Submission 300 — Kindship — Inquiry into the Thriving Kids initiative

Thriving Kids Inquiry Submission

A disability-led, peer-powered model improving outcomes for families

Prepared by Kindship | 2 October 2025

Organisation Details

This inquiry is submitted by Kindship.

Contents

• Executive Summary

• Our Reach

• Key Insights Across Terms of Reference

• Implications for Thriving Kids

• Effectiveness of current Programs and Initiatives

• Equity and Intersectional Issues

• Workforce Support and Training Gaps

• Family Support Pathways Case Study & Evidence

Appendices

• Appendix 1: Member Survey Snapshot (June 2025)

• Appendix 2: Case Example (Middle-Income Family with Multiple NDIS Plans)

• Appendix 3: Program Data and Feedback Breakdown

• Appendix 4: Example Support Plan

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Our reach

1,200 daily active users in Kindship Connect Facebook Group.

1,400 families registered for our Decoding the NDIS webinar series within four months, through organic reach alone.

338 peer navigation calls delivered (Dec 2024–Sep 2025)

Helping families find clarity, confidence, and connection.

Key Insights Across Terms of Reference

• Effectiveness of Programs: Families consistently report that current services are fragmented, inaccessible, and misaligned with their needs. Kindship’s Family Support Pathways delivers tailored support plans, described as practical, human, and transformative.

• Equity and Intersectionality: First Nations and CALD families face cultural and access barriers. Middle-income families also miss out; Appendix 1 details a family with four NDIS plans still unable to access adequate support despite crisis-level behaviours.

• Workforce Gaps: Professional qualifications alone are insufficient. Families value empathy and lived experience. Kindship’s peer navigators combine lived expertise with evidence-based guidance, complementing allied health and education professionals.

• Seamless Transitions: Fragmentation across mainstream and disability systems leaves families without clear pathways. Barb, our e-navigator, delivers consistent, peer-reviewed guidance while peer navigators adapt delivery for specific cultural and community contexts.

• Best Practice Alignment: Our model reflects international best practice by integrating ethical co-design, accessibility, and community-led delivery. Partnerships with CSIRO and Australia’s AI research institutions ensure rigorous evaluation and quality assurance.

Implications for Thriving Kids

• Families require practical, culturally safe, and timely supports—not just referrals to directories or waiting lists.

• Peer-led, evidence-based navigation models improve parental confidence, reduce stress, and increase engagement with mainstream systems.

• Scaling models like Family Support Pathways will reduce crisis responses, deliver developmental gains, and provide cost-effective benefits across government and community systems.

Examine the effectiveness of current (and previous) programs and initiatives that identify children with development delay, autism or both, with mild to moderate support needs and support them and their families.

This should focus on community and mainstream engagement, and include child and maternal health, primary care, allied health playgroups, early childhood education and care and schools.

Kindship engages with thousands of parents of children with disabilities every year, providing a unique perspective on the effectiveness of existing programs and initiatives. Among our members, 51.7 per cent are parents of children aged nine and under, and 86.5 per cent are parents of children aged 18 and under. Through the Kindship Connect Facebook Group, we support approximately 1,200 daily active users, making it one of the largest peer-to-peer platforms for families of children with disability.

Between April and September 2025, Kindship delivered 338 peer navigation calls to parents on a wide range of topics however mainly focusing on supporting families to work across the fragmented mainstream and disability service interfaces. These calls provide families with tailored, practical guidance from trained peer navigators who combine evidence-based information with lived experience insights.

In addition, Kindship launched a parent-specific webinar series, Decoding the NDIS, which runs monthly and addresses both mainstream and disability systems. In just four months, nearly 1,400 families registered through our existing organic audience alone. This strong uptake demonstrates not only the need for reliable, accessible information but also the trust and reach Kindship has established with this important consumer group.

These outcomes highlight that family-centred, peer-led approaches—when backed by evidence and co-designed with parents—are highly effective in improving engagement, building parental confidence, and addressing the systemic gaps that continue to undermine the effectiveness of mainstream and community programs. Importantly, the effectiveness of this model is reinforced by the high-quality data we collect from our members, which directly informs service responses.

Appendix 1 provides a snapshot of the results from our June 2025 member survey, offering invaluable insights into family experiences and needs.

Kindship has developed a distinctive workforce model by employing individuals with lived experience of disability and/or caring for children with disabilities. This approach delivers a level of empathy, understanding, and connection that traditional service providers are unable to replicate. Families consistently report that this peer-led support feels more authentic and effective in addressing their needs.

To date, Kindship has supported numerous families through the new Family Support Pathways program, which combines our digital e-navigator, Barb, with the guidance of a peer navigator. Appendix 3 provides a detailed breakdown of the data and feedback collected from this program. These tailored support plans help ease the overwhelming burden parents face when navigating fragmented systems and enable families to more effectively identify and access the supports most relevant to their needs. We have included an example of the support plan, see Appendix 4.

Family feedback highlights the program’s effectiveness:

The Family Support Pathways program, alongside the Kindship Connect community, has given us unique insight into the gaps and barriers that families face when attempting to access mainstream services. The most commonly reported barriers include:

• Financial cost of services and equipment.
• Carer burnout and the absence of practical, everyday supports.
• Lack of availability and accessibility of mainstream supports.

While anecdotal, these insights are consistent across thousands of family interactions and provide valuable evidence of systemic gaps. Families report that:

• Mainstream services often default to referring families to early childhood partner organisations, regardless of the child’s or family’s specific circumstances.
• Families in regional areas are unable to access these services face-to-face.
• Early childhood partner staff frequently lack an in-depth understanding of disability and provide only generic recommendations, such as Google searches or postcode-based provider finder. Registered NDIS providers are even less available in regional and remote areas.
• Many mainstream services decline to support children if they have NDIS funding, even when families cannot practically access NDIS-funded supports.
• Carers Gateway previously offered practical supports such as cleaning and meal preparation, which continue to be the most requested and useful services, but these are no longer available.
• There is little support available that looks at the whole family unit; it is typically the child as an individual, even though mainstream providers say they are there to support the whole family.

Parents repeatedly tell us that while many services are willing to listen, this alone is not sufficient. Families need practical, immediate assistance to survive the demands of daily life with a child with developmental delay or disability.

Reflection exercises, time management strategies, or behavioural charts are not effective for families who are operating in a state of constant stress and crisis.

These families require support that meets their most immediate needs, enabling them to move beyond survival mode and begin engaging with developmental support for their children.

Taken together, the evidence demonstrates that while some current programs and initiatives provide pathways to support, they remain inconsistent, inaccessible for many families, and often misaligned with the realities of family life.

Kindship’s lived-experience workforce and integrated peer and e-navigator model provide a more effective and responsive approach, complementing mainstream services such as maternal and child health, primary care, allied health, early learning, and schools.

Identify equity and intersectional issues, in particular, children who identify as First Nations and culturally and linguistically diverse.

Kindship’s day-to-day engagement with families highlights persistent equity and intersectional barriers across mainstream and community systems. While First Nations and culturally and linguistically diverse (CALD) children face well-documented access and cultural-safety challenges, our evidence shows that families outside traditional “disadvantage” categories—particularly middle-income households—are also falling through the cracks when supports are fragmented, gatekept, or practically inaccessible.

Observed equity and intersectional issues

• Cultural safety and relevance of information. Families report that frontline guidance is often generic, with referrals to directory searches rather than tailored pathways. This disproportionately affects First Nations and CALD families who need culturally grounded, locally relevant options—not just postcode lists or self-directed “Google” searches.
• Access constraints for regional and remote families. In thin markets, early childhood partners or mainstream services are frequently unavailable face-to-face; families are redirected rather than resourced, compounding delay and disengagement.
• Middle-income families are missing out. Equity gaps are not confined to low-income cohorts. Appendix 2 documents a middle-income household (combined income ~$200,000) with multiple children with disability facing extreme behavioural risk, extensive waitlists, and repeated ineligibility or deflection across services—despite proactive help-seeking. This case illustrates how income alone does not ensure access or safety when systems are fragmented.

What works to narrow these gaps

• Consistent back-end, tailored front-end. Kindship’s model separates evidence-based, peer-reviewed guidance (kept consistent and quality-controlled) from its delivery, which is adapted by trained, target-group-appropriate staff (e.g., First Nations/CALD peer navigators, parent-to-parent support). This preserves fidelity while ensuring cultural safety and local fit.
• Structured accessibility supports. Easy Read and multilingual materials, plus scheduled accessibility check-ins (with peer navigator and/or interpreter assistance), enable families—especially CALD and regional—to complete information-gathering and decision steps they would otherwise abandon.
• Co-design with peak bodies. Ongoing collaboration with peak organisations ensures guidance reflects best practice for specific communities, rather than retrofitting generic materials.

Implications for Thriving Kids

Equity requires more than eligibility pathways; it requires practical, culturally safe, and navigable pathways that middle-income, First Nations, and CALD families can actually use.

The evidence above, including the middle-income case in Appendix 2, indicates that without tailored delivery, loss of practical supports, regional thin markets, and provider deflection will continue to produce inequitable outcomes—even for families who are resourced, proactive, and highly motivated.

Identify gaps in workforce support and training required to deliver Thriving Kids.

Peer support is a critical yet underutilised component of the workforce required to deliver early intervention programs to families and children with developmental delays in disabilities. Kindship has facilitated thousands of peer-support style conversations, with over 1,200 families engaging actively in our online community each day, alongside growing demand for in-person community-based support. This demonstrates both the trust families place in peer-led models and the scale of unmet need.

Current workforce models, such as those employed by early childhood partners, rely heavily on allied health and early childhood education qualifications. While these professional skills are important, our experience shows they are not sufficient on their own. Families consistently report that lived experience and empathy provide a level of connection and trust that outweighs academic qualifications.

Kindship’s hybrid model bridges this gap. Our e-navigator, Barb, provides evidence-based, co-designed recommendations, while peer navigators, individuals with lived experience of disability or caring for a child with disability, deliver these supports. Peer navigators undergo rigorous training to ensure quality and safeguarding but are not required to hold tertiary qualifications. Their lived expertise provides unique value that cannot be replicated through traditional training.

By embedding co-design, ensuring that all information is evidence-backed and quality controlled, and equipping peer navigators with targeted training, Kindship has demonstrated that this blended model delivers significant benefits to families. Scaling this approach has the potential to transform early intervention by breaking down barriers families currently face and ensuring that support is both accessible and meaningful for children with mild to moderate developmental delays.

Identify mechanisms that would allow a seamless transition through mainstream systems for all children with mild to moderate support needs.

No two NDIS plans are the same, and this inconsistency creates significant barriers for families of children with mild to moderate developmental delays. A mechanism is needed that can provide reliable, evidence-based guidance while also adapting to the diverse realities of families across Australia.

Kindship’s e-navigator, Barb, is designed to address this challenge. Barb is not a static tool; it grows and evolves with every family it supports. This ensures the true essence of co-design, flexibility, and responsiveness to sector needs. Information contained in Barb’s toolkits is evidence-based, peer-reviewed, and developed in partnership with sector experts. While the back-end quality of information is consistent, the front-facing delivery can be tailored to meet the needs of different groups, such as:

• Culturally appropriate peer navigators for First Nations or CALD families.
• Parent-to-parent models for families seeking shared lived experience.
• Technology-enabled delivery for regional and remote families, ensuring thin markets are not further disadvantaged.

This approach is comparable to South Australia Police Community Constable initiative, which recruits members of Aboriginal and culturally diverse individuals to bridge gaps in policing by combining professional training with cultural understanding and trust. Similarly, Kindship’s blended model ensures that families receive personalised, accessible support while the integrity of evidence-based information is maintained.

Key Components of Seamless Transition

• Evidence-based peer-reviewed e-Navigator Guidance: Provides personalised information on accessing supports. The information is consistent and rigorously quality-controlled, while the delivery can be adapted by appropriately trained staff to meet the needs of specific target groups.

• Inclusive and Accessible Communication: Information is available in Easy Read and over 50 languages. Accessibility check-ins are built into the process, allowing users to complete information gathering with the support of a peer navigator and/or interpreter.

• Community and Peer Support: Online and in-person peer networks that provide emotional support, social inclusion, and knowledge sharing.

Practical Examples of Transition Support

• On-demand personalised advocacy: If a child is denied access to mainstream education due to their access needs, Barb provides step-by-step advice on how to advocate for their rights and who can support the parent to do this.

• On-demand navigation education: Parents receive tailored guidance on eligibility, required documentation, and service pathways, ensuring they can engage effectively with both mainstream and disability systems.

• Community engagement: Volunteer-led meetups and online forums connect families to one another, reinforcing formal guidance with lived experience.

Ensuring Quality Outcomes

Kindship has developed a comprehensive framework to ensure quality, accountability, and impact:

• Ethical Co-design: Families are engaged in continuous feedback loops, with rapid integration of user insights.

• External Quality Assurance: Developed with Australia’s leading AI institutions to ensure reliability, compliance, and best practice.

• Impact Evaluation: Developed with CSIRO, using both quantitative and qualitative measures such as Net Promoter Scores, social connectedness scales, and longitudinal follow-up.

Positive Outcomes

Kindship’s blended digital and peer-led model demonstrates that seamless transitions are achievable when families are provided with:

• Enhanced social connectedness through peer support networks.
• More effective advocacy and navigation, leading to better sustainability of informal supports and efficient engagement with formal supports which ultimately leads to better outcomes from early intervention.
• Sustained empowerment, with reduced dependence on costly external services over time.

Business Model and Funding Justification

Under the current mode of delivery, our hypothesis is that this framework is cost-effective, averaging approximately $216 per participant at scale. The model delivers cost savings by:

• Avoiding more expensive alternatives, such as traditional case management.
• Improving efficiency across support systems by reducing duplication and limiting the need for corrective interventions, while minimising costs to government and service providers by ensuring families access the right supports at the right time and reducing reliance on remedial or crisis responses.
• Helping families efficiently access disability, health, and community services, reducing duplication and pressure on mainstream systems.

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Supporting evidence and case studies

Appendix 1 - Kindship June 2025 Survey Results

What’s something that feels especially hard right now?

• Sibling relationships
• Finding supports, understanding all Ndis changes, school not listening or being able to provide support child needs. Feeling so alone and isolated.
• NDIS Cutting and denying essential supports and taking away choice and control. Anonymous people in offices far away who don’t know or understand the situation making decisions that are incorrect. Also it’s obvious many reports that have been done by professionals for the participant aren’t even being read. Our plan manager has seen new NDIS plans and said she sees lots of generic cut and paste that misses the mark and needs. The NDIS seems to be in a tangled and muddled mess and forgetting that the number 1 priority is the participants with disabilities. Life for people with disabilities and their carers is tough enough already. NDIS makes leave us more stressed and distressed, and it also seems to be an adversarial lawyer-friendly system rather than a people-with-disabilities-friendly one. We appreciate what we get help with - and it’s really tough for us too.
• Trying to balance after school unmasking with not too much screen time.
• Trying to be social with my son who is a significant disability and finding activities that he is interested in. Also behaviours and emotional regulation.
• Finding time to spend with friends and work on my career and personal goals
• Being a Carer with my own Health Issues
• Navigating the homeschool enrolment process because school can’t became unbearable.
• Emotional regulation and carer burnout
• Balance between caring for my child and making sure my own wellbeing needs are met.
• failing support in school
• Juggling all my sons needs and trying to stay on top of my own
• Lack of social participation, no friends, no play dates or invites out ever.
• Carer burn out and juggling appointments and advocacy
• Fighting for our families basic needs to be heard and assisted in regards to the NDIS
• Financial hardship
• Knowing what will be best for him next year when he comes out of school
• Experiences that you can’t control. Child finding her identity and don’t want to associate with her mum.
• Advocating and getting the right diagnosis’s and support.
• Working fulltime, juggling therapies and keeping on top of everything.
• Lack of school support
• Family members accepting diagnosis but not disability.
• Advocating for a fair ndis plan, juggling appointments/therapy/work/parental responsibilities
• Getting ready for high school
• Every day feels like Groundhog Day
• NDIS took away funding for a support person to assist my 14yr old who has huge behaviour issues. However because he can wash his hair without me they claimed i didnt need the extra hours of support. He cant do anything else for himself but he can wash his hair. He now beats on me at least twice a week when he is heightened. as my funding was cut so much i had to let my support worker go. Im broken… but i have no one to help. So i have to keep going.

• Being able to purchase disability specific things that help our child with fine and gross motor skills and emotional regulations without them being considered as ‘toys’ or ‘sensory items’ and therefore not funded by the NDIS anymore, despite them being used due to our child’s disability
• Neuro affirming care
• The constant mental load of my caring role and the endless need to “justify” to the powers that be why our children need the supports they need.
• Life
• Just trying to get the basic needs of shopoing and house cleaning along with therapy, medical appointments and paperwork. Im not living I am in survival and feel isolate as my son is even knocked back from disability groups for having too high a need
• Therapists unable to provide sessions sue to hourly rate and travel cuts
• Burnout
• As a carer watching families stuggle to find inclusive activities
• Uncertainty regarding provider travel cost cuts and the impact on our supports. Plus the looming “foundational supports” and whatever that means
• Grandkids atritude
• Getting access to the right supports that actually benefit my daughter that are on the NO list - I don’t want to waste money or traumtise her by accessing services approved that dont accommodate her needs - so we do nothing, isolated, burnt out and in fear of the perception funding isnt needed.
• Greater support for parents is vital too
• Finding & keeping support staff to support my son with multiple & complex needs. PLUS all the many NDIS changes!
• Our ndis plan hasn’t come through so we are still paying for everything out of pocket
• getting the school to treat our child as a normal child, not ‘special’
• As a single mother to three children — two of whom have disabilities — one of the hardest things right now is the ongoing financial strain and emotional exhaustion caused by insufficient NDIS funding for my children’s individual needs. Despite my best efforts, the supports funded in their plans simply don’t go far enough. I am constantly forced to prioritise or forgo vital therapies, respite, or developmental supports, which places added pressure on me as their sole carer. Without adequate funding, I often have to step into roles that trained professionals should be filling — therapist, support worker, educator — while still parenting all three children alone. This results in deep carer fatigue and burnout, and it affects not only my well-being, but the overall stability and opportunities available to my family. There is also very little flexibility to respond to changing needs or emergencies. I’m often left feeling powerless, unsupported, and isolated while trying to meet complex needs with limited resources. What feels especially hard is knowing my children could thrive with the right support — and that I could continue caring for them with strength — but the system is not providing what we genuinely need to achieve that.
• Getting enough funding for support workers
• We have our 18yo autistic grandson as well as his AuADHD/CPTSD mother with us, future feels hopeless
• Juggling the demands of daily living with 3 neurodivergent kids (9, 13 & 19) each with different & challenging needs. Plus I am 49yo in perimenopause with chronic pain (3+ years), late diagnosed at 45 with inattentive ADHD, now in the process of confirming ASD & soon a functional capacity assessment after severe burnout on 2021 from which i’ve never fully recovered & chronic fatigue.
• Fitting everything in - three children with significant needs
• My daughter has ARFID, OCD, PDA, ADHD, AUTISM and she’s struggling to cope with school (refusal), just started high school, just started menstruating, and we are coping with her older brother at home with a new severe brain injury and my loss of income. There are so many other issues too. It all feels overwhelming and unsustainable.
• Trying to continue to do it all even when I’m in pain, cause I’m the only one that’s here, everyone else goes to work
• The constant change at lifestart Penrith. Everytime I contact for help my coordinator has left, then the new one doesn’t provide me the information I asked for so then I have to call back again. It’s exhausting. I feel so alone in this. Because of this I’ve decided to go plan managed at our next review as it’s impacting my mental health and I need more support

• The constant change at lifestart Penrith. Everytime I contact for help my coordinator has left, then the new one doesn’t provide me the information I asked for so then I have to call back again. It’s exhausting. I feel so alone in this. Because of this I’ve decided to go plan managed at our next review as it’s impacting my mental health and l need more support
• everyone sees my kids as a cash cow (its so disheartening)- and we are not getting the actual support we need most
• carer burnout and dealing with my ODD. Conduct disorder 12 year old.
• Arranging travel plans given all the additional equipment and paperwork required. And for international travel insurance. Fear of wheelchair being destroyed in cargo!
• NDIS fight for funding
• Finding the right balance between therapy and avoiding burnout.
• Thinking about transitioning how to transition to adulthood with no support.
• I had to quit my job as a support worker and support coordinator to care for my son and daughter. Dealing with up to 5 hours of aggressive and dangerous meltdowns daily. Dad had to quit his job too our relationship has broken down with the stress. Having to fight every step for funding. Had to go to tribunal for my son and they gave us even more than what we were asking for but now at the same stage with my daughter having to go to tribunal. We live 45 mins from town - we had to move so we could afford life on one wage but no providers will attend without provider travel and due to the kids age they have to have in home supports so without travel support workers can’t come. I am tired of having to fight every step. So broken. I am so tired of being hit, punched, kicked, spat on, hands around my throat, hair pulled and having objects thrown at me and having to get my 6 year old to run to her room to safety for NDIA to tell me its ‘normal parenting’. Trying to juggle finances and care. There is no formal respite where we live. It’s exhausting. Families need to be seen as a unit and support worker hours to be used with both kids. Pressure on families to push back on providers regarding costs instead of doing it yourselves. Short sighted plans - putting the money into kids while they are young will ensure more positive outcomes rather than chasing your tail especially where behaviours of concern are involved. I really feel that if behaviour practitioner is saying 2 adults need to be present for safety and NDIS is only funding 3 hours a day of supports that parents with cert 4 in disability should be able to be utilised and paid so they can support their children rather than trying to work opposite hours to survive.
• Wondering if we’ll have enough ndis funds because the providers are adding more ways to increase payments!
• A lack of understanding regarding my sons disability, and what his ongoing needs will be as he gets older. And a year long saga to get a power wheelchair for him, which was again declined for a different reason! This review we had supports removed, and are being told his support are parental responsibility at age 17!
• Navigating the changes and how it impacts. And trying to find the time when the brain is working to sort it ‘all’
• Planning review process and funding periods which reduce flexibility
• Mental load of fitting everything in and ensuring we have enough time and money for appointments
• Balance is impossible trying to be everything to everyone, making sure both my children have equal time and their needs met. Working full time being a mum, a unofficial support coordinator, school advocate, preparing for an NDIS review. Its all too much.
• Behaviour
• The constant intense advocacy required to support an autistic pda kiddo in every sphere of their lives. Services that simply do not have knowledge, understanding and experience with best practice in this space. Especially the NDIA where of all places, this knowledge should be held.
• School refusal and finding appropriate supports for older children.
• Being physically and emotionally abused by a 4 year old and knowing it’s all just because his nervous system is fried. My kids are high masking and super smart and I feel like because they present quite typically the meltdowns and restraint collapse is so much bigger and harder and trying to get diagnoses is a nightmare.
• The ndis taking away things that were my core pain relief tools
• My daughter not understanding when I don’t have something she wants or something she wants she can’t have making her understand

• My daughter not being able to self regulate
• Advocacy
• My sons plan not meeting his needs, Carer burnout causing extreme emotional stress and no enough emotional support to help deal with the stress, constant advocating my sons needs, Having to leave work early to pick son up from school because of his behaviours and losing work due to this. Being a single mother this is hard to maintain financially especially with the high cost of living.
• NDIS limited understanding of hidden disability
• I have had to take out mental health plans for psych and cancel OT to get the most out of my funding. They fund things I don’t want or need but I can’t get funding for what is working.
• Travel funding being cut, art therapy being cut, funding being slashed
• Emotional regulation
• School refusal
• Dealing with his chronic pain and managing his conditions
• Not knowing how to best help my child
• my child struggles to get enough sleep at night and morning and school is hard as is socialising
• Emotional regulation and feeling isolated
• The cost of living and finding money for petrol etc for all appointments. Centrelink makes it so hard for carer payments etc
• Claiming NDIS Funding
• Having my son with us 24/7
• It feels like I’m doing the same things daily and making little progress. Not having enough time for the kids as I need to work full-time
• Being declined for something my child needs to access life a wheelchair this fight is ridiculous for this child to do anything mobility is important
• NDIS to not be cutting supports
• Change of situation not being a ruined by ndis within 21 days per their service charter, complaints person closing case after a patronising phone call, telling me I m a good Mum, escalation from LAC. Plan was grossly inadequate and simply rolled over in January, and we are now out of funding and can’t access support workers
• Carers and families not having the right support or any. Which causes burn out. Which is meaning for our family that we can’t implement therapy at home or help our child the best we can. Looking at it as a whole family approach and the whole family dynamic would give the best outcome to the child
• Teenage behavioural issues at school. And outside of school. Managing a school system that doesn’t understand our kids
• Directly NDIS related: one of my children is about to turn 18. The fear of what will happen if he loses his funding and the rigmarole I have to go through to get guardianship and still be able to help him manage the whole system is overwhelming and daunting.
• Life
• Financial burden. NDIS funds were slashed. We are self managed but they “locked” AT and is the only part that is AGENCY MANAGED. I have had to fund $7,300 to upgrade his orthotics ourselves. I just couldn’t fight them and go through the demoralising process with NDIS. At plan review 6mths ago I got told “NDIS is a choice, and withdraw if I would prefer” because I was advocating so hard.
• Sleep… or lack there of
• We moved to Central West a little over 2 years ago, and there is a huge deficiency in Therapy options and social activities for children on the spectrum. We have a 6 and 11yr old, both on NDIS, and rely heavily on telehealth appointments with therapist to get the help we need. It’s a struggle.
• Having my child in yr 7 with very little support for a learning disability

• Juggling it all while caring for siblings and their needs too
• Not having accessible respite
• We moved to Central West a little over 2 years ago, and there is a huge deficiency in Therapy options and social activities for children on the spectrum. We have a 6 and 11yr old, both on NDIS, and rely heavily on telehealth appointments with therapist to get the help we need. It’s a struggle.
• Having my child in yr 7 with very little support for a learning disability
• Juggling it all while caring for siblings and their needs too
• Not having accessible respite
• Feeling alone whilst trying to navigate the life of a parent/carer. The overwhelm is so huge and constant. This life is incredibly isolating. And then the stress of battling the NDIS to try and get your child’s basic needs met.
• 22 son wants to move out of home
• In the middle of a new NDIS Plan process, my son’s behaviour has changed due to his development progressing to a whole new area so seeing more mature but increasingly worrying behaviours. Hard to explain but is proving to raise whole new sets of challenges. Going through the assessment process (FCA, BSP) is not a kind process in fact this time around it is brutal. Reading, hearing about your own child poses a great risk to your safety is not nice on your mental health!!
• Family therapy to co parent our daughter
• Everything we are going through at atm
• Juggling appointments and still giving time to my non disabled child
• Keeping track of everything
• Sleep
• Social skills
• Going through the Tribunal process with NDIS for one of my children. I have 2 with disabilities
• My child is extremely complex with medical, physical and neurological needs that add extra complications and risk with his behaviours. Hes 2:1 to get out and even then it’s incredibly hard and often impossible to go anywhere. Hes also suspended from school. Hes only 13, still growing and things are already impossible.
• Learning Support in government primary school. Isn’t allowed someone to read him, told us we can’t use assistive tech like a pen reader until high school. So simply can’t participate in texts/exams/assignments etc. no social support for making & maintaining relationships and belonging at school.
• Difficulty coping with my child’s behaviours and seeing Public Paediatrician long waitlist.
• Finding the strength and motivation to fight the NDIA to get the support needed to give my child the best possible chance.
• Screen addiction
• Overwhelm, way too many things to juggle and NDIS cuts
• Isolation and no genuine connections
• Sleep and waiting to see what funding we are getting for the next plan
• Juggling the needs of my two children both of which are quite intensive but very different, while managing every day life and expectations with no support.
• Managing teenage emotions
• To know how to best advocate and help my son - particularly with his education
• Watching your child be in pain with cp and their is nothing you can do is take away the pain
• NDIS

• My disabled child keeps getting bitten at school by another disabled student.
• Therapy refusal
• Juggling the needs of everyone and everything!
• Carers Unreliability
• Navigating the continuous changes
• NDIS funding issues
• trying to find the right combination of meds to help our daughter
• After school big feelings
• Navigating school inclusion & behaviour dysregulation
• The mental load, the multiple appointments, the feeling of constant exhaustion
• juggling disabled child and other children fairly
• NDIS review
• I just feel overwhelmed at all the things I need to do. I feel like I forget to do so much. I tick off the main stuff but working full time makes it difficult to do the extra but important stuff.
• Conflicting advice from Disability Office Staff
• Emotional regulation and carer burnout
• No support. No family or friends. No funding for support. Absolute F*^} burnout
• Advocating at school
• Caring for 2 kids on NDIS, whilst I have a disability and constantly rejected from NDIS and other health funding taken off me
• Everything!
• Leaving the house with my kids. The oldest has ASD with a pda profile and ADHD so the other tend to follow along with the chaos.
• A sense of connection for young person. Aggressive behaviours
• My son turns 18 next year, trying to apply for disability support is a nightmare.
• Dealing with school
• Select the right schooling option to get the best outcome
• My child has entered adulthood
• My son is being bullied and he is so upset
• Trying to manage everything on my own
• How fast things change with NDIS
• Puberty
• Getting supports in place now that my daughter has started high school
• At the moment as are struggling to have our son home on weekends, we want to take him out to do fun activities that he can do stress free. But unfortunately there is limited things. We find most things that are great for “regular” kids are a struggle for our entire family as they aren’t inclusive for disabilities
• Constant advocacy
• Feeling overwhelmed with all the hoops
• always worrying about funding not being enough
• Finding new therapists as current ones are leaving clinics or profession and juggling therapies while giving my daughter a childhood

• The unexpected mood changes
• Everything
• Advocating
• Trying to juggle kids emotions attitudes and regulation
• Teenage hormonal changes and finding the right therapy
• Despite working fulltime from home its hard to separate work life from home life.
• Balancing needs of therapy with needs to be a child
• The travel cuts for therapist. We live remotely and will no longer be able to have therapists travel to us as it’s just not viable for already stretched services. We have no idea how we will manage taking our daughter to appointments (minimum 1 hour each way) and continue to work. The reduction in therapist hourly rate and freeze on others I am so worried about what this will do for our most vulnerable with disabilities.
• My son self harming
• All the NDIS funding process, the changes and how we’re getting less than what my kids need to be able to thrive
• Advocating for inclusion
• Ensure school can adopt and actually listen & apart of our team not just a ‘compulsory’ waste of time & energy
• Disconnection, fatigue
• Having therapists travel funding cut, meaning we now have to travel to an in clinic appointments. Doesn’t work so great for children who work and listen best in their own environment
• School refusal, severely poor mental health
• Trying to save money to buy supports out of pocket for thickener plus other disability costs we don’t use for our other children, Eg we really need a wonderfold wagon due to fatigue and dysregulation (child bolts) from crowds/noise but we’ve been saving for 2 years and don’t have one and it’s limiting family outings. I can’t take them out on my own at all for safety reasons.
• Managing incontinence. It’s a constant, daily challenge that affects so many aspects of life — from attending kindy, joining in social activities, even just leaving the house without stress. It’s emotionally draining at times, not just for our child but for us as parents too. We’re doing everything we can with the support of professionals, but progress can feel slow and unpredictable, and that can be really tough.
• Delayed puberty & epilepsy
• NDIS funding and school refusal
• Advocating for extra support at school
• Finding services that provide social outlets for my child
• Navigating so many changes all at one with minimal support and guidance.
• NDIS changes and the anxiety the cause us, our team and the broader disability community.
• Navigating appointments and family life. Finding it too hard to go back to work but financially need to.
• Financial hardship
• Managing everything with Oak only going to school very minimally and not having enough support worker hours to get more support through ndis
• Funding accuracy
• Feeling like i’m doing enough
• Trying to balance being a working mum and navigating NDIS and care for a child with a disability. The NDIS cutting crucial funds and there not being enough supportive activities that cater to kids with disabilities.

• Finding NDIS providers for activities
• Feeling like he’s too disabled for the abled body community, not disabled enough for the disability community
• No time for myself burnt out
• Giving enough time to each child (4 girls)
• Regulation
• School, all encompassing
• Finding carers that are reliable and compatible with my child’s needs. Wish we could employ extended family to help out as they know our child better than a stranger. The long wait times for NDIS to do anything related to improving our plan. Constant advocacy
• Parenting every day
• Preparing for school next year.
• Isolation and burnout
• Having in home and community services cancelled due to the changes to funding for travel. Meaning my child who doesn’t do well in clinic settings due to significant medical trauma is having to go to clinics. How is he meant to improve or take strategies onboard when he is sitting in a session in fight or flight. Safety is paramount for learning.
• life
• Sleep
• School refusal
• Burnout
• Future planning
• Being out. My son is a runner
• Being there for our other 3 children
• NDIS funding periods - we’ve used our entire first quarter of funding on assessments with nothing left for therapies. The system is so broken. Those with disabilities should have more access to support and finances
• Meeting the needs of all my children plus my own
• Burnout. And showing up every day for a kid who loudly prefers my husband.
• Daughter in burn out, trying to support her & know the right things to do and say. Family members not understanding.
• School
• Navigating entering mainstream school system.
• Juggling work, family life with special needs children and therapy while running on absolutely nothing myself
• Everything
• School
• NDIS
• Navigating NDIS and their new regulations. Trying to advocate for my child. Even with all the evidence, reports etc. We’re constantly being rejected
• Carer fatigue & isolation
• The lack of supports for disabled kids and support for the families
• Carer burn out
• The weight of decision making and finding the right supports

• Managing the NDIS and all the confusion, lack of information and extremely slow process. We ran out of funding for our child’s support services and trying to get early plan reassesses but no communication on how long it will
• Everything
• Not having enough time to navigate forms, appointments, etc etc
• Trying to regulate my child while feeling overwhelmed myself.
• Planning for my child’s future, having new diagnoses added to plan, getting a plan review which was applied for last December,
• NDIS changes
• Lack of support
• Carer burnout and finding time
• Everything! Not enough time in the day to homeschool my son, take 2 children to therapy appointments, keep up a house, juggle ndis
• Getting a ndis plan - we have our third ndis meeting on Monday, the last planning meeting they wanted MORE information
• Uncertainty about NDIS funding cuts to Physio and the impact on our service and business
• Loosing funding. Accessing supports. Fighting for basic needs my child has had for years to reinstated. NDIS loosing documents. Delayed process.
• Trying to get funding for the things we need as things change
• Finding in person Auslan lessons/family in home Auslan and deaf community events in my regional area
• We’re trying to find the next step in education — an inclusive environment where my son can study audiovisual creation. We’re looking for a creative school that supports students with special needs, but it’s not easy to find.
• My son dreams of learning Adobe tools and especially AI for creators. Right now, he’s already studying Canva through private lessons — he’s so motivated!
• Challenging behavior from child who physically hurts you. Trying to find work and parent a special needs child who is always sick,
• Consistency of funding so you can plan and train a consistent long term work team and total confusion over what can and can’t be claimed when there is high intensity overlap with very high medical needs
• Dealing with the NDIS to make sure our girl can access what she needs to thrive not just survive!
• No NDIS funding for psychologist for CBT and ERP therapy (which would hugely benefit child) but can’t utilise available community participation and respite funding due to child not being able to leave house or interact with strangers. Lack of parent/carer support available. Completely burnout.
• Feeling lost within the medical side of things
• Finding what’s right for my whole family
• Juggling all the balls
• Managing child getting older and future planning
• 3x disabled kids + disabled parent trying to work & having to partially homeschool as school can only support part time attendance.
• Finding the right therapists that can fit into our schedule as well
• Currently my daughter’s application for a wheelchair has been rejected and that means more time and reporting to fight for it then more lost time for her physical health unable to participate due to this!
• My child is going through chemo because of a brain tumor. It’s been really hard
• Social isolation
• Heading in to puberty and high school.
• Getting all of my daughters therapists to communicate and listen to me about what I feel is best for my daughter

• Not knowing answers awaiting Genetic testing.
• Not having support due to unknown diagnosis
• The fight with NDIS is hard. Fighting for more fundings (had to cut off some of his weeklies because of this), AT got rejected, absolutely zero support worker hours. No one is guiding me what to do with school even childcare in the future. I actually find it hard to find a childcare that wants Liam to be a part of them.
• Lack of funding for required supports to have a more positive life.
• Medical issues/seizure control /regression
• Getting all of my daughters therapists to communicate and listen to me about what I feel is best for my daughter
• School
• Burnout from all the time for advocacy, research, NDIS admin.
• Not finding enough time to fit in therapy or development activities into life.
• Navigating post school options
• Emotional regulation triggering each other
• Husband lack of support
• Dealing with meltdowns
• School making accommodation
• Access to services and appropriate plan
• Honestly everything
• Behaviour issues and funding from NDIS
• Finding the right supports with therapies etc
• Behaviours and flow on the younger children
• I’m can’t get an OT for my daughter and now that they have cut transport funding my sons OT can’t do visits now
• The unknowns of future supports with upcoming plan review and NDIS changes, as my child’s needs continue to become more complex, but fobbed off by paediatrician
• Teenager with collect needs. I’m just exhausted
• Dealing with schools!
• Trying to take care of myself.
• Finding out what can be claimed
• Managing everything plus work, siblings, therapies
• Not being able to have a television in our house because plan manager refuses to allow purchase of screen protectors. Several NDIS staff have said imshould be able to purchase from low cost AT, but won’t put it in writing. Child has now broken 3 and I can’t afford to simply keep replacing them. I care for 4 children with complex developmental disability, so no TV is like WWIII. I called last week and was told it could be purchased, KINDSHIP say they were told it can’t be.
• NDIS - they are doing everything possible not to provide people the supports they need and they are turning the public against disabled people through the media
• Keeping up with everything, especially the admin
• The whole juggle, fatigue, health issues, work, home, school, behaviour (regulating emotions), communication
• Acceptance that my child might never have independence from me, thoughts of the future
• Not getting support with ndis and therapists and constantly waiting long periods for approvals
• Keeping up with everything, especially the admin

NDIS - they are doing everything possible not to provide people the supports they need and they are turning the public against disabled people through the media

The whole juggle, fatigue, health issues, work, home, school, behaviour (regulating emotions), communication

Acceptance that my child might never have independence from me, thoughts of the future

Not getting support with ndis and therapists and constantly waiting long periods for approvals

My daughter is non verbal and has her own signs as well as some Auslan. I fear how she’ll cope without someone that can properly understand her. Her speaking device helps to a point.

Self soothing/regulation and impulsivity

Finding support workers that are qualified

Keeping patience and energy at the end of term

Not stressing too much about what the future will hold for our daughter with cp

NDIS Price Guide • hearing daily about providers no longer accepting NDIS participants, closing their doors, no longer being able to travel to us.

School refusal Balancing everyone’s needs and not feeling exhausted all the time

School system not providing what our kids need. Teachers are amazing but the system is shocking and teachers also need extra supports and training in place.

Managing working full time and caring for son with asd

Providers increasing fees and feeling like this won’t be included in my next budget

Emotional regulation

Rejection sensitivity makes it hard for her to learn

Making sure we are using our funding to its full potential in fear of losing it whilst protecting our mental health.

Keeping on top of/up with appointments, therapy and school homework, and basically everything for my child

My therapists are going to stop offering travel and I will have to miss shifts to take my 3 children to therapy. Skin picking, navigating periods & understanding appropriate boundaries

NDIS Pricing Review Cuts

Finding a job or will my young person ever work

Epilepsy Finding an ndis advocate for tribunal. Anxiety is huge at the moment in the house. I have child that is too scared to leave the house and get in the car and another scared of rain and wind

behaviour regulation

School anxiety and behaviour. The school Is pretty great but its still a struggle

Appendix 2 - Case Study: Middle-Income Family Falling Through the Cracks

This case study highlights the experience of a middle-income household with a combined annual income of approximately $200,000 per annum. Despite financial stability, the family faces extreme challenges in accessing effective support for their children with disabilities.

Family context

• Two-parent household with three children.
• Father diagnosed with Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactive Disorder (ADHD)
• Combined diagnoses of children include ASD level 2 and 3, ADHD, learning disorders, sensory processing disorders and global development delay.
• Four NDIS plans in the household.

Critical issues

The oldest child (11 years old) is engaging in serious behaviours of concern, including:

• Self-strangulation.
• Attempted strangulation of his 8-year-old sister using a car seatbelt, this occurs multiple times a week.
• Jumping on the accelerator while his mother is driving.
• Googling “how to make a bomb at home” while at school.
• Bringing a pocket knife to school.

As a result of these behaviours, both the mother and the middle child have sustained serious physical injuries. The family is trialling chemical restraints under medical supervision to manage the behaviour. The mother has expressed that she is considering relinquishing care of her eldest son as she is unable to keep the two younger children safe, despite being extremely proactive in seeking support.

Attempted Support Pathways

Implications

This case demonstrates that even middle-income families with proactive carers, multiple NDIS plans, and repeated attempts to engage mainstream services can face extreme exclusion and risk. The lack of access to practical, timely, and coordinated supports has left the family in crisis, with child safety, sibling safety, and parental wellbeing at significant risk.

Appendix 3 - Overview of Impact Measurement - Kindship Family Support Pathways Program

Families who accessed the Family Support Pathways Program have provided strong and consistent feedback demonstrating the program’s effectiveness in improving confidence, reducing stress, and connecting families with vital services.

The evidence demonstrates that the program delivers measurable improvements in parental confidence, stress reduction, and service navigation. It connects families to services they would not otherwise have accessed and strengthens their ability to support their child’s development. Families overwhelmingly endorsed the program as an invaluable and cost-effective service that should be expanded and permanently funded.

Key Statistical Findings

Analysis of 134 coded responses shows:

• 44% were “Yes” - families reported clear positive outcomes.
• 15.7% reported “Improved” - noting significant improvements in challenges or confidence.
• 13.4% were “Somewhat” - indicating partial progress and benefits.
• 7.5% indicated things had “Stayed the same.”
• 19.4% reported “No” - though many of these still contained constructive feedback or requests for additional support.

Overall, almost three-quarters of families (73%) reported improvement or benefit from the program, with fewer than one in five stating no benefit.

Positive Changes for Families

Families consistently reported improvements in their child’s development and overall family routines since engaging with the program. Many parents highlighted reductions in stress, increased stability in routines, and greater confidence in their ability to manage daily challenges.

Confidence and Empowerment

Parents described feeling more confident supporting their child’s development and better equipped to make decisions about NDIS and mainstream supports. Practical tools such as step-by-step checklists and achievable strategies were frequently cited as transformative, reducing the mental load of navigating the overwhelming world of having a child with developmental delays and/or disability.

Skills and Knowledge Gained

Families reported gaining new knowledge about the NDIS, Carer Gateway, mainstream and local community services. This knowledge translated into tangible outcomes such as securing cleaning support, connecting with speech and occupational therapy providers, obtaining mental health care plans, and accessing free or low-cost supports. Parents felt more empowered to advocate for their children and make informed decisions.

Stress Reduction and Mental Health

Most families reported lower stress levels as a direct result of participating in the program. They attributed this to both the practical supports provided and the emotional reassurance of being listened to and understood by a peer navigator. Caregivers emphasised that being encouraged to prioritise their own wellbeing had positive effects on the whole family.

Program Delivery and Experience

Families praised the lived-experience peer navigators for being relatable, empathetic, and supportive. The strategies provided were described as realistic, sustainable, and life-changing. Many families recommended the program to others and stated that this type of support should be available to all families at the beginning of their NDIS journey.

Appendix 4 - Support Plan Example

Context - CALD family, twins both with developmental delays, ASD level 3 for one and congenital heart disease aged 4 years old.

Hi redacted

This plan was created with your whole family in mind, to help take some of the mental and emotional load off your shoulders and bring more practical support into daily life for you, redacted

We see how much time, care, and energy you put into supporting both boys, often with little opportunity to rest or reset. Parenting two children with developmental delays, while managing therapies, appointments, and daily routines, is an incredible commitment, and it’s understandable that you are feeling exhausted.

These next steps are designed to be gentle, practical, and actionable. They will give you the space and support to reduce burnout, make therapies more effective, and help your whole family thrive.

This support plan includes the following:

Understanding the Role of your NDIS Contact:

Because you’re based in redacted, New South Wales, your Early Childhood Partner is Lifestart Disability Services. They are the people who help you make the most of both boys’ NDIS funding, connect your family with the proper supports, and guide you through the processes to follow if either NDIS plan is no longer working for them.

Pay privately for a support coordinator:

If you’re feeling completely overwhelmed, aren’t getting the support you need from your NDIS contact, and don’t have support coordination funding in either plan, you can pay privately for support coordination. This support usually makes the most impact for families.

Carer Support Toolkit:

From your intake form, we know you’ve been feeling physically and mentally worn down. You’re not alone in this. That’s why we’ve put together some simple, doable strategies to support your well-being and help you sustain the energy needed to care for your boys.

Carers Allowance:

We want to ensure you know about the financial support available through Services Australia. One option is the Carer Allowance, an extra payment to help with the costs of looking after a child with a disability or medical condition.

Understanding the Role of your NDIS Contact

Because you’re based in redacted, New South Wales, your Early Childhood Partner is Lifestart Disability Services. They are the people who help you make the most of both boys’ current NDIS funding, connect your family with the proper supports, and guide you through the processes to follow if the boys’ plans are no longer working for them.

You indicated you want to explore different therapies and services for both boys. We suggest you reach out to your NDIS contact within Lifestart Disability Services. This information is typically found on the first few pages of the NDIS plan. They will help you determine if you can use the current NDIS funding to engage with them or if you need to explore the possibility of starting the process for a plan change request, also known as a change of situation.

For your convenience, here are Lifestart’s contact details:

Phone: 1800 953 390

Email: info@lifestart.org.au

Penrith Office Address: Ground Floor, 81 Henry Street, Penrith NSW 2750

How Lifestart Disability Services Supports Families with an NDIS Plan

Your Lifestart Disability Services NDIS Contact is there to:

• Explain the NDIS plan in clear language.
• Help you connect with the right service providers, such as speech pathologists, occupational therapists, psychologists, or community programs.
• Provide local knowledge about services, programs, and supports in your area.
• Work alongside you to ensure that support is helping the boys reach their goals.
• Support the preparation for plan reviews or if you need to change either NDIS plan(s).

Why It’s Important to Stay in Touch

Your NDIS Contact is for the entire plan period. You can reach out at any time if:

• You’re unsure what to claim.
• The boys need change, and different support.
• You want advice on finding or changing providers.

If you’re Not Happy with the Support from your NDIS contact

• If you feel your NDIS contact isn’t providing the help you need, you can:
• Contact Lifestart Disability Services directly on 1800 953 390 or email them via info@lifestart.org.au

You can ask questions, request changes, and expect high-quality support for your children.

Learn more: Disability Services for Children & Young People | Lifestart

Here is an email template you could use to send to Lifestart Disability Services:

Subject: Request to Discuss Additional Support for My Child

Dear [NDIS Contact Name],

I hope you’re well. My name is [Your Name] and I am the parent/guardian of [Child’s Name], who is [Child’s Age] years old. You are listed as [Child’s Name] NDIS contact.

I’m getting in touch because I’d like to explore whether there are any additional supports or services available to help my child’s development and well-being. I’m particularly interested in [briefly describe area of concern or goal, e.g., speech development, social skills, help finding local therapy providers, support for starting school, etc.].

I would appreciate the opportunity to talk with you about:

• What additional support options might be available for my child
• How these supports could be accessed or included in our current plan
• Any community programs or resources you would recommend

Please let me know a suitable time to talk by phone, video call, or in person. I’m happy to provide any further information you might need before our conversation.

Thank you for your support and for the work you do for families like ours.

Kind regards, [Your Name] [Your Contact Number] [Your Email Address]

Pay privately for a support coordinator.

If you’re feeling completely overwhelmed, aren’t getting the support you need from your NDIS contact, and don’t have support coordination funding in either NDIS plan, you can pay privately for support coordination.

A support coordinator can:

• Provide a one-off Q&A session where you can explore all things NDIS and get tailored advice specific to the NDIS plan and situation.
• Or, if you’re preparing for a change of situation or an upcoming plan reassessment and don’t know where to begin, they can guide you through the process and help ease the load.

Three services to consider:

• Alee Disability Support Services - A nationwide team founded by a parent of a child with disabilities. Offers flexible planning support and knows the NDIS landscape well.
• Common Ground Disability is an NSW-based, parent-run company that specialises in helping families develop strong evidence for review, including coordinating assessments and precise goal framing.
• The Growing Space - The Growing Space is an independent NDIS consultancy that helps people with disabilities and their families confidently navigate the NDIS. They offer training, mentoring, resources, and advocacy to ensure participants and providers understand their rights, responsibilities, and opportunities within the scheme.

We don’t receive referral fees or incentives - these are simply three options we know have been helpful for other families.

Carer Support Toolkit

There’s nothing more frustrating than when people say, “Remember to take time for yourself, too.” Of course, you know that, but as a parent, finding the time to prioritise yourself is already hard enough. And for those of us raising children with disabilities, the challenge is even greater.

This toolkit isn’t here to tell you to run a bubble bath and light candles (although, if you can, absolutely do it!). Instead, it’s designed to give you practical tips and support options to help you keep your head above water when you’ve already got a million things on your plate.

From your intake form, we know you’ve been feeling physically and mentally worn down. You’re not alone in this. That’s why we’ve put together some simple, doable strategies to support your well-being and help you sustain the energy needed to care for redacted and redacted.

1. Explore support through Carer Gateway

Carer Gateway is a free national service for anyone caring for a person with disability, chronic illness, or a mental health condition. No referral or diagnosis is required to get started. They offer:

• Free counselling (phone or in-person)
• Peer support groups
• Emotional coaching
• Emergency respite in tough times

Here are their contact details: Call 1800 422 737 Visit www.carergateway.gov.au

2. Access mental health support via your GP

If you need someone to talk to (especially when things get overwhelming), your GP can create a Mental Health Care Plan, which gives you up to 10 subsidised psychology sessions per year.

What to do:

• Book a long appointment with your GP
• Let them know you’d like to explore a Mental Health Care Plan
• No diagnosis is required - just an honest conversation about your day-to-day challenges

You can also ask your GP for a referral to a psychologist who:

• Works with parents and carers
• Understands the impact of raising children with disabilities
• Has flexible scheduling

If leaving the house feels too hard, explore telehealth psychology options. Many parents find recommendations for good providers in the Kindship Connect Facebook group.

3. Join a local or online community of parents who get it

Sometimes the best support comes from other parents who truly understand. You might like to join the Kindship Connect Facebook group - a private, parent-only space where you can:

• Share your stories
• Ask questions
• Connect with others who truly understand what it’s like to care for a child with a disability.

There’s no pressure to post - many parents simply join to feel less alone.

We’re also working on organising more in-person meetups. If you’re interested, we’d love for you to complete our expression of interest form. This helps us see who’s located where and who’d like to join in-person events. There’s absolutely no pressure - just click here if you’d like to let us know.

Carers Allowance

We want to ensure you know about the financial support available through Services Australia. One option is the Carer Allowance, an extra payment to help with the costs of looking after a child with a disability or serious medical condition.

What is Carer Allowance?

Carer Allowance is a fortnightly payment for people who provide daily care and attention to someone with disability or a medical condition. It is:

• Paid on top of other payments (like Carer Payment or Family Tax Benefit).
• Not taxable.
• Most families do not have income or assets tested (except for an income test threshold).

You may be eligible if:

• You give daily care to Miraan & Mivaan because of their disability.
• You live in Australia and meet residency rules.
• Your family income is under the income test threshold.

Important: The income test for Carer Allowance is $250,000 per year combined family income. From the information you’ve given us, your income is under this limit, which means you should be eligible.

How Much is the Payment?

• A little over $159 every fortnight (correct as of September 2025).
• You may also receive a Health Care Card for the boys.

How to Apply

1. Check eligibility: Read about Carer Allowance on the Services Australia website.
2. Gather evidence: You’ll need medical forms completed by your child’s treating doctor or specialist.
3. Apply online: Through your myGov account linked to Centrelink.
4. Wait for assessment: Services Australia will review your claim and may contact you if they need more information.

For help, call Services Australia on 132 717 or visit Carer Allowance - Services Australia

Thank you for the opportunity to contribute to the Thriving Kids Inquiry.

Together, we can create systems that support every child and family to reach their full potential.