NDIA Accountability Project

Mental Health Carers NSW Submission to the Inquiry into Foundational and Disability Supports Available for Children and Young People in New South Wales

‹ PrevPage 1 of 17 · Source p. 1Next ›

Submission No 94

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

Organisation: Mental Health Carers NSW (MHCN) Date Received: 16 September 2026

Mental Health Carers NSW Inc.

Submission to the Inquiry into Foundational and Disability Supports Available for Children and Young People in New South Wales. Response to the Committee’s interim report.

September 2026.

For general inquiries:

About Mental Health Carers NSW (MHCN)

Mental Health Carers NSW (MHCN) is the peak body for carers of people who experience mental health challenges in NSW. MHCN is a community managed organisation that provides systemic advocacy, capacity development and education for the carers, family, friends, and kin of those experiencing mental health challenges across NSW.

In Australia, there are approximately 354,000 mental health carers who, each year, provide 186 million hours of unpaid support.¹ Due to the demands of their caring role, carers are at a high risk of developing mental health issues, as well as experiencing loneliness and social isolation. MHCN supports mental health carers and advocates for services and systems that support them in their caring role. MHCN ensures the voices of mental health carers in NSW, and the people they care for, are represented in policy and service reform processes. We work to uphold the rights of carers and consumers to equitable, accessible, and adequately funded mental health services.

MHCN empowers mental health carers to become champions for mental health reform and advocacy. We engage regularly with carers so they can inform our policy priorities and advocacy; for example, every month we convene the Carers of Forensic and Corrections Patients Network meetings, and peer led Mental Health Carer Connection meetings.

MHCN also provides the Disability Advocacy Futures Program. This program engages in systemic advocacy on behalf of those who experience psychosocial disability. In this role MHCN advocates to non-Health state government services under the Disability Advocacy Futures Program.

MHCN is funded by the NSW Ministry of Health and the NSW Department of Communities and Justice. We are a foundation member of Mental Health Carers Australia.

¹ Diminic, S., Lee, Y. Y., Hielscher, E., Harris, M. G., Kealton, J., & Whiteford, H. A. (2021). Quantifying the size of the informal care sector for Australian adults with mental illness: Caring hours and replacement cost. Social Psychiatry and Psychiatric Epidemiology, 56(3), 387–400.

1

Table of Contents

2

Executive Summary

Mental Health Carers NSW (MHCN) welcomes the interim report of the Select Committee on Foundational and Disability Supports Available for Children and Young People in New South Wales. The report has confirmed the complexity of current services, which are often difficult to access, fragmented in delivery, and accessed unevenly across the state.

The interim report confirms many of the experiences that families and carers of children and young people have raised with MHCN. These include inconsistent referral pathways, unclear eligibility criteria, and high financial and administrative costs. We welcome the report’s acknowledgement that the current system does not meet the needs of children, their families, and carers. We endorse its recommendation for improving the delivery and coordination of early support and providing continuity of care. While the interim report has confirmed that the definition of disability includes psychosocial disability, it is important that dedicated mental health foundational supports be recognised in the framework so that children whose disability emerges through or co-occurs with mental health challenges are not left behind.

Psychosocial disability arises from the interaction between mental health and barriers within a person’s environment. Psychosocial disabilities can be episodic and can occur alongside autism, neurodivergence, and intellectual, developmental or other disability.² These can include paediatric anxiety, depression, trauma-responses, and neurodivergent-related distress.

Children can experience significant functional impairment before receiving a formal diagnosis. These can result in difficulty attending school, maintaining relationships, completing daily activities or participating in family and community life. The needs of these children can fluctuate and become more visible or difference during adolescence. As such, the responsibility for these diverse needs is often divided between families, health, education, and disability and community

² Hamilton, D., Hancock, N., Scanlan, J.N., et al. (2020). ‘The National Disability Insurance Scheme and people with severe and persistent mental illness/psychosocial disability: A review, analysis and synthesis of published literature’, The Australian and New Zealand Journal of Psychiatry 54(12): 1162–1172.

3

services.³ Accordingly, the development of foundational supports must distinguish between clinical mental health treatment and the practical supports children need to attend school, maintain relationships, and participate in daily life.

The report recognised the mental health effects on parents, caregivers, and siblings. MHCN’s work with families and carers means we are well aware of how hard they try to fill the gaps when our systems fragment. They are the ones who coordinate services, respond to distress, and advocate for their loved ones, but this can have serious effects on their health, finances, and employment.⁴ Given the changes to family and carer responsibilities in the new NDIS Bill, the need for community and foundational supports for families will be more pressing.

MHCN recommends that the final report clearly include mental health challenges and psychosocial disability in the design of foundational supports, ensure that there are safeguards against interruptions in care, and that the pathways/interactions between mental health services, schools, and community supports are clearly outlined. These services should also families and carers as partners in and providers of care. Supports should include carer peer support and opportunities for respite and mental health assistance, so that we do not transfer even more responsibility for the delivery of support from the government to families and carers.

Scope of this Submission

This submission addresses the terms of references as published by the Select Committee. It focuses on areas for improvement regarding childhood mental health, psychosocial disability, and family and carer experiences.

³ Interim report, Findings 2 and 11: x-xii. ⁴ Schofield, D., Zeppel, M.J.B., Tanton, R., Veerman J.L., et al. (2022). ‘Individual and national financial impacts of informal caring for people with mental illness in Australia, projected to 2030.’ BJPsych Open 8(4): e136.

4

Overview of Recommendations

No. Proposed Action Terms of Reference Interim Report Recommendation
1 Clearly include psychosocial disability 1(a), 1(b), 1(i) 2, 11, 12, 16
2 Offer functional, non-diagnostic access 1(a)–1(d), 1(h) 11, 12
3 Provide continuity beyond age eight 1(b), 1(d), 1(e) 4
4 Confirm interfaces of health, disability, and education 1(b), 1(c), 1(e), 1(h) 6, 12
5 Support for families and carers 1(a), 1(d), 1(i) 3, 15, 16
6 Embed psychosocial awareness and support in education 1(a), 1(b), 1(e), 1(i) 13
7 Strengthen prevention and early intervention 1(a)–1(d), 1(f) 1, 11
9 Develop psychosocial disability workforce capability 1(b), 1(g) 6, 9, 14, and interim finding 7

5

Detailed Recommendations

Recommendation 1: Clearly include psychosocial disability

Relevant inquiry provision/s: Terms 1(a), 1(b), and 1(i); Interim Recommendations 2, 11, 12, and 16.

Foundational supports must extend to children with emerging mental health issues, episodic impairment, co-occurring disability, and functional needs.

The interim report adopted a broad definition of disability, but its recommendations and support developments should also expressly include psychosocial disability in the design. When psychosocial disability is not directly included, this creates practical risks.⁵ These can include implementation and delivery being organised around mainly development delay and autism and less on other cognitive and psychological needs. Accordingly, children with mental health-related functional needs will be under-represented in public information or policy, and providers may not regard them as part of the eligible cohorts.

MHCN recommends that the NSW Government:

  1. Include mental health challenges and psychosocial disability in the statewide foundational support framework.
  2. Provide disaggregated access and data concerning children and young people with mental health challenges and psychosocial disability who access these supports.

I feel like people don’t see my disability as ‘real’ as other disabilities because they think it is just ‘in my head’

⁵ Williams, T., Smith, G., (2021). ‘Mental health and the NDIS: Making it work for people with psychosocial disability’. In: Williams, T., Smith, G., (eds.) The National Disability Insurance Scheme: An Australian Public Policy Experiment. New York: Springer: 161–191.

6

Recommendation 2: Offer functional, not diagnostic access

Relevant inquiry provision/s: Terms 1(a)–1(d), and 1(h); Interim Recommendations 11 and 12.

Mental health diagnoses help guide and assist clinical care, however barriers around cost, time, and location can prevent or delay diagnosis and, by extension, block access to supports.⁶ Children may experience serious difficulties with school, self, and relationships before a diagnosis is feasible or available.⁷ A 2024 study by HCF found that **28% of parents said their child was late to school or partially absent weekly due to mental health challenges.**⁸ As such, waiting for a diagnosis can escalate distress and family pressure when the child needs support right away.⁹

It can be so hard to get the diagnosis and we don’t have enough resources or know how to support our child when they are waiting and struggling

MHCN recommends that assessments for foundational supports consider the person’s functional needs across time and environments. It must be mindful that family support can support but not fully supplement the diversity of the child’s support needs. As mentioned in recommendation 1, this is highly relevant as the parameters of family responsibilities will change under the NDIS Bill.¹⁰ Families will likely have higher care responsibilities under the amendments and community services and supports must be available to help them support their child/children.

⁶ Malogianni, E., Alenezi, M.F., Renwick, L., (2025). ‘Barriers and facilitators of accessing primary healthcare for patients with severe mental illness: A mixed-methods systematic review using framework synthesis.’ BMC Psychiatry 25(1):1131. ⁷ Parliament of Australia, (2023). Research Paper: School Refusal; Askeland, K.G., Boe, T., Lundervold, A.J., Stormark, K.M., Hysing, M., (2020). ‘The association between symptoms of depression and school absence in a population-based study of late adolescents.’ Frontiers in Psychology 11: 1268. ⁸ HCF (2024). Beyond the Bell: Uncovering the Hidden Struggles of Primary School Refusal Among Australian Families. ⁹ Connolly, A., Giles-Kaye, A., Smith, A., Dawson, G., et al. (2024). ‘Barriers to supporting children’s mental health in Australian primary schools: Perspectives of school staff.’ Mental Health & Prevention 33: 200323. ¹⁰ Shelby-James, T., Rattray, M., (2025). ‘The future of psychosocial supports in Australia: Are the recommendations from the National Disability Insurance Scheme review the answer?’ Community Mental Health Journal 61(7): 1294–1298.

7

MHCN recommends that the NSW Government:

  1. Adopt an eligibility process focused on needs that offsets waiting periods and financial constraints of formal diagnoses.
  2. Assess function across home, education, and community settings.
  3. Recognise episodic needs and the family impact of unpaid care.
  4. Develop a review process for times when an assessment does not reflect the child’s usual functioning.

Recommendation 3: Provide continuity beyond age eight

Relevant inquiry provision/s: Terms 1(b), 1(d), and 1(e); Interim Recommendation 4.

Many psychosocial disabilities emerge, become more prominent, and can impact functional capacity after early childhood.¹¹ As programs such as Thriving Kids focus on children with developmental delays or autism aged eight and under, supports for children with mental health challenges must include dedicated and clearly outlined transition pathways. This means that support should remain in place to guarantee continuity until the next appropriate service for the child’s age group or need can begin delivery.

I have no idea what is coming. What if they age out of the supports and nothing’s there?

MHCN recommends that the NSW Government:

  1. Include pathways to support for children aged nine and over, particularly for those outside Thriving Kids.
  2. Ensure support access remains active until appropriate alternatives are available.
  3. Collect data on interrupted supports, unsuccessful referrals, and waiting periods.

¹¹ West, J.S., Kamis, C., (2022). ‘The long-term impact of childhood disability on mental health trajectories in mid-to-late life.’ Journal of Ageing and Health 34(6-8): 818-830.

8

Recommendation 4: Confirm interfaces between health, disability, and education

Relevant inquiry provision/s: Terms 1(b), 1(c), 1(e), and 1(h); Interim Recommendations 6 and 12.

Clinical care and mental health support are closely linked but they are not always interchangeable.¹² The AIHW stated that **co-occurring mental and neurodevelopmental conditions (e.g., anxiety and ADHD) affect 7-10% of children.**¹³ These increase symptom severity, causes increased functional impairment, and requires integrated holistic supports. For example, a child may require psychological support and counselling but also need different types of help to attending school, develop and manage routines, learn social skills, and build confidence for their functional independence.¹⁴ The map proposed in the interim report (recommendation 12) should account for co-occurring needs such as these. This will help mitigate the risk that one agency may decline support because another may have some responsibility over it.

Mental health factors across every service we use but I genuinely do not know who has carriage of what aspect of it and that is really confusing

It can be confusing and overwhelming for families trying to understand the intricacies of cross-government responsibilities to seek help. **Up to 35% of carers have reported that they do not know what services are available.**¹⁵ Their first contact about an initial concern might be at school, with a general practitioner, at a community centre, or in the emergency department. As such, it is important that foundational supports include no-wrong-door pathways that require action by the service when they are contacted. This will build confidence in the system so that

¹² Every Australian Counts (2026). Speaking Up: The Voices of NDIS Participants with Psychosocial Disability on NDIS Reform: Community Survey Report 2026. ¹³ Australian Institute of Health and Welfare (2026). Young People’s Mental Health; Lawrence, D., Johnson, S., Hafekost, J., Boterhoven De Haan, K., et al. (2015). The Mental Health of Children and Adolescents. Report on the second Australian Child and Adolescent Survey of Mental Health and Wellbeing. Department of Health, Canberra. ¹⁴ Suppiej, A., Longo, I., Pettoello-Mantovani, M. (2025) ‘The pivotal role of mental health in child and adolescent development’, Global Paediatrics 13: 100277. ¹⁵ Diminic, S., Hielscher, E., Harris, M.G., et al. (2019). ‘A profile of Australian mental health carers, their caring role and service needs: results from the 2012 Survey of Disability, Ageing and Carers.’ Epidemiology and Psychiatric Sciences 28(6): 670-681.

9

services are not perceived to be handing users off to another service or department without any follow-up.

MHCN recommends that the NSW Government:

  1. Develop principles that account for the interface of foundational supports with health, education, and child services.
  2. Develop examples of shared service responsibilities and produce escalation/mitigation protocols to resolve agency overlaps and gaps.
  3. Build a comprehensive no-wrong-door system with trained navigators and sustained supported referral procedures.
  4. Account for interim support for situations where responsibility is under dispute or review.

Recommendation 5: Support for families, carers, and kin

Relevant inquiry provision/s: Terms 1(a), 1(d), and 1(i); Interim Recommendations 3, 15, and 16.

MHCN strongly agrees with the interim report’s whole-of-family principle and approach. Our stakeholders of families, carers, and kin regularly raise with us that providing emotional, financial, and practical support, managing risk, and coordinating service use are part of their roles and journeys as a family, but these responsibilities also affect their health and capacity. In 2025, **31.4% of carers reported high psychological distress, face double the rate of poverty (16.7%), and are 3 times more lonely than other Australian adults.**¹⁶ As such, they need mental health support to build and maintain their capacity as caregivers.

¹⁶ Mercuri, A., Burton, B., Epifanio, A., McKenzie, P., (2021). ‘Understanding carer experiences in public adult mental health services using Carer Peer Support data.’ Advances in Mental Health 20: 102-121; Carers Australia (2025). 2025 Carer Wellbeing Survey.

10

Capacity building helps families, but it should not replace direct support from services and government. Our stakeholders have expressed genuine distress at the possibility that, under the new NDIS amendments, supports deemed to be benefit the family will be cut. In their view, this will not only severely impact how they support their loved one but also their own mental health.

When everything feels so uncertain, I need mental health support too, but I am always a mum first.

MHCN recommends that the NSW Government:

  1. Include family and carer peer support under foundational supports, such as practical navigation support and counselling, and age-appropriate information and support to siblings.
  2. Consider how to assess the support needs and wellbeing of families and carers without misrepresenting their capacity to provide unpaid care to limit a child’s access to foundational supports.
  3. Properly embed supported decision-making mechanisms into foundational supports that explain how the child and family/carer will each participate.

Recommendation 6: Include psychosocial awareness and support in education

Relevant inquiry provision/s: Terms 1(a), 1(b), 1(e), and 1(i); Interim Recommendation 13.

School can be a place for early identification of symptoms, stressors, and warning signs. They are often where changes in a child’s wellbeing and behaviour become visible outside the household. Childhood mental health challenges can include paediatric anxiety, depression, trauma-responses, and neurodivergent-related distress. However, a student’s mood and actions could be interpreted as defiance or bad behaviour when they are signs of distress. This can result in school refusal,

We are being asked to identify and manage complex psychological distress in children with little more than a couple of hours of university preparation Australian Education Union

11

exclusion, or discipline when the child requires intervention and support.¹⁷

Currently, tertiary education for primary teaching includes some mental health coursework in content covered by PDHPE and pre-service units.¹⁸ Awareness of childhood mental health in education settings needs to go beyond initial training at university. Teachers report low confidence in identifying early indicators of mental health challenges and there is still approximately just one counsellor for every 650-725 students in NSW public schools, despite recent state investment.¹⁹

Targeted mental health literacy programs are essential for teachers and teaching support staff so they can distinguish between childhood behavioural phases and mental health struggles.²⁰ However, teachers may not have capacity to expand their responsibilities or participate in additional capacity building.²¹ Providing mental health literacy and awareness must therefore consider the time barriers, burn out, and complexities that teachers currently face.

MHCN recommends that the NSW Government:

  1. Engage tertiary education providers to embed mental health content in initial teaching curricula and professional development.
  2. Develop capacity building activities for teachers covering the importance of mental health in the classroom to improve childhood wellbeing and academic outcomes.
  3. Reduce pressure on NSW teaching staff via appropriate resources and classroom support, co-commissioned with family peer workers and allied health professionals.

¹⁷ Adams, D., (2022). ‘Child and parental mental health as correlates of school non-attendance and school refusal in children on the autism spectrum.’ Journal of Autism and Developmental Disorders 52(8): 3353–3365; Maynard, B., et al., (2018). ‘Treatment for school refusal among children and adolescents: a systematic review and meta-analysis.’ Research on Social Work Practice 28(1): 56. ¹⁸ Moore, B., Redshaw, S., (2023). ‘Students’ mental health is a big issue for schools – but teachers should only be part of the solution’, The Conversation, March 28, 2023. ¹⁹ Connolly, A., Giles-Kaye, A., Smith, A., et al. (2024). ‘Barriers to supporting children’s mental health in Australian primary schools: Perspectives of school staff.’ Mental Health Prevention 33: 200323. ²⁰ Darling, S., Dawson, G., Quach, J., Smith, R., et al. (2021). ‘Mental health and wellbeing coordinators in primary schools to support student mental health: Protocol for a quasi-experimental cluster study.’ BMC Public Health 21(1): 1467. ²¹ Connolly et al. (2024).

12

Recommendation 7: Strengthen prevention and early intervention

Relevant inquiry provision/s: Terms 1(a)-1(d), and 1(f); Interim Recommendation 1 and 11.

Traditional developmental screening does not always identify emerging mental health and psychosocial concerns in children and young people.²² This has led to the increasing need for routine developmental and health checks to integrate social-emotional and mental health assessment.²³ **While over 1.25 million children and young people in Australia experience mild to moderate mental health needs, just 13% of that cohort can access primary care hubs, such as Headspace and Kids Hubs.**²⁴ For children under 12, only 3% access these hubs.²⁵

The earlier we intervene in life, in distress, and in the onset of illness, the chances for better recovery are much, much greater. Professor Helen Milroy

MHCN supports the report’s proposed prevention and early intervention investment framework, however, we note that developmental screening will not identify every child with emerging mental health challenges and psychosocial disability. Moreover, we draw the committee’s attention to the fact that screening without a service response causes distress and leaves families with additional responsibility but without guidance or support.²⁶

MHCN recommends that the NSW Government:

  1. Include psychosocial functioning and social-emotional and mental wellbeing in addition to ASQ and PEDS screening and link with follow-up care.

²² Barger, B., Rice, C., Roach, A. (2018), ‘Socioemotional developmental surveillance in young children: monitoring and screening best identify young children that require mental health treatment’, Child and Adolescent Mental Health 23: 206–213. ²³ Australian Government Department of Health, Disability and Ageing, (2025). National Guidelines for including mental health and wellbeing in early childhood health checks. ²⁴ McGorry, P.D., Coghill, D., Berk, M., (2023). ‘Mental health of young Australians: dealing with a public health crisis.’ Medical Journal of Australia 219(6): 1465-1477. ²⁵ BFB Labs (2025). Out of Touch: Transforming Early Intervention in Australia’s Youth Mental Health System. ²⁶ Peterson, L.S., Villareal, V., (2024). ‘Ethical considerations in school-based mental health screening and service provision – a commentary.’ Journal of School Health 94(12): 1196-1199.

13

  1. Provide low-barrier support for children and young people while assessment or follow-up care is pending.
  2. Allocate foundational supports funding to neighbourhood centres, libraries, Kids Hubs, and Safe Havens to provide community support and additional service entry points.

Recommendation 8: Develop a psychosocial disability and childhood mental health workforce strategy

Relevant inquiry provisions: Terms 1(b) and 1(g). Interim Finding 7 and Recommendations 5, 9 and 14.

Foundational supports need skilled workers, especially when the interim report found that workforce shortages delayed access to early intervention and affected service quality. High workloads, limited career pathways, and uncompetitive pay made it difficult for services to recruit and retain staff.²⁷ The report cited there were currently 20.5 allied health professionals per 100,000 people in rural areas, compared with 40.7 in metropolitan areas. Among families who responded to the inquiry’s questionnaire, **39% waited more than one year for a diagnosis and 20% waited two years or longer.**²⁸

Regularly attending training increases your confidence. It reduces the risk of burnout and the stress of responding to mental health crises. Black Dog Institute

When services are unavailable or at capacity, parents and carers inevitably fill the gaps, and this affects not only their employment and finances but also their wellbeing. The workforce strategy proposed in interim recommendation 14 must include workers with specific knowledge of child and adolescent mental health, psychosocial disability, and family-inclusive practice. By increasing the number of workers and ensuring they have the skills to recognise and respond to needs, they can mitigate crisis and reduce the strain placed on families and carers.

²⁷ Interim report: 45-47, 67. ²⁸ Interim report: 29-30.

14

MHCN recommends that the NSW Government:

  1. Consider how best to include a range of child and adolescent mental health practitioners, social workers and psychosocial recovery workers in the foundational-support workforce.
  2. Fund youth mental health peer work and family and carer peer work with appropriate supervision through a multi-year indexed funding program so community organisations and LHDs can provide secure employment and retain experienced staff.
  3. Require the workforce to undergo training in childhood mental health and psychosocial disability, with a focus on trauma-informed practices, supported decision-making, and family-inclusive care that is developed with input from lived experience representatives and peak bodies.

Conclusion

MHCN thanks the inquiry for opening this round of consultations and submissions. It is important to get foundational supports in NSW right to provide help before children, families, and carers reach crisis point. However, this opportunity will be lost if mental health challenges and psychosocial disability are not expressly addressed by these supports.

Children and young people experiencing mental health challenges must not be forced to wait for their needs to become severe, dangerous, or permanent before they can access foundational supports. Families, carers, and kin must not be expected to hold everything together through unsupported care. MHCN thus recommends that the final report establishes a clear place for mental health challenges and psychosocial disability within NSW’s foundational support system for children and young people.

15