive and social development.
“Those with financial resources can generally get an assessment much faster ... For many families that’s out of reach.”
Professor Adam Guastella, University of Sydney Brain and Mind Centre
Mike Freelander, a federal Labor MP in south-western Sydney who also works part time as a paediatrician at Campbelltown Hospital, said best practice was for an assessment by a multidisciplinary team, but paediatricians often provided a diagnosis without a full assessment, so the children could get help sooner.
“The paediatrician knows that there’s a long waiting list to get a proper formal assessment, so the tendency is to give them a diagnosis of intellectual handicap and autism … because we don’t have time to wait for the proper assessment,” Dr Freelander said. “We’re fudging diagnosis if you like to try and get early access to intervention. I’ve done this myself.”
A qualifying diagnosis remains a prerequisite for targeted funding in most NSW schools, despite moves afoot to modernise the funding system to look at a child’s needs rather than diagnostic label. A diagnosis with clearly identified needs can also smooth the path to obtaining support from the National Disability Insurance Scheme, despite not being technically required.
Dr Freelander said the problem was not peculiar to one side of politics because it had developed over many decades and existed in all states. However, he thought it could be easily solved if governments had the will to set up developmental units in the major areas of each capital city and outreach clinics in regional and rural areas.
However, Fiona Martin, a federal Liberal MP in Sydney and psychologist with expertise in neurodevelopmental assessments, said there was an underlying workforce shortage.
“The fact is that there actually aren’t a lot of people who are trained to do these assessments, and within that group, a lot of people are working in the private sector now because they can, because the demand is high enough,” Dr Martin said. “A lot of psychologists particularly in educational and developmental psychology are women, and by the time they go through their training, they’re having kids, and they want to have some flexibility, so private practice is very appealing.”
Dr Martin said a delay of two years was “unacceptable” given the missed opportunity for intervention, and she encouraged parents to seek a private assessment if they could afford it.
Professor Guastella said thousands of children are assessed on the public system every year – 1300 a year at Sydney Children’s Hospital Network alone – but resource allocation to services had not kept up with population increases and increasing awareness of neurodevelopmental assessments.
“Those with financial resources can generally get an assessment much faster [by going privately], but then you’re looking at least a couple of thousand dollars if not much more to go through a developmental assessment diagnosis,” he said. “For many families that’s out of reach, so they rely on the public health system, which is free.”
Many private paediatricians and psychologists also have waitlists of six to 12 months.
Professor Guastella said several services in Greater Sydney had changed criteria to cut down on the waiting list, for example prioritising certain types of assessment or introducing an age cut-off, and that had increased pressure at other services.
A NSW spokesperson said the assessment of children’s development happened in a number of different health settings, including primary care and general practice, community health and outpatient services, specialist clinicians and allied health services.
“NSW Health Local Health Districts set the local referral criteria and children are prioritised for developmental assessment based on their clinical need,” the spokesperson said.