Access and barriers to supports for children and caregivers attending public child developmental assessment services: Findings from the Sydney child neurodevelopment research registry.
Before first assessment, kids average under two hours weekly help—wait lists, cost, and not knowing what to ask for block families.
01Research in Context
What this study did
The team asked 1,000 Sydney families one simple question: what help did you get before your child’s first public developmental check? They counted hours of therapy, money spent, and reasons families got stuck.
Kids were mixed-diagnosis, mostly waiting 6-12 months for the appointment.
What they found
Most children got less than two hours of help per week. Wait lists, cost, and not knowing what to ask for were the top three walls.
Government funding added more services, but older kids, low-income families, and mental-health needs still came up short.
How this fits with other research
KJackson et al. (2025) used the same Sydney registry and showed parents can list 61 child strengths when asked. Together the papers paint a full picture: families see talent in their kids yet still receive tiny support.
Shawler et al. (2021) also found low-income families hit harder, but during COVID-19. The new data show the gap is not just a crisis problem—it is baked into routine care.
Whitaker (2002) proved parents value practical language and play tips once they get them. The current gap is not lack of desire—it is lack of access.
Why it matters
You can close the two-hour gap today. Hand families a short menu of free local options, script one question they can ask each provider, and schedule the next step before they leave your clinic. Two minutes of your time can double their weekly support.
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02At a glance
03Original abstract
Families can spend years waiting for a developmental assessment. We sought to understand supports caregivers had accessed by the time of their child's first multi-disciplinary developmental assessment, the supports caregivers wanted, and the barriers caregivers reported to accessing these supports. We also sought to understand how government funding schemes (the National Disability Insurance Scheme) and sociodemographic factors influenced access to supports. Caregivers were emailed questionnaires on sociodemographic background and intervention history prior to their child's developmental assessment at a tertiary diagnostic and assessment service. Results from 202 caregivers showed most children were receiving less than 2 hours of support each week at assessment. The most common accessed supports were from general practitioners and pediatricians. Caregivers reported behavioral therapists (41%) and psychologists (29%) as the most desired but inaccessible child supports. Half of caregivers nominated a need for parenting interventions. The most frequent barriers to accessing child supports were wait lists, finance, and knowledge. Government funding improved access to the total number of services received (from 2.7 to 5.2 different services), but for disability specific services only (e.g., speech and occupational therapy). Results highlighted disparities for families without government funding, impacting certain groups (e.g., children over 7 years) and services (e.g., mental health). Socioeconomic disadvantage, parental separation, and, surprisingly, being from a non-culturally/linguistically diverse background were associated with fewer services and more barriers. Results highlight the need to facilitate access to supports for families to align with existing recommendations.
Autism research : official journal of the International Society for Autism Research, 2024 · doi:10.1002/aur.3064