NDIA Accountability Project

Submission to the New South Wales Government Committee on Foundational and Disability Supports Available for Children and Young People in New South Wales

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Submission No 66

INQUIRY INTO FOUNDATIONAL AND DISABILITY SUPPORTS AVAILABLE FOR CHILDREN AND YOUNG PEOPLE IN NEW SOUTH WALES

Organisation: Eapen V et al - STARS for Kids Date Received: 16 April 2025

New South Wales Government Committee on Foundational and Disability Supports Available for Children and Young People in New South Wales

Inquiry into foundational and disability supports available for children and young people in New South Wales

Submission to the New South Wales Government Committee on Foundational and Disability Supports Available for Children and Young People in New South Wales

We are a collaborative coalition of leading Australian universities, research centres, state government, and non-governmental community organisations, actively engaged in research and implementation through Sydney Partnerships in Health Education Research and Enterprise (SPHERE), Sydney Health Partners (SHP), and the National Child and Family Hubs Network. Our program of work includes capacity building to support scaling and sustaining over 460 Australian physical Child and Family Hubs, 85 of which are in New South Wales (NSW). This includes research into better reach, engagement and empowerment of families using programs such as “Watch Me Grow – Electronic (WMG-E) platform ) to identify child development, parental mental health and family social care needs (funded by NSW Health and National Health and Medical Research Council (NHMRC)) as well as appropriate physical Hub models through programs, such as the First 2000 Days Care Connect (funded by NSW Health), Karitane Fairfield Integrated Child and Family Hub and First Steps Count Child and Community Centre in Taree, NSW (funded by the Australian Research Council). Hubs provide a ‘one stop shop’, where families can access a range of supports to improve child and family health and wellbeing using a family centred approach. Hubs also provide opportunities to build parental capacity and for families to create social connections. Our team also leads work in NSW on virtual navigation and digital Hub (funded by NSW Health) models including Centre for Research Excellence in supporting child and family health for priority populations via STARS (Strengths-Based Tiered Access to Resources and Supports) for Kids program (funded by the NHMRC). The WMG-E) offers universal reach by ‘going to where the children go’ thereby including those families who are currently not engaging with developmental checks in primary care and in the community, and when needs are identified they are linked with state services (NHMRC partnership grant) and tiered care matching the child and family needs (Medical Research Future Fund). For those with complex psychosocial needs, navigation support (digital and integrated Child and Family Hubs) is provided to access a range of supports including child development checks alongside support for parental mental health and family psychosocial needs with the ultimate aim to improve child and family health and wellbeing. Integrated Child and Family Hubs have two critical roles:

  1. Improving access to a range of health, education, and social services using a family centred and integrated approach.
  2. Providing opportunities to build parental capacity and for families to create social and community connections and belongingness.

Additional focus of this collaborative includes bridging state and federal policies and programs such as the new MyMedicare First 2,000 Days Program, being considered by the Federal Government. This can be replicated at state level via commissioning primary care services in partnership with state health and education services. We warmly welcome the opportunity to submit our insights to the Foundational and Disability Supports Available for Children and Young People in New South Wales.

In alignment with the inquiry’s objectives, we aim to underscore the potential for enhancing equity and overcoming barriers to early childhood health and developmental checks. Drawing from the evidence detailed in this submission, our submission includes key recommendations, which are followed by a comprehensive discussion.

Recommendation

Investing in an integrated childhood health and developmental checks program to reach all children, including those who are hard to reach and not currently engaging with our service system. This will identify children with disabilities early and ensure proportionate engagement with foundational supports, with specific focus on:

  • Supporting the establishment and ongoing funding of Child and Family Hubs in NSW to improve attendance and engagement with developmental surveillance and integrate services and foundational supports around families to intervene early in disability.
  • Ensuring easy access for families by supporting General Practitioners and Child and Family Health Nurses to provide developmental screening and ongoing monitoring during opportunistic contacts (e.g., immunisation program, MyMedicare First 2,000 Days Program, parenting support services)
  • Supporting technological innovations, such as the virtual Child and Family Hubs and the Watch Me Grow-Electronic program, with demonstrated evidence in engaging families including those from priority populations by ‘going to where the children go’ (e.g. GP, state clinics, preschools, early childhood education and social services, home, etc)
  • Improving the sustainability through continuous quality improvement and evaluation including economic analysis.

Overview: Despite substantial investment in state and national early childhood education and care programs, uptake remains low, with only 20-30% of families accessing routine health and developmental services in certain regions. Children from disadvantaged backgrounds often miss recommended developmental checks, highlighting significant inequity. Our research underscores the necessity of transitioning to an integrated and joined up service model using a strengths-based tiered care (STARS) framework with tiered care as per needs including Child and Family Hubs for those with complex needs, which can double the early accurate identification of developmental needs and referrals, improving outcomes for priority groups.

Investing in the early years can enhance child health and developmental outcomes, especially for children from priority (e.g. those residing in regional, rural, and remote areas, Aboriginal communities, children facing socioeconomic challenges, and culturally and linguistically diverse) backgrounds. As identified through our STARS program, the fundamental aspects that are part of practice and policy of NSW Government but need further enhancement and joining up are:

  1. INTEGRATION OF CHILD AND FAMILY SERVICE MODELS through the implementation of place-based Integrated Child and Family Hubs serving as a non-stigmatising ‘one-stop-shop’ where families can access a range of supports that improve child development as well as child and family health and wellbeing. This will complement the current ‘Blue Book’ program which when implemented well is an example of foundational supports but currently lacking reach, uptake and engagement particularly by priority groups due to socioeconomic, cultural and linguistic, geographic and other barriers. .
  2. INCREASING RESPONSIVENESS by engaging and empowering families to complete developmental checks using opportunistic contacts and technological advancement. The current foundational supports via Child and Family Health Nurse services for completion of developmental checks lack responsiveness due to structural, financial and other barriers while leveraging opportunistic contacts such as aligning with the childhood immunisation schedule can increase engagement to >90%.
  3. ENHANCED SUSTAINABILITY through informed collaborative leadership and interagency work with stakeholders, shared investment across agencies, co-design with target communities, information sharing, and ongoing evaluation. While the Brighter Beginnings preschool check is an example of inter-agency collaboration, it is too little and too late, and the focus is only on completing the checks which limits the program’s ability to serve as effective foundational supports.
  4. PROVIDING EQUITABLE SERVICES based on needs and choices through the STARS tiered care program 5 as a continuum integrating general supports via a range of hybrid joined up services including digital (phone, text, email, online etc) and in-person tiered care solutions including child and family hubs taking into account the child’s needs as well as the parental and family needs comprising:

a) universal access to early detection using the innovative technology of Watch Me Grow- Electronic (WMG-E) platform

b) additional support with awareness, health literacy resources, sign posting and ‘light touch’ parenting programs and digital services (Tier 1)

c) targeted services when specific issues are identified (Tier 2)

d) specialised interventions and complex psychosocial supports and service navigation (Tier 3) using a proportionate universalism (universal services plus targeted supports commensurate with needs) framework

Response to the Committee on Community Services Inquiry That a select committee be established to inquire into and report on child development, early childhood intervention services and other foundational and disability supports available for children and young people with developmental concerns, delays, differences or disabilities in New South Wales, and in particular (a) the role of such services and supports on a child’s overall development, health and wellbeing

The importance of the First 2000 days (from pregnancy to start of school) for healthy brain development and later health and wellbeing has been acknowledged by the NSW (Brighter Beginnings) and Australian government. Further, supporting this period of a child’s life is a national policy and research priority to ensure all children flourish 6. However, approximately one-in-five Australian children start school with ‘developmental vulnerability’ leading to increased risk of poor socioemotional functioning, school difficulties, chronic disease, mental illness, reduced economic opportunity, lifelong disability, and intergenerational adversity. The rate is higher at one-in-three to one-in-two for children from priority (multicultural, Aboriginal, low socioeconomic status, and regional/rural) groups. There is also significant inequity with children from disadvantaged backgrounds not engaging with recommended child developmental checks 7,8. Thus, despite the significant investment in early child services through state and national programs, these are underused, with only 20-30% of families engaging with routine health and developmental services in some jurisdictions. Addressing this inequity in health service use and outcomes requires a fundamental shift to an integrated service model that addresses three key areas 1) child developmental needs 2) functional aspects such as needs, goals and supports and 3) the family and wider context of the child.

Our work has shown that digital platforms can be used successfully to engage families including those from priority groups to complete developmental checks 9 and that integrated Hubs in the first 2000 days can double early accurate identification of developmental needs and referrals, resulting in better outcomes 10. Adapting the ‘First 2000 Days maternal and child healthcare framework’ in the aftermath of the COVID-19 pandemic 11 by using digital technology has been shown to significantly improve the reach, parental engagement, and child and family outcomes, particularly for those from priority (e.g. regional, rural,

Overview

  • Implementation of the WMG program via the NSW Health COVID-19 grant demonstrated the feasibility and acceptance of digital technology, including among priority populations (e.g., multicultural community in Fairfield and regional/rural/Aboriginal community in Murrumbidgee) 1 and has been shown to be effective in correctly identifying children with developmental disabilities including autism 2. This program is currently being scaled up in SWSLHD via the Brighter Beginnings preschool developmental checks program, in partnership with the Department of Education. Further integration with General Practice and the Child and Family Health Nurse service has been trialled 3. Also recommended are the use of opportunistic contacts during immunisation and other routine healthcare contacts for universal reach (ongoing trial via NSW Health TRGS grant), with appropriate incentives for professionals and families for completing the developmental checks alongside immunisation.
  • Implementation of the First 2000 Days Connect and Care (FDCC) Hub program for migrant and refugee families at SESLHD, SWSLHD, and NSLHD via a NSW Health TRGS grant has demonstrated that this is acceptable to families and service providers. Specifically, the Hubs doubled early engagement with Child and Family Health Services, increased the identification of health and social needs, and reduced inequities in access to services 4.

and remote communities, Aboriginal communities, children living in socio-economic disadvantage, and culturally and linguistically diverse) backgrounds 1,3.

(b) the types of services and supports available and measures to improve effectiveness, availability and access of such services and supports in metropolitan, regional, rural and remote New South Wales, including medical, community-nursing, allied health services, NDIS services and other service delivery models

Our approach includes Community-led, digital to place-based child and family hubs services which aim to provide an integrated continuum of care, including navigation support and integrated models working with General Practitioners.

1) Integrated Child and Family Hubs (physical Hubs) Integrated Hubs are place-based interventions funded by government and non-government organisations with co-located health, early childhood education, disability, and social services (e.g., child health nurse, playgroups, financial counselling, legal support). These services share referral pathways with a ‘no wrong door’ approach. Families are supported to identify their priorities and linked through ‘warm referrals’ to relevant services by a navigator (recommendation by the national child mental health and wellbeing strategy) 10. Hubs thus address access barriers 12 by simplifying pathways to care for children from priority populations and communities. Migrant and refugee women, in particular, experience significant language, cultural, and psychosocial barriers to services. Our research has shown that Hub models, such as the First 2000 Days Connect and Care (FDCC) Hubs, are acceptable to families and service providers and can increase the identification of health and social needs, and reduce inequitable access to services 4,13. Child and Family Hubs also provide an opportunity to integrate services to provide early intervention to those children experiencing a disability, developmental delay, or developmental concerns, including those who are ineligible for National Disability Insurance Scheme (NDIS) funding. Due to strict eligibility criteria and limited support outside the NDIS, children experiencing developmental delays are not identified early and support is unavailable. Hubs provide a non-stigmatising setting that can improve access to developmental surveillance and early intervention for those children who need it, potentially reducing the cost of NDIS to the government, reducing waitlists and family stress. There is the potential to test Hub effectiveness in supporting children ineligible for NDIS via pilot-testing general and targeted supports through established Hubs that operate within a broader place-based approaches across states and territories.

Karitane is a not-for-profit organisation and registered charity who has been a pioneer in offering expert parental support, education, research, and advice. Over 100 years, Karitane has become a recognised leader in supporting families to navigate parenting in the first 2,000 days of their child’s life. Karitane services are evidence based and delivered by a caring and highly trained professional team of child and family health nurses, paediatricians, social workers, psychologists, and psychiatrists offering complete holistic care. Karitane has a history of innovation, providing leading specialist early parenting services while driving accessibility and support for parents, to ensure that every child receives the best start in life. Karitane’s commitment to supporting Australian families when and where they need, has seen their range and reach of services significantly grow, with face-to-face and virtual models of care and an extensive suite of programs to support some of the most vulnerable communities.

First Steps Count Child and Community Centre in Taree, NSW, is a leading exemplar of a regional Hub forging strong partnerships with local government (e.g., Community Health) and non-government organisations (e.g., Uniting) to improve outcomes for children and families. With a service navigator embedded in the model, funded by Communities for Children (through Mission Australia) and implemented via Karitane, First Steps Count fosters stronger communities by working together with families and services in a warm and welcoming environment. Extensive co-design and community engagement activities with local Aboriginal and non-Aboriginal families continue to shape the way the Centre delivers services, activities, and programs, enabling a transformational change for children and families and at the system level (Figure 1).

Figure 1. Co-design with community members of how centres should deliver services.

2) Service navigation models of care Evidence suggests that general supports under foundational support framework may be enhanced via service navigation models of care to offer family-centred approach enabling service referrals, treatment attendance, active engagement, continuity of care, and the retention of parents/caregivers with diverse health requirements 14. The Service Navigator assists patients in navigating the complexities of the health, education and child and family eco system, ensuring prompt access to care, and promoting patient self-management through education, capacity building, and support 15. Moreover, the role of a ‘system or service navigator’ is focused on connecting the consumers to available services, rather than providing their clinical care. Whilst this model has been used in different target population groups, findings of our systematic review indicate that service navigation has the potential to address the healthcare needs of vulnerable groups of parents in the perinatal period, improving their access to and engagement with mental health services 16.

One of our major programs that utilise the service navigation models of care is the ForWhen Perinatal and Infant Mental Health (PIMH) care navigation program. The ForWhen Perinatal and Infant Mental Health (PIMH) care navigation program17 is an Australian government-funded, national navigation service program that is led by Karitane in collaboration with the Australasian Association of Parenting & Child Health (AAPCH), the Parenting Research Centre (PRC), and the University of New South Wales (UNSW). This program was designed as a free, national service for parents and carers experiencing moderate to severe mental health concerns during pregnancy and the first year after birth. Parents and health professionals access the program by calling the ForWhen helpline, which links them to a ForWhen Navigator based in their state or territory. ForWhen navigators work collaboratively with clients and health professionals to connect parents/carers with appropriate services and support. The ForWhen program considered nine key activities for the ForWhen navigation which included: 1) service mapping, 2) screening and assessment, 3) supporting clients, 4) identifying needs and goals, 5) providing information and education, 6) connecting clients to services, 7) active holding, 8) supporting clinicians, and 9) warm handover.

Findings of the independent mixed-methods evaluation of the ForWhen program (i) Implementation evaluation outcomes Key themes that emerged from the qualitative in-depth interviews are presented below.

Qualities and contributions of the Navigator Participants highlighted the pivotal role that their Navigator played in helping them to achieve positive outcomes through the ForWhen program.

“[Navigator was] absolutely amazing and worth her weight in gold … [Navigator] actually influenced and helped me a lot. I hope that she knows that she is making a very big difference.” [P3]

Participants described Navigators as attentive, easy to talk to, experienced and knowledgeable, reliable, and consistent.

“She took her time to actually listen and get to know the situation … she really dedicated the time to talking to me, she kept in contact with me all the time just to check in, see how we’re doing.” [P1]

Participants described their interactions with Navigators as therapeutic, reporting that they felt heard and validated in conversation. Clients described the advice and resources they received from their Navigator as having been individualised and specific to their situations and needs. Clients also felt that by getting to know them in a personalised way, the Navigator was able to help them to find practical solutions to specific problems and empower them to take steps to make important lifestyle changes.

“She totally validated what I was feeling…and made me feel like…it was totally okay to feel overwhelmed sometimes, as opposed to how I was feeling which was, ‘I’m a terrible mother’, because I can’t handle being overwhelmed.” [P10]

“That’s what I needed. I just needed to talk to someone, I needed to find solutions, alternatives to what I was going through and that’s what I got from the program…” [P4]

Referrals to appropriate services and resources Clients said that because of ForWhen, they had been connected with clinical services (e.g., psychologists, parenting support), and that these services were affordable, accessible, and that they met their needs and expectations. Many clients were impressed with the way in which their Navigator had been able to find a service that was suitable for them. They also appreciated the Navigator’s ability to organise the referral and work behind the scenes to advocate on their behalf, facilitating access to services.

“[Navigator] was able to go through and organise research psychologists that might be close to where I am, who specialise in perinatal, who are within my affordability range, it just took so much of the burden of trying to access care.” [P3]

Improved mental health and sense of connection Many clients reported a marked improvement in their mental health since their interactions with the ForWhen service. Importantly, it fostered a sense of connection, giving clients confidence that help and support were available to them if and when needed.

“It’s immensely helped my mental health, being able to cope as a new parent…” [P3]

(ii) Outcomes evaluation Preliminary findings of the snapshot study conducted with 212 parents to examine clinical outcomes of the ForWhen program suggested that the ForWhen program was associated with significant improvements in a range of intended target areas including parental depressive symptoms, parent-child bonding, parenting self-efficacy and self-compassion.

(iii) Economic evaluation The preliminary results suggest that ForWhen is making a remarkable difference to client well-being. The economic analysis indicates that, if improvements in mental distress are sustained, the social return on investment (SROI) is at least 9 — meaning that for every $1 invested the return is $9. If the benefit estimation is widened from the health sector to include other outcomes, such as productivity and the monetary value of improved quality of life, then the SROI may be as high as 89.

3) Integrated Models working with General Practitioners

General Practitioners who operate under the Federal health system have not traditionally been involved in developmental screening; but they offer an ideal opportunistic interface between families and the health system to introduce a ‘Medicare-bundle’ funding to facilitate developmental (including social-emotional) checks. Based on the concerns raised during developmental checks, further assessment and early intervention and supports are to be provided (Figure 2: Developmental checks in GP clinics). Our work involving GPs in New South Wales and Victoria showed that it was feasible to administer developmental checks in the GP waiting room during opportunistic visits 18,19 and that the measures used identified children with developmental needs, early and accurately 2.

Figure 2: Developmental checks in GP clinics

Such an approach aligns with the Department of Health and Aged Care’s work on a potential new MyMedicare First 2,000 Days Program to support better continuity of care and better integrated multidisciplinary care for disadvantaged parents and their children in the first 2,000 days from conception. Program elements might include:

  • Child developmental checks aligned with national immunisation schedule and an annual family ‘check’ of child development, parental mental health, and key social determinants of health (e.g., housing, employment, and financial concerns)
  • enrolment of families from antenatal/birth (e.g MyMedicare) to facilitate the annual check
  • support for primary care to respond to issues arising from the developmental and annual family check, including mapped referral pathways to community-based services and strategies for families to use at home to support their child’s development
  • secondary consultation and a regional Community of Practice, led by a salaried paediatrician, to manage more complex children and families

Recommendation Investment in reaching all children (e.g. aligning with opportunistic contacts such as childhood immunisation schedule) and when needs are identified, supporting parents and carers in navigating the health, and social care services and connecting them with appropriate support is critical. Findings from our research on digital platforms to engage families including those from priority groups and service navigation models have shown significant improvement in access and engagement of child and family services, and better child developmental and family psychosocial care outcomes. Hence, we recommend:

The need for wraparound health and social care, particularly for those experiencing vulnerability and/or disadvantage via place-based hubs and other navigation models.

  • Wraparound care for children and families with complex needs across multiple sectors, not just health, but also child and family welfare, social support, and parental mental health is essential.
  • A national approach to support implementation, and training of Service Navigators to assist families in navigating the wider health including parental mental health, infant and child mental health) and social support systems, in addition to education systems.

An example is the ForWhen program.

(c) the role of diagnostic services, existing gaps and barriers, and measures to improve effectiveness, availability and access of such services

Existing gaps and barriers: Currently there are significant barriers and gaps in obtaining diagnostic services for child developmental needs as this is fragmented between state and federal, government and non-governmental, public and private services. State services have long wait lists (as diagnostic services have been cut down considerably when compared to pre-NDIS period) and not fit for purpose as there are no relevant services within the public service system for recommendations arising from such assessments. This has created a need for diagnostic services and recommendations to be matched ‘entirely’ to the requirements of what funding can be sought via NDIS and what support services are available in the ‘postcode’ where the child lives. This has seen the exponential rise of highly expensive diagnostic services in the private system driven by market forces, which in turn has inadvertently made the inequity in access worse for priority population families. A re-imagination of the entire service system as a continuum is needed from 1) health and developmental promotion, nurturing care and anticipatory guidance for all families (universal via primary care and state child and family health services); 2) general supports such as foundational supports for those with mild difficulties and provided outside the NDIS such as state-based allied health services for integrated assessment and service provision and 3) NDIS- funded supports for those with substantial difficulties (more than 2 standard deviation outside what is expected for the child’s age and experiences and taking into consideration the functional needs and family/contextual vulnerabilities).

Measures to improve effectiveness, availability and access: The Watch Me Grow-Electronic (WMG-E) Platform is a digital application in the form of a weblink that was developed to help services reach vulnerable families, including those in culturally and linguistically diverse (CALD) (translations are available), regional/rural and Aboriginal communities leveraging opportunistic contacts (e.g. immunisation and Blue Book recommended developmental checks via trusted service providers that the family is already engaged with and that offers continuity of care). WMG-E uses a weblink with a QR code to ascertain child development, family psychosocial, and parental mental health needs and is available in multiple languages. The platform serves as a universal ‘digital front door’ where parents can actively participate in their child’s developmental screening during immunisation visits or other routine health contacts or wherever they are at, in the community (early childhood education centres, Council or multicultural play groups, Aboriginal led services etc.). If developmental concerns are raised, service navigation (digital via phone, text, or email, or in person) is provided to link families with the right supports for child developmental, parental mental health, and family social care needs. This is particularly helpful to regional, rural, and remote communities. This is because children with concerns that are identified via the WMG-E could be prioritised for assessment by primary health staff such as GPs, Child and Family Health Nurses etc., thereby improving reach and efficiency in the best use of scarce resources. Once checked by the universal service providers if the needs are such that further diagnostic and multidisciplinary assessments are needed, they are supported to access this with the view of identifying children who would benefit from foundational supports (1 to 2 standard deviation) Vs through the NDIS (needs outside 2 standard deviations).

The WMG-E platform 20, is proven to be feasible and acceptable (to parents, including parents from regional, rural and remote communities, multicultural and Aboriginal background) 1,21,22. The program allows parents to complete developmental screening online (along with additional measures, such as parental mental health and family social care needs screeners) 20, with auto-reminders for parents to complete the checks again at the recommended ages and stages, thereby allowing ongoing developmental monitoring as per the schedule in the Personal Health Record (Blue Book) program 70. Once again, this is particularly helpful in resource constrained environments such as regional, rural, and remote communities. Further, the use of opportunistic contacts leveraging on the high uptake (>90%) of the immunisation program in the preschool period (regardless of where and who provides the immunisation) can increase parent engagement in the developmental checks program. However, for the program to be successful, incentives need to be introduced like that of the immunisation program for both health professionals and parents for completing the developmental checks (e.g. an expectation that developmental checks are completed alongside immunisation schedule as a requirement for school entry).

Key findings of the WMG-E service navigation program Participants included parents and caregivers from two priority population groups (parents from multicultural background in South West Sydney and parents from regional/rural and Aboriginal background in Murrumbidgee).

1) Access/uptake of services: The Watch Me Grow Electronic (WMG-E) platform has had a direct and positive impact during Covid-19 when up to 75% of children with developmental needs and their parents reported significant stress 17. Specifically, when GP and child health clinics were closed, the weblink was disseminated to reach families at homes/communities via services that families were already engaged with and trusted (e.g. childcare centres, multicultural playgroups, GPs, Child and Family Health Services) in South West Sydney and Murrumbidgee (including 15% of participants from Aboriginal background). Further, it has been shown that 82% of parents engaged with digital child developmental checks as part of the NSW First 2000 Days Policy initiative and the Brighter Beginnings program of preschool checks in South West Sydney. Once engaged WMG-E sends automated reminders for parents to complete the child developmental checks again at the next recommended ages (e.g. 6, 12, 18, 24, 36, 48 and 60 months). WMG-E was recommended by the 2021 Australian Health Research Alliance report as one of 10 programs of national impact benefitting 63,448 children via empowering parents including multicultural and Aboriginal families to engage in developmental checks and facilitating early identification and raising community awareness.

Watch Me Grow Empowers families to detect developmental problems early: https://ahra.org.au/2021/10/18/watch-me-grow-empowers-families-to-detect-developmental-problems-early/

2) Implementation evaluation outcomes The qualitative work is summarised below.

The participants highlighted the comprehensive and personalised support offered by the Service Navigators

“[Service navigation] actually helps families get connected to what needs to be connected to, whether it’s within the community or whether it is getting help for a mum or for things that you help with your family” (Family Member FA08).

Participants discussed how the Service Navigator simplifies the dense and rapidly changing landscape of services by serving as a central point of contact.

“I think always when services or families have one point of contact, it becomes far easier and far less overwhelming for them to navigate a service system” (Service Provider SP02).

Additionally, the Service Navigator was also reported to be beneficial in rural and remote regions where specialist services are scarce.

“In a remote area where we’ve got limited services for child and family, definitely it [the service navigator] is a good idea” (Service Provider SP06).

Once concerns are identified, there are different pathways for diagnostic referral and services 1) Those with significant issues right from birth or very years in life (e.g. genetic or congenital conditions) or those with substantial difficulties (outside 1.5 to 2 standard deviation for age) who will need straight away referrals to specialist state services and NDIS 2) A group that is going OK and they to be supported with anticipatory guidance and quality resources via Raising Children’s Network etc. 3) those with some concerns (but not outside 1.5 to 2 standard deviation) and needing some support and ongoing monitoring to receive this via foundational supports including mainstream and community services, e-resources, e-hub (and over time their needs will evolve and they then get tiered care based on trajectory) and 4) a group either due to significant developmental and behavioural issues or due to family/contextual issues will need wrap around care and service navigation and support that are best serviced via an integrated child and family service (such as a one-stop-shop hub) for diagnostic and support services.

Recommendation Use of opportunistic contacts for access, engagement, and care for children and families in the first 2000 days.

  • A multi-prong approach of using every opportunistic contact (e.g., Immunisation and general practice clinic visits, child and family health nurse contacts), and ECECs (e.g., supported playgroups, day care centres), Social services, Council and Community (multicultural, Aboriginal etc.) programs in the preschool period to ascertain child and family needs is critical.
  • Using the opportunistic contact families have with trusted service providers will not only help in early identification of needs and provide targeted supports, but also empower parents and caregivers in regularly monitoring their children’s developmental progress.

An example is the Watch Me Grow Electronic program.

(d) gaps and barriers to accessing early childhood intervention and their impact on a child’s overall development, health and wellbeing, as well as on their family or carers and other government services and systems

Currently, 21% of children starting school in NSW are developmentally vulnerable, meaning they do not have the skills to flourish at school and in life 23. They are at risk of lifelong disability, chronic disease, reduced economic opportunity, and intergenerational adversity. Children from priority populations (Aboriginal and Torres Strait Islander, socioeconomically disadvantaged and culturally and linguistically diverse (CALD) communities), have an increased risk of being developmentally vulnerable and not being school ready. These children are twice as likely to struggle at school, experience adverse childhood events, have high healthcare costs, and poor long-term health outcomes, compared to other children. This is compounded by the ‘inverse care law’ in that those with the greatest health and social needs are least likely to have them identified and addressed early 7. While the Federal Government has increased spending to those services supporting young people early in their illness (e.g. headspace), it is critical that support is also offered much earlier in life as younger children including those in the preschool years and their families will reap greatest benefits in the longer term. Late intervention results in an estimated $15.2 billion per annum in education, health, and welfare costs, and lost productivity 24.

Further, access to timely support is hindered by the complex, poorly coordinated, and inefficient nature of the Australian child and family service system with fragmentation, duplication, and service delivery gaps. Such inequity to early identification and support has been exacerbated by the COVID-19 pandemic with missed opportunities for child developmental checks and supports to identify and address parental mental health and psychosocial needs, necessitating novel models of care 25. Our work with consumers including priority families have identified the following barriers and suggestions for improvement: 1) the use of opportunistic contacts (going to where the children and families go) to reduce the need for families to have additional appointments; 2) navigation help with ‘warm handover’, as families typically struggle to find their way around the service system; 3) service integration and continuity across places, systems, and organisations so that they are coordinated; and 4) the need to recognise and support individual and family strengths to redress the imbalanced focus on deficits and untailored referral and care pathways. As part of our post-pandemic recovery, we need an urgent refresh of the existing system, so that difficulties are detected early and equitably, allowing for coordination of health and social care for children and their families.

Investment in screening and early intervention programs is essential. Funding is particularly relevant to increase engagement with developmental checks. In Australia, developmental checks have historically been undertaken by Child and Family Health Nurses as part of the State health system. This will provide cost-benefits as increased access improves child developmental outcomes and parental/family wellbeing and service efficiency and satisfaction.

In relation to Child and Family Hubs, despite many services being funded to co-locate, we know this is not sufficient to deliver a high quality, effective integrated Hub that can support the needs of children and their families. It is clear that delivering the core components of ANY Hub requires funding for co-ordination

or ‘glue’ 1 and this is particularly relevant to the existing Child and Family Hubs currently in operation across NSW. Stakeholder consultation, research, and Network members all converge around the need for ‘glue’ funding for success – this vital ingredient provides the perfect contribution by the Commonwealth for the success of these Hubs. ‘Glue’ funding can be broadly grouped into business oversight, staff supports, community engagement and shared information and technology systems:

Business oversight:

  • A clear governance framework incorporating all partners and family representatives
  • Contracting with a single lead agency who is accountable for all performance measures and sub-contracts any partnership-related work
  • Dedicated funding for social care to avoid further fragmentation of services

Staff supports:

  • Coordinator position to lead collaboration/integration within the hub and a ‘navigator’ role to establish and support networks and referrals with other relevant services
  • A workforce that includes staff with lived experience and/or a cultural background shared with the families the Hub services and supports
  • Funding time for each Hub practitioner to support workforce development and ongoing learning, professional supervision, and collaboration across disciplines
  • Funding time for each Hub practitioner to support ongoing Hub quality improvement and development
  • Other business and operational supports that staff need to perform their jobs properly

Community engagement:

  • Funding to support co-design with the local community, families, children, and Hub staff, which is then continuously improved upon with ongoing community, family and child involvement and guidance
  • Resources required to support families to attend a Hub or to be able to participate in a broader range of supports offered. This includes resources, such as, the use of artworks to humanise, enliven and engage families with the Hub, additional staff, vehicles, and brokerage of client supports such as emergency housing.

Shared information and technology systems:

  • The necessary hardware, software, and capability that a Hub needs, including a data capture system, data sharing capability between services and supports to build data collection and analysis capabilities
  • Dedicated funding and support for harmonised impact measurement data for monitoring and evaluation

Without funding for ‘glue’, undue administrative complexity, ongoing fragmentation rather than integration, and eventual unsustainability of Hubs occurs. This type of funding is essential for sustainability and requires flexibility to account for the maturity of a Hub and to meet the community’s unique needs. There is a role for NSW government in funding ‘glue’ for hubs.

(e) opportunities to increase engagement across sectors and improved collaboration across both government and non-government services, including Aboriginal Community Controlled Organisations, early learning services, educational settings and health services

The Integrated Continuum of Connect and Care (I-CCC) model 5 has been proposed along with the Initial Assessment and Referral Decision Support Tool (IAR-DST) (child and adolescent lift-out) which is a

1 ‘Glue’ funding allows greater integration of services and supports across Hubs and can be broadly grouped into funding for business oversight, staff supports, community engagement and shared information and technology systems.

holistic decision-making framework developed by the Department of Health and Aged Care that uses the stepped care approach to assist service providers in matching consumers with the most appropriate mental health services for their needs 1. The tool comprises of eight domains (4 clinical and 4 contextual): symptom severity and distress, risk of harm, functioning, impact of co-existing conditions, treatment and recovery history, social and environmental stressors, family and other support, and engagement and motivation. Each domain looks at specific factors relevant to making decisions about a level of care that is most likely suitable for a child/adolescent’s mental health treatment needs. Although designed for primary health care settings, this tool provides a critical interface between primary mental health care and acute, tertiary and specialist secondary settings, and assists various parties involved in the assessment and referral process in recommending a level of care for a person seeking mental health support. Our research 26 among representatives from a range of child and family service providers in South West Sydney (including Local Health District, primary care, education, Department of Communities and Justice, Out of Home Care and Aboriginal services, NGOs) perceived benefits including improved efficiency and shared understanding about the ‘whole of child and the family’ needs using the eight domains of the IAR-DST tool. Additionally, emphasis was placed on the necessity of cross-service utilisation of the framework to achieve the intended purpose of establishing a common language and collaboration across service sectors. The processes of how care pathways and levels of integration, practices, and agreements been established and developed across the different health, education, community, and social care services for children and adolescents in the I-CCC model was also facilitated by the establishment of a community of practice, fostering collaboration, shared learning, and continuous improvement among service providers across these sectors. This will involve assessing how the different health and social care services engage in knowledge exchange and support workforce development to enhance service integration and the quality of care.

Our research 27 has also shown that, while understanding Adverse Childhood Experiences (ACEs) is important, assessment and supports would need to also incorporate opportunities for Positive Childhood Experiences (PCEs), strengths-based approaches such as the Healthy Outcomes from Positive Experiences (HOPE) framework 28, and needs assessment to follow frameworks such as the National Framework for assessing children’s functional strengths and support needs 29.

(f) other government or best practice child development and early childhood intervention service models and programs operating outside of New South Wales

The United Kingdom Sure Start Program 30, introduced in 1999, was one of the first to bring together services to provide families of children under 5 the opportunity to access health services, parenting support, early learning and childcare, and parental employment support at one centre. Access to Sure Start centres was found to be associated with significant improvements in long-term educational achievement (positive effects sustained until age 16). Furthermore, attending Sure Start centres increased the likelihood of identifying special educational needs or disability at age 5. There was also an observed reduced reduction in older children (ages 11 and 16) having special educational needs. These benefits were more pronounced in lower-income and ethnic minority children. An economic analysis also showed the centres to be economically viable with benefits outweigh costs (for every British pound the government invested, the benefits to children were worth 1.09 pounds solely from educational benefits and much higher with other wider benefits).

Similar services have been implemented Australia wide, including the Child and Family hubs and eHub 31,32, Tasmania’s Child and Family Learning Centres 33, and South Australia’s Child and Family Health Service 34. These services provide opportunities for integration of care as a ‘one-stop-shop’ or ‘front door’ for families. Such services aim to increase equitable access to and use of: i) information and ii) the existing primary health, mental health, and social services system to improve mental health outcomes for families.

(g) workforce issues in the child development and early childhood intervention sectors, including workforce demand and the availability, quality and capacity of existing workers

The development and implementation of Hubs streamlines professionals’ workload by consolidating necessary services into a single location to facilitate coordination and integration with social care services to wrap support around families with complex psychosocial needs. This holistic approach fosters improved

collaboration, collegiality, workload sharing, and job satisfaction among healthcare professionals, ultimately leading to enhanced efficiency, effectiveness, and outcomes.

A transition in the service model for Child and Family Nurses, coupled with the virtual models, such as WMG-E, offers a promising solution to mitigate workforce shortages. For instance, leveraging WMG-E in collaboration with preschools, childcare centers, allied health professionals, and nurses (including Child and Family Health Nurses and practice nurses at General Practitioner clinics) would enhance the efficiency of Primary Health Care Professionals (PHCPs), by facilitating uptake of developmental checks in the community and via early childhood education services through the Brighter Beginnings program, thereby identifying children whose parents are concerned for further assessment and follow-up. This approach enables PHCPs to function as consultants, providing expert assessment, advice and guidance for children identified as at risk through WMG-E (Figure 2).

While the integration of technology is expected to enhance service efficiency, this might also lead to increased demand for services, as more children with developmental needs are identified. Given the existing shortages of allied health professionals in regional, rural, and remote communities, solutions include new models of care, such as parent groups for children with speech and language delays, access to online parenting programs (e.g. Commonwealth Government’s investment in providing free access to parenting program) and increasing workforce capacity and skills via ‘Community of Practice’ opportunities. Investments are also needed to improve access to allied health professionals in underserved communities. Communities like Taree in the Mid Coast of NSW have developed an innovative Community Connector Program, that supports public and private health providers to attract, connect and retain allied health and other medical specialists to the region in a fee for service model (www.communityconnector.com.au);alongside leveraging telehealth solutions. Thus, across both physical and virtual Hubs, efforts should focus on training and retaining professionals, supporting staff retention by fostering collaboration among different healthcare professionals, ultimately enhancing health and wellbeing parent and children, and workforce efficiency.

(h) measures to implement recommendations of the NDIS Review Final Report and the Disability Royal Commission Final Report in relation to foundational supports

Capacity building should also take into consideration assessment approaches that are strengths-based and incorporate training in frameworks such as strengths-based and culturally safe practices.

The Child and Family Supports Alliance (CaFSA) 35, is a collaborative body of leaders from NSW’s mainstream and specialist community-based and not-for-profit sectors, including national parenting support initiatives. The Alliance developed principles and priority areas essential for developing an effective foundational supports system, that acknowledges the existing systems of community-based organisations,

CaFSA Recommendations

  • Broad stakeholder engagement and co-design: continuously engage with the broad range of stakeholders, including CaFSA on the co-design process to ensure that services meet the diverse needs of children and families.
  • Flexible and inclusive services: Design services that are family-friendly, not time-limited, have broad eligibility criteria, and are easy to access, ensuring they accommodate the unique needs of diverse groups including First Nations people, those from culturally and linguistically diverse backgrounds, socio-economically disadvantaged, rural and remote communities, and other groups e.g. LGBTQI+.
  • Resource Allocation: Secure adequate funding and resources to support specialised support needs and ensure that service providers are well-equipped and trained.

including peer-led and national parenting support services. CaFSA recommend a system wide approach to Foundational Supports for young children and their families that incorporates the following key principles: (1) Utilisation of Existing NSW and National Services (recognise and leverage the current deep experience and collaboration within the current service system to prevent duplication and fragmentation); (2) Seamless Integration (ensure that foundational supports are seamlessly integrated into child and family services); (3) Timely Early Intervention and Early Childhood Intervention (ensure best practice, early intervention strategies and services are prioritised); (4) Ease of Navigation and Accessibility (implement a local community-based navigator role that builds on the organisations services and resources that already exist and which are not seen to be a part of the disability sector); (5) Peer and Parent-Led Initiatives (increase support for peer work and parent-led organisations, recognising the value of lived experience and direct family involvement in service design and delivery); (6) Equitable Service Model (prioritising mixed funding approaches aligned to a range of program types, underpinned by a workforce with competencies in early childhood development, family centered practice and ensure equitable access and integrated services across the educational, health and social sectors.

(i) any other related matter.

Our state and national work suggests a significant increase in the developmental and mental health burden in children as a result of the COVID-19 pandemic 36. Children from disadvantaged backgrounds experience higher rates and three-quarters of children with a developmental disability and their parents report higher stress 37. We urgently need to implement effective prevention and early intervention strategies now to mitigate the likely exponential rise in child and family health, developmental, and mental health issues in the years to come. When considered in the context of previous low uptake and access to developmental checks, delivering these services effectively to those most in need will mean overcoming the current fragmentation of existing services and improving access pathways. The post-pandemic reset represents a once-in-a-lifetime opportunity for effective action that will- alleviate the distress experienced by families with preschool children and improve longer-term outcomes of Australia’s children and hence the social and mental capital of Australian society. Overall, the economic benefits and the wider social return from such fundamental early years interventions is likely to be profound vastly outweighing the investment in hubs and supporting services 38.

Summary It is critical that children with substantial developmental and behavioural needs receive a joined up support system comprising a) early identification through community based opportunistic contacts using hybrid approaches via trusted services that families routinely engage with (e.g. GPs and child and family health clinics, multicultural play groups, Aboriginal and Torres Strait Islander community controlled organisations); b) when needs are identified, provide supports using a tiered approach with foundational supports and ongoing monitoring to be provided and if there is substantial delay (if outside 2 standard deviation of what is expected for the age) with significant functional impairment and needs, then support to be provided to access NDIS; c) interventions to be evidence based and supports to be integrated for child development and behavioural needs, parental mental health, and family social care needs; d) instead of relying on diagnosis and risks and deficits, a strengths-based approach to be used in assessment and support framework.

Our children cannot wait as challenges in early identification of needs, and wait lists are lethal to the developing brain. Hence, we urge that the Commonwealth Government in partnership with the states and territories establish universal developmental checks using accessible programs such as the WMG-E platform and provide assessments using standardised frameworks across agencies such as the IAR and wrap around integrated tiered care and supports such as in STARS for Kids program with matching supports to the needs including service navigation and child and family hubs. Further, via using opportunistic contacts with health (e.g. mandatory vaccination visits) and early childhood education attendance (currently preschool checks are proposed to be made universal) it will be possible to systematically all children, regardless of their family (cultural, linguistic, geographic or socioeconomic) background. Also, where there are significant challenges in continuity of care as maternity services are disconnected from early childhood services, this is to be complemented by Integrated Child and Family hubs to provide one-stop-shop access to co-ordinated tiered services to families in the first 2000 days (pregnancy to start of school). This will address the current

lack of co-ordination between health, early childhood education, social services, justice, and disability sectors. We believe this will be a game changer for overcoming the current inequity in service access, further compounded by structural, technological, social and financial barriers.

We have found that current approaches to identifying and supporting children with developmental needs are failing to consider the cumulative impact of health as well as social determinants of health including parental mental health and family psychosocial needs, particularly among the priority population communities. Such approaches also hinder preventative care by over-relying on diagnoses and not responding to early developmental needs and the socioeconomic contexts (patient-centred and prevention-focused care) in which children and families are embedded, thus missing opportunities for holistic care. Hence, we call for integrating health care with strengths-based approaches and wraparound health and social care with ‘warm handover’ to referred services and ‘continuity of care’ to ensure the referral needs are met, particularly for families from priority population experiencing vulnerability and/or disadvantage.

(Note: trailing references continuation appears on the next page)

https://www.mentalhealthcommission.gov.au/projects/childrens-strategy/childrens-mental-health-wellbeing-strategy/childrens-mental-health-wellbeing-strategy-report/executive-summary

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