Access and barriers to supports for children and caregivers attending public child developmental assessment services: Findings from the Sydney child neurodevelopment research registry

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.


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.

Lay Summary
Families can spend years waiting for a developmental assessment for their child.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 report to accessing these supports.We also sought to understand how government funding schemes and family background characteristics influenced access to supports.Caregivers answered questions about their background and their child's intervention history before their child received a developmental assessment.Results showed that 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 disability specific services only.Results highlighted access difficulties for families who could not access government funding, impacting certain groups 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.

INTRODUCTION
Early diagnosis and interventions are critical to improving outcomes for children with neurodevelopmental conditions (Hadders-Algra, 2021).Existing guidelines for supporting children with neurodevelopmental conditions recommend implementation of multi-disciplinary care pathways for children and families when they need it (AADPA, 2022;Trembath et al., 2022).This recommended multidisciplinary care often requires involvement from general practitioners and pediatricians, psychologists, speech and/or occupational therapists, as well as other allied health professionals.Many guidelines further recommend access to early interventions that require specialist training, such as behavioral therapies.While such recommendations are commendable, they may not incorporate the practical psychosocial challenges, existing service and government system navigation challenges, and multiple barriers that can exist for their implementation across clinical services for geographically, financially, and culturally, linguistically, and neurodiverse communities.
Increasing prevalence rates associated with neurodevelopmental conditions, such as autism (Maenner et al., 2023), and growing awareness of needs, have contributed to numerous studies highlighting the significant demand and subsequent wait time for clinical services (Boulton et al., 2023).Families can spend years waiting to receive their first multi-disciplinary developmental assessment (Boulton et al., 2023).There is a growing need to understand how these assessments can then lead to relevant support pathways for families (Munro et al., 2023).
In response to this demand, there are many examples across the world of government-based funding schemes that aim to facilitate access to early supports and interventions (NDIA, 2022;Needham, 2013).In Australia, for example, the National Disability Insurance Scheme (NDIS) is funded by the federal government and provides individuals with a disability with access to services and supports that are deemed to be necessary and are related to daily living and supporting independence (NDIA, 2022).The most common diagnostic presentation for people accessing the NDIS is, firstly, autism and, then, disorders associated with developmental delay and intellectual developmental disorder (ABS, 2021a).
While the NDIS is specific to Australia, it operates under a tenet of individualized funding for self-directed care that has been implemented in Europe and North America, amongst other OECD countries (Needham, 2013).As part of this scheme, children under the age of 7 years who have developmental delays, but have not yet received a formal diagnosis, can receive access to early intervention services as part of the Early Childhood (EC) approach.In July of 2023, the age of access was increased to children under 9 years of age.Supports received can include assistance with daily living and community participation, but do not typically include mental health-related services (e.g., psychological services; May et al., 2018;NDIS, 2022).Of note, caregivers of children receiving services under the NDIS often report difficulties in timely access to services, and a lack of understanding of how to best use NDIS-funded services to support their children (Cortese et al., 2021;Gavidia-Payne, 2020).
There has been limited research evaluating access to, and barriers associated with, early intervention supports while families wait for a developmental assessment (Sapiets et al., 2021;Sapiets et al., 2023).This means that there is little awareness about the types of supports that families might already be able to access without a diagnosis, as well as knowledge about the types of services and barriers families may face when accessing different supports during this time.Anonymous surveys of caregivers of children with suspected or diagnosed neurodevelopmental conditions have found that children can have relatively high levels of access to pediatricians, general medical practitioners and speech pathologists, but may have considerably less access to behavioral interventions and mental health supports (Sapiets et al., 2022).This is despite children with neurodevelopmental conditions commonly showing significant co-occurring mental health symptoms (Boulton et al., 2023).Given existing guidelines and recommendations for early intervention (Association, 2022;Trembath et al., 2022), it is crucial to understand what supports caregivers can access while they wait for their developmental assessment.In addition, while some recent studies have begun to identify associations between sociodemographic factors (e.g., caregiver education level, socioeconomic status, cultural background) and access to intervention in children with suspected or diagnosed neurodevelopmental conditions using anonymous surveys (Sapiets et al., 2021;Sapiets et al., 2023), we still know little about how these factors may impact intervention access, as well as perceived difficulties in accessing different types of interventions, while families are waiting for an initial developmental assessment in clinical services.
Decades of research have shown vast disparities in accessing healthcare services for vulnerable families.For example, children from culturally and linguistically diverse (CALD) backgrounds and low socioeconomic backgrounds may experience more barriers in accessing supports and report a lack of knowledge in how to access supports post-diagnostic assessment (see Wallace-Watkin et al. (2022)).Further, there is an increasing acknowledgement of the community, social, and economic costs associated with neurodevelopmental conditions, which extend well beyond the child and family unit.Experts from various disciplines are working to address the social and economic costs of neurodevelopmental conditions through policy and resource allocation to support the delivery of practical screening tools and interventions for children suspected to be neurodivergent (Kularatna et al., 2022).There is, however, a need for mo,mre research about the needs of diverse, and often vulnerable, families attending public developmental assessment services to understand the type of services that these families are trying to access but cannot do so readily.It is likely that the most vulnerable families will be the least likely to receive services (Tudor Hart, 1971).
In addition to the above access difficulties, it is wellestablished that caregivers of children with neurodevelopmental conditions report increased stress, depression and burnout (Karst & Van Hecke, 2012;Kütük et al., 2021).There is evidence that caregiver-focused interventions, including behavioral and psychoeducational therapy, parental training and education programs, and carer respite can decrease caregiver stress and improve caregiver self-efficacy and self-regulation (Frantz et al., 2018;Ruane et al., 2019).Despite this, caregivers of children with neurodevelopmental conditions report difficulties in accessing caregiver-focused supports and interventions (D'Arcy et al., 2023).In addition, caregiver-based programs and mental health supports are not currently covered under insurance schemes like the NDIS (Snow & Donnelly, 2018), further limiting access to these services.
The aim of this research was to identify the existing support programs or therapies families had access to while waiting for a developmental assessment in the public system.In addition, we sought to understand the barriers that families faced in accessing supports they needed and the influence of sociodemographic factors (socioeconomic status, cultural background, caregiver level of education, parental relationship status) on access to these supports.We also examined whether current access to government funding (i.e., NDIS support) was related to access and barriers.Finally, we asked whether caregivers had access to caregiver-focused interventions and whether they wanted access to such supports.

Participants and setting
Participants were caregivers of 202 children who attended the Child Development Unit (CDU) at the Children's Hospital Westmead, Sydney, Australia, between 2020 and 2023.Participants consented to the Sydney Child Neurodevelopment Research Register (Boulton et al., 2023), a partnership with the Clinic for Autism and Neurodevelopmental Research at the University of Sydney.The study was approved by the Sydney Children's Hospital Network Human Research Ethics Committee (reference: LNR/17/SCHN/293).
The CDU is part of the publicly funded Sydney Children's Hospital Network, which provides tertiary level developmental and diagnostic assessment services to children aged 0-16 years with complex developmental disorders.Children who are referred by a pediatrician, and who live within defined geographical regions or have ongoing complex medical needs cared for at the hospital, are eligible for assessment.Given these criteria, a large proportion of referrals are children from vulnerable backgrounds (low socioeconomic status, culturally and linguistically diverse).Children are referred for assessment of complex neurodevelopmental difficulties including autism, developmental disorder, global developmental delay, speech/language delays and other difficulties with adaptive and/or cognitive functioning.On average, about 75% of children receive an autism related diagnosis and over 50% receive more than one diagnosis.All families participated in this study using opt-out consent procedures.In total, 6 families (3% of the cohort) opted out.

Measures
The measures included in this study are part of a nationally-endorsed transdiagnostic assessment protocol (Boulton et al., 2021).This protocol was developed for use in clinical settings servicing children with neurodevelopmental concerns and conditions, to collect information on transdiagnostic needs commonly observed in children with neurodevelopmental conditions and their families.
All families entering services completed a demographics and socioeconomic status questionnaire.For this study, data pertaining to family income (annual gross income), caregiver education level, parental relationship status, and CALD status were extracted.Based on 2022 Australian census data of median incomes, annual income was split into <$65,000 and > $65,000, with < $65,000 classified as below median income (ABS, 2022).Variables pertaining to CALD status and parental relationship status were recoded for ease of description and analysis (see Supplementary Materials).The Index of Relative Socioeconomic Advantage and Disadvantage (IRSAD) from the Socioeconomic Indexes for Areas (SEIFA) 2021 (ABS, 2021b), was also used as an additional measure of socioeconomic status.IRSAD percentiles (1-100) were used, where low scores indicate relatively high disadvantage, and high scores indicate relatively high advantage.
Families also provided information on intervention history, for both the child receiving assessment, and for caregivers themselves.We collected information on the types of intervention and support services accessed by families, as well as the frequency of engagement with services.Caregivers were specifically asked if they currently had access to any NDIS services for their child.Caregivers provided information about services they perceived their child needed but could not access and the main barriers limiting access to services.For this study, data pertaining to the types of interventions or support services children and caregivers had access to, and the frequency with which they were received were extracted.We extracted data pertaining to the types of support services caregivers perceived their children needed but could not access, and the barriers that limited access to these services.In addition, caregivers were asked whether they had previously accessed any caregiver-focused interventions for themselves (e.g., parenting support programs, respite), and whether they perceived a need for these interventions in the future.

Procedures
Approximately 1 month prior to their assessment at the CDU, caregivers were sent the transdiagnostic questionnaire protocol described above (Boulton et al., 2021).Questionnaires were sent electronically via the Research Enterprise Data Capture platform, an online data collection system endorsed by the University of Sydney (Harris et al., 2009;Harris et al., 2019).Families received an email reminder to complete the protocol 1 week prior to their appointment, and those who did not do so before their appointment completed it on the day of assessment as per the process described elsewhere (Patel et al., 2021).

Statistical analysis
Statistical analyses were performed with IBM SPSS Statistics for Windows, Version 27.Descriptive statistics were used to describe the cohort in terms of sociodemographic factors and intervention access.Given that NDIS support is available for children with a developmental delay not requiring a diagnosis below 7 years under the ECEI approach (NDIS, 2022), we looked at the proportion of children who were under 7 years and reported access to NDIS services, relative to those over 7 years of age.Chi-square tests were used to investigate associations between prior access to NDIS services and access to other interventions, as well as barriers to accessing interventions.To evaluate the association between sociodemographic factors and intervention history, independent samples t-tests and chi-square tests were conducted.Due to missing data across some responses, not all participants were included in all analyses (see Supplementary Table 1 for missing data summary).

Community involvement
The Brain and Mind Centre Neurodevelopment Community Research Advisory Committee were involved in overseeing and providing feedback on the development of the research assessments for this project.This committee consists of people with neurodevelopmental conditions and their caregivers.They also provided feedback about this study.

Demographics
Sociodemographic characteristics for the 202 caregiver respondents are shown in Table 1.On average, children were 6.83 years old (SD = 3.72), most were male and most caregivers who completed the questionnaires were female.Within this cohort, IRSAD percentile rankings ranged from 2 to 99 (M = 61.47;SD = 27.06),indicating representation from both disadvantaged and advantaged areas.On average, caregivers completed the questionnaires 10 days prior to their assessment, (SD = 12.59, range = 0-37 days).Comparisons between this sample of children and that in our broader research database of families attending developmental assessments indicated no differences across broad demographic features (age, highest level of education, CALD status, parental relationship status; Boulton et al. ( 2023).

Prior access to child intervention services or support
Figure 1 shows the percentage of caregivers who reported that their child had accessed various interventions and support services prior to their appointment for developmental assessment.Most children (n = 199; 98.5%) had accessed at least one of the listed intervention or support services prior to their appointment.On average, children had accessed 4 intervention services or supports (SD = 1.83, range = 0-9).
Within this cohort, 57.9% of caregivers (n = 117) reported that their child had received prior or current access to the NDIS.Most caregivers who reported access to NDIS services had children under 7 years of age (n = 99; 84.6%).Of the 126 caregivers with children under 7 years of age, 78.6% (n = 99) reported access to NDIS services.In comparison, of the 76 caregivers with children over 7 years of age, 23.7% (n = 18) reported access to NDIS services.
Most caregivers reported that their child was currently receiving an intervention or service (see Supplementary Table 2).Most children received less than 2 hours of therapy per week (0 = 33%; 1-2 = 42%; 3-5 = 21%; More than 5 hours per week = 4%).Highest weekly hours reported were for Behavior Management/ Skills Therapies (average of 6.08 hours/week; SD = 8.84) and the lowest weekly hours reported were for Pediatricians/Child Psychiatrist and General Practitioners (average of 0.29 and 0.23 hours/week; SD = 0.57 and 0.55 respectively).Child age was weakly associated with total number of therapy hours (r = À0.186,p = 0.013).

Desired interventions with access difficulties
Figure 2 shows the percentage of caregivers who perceived that their child needed a specific intervention or service but could not currently access this service.Most caregivers (n = 146; 72.3%) reported difficulties with accessing at least one of the listed intervention or support services.The most common interventions or services where access difficulties were reported were behavior management/skills therapies (n = 83; 41.1%) and psychologists/psychological services (n = 58; 28.7%).

Access to National Disability Insurance Scheme (NDIS)
The proportion of caregivers who reported access to interventions and services, and whether they were currently receiving NDIS services or packages, are displayed in Table 2. Caregivers who reported access to NDIS had a higher number of total services for their child (M = 5.17, SD = 1.46) compared to caregivers who did not report access to the NDIS (M = 2.72, SD = 1.20), t(194) = -12.37,p<0.001.Chi-square results indicated that having access to NDIS services was significantly associated with access to certain services.In particular, caregivers who reported current access to NDIS services were more likely to also have access to speech/language therapy, occupational therapy, physical therapy and behavioral management/skills therapies compared to caregivers who did not have access to NDIS services.The proportion of caregivers who reported difficulties in accessing certain interventions and services, and whether they were currently receiving NDIS services or packages are displayed in Table 3. Chi-square results indicated that having access to NDIS services was significantly associated with fewer perceived difficulties accessing certain services.Caregivers who did not have access to NDIS services were more likely to report difficulties in accessing speech/language therapy, occupational therapy F I G U R E 2 Percentage of caregivers who reported difficulties accessing supports despite child needs prior to assessment.Supports reported in the "other" category included music or art therapy, dietician or feeding therapy.
F I G U R E 3 Barriers to accessing supports.Barriers reported in the "other" category included difficulties in taking time off work to attend appointments, and difficulties accessing a therapist who spoke the same language as the child and caregiver.
F I G U R E 1 Percentage of caregivers who reported access to various supports prior to their developmental assessment.Supports reported in the "other" category included music or art therapy, dietician or hydrotherapy.and pediatricians/child psychiatrists.Current access to NDIS services was associated with fewer reported financial barriers in accessing interventions, χ 2 (1) = 10.74,p = 0.001.Caregivers who did not have access to NDIS services or packages were over twice as likely to report financial accessibility as a barrier to accessing interventions compared to caregivers who did have access to NDIS services (OR = 2.72).Having access to the NDIS did not influence barriers for accessing psychologists.

Prior access to caregiver intervention services or support
Figure 4 shows the percentage of caregivers who previously accessed a caregiver-focused intervention, and the percentage of caregivers who stated that they would want access to a caregiver-focused intervention if it were available.Of note, there were discrepancies between the type of caregiver-focused interventions previously accessed, and those that caregivers reported a need for, but an inability to access.For instance, while a minority of caregivers reported previous access to parenting support programs (n = 15; 7.4%), nearly half of all caregivers stated that they would like access to this type of caregiverfocused intervention if it was available (n = 92; 45.5%).This discrepancy was also noted for various types of parental respite, with fewer than 5% of caregivers reporting access to parental respite, and nearly 30% of caregivers stating that they would use some form of parental respite if it were available.

Sociodemographic factors-Associations with intervention access and barriers
On average, caregivers and children who reported prior access to a general practitioner or psychologist were older than those who had not accessed these services ( p values <0.029).In contrast, children and caregivers who reported prior access to speech pathologists, occupational therapy, physical therapy or NDIS services were younger on average compared to those who had not accessed these services (p values <0.041).Additionally, those children where access difficulties were reported for pediatricians, child psychiatrists, psychologists, or NDIS services were older compared to those where no access difficulties were reported ( p values <0.034).
Caregiver CALD status was associated with prior access to physical therapy and NDIS services.Specifically, caregivers from CALD backgrounds were less likely to have access to physical therapy compared to caregivers from non-CALD backgrounds, χ 2 (1) = 6.16, p = 0.013, OR = 0.38.In contrast, caregivers from CALD backgrounds were more than twice as likely to report access to NDIS services compared to caregivers from non-CALD backgrounds, χ 2 (1) = 8.80, p = 0.003, OR = 2.47.In addition, caregiver CALD status was associated with difficulties in accessing NDIS services, p = 0.021.When caregivers were from non-CALD backgrounds, the odds of reporting difficulties in accessing NDIS services were more than three times as likely compared to caregivers from CALD backgrounds, χ 2 (1) = 6.92, p = 0.009, OR = 3.57.
Parental relationship status was associated with access to speech pathologists, NDIS services and psychologists.Caregivers who were living together were more than twice as likely to report access to speech pathologists for their child, compared to caregivers who were separated, χ 2 (1) = 7.66, p = 0.006, OR = 2.66.Similarly, caregivers who were living together were over twice as likely to report access to NDIS services compared to caregivers who were separated, χ 2 (1) = 9.08, p = 0.003, OR = 2.84.In contrast, when caregivers were living together, the odds of children having accessed a psychologist were half as likely compared to when caregivers were separated, χ 2 (1) = 5.20, p = 0.023, OR = 0.45.Considering access difficulties, parental relationship status was associated with difficulties accessing speech pathologists and NDIS services.Compared to caregivers who were living together, caregivers who were separated were more likely to report difficulties in accessing speech pathologists (χ 2 (1) = 11.45,p < 0.001, OR = 3.35) and NDIS services (χ 2 (1) = 13.81,p < 0.001, OR = 4.50).
Caregiver level of education was not associated with current access to any of the listed interventions or services (p-values >0.060).It was, however, associated with reported difficulties in accessing speech pathologists, occupational therapy, and NDIS services (p values <0.020).Across these services, lower levels of caregiver education (e.g., primary or secondary school, vocational training) were associated with increased difficulties in accessing services compared to higher levels of caregiver education (bachelors and postgraduate degrees).
In terms of socioeconomic status, family income was associated with access to occupational therapy.Caregivers with lower incomes (<$65,000 per year) were less likely to report access to occupational therapy compared to caregivers with incomes greater than $65,000 per year, χ 2 (1) = 4.60, p = 0.042, OR = 0.49).Family income was also associated with difficulties in accessing speech pathologists, occupational therapy, behavior management/skills therapies and NDIS services, p values <0.001.Caregivers with lower incomes were more likely to report difficulties in accessing these services compared to caregivers with incomes greater than $65,000 per year (ORs ranged from 3.23 to 5.13).
There were some differences in access to interventions or support services as a function of IRSAD scores, which are broader indices of relative socioeconomic advantage and disadvantage.When looking at access to pediatricians or child psychiatrists, caregivers who reported access to these specialists were from more disadvantaged areas on average (M = 59.24,SD = 27.29)compared to caregivers who did not report access to these specialists (M = 70.22,SD = 24.57),t(200) = 2.34, p = 0.020.Caregivers who reported difficulties accessing pediatricians/child psychiatrists and physical therapy were from more disadvantaged areas compared to the caregivers who did not report difficulties accessing these services (p values <0.026).
Financial barriers and lack of knowledge about where to go or who to contact were associated with sociodemographic factors.Families who reported financial considerations as a barrier to accessing interventions were more likely to have older children (t(200) = À2.01,p = 0.046) and lower annual incomes (χ2(1) = 2.29, p = 0.042, OR = 2.02), compared to families who did not report financial considerations as a barrier.Families who reported lack of knowledge about where to go or who to contact as a barrier to accessing interventions were more likely to be from disadvantaged areas based on IRSAD percentiles, compared to families who did not report lack of knowledge as a barrier, t(200) = 2.85, p = 0.005, and were more likely to be from a non-CALD background (n = 47; 66.2%), p = 0.035.They were also likely to have lower levels of education (n = 48; 67.6% with high school or vocational training only), p = 0.009.

DISCUSSION
This study sought to understand access and barriers to intervention supports and services for families while they waited for a neurodevelopmental assessment.The majority of children who attend the multi-disciplinary neurodevelopment assessment service receive a diagnosis of autism.While caregivers reported being able to access general practitioners and pediatricians, the most frequently desired supports that could not be accessed were behavior therapists (41% of caregivers) followed by psychologists (29%).Waitlists, financial considerations and lack of knowledge about where to go or who to contact were the most frequently reported barriers for lack of access.For caregiver focused interventions, almost 50% of caregivers wanted parenting support programs and 29% wanted in-home respite, but the vast majority received neither.A range of sociodemographic factors influenced these results.While NDIS use was common for younger children (79%), it was uncommon for those over the age of 7 (24%), in line with government policy at the time.Unsurprisingly, participants who received NDIS funding were more likely to receive a greater number of multi-disciplinary supports (5.2 different supports for their child) in comparison to non-NDIS participants (2.7 different supports for their child), and caregivers with NDIS funding reported fewer financial barriers accessing supports.Results highlight significant challenges for families in accessing supports to meet best practice recommendations that provide the right supports at the ideal time for children with neurodevelopmental conditions.They also highlight inequities that emerge through the administration of government support packages.Results highlight the discrepancy between government supported recommendations for early childhood intervention in neurodevelopmental conditions (AADPA, 2022;Trembath et al., 2022) and the realities of accessing support in real world settings.Together, this study highlights the substantial and unacceptable discrepancies between what children and caregivers can currently access in terms of interventions and supports, and what they require access to.
Our first set of results showed that the vast majority of children had accessed at least one intervention or support service prior to their multi-disciplinary diagnostic assessment.The most commonly accessed services were medical professionals (pediatricians, child psychiatrists, general practitioners) and speech/language therapists.This aligns with the typical diagnostic journey of many families, where a general practitioner provides referral to a pediatrician for further evaluation (Evans et al., 2022;Stahmer et al., 2019), after which referral may be made to a tertiary service.In contrast, some of the least commonly accessed services were psychological services and behavioral management/skills therapies.Consistent with the comparative lack of access, psychological services and behavioral management/skills therapies were the services that caregivers reported difficulties accessing.We note the considerable debate about the value of behavioral interventions for child developmental needs (e.g., Leadbitter et al. (2021); Schuck et al. (2022)).It is beyond the scope of this paper to engage in this debate.Our results highlight that behavioral therapies are nominated by caregivers as their most frequently desired but inaccessible support.Similarly, there is often great debate about the role of mental health in child development.As argued elsewhere, mental health services are often separated from disability support services (Boulton et al., 2023) and this can create inequities in access to such psychological services.
This study demonstrated that most caregivers (79%) experienced at least one barrier that impacted their ability to access interventions or support services.The most commonly reported barriers were long waitlists, financial considerations, and a lack of knowledge about where to go or who to contact.This mirrors international findings, where long waitlists have been reported as significant barriers when attempting to access specialist services (Stahmer et al., 2019;Wallace-Watkin et al., 2022).Caregivers also commonly report insufficient knowledge about where to go and how to access support services (Vohra et al., 2014).An increased focus on improving health literacy and empowering caregivers with the knowledge to navigate interventions and support services may be an avenue by which this barrier can be bridged.
In this cohort, 58% of caregivers reported access to the NDIS.However, this access was not evenly distributed across the sample, with children under 7 years of age representing the vast majority of NDIS recipients.This is consistent with the guidelines of the scheme as it was implemented at the time of data collection, with children under the age of seven able to receive services if they demonstrated evidence of developmental delay but did not have a formal diagnosis (NDIS, 2022).This age cutoff has been recently lifted to 9 years of age to support children during and after their transition to primary school.
When looking at whether current access to the NDIS was related to access to other supports and barriers to accessing other supports, three key findings emerged.First, caregivers who reported access to NDIS services were more likely to report access to other services, including speech pathologists, occupational therapy, physical therapy and behavioral management/skills therapies.Second, caregivers who did not have access to NDIS services were more likely to report difficulties accessing these services, namely speech/language pathologists and occupational therapy.These findings reflect the services and supports provided under the NDIS, which include assistance with daily living, speech, and occupational therapy, and behavioral interventions (May et al., 2018).Unsurprisingly, access to the NDIS did not influence access to psychologists, a service not typically covered by the scheme.Third, we found that access to NDIS services, or rather, a lack of access to NDIS services, influenced financial barriers to interventions.Caregivers who did not have access to NDIS services were more than twice as likely to state that financial accessibility was a barrier to accessing interventions, compared to caregivers with NDIS access.Taken together, these findings demonstrate the increased access to specific services and financial support the NDIS can provide to children with developmental delays and neurodevelopmental conditions.With debate ongoing about the scope for supporting neurodevelopmental disabilities under the NDIS, this study highlights the negative impact reducing access to the NDIS will likely have on the total number of received interventions and supports.
While most interventions and support services focus on the needs of children with neurodevelopmental conditions, it is well established that caregivers of children are likely to experience increased levels of stress, anxiety and burnout related to parenting a child with a neurodevelopmental condition (Garner et al., 2013;Karst & Van Hecke, 2012;Kütük et al., 2021).Given this knowledge, we also looked at the types of caregiver-focused interventions (parenting support programs, respite) caregivers had access to, and the types of interventions they would like to have access to.While less than 10% of caregivers reported prior use of these interventions, nearly 50% of caregivers stated that they would like access to these interventions if they were made available.These findings build on those of D'Arcy et al. ( 2023), where caregivers reported difficulties in accessing caregiver-focused supports.In light of evidence supporting the efficacy of caregiver training and education programs for decreasing caregiver stress (Frantz et al., 2018;Ruane et al., 2019), future work should prioritize ways to increase awareness of and access to caregiverfocused interventions when children present for developmental assessments, in an effort to address this unmet need.

Sociodemographic factors associated with access to interventions and barriers accessing interventions
Socioeconomic status (measured via family income, level of education, and IRSAD percentiles) was associated with difficulties in accessing interventions, and with barriers to accessing interventions.Overall, caregivers with lower income levels and lower education levels were more likely to report difficulties in accessing speech pathologists, occupational therapy, behavior management/skills therapies and NDIS services, and were more likely to report financial considerations as a barrier to accessing interventions.Furthermore, caregivers who reported a lack of knowledge about where to go and who to contact as a barrier to accessing interventions were more likely to have lower levels of education and live in geographically disadvantaged areas.These findings align with prior work evaluating barriers to accessing interventions post-diagnostic assessment, where socioeconomic status consistently emerges as a key access barrier (Wallace-Watkin et al., 2022, 2023).Taken together, these findings suggest that socioeconomic status is an important driver of difficulties in accessing interventions while families wait for a developmental assessment.Future research must consider how increased awareness of intervention and support services can be provided to families from socioeconomically disadvantaged areas to ensure all individuals are equipped with the knowledge and understanding of where services are and how they can be accessed (Garg et al., 2019;Nutbeam & Lloyd, 2021).
CALD status was associated with some notable differences in accessing interventions.Caregivers from CALD backgrounds were more than twice as likely to report access to NDIS services compared to caregivers from non-CALD backgrounds.In addition, caregivers from non-CALD backgrounds were over three times as likely to report difficulties in accessing NDIS services, and were more likely to report lack of knowledge as a barrier to accessing interventions, compared to CALD caregivers.While counter-intuitive at face value, given that some literature suggests families from CALD backgrounds experience difficulties accessing support services (Wallace-Watkin et al., 2022), this finding aligns with our recent research investigating predictors of diagnostic delay, where children from CALD backgrounds received diagnoses earlier than those from non-CALD backgrounds (Boulton, Hodge, et al., 2023).Indeed, it is possible that the CALD caregivers in this cohort are well-versed in navigating various governmental access systems, and may have be better educated and equipped to navigate some of the bureaucratic hurdles that can be associated with the NDIS, relative to their non-CALD counterparts.
Parental relationship status emerged as a sociodemographic variable associated with differences in intervention access.Caregivers who were living together were more than twice as likely to report access to speech pathologists and NDIS services, compared to caregivers who were separated.In contrast, caregivers who were separated were more likely to report access to a psychologist for their child compared to caregivers who were living together.This finding extends past research demonstrating that separated parents may have greater difficulties navigating healthcare pathways (Boulton, Hodge, et al., 2023;Kalb et al., 2021).In contrast, parental separation may necessitate increased psychological support for children, given the increased stress and anxiety that children can experience during and after parental relationship breakdowns (D'Onofrio & Emery, 2019;Lucas et al., 2013).

Strengths and limitations
To our knowledge, this is the first study to evaluate the interventions and support services that children and caregivers have access to, and barriers to accessing these services, while families wait for a developmental assessment in the public healthcare system.We were able to demonstrate key barriers experienced by families and how disability services (the NDIS) may influence access for families.Using a cohort of families from diverse backgrounds, we were also able to explore how a range of sociodemographic factors (e.g., CALD status, socioeconomic status, parental relationship status) related to intervention access and barriers.The service is a tertiary diagnostic service primarily servicing children and families from the Western Sydney local government area and from wider New South Wales where there is not another more appropriate service.We, therefore, service many of the most vulnerable children and families, as well as a large number of families from CALD backgrounds.While we consider the focus on this underrepresented population a strength of the study, we acknowledge that findings may not generalize to different geographical locations rural and regional), community child health settings or private services.Some limitations must be acknowledged.We relied exclusively on caregiver reports of which interventions and support services were being accessed.While this is a strength in terms of representing the views of this community, we cannot verify the data objectively.Future studies should utilize data linkage to bring together information from various data sources, such as from the National Disability Insurance Agency, to capture more precisely the specific services families are accessing, and how frequently they access these services as well as reported treatment outcomes.Further, the questionnaires in the current study were only made available in English.Given the large proportion of families from CALD backgrounds, it is a priority for our research team to make these questionnaires available in multiple languages and our future studies will address this.In addition, we note that the sample size was relatively small, which may limit generalisability to the wider population.We also did not capture detailed information on children or caregivers, such as caregiver mental health or child diagnostic symptom severity and mental health needs.In addition, further research is needed to understand what supports and services children and caregivers access following their developmental assessment.

CONCLUSIONS
By examining access to interventions and support services in a cohort of families waiting for a developmental assessment in the tertiary public healthcare system, this study highlights the discrepancy between the interventions and services caregivers want to access, and the interventions and services they can access while they wait.Our results point to a large need for mental health care and psychological support in this group, and highlight the role of disability government funding schemes in facilitating access to supports.We show how sociodemographic factors can impact access to interventions, and compound already existing barriers when attempting to access services.Given the critical importance of early interventions and supports for promoting optimal outcomes in children with neurodevelopmental conditions, this study highlights the need for improved access and streamlined pathways to appropriate resources that children and families can use throughout their diagnostic and assessment journey.In addition, they highlight a need to integrate our findings into recommendations and guidelines that can be implementable and achievable for families.

Figure 3
Figure3shows the main barriers that caregivers reported as impacting their ability to access interventions.Most caregivers (n = 159; 78.7%) reported at least one barrier that impacted their ability to access interventions or services.The most commonly reported barriers were long waitlists (n = 93; 46.0%), financial barriers (n = 71; 35.1%) and lack of knowledge about where to go or who to contact (n = 71; 35.1%).

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I G U R E 4 Caregiver-focused interventions.
T A B L E 1 Sociodemographic characteristics of caregivers and children.Note: N is varied across variables due to missing data across responses.See Supplementary Table1for missing data summary.Abbreviation: CALD, culturally and linguistically diverse.
BOULTON ET AL.
T A B L E 2 Chi-square results for access to supports by access to NDIS services.Chi-square results for desired supports with access difficulties by access to NDIS services.
T A B L E 3Abbreviations: NDIS, national disability insurance scheme; OR, odds ratio.a Supports reported in the "other" category included music or art therapy, dietician or feeding therapy.*p < 0.05.**p < 0.001.