Finding Our Village: The importance of Community for Families of Children with Disability
- Kate Hoad
- May 26
- 6 min read
Many parents will understand this, but perhaps others reading might not - There’s a moment, often after your child receives a disability diagnosis, that many parents describe as a kind of freefall. Everything shifts—hopes, routines, priorities. But perhaps the biggest change is one that people don't talk about enough - the sudden isolation.
Sometimes this actually happens BEFORE diagnosis. This might be when your child is starting to stand out as different. Perhaps they're unable to tolerate being around others so you're always having to leave early, perhaps they can't use typical playground equipment like other children, perhaps their stimming is becoming more obvious, perhaps they don't have words so use physical actions to get their message across. But regardless of when it happens, what it means is: Friends who don’t quite understand; Family members who mean well but say the wrong thing; Invitations that stop coming. The world becomes smaller. Opportunities to get out and about are fewer and further between. Your support network diminishes. Suddenly it's easier to stay in than go out and experience that judgement, the stares, the backhanded comments about... well anything and everything it seems, some days. It's a lonely existence.
And then—if you’re lucky—you find your people. A support group. A playgroup where your child isn’t the “different” one. A space where you don’t have to explain anything. A community who gets it. For some - it will be online, for others in person.
For many families, the National Disability Insurance Scheme (NDIS) made finding that community possible. It recognised that disability support isn’t just about individual therapy hours—it’s about connection, inclusion, and wraparound wellbeing. Through funding under social and community participation categories, parents could access peer support, family connection, and inclusive community programs. It wasn’t perfect, but it was a lifeline.
But as of 3 October 2024, that lifeline has frayed.
What Changed on 3 October?
New changes to NDIS operational guidelines and legislation mean that supports for parents, carers, and families are now far more restricted. Unless a service can be directly linked to improving a participant’s own functional capacity, it’s unlikely to be funded. Particularly if it is a service that isn't delivered by an Allied Health professional.
That means parent support groups, counselling for carers, family capacity-building workshops—even many inclusive community events—are now considered “non-therapeutic” and therefore ineligible. Services, activities and places that once helped parents be the best supports for their children are being stripped away.
While the government has pointed to the upcoming Foundational Supports as a better solution, it’s important to be clear: these will not replace the social and community funding that many families accessed through the NDIS. Foundational Supports, as currently outlined in the proposed reforms, are intended to offer basic, generalised services for all Australians with disability, whether or not they are NDIS participants. However, these supports are not individualised, not guaranteed, and—crucially—not available yet.
Even when implemented, they are unlikely to fund the deeply relational, parent-led, and community-embedded supports that have been cut from NDIS plans. The loss of funded peer groups, parent mentoring, and family-inclusive programs leaves a gap that Foundational Supports are not designed to fill. For families who have finally found connection through funded community support, this shift is not a safety net—it’s a setback.
Why This Hurts Families, and therefore, hurts children with disabilities.
It’s hard to overstate how vital these supports were—not as luxuries, but as essentials. Parenting a child with a disability is a multifaceted journey that encompasses a wide range of challenges and responsibilities. It often means navigating complex systems that include healthcare, education, and social services. These systems can be overwhelming and difficult to understand, requiring parents to become advocates for their child's needs, whichis difficult when you're not amongst community who share their stories.
Advocacy Battles
The advocacy battles that parents face are not just occasional hurdles; they can become a continuous struggle. Parents must often fight for their child’s rights and entitlements, which can lead to significant emotional and physical exhaustion. This battle is particularly pronounced in cases where there are discrepancies in available resources or when policies are not designed with the unique needs of children with disabilities in mind. Parents may find themselves in situations where they have to challenge decisions made by schools or healthcare providers, requiring them to be well-informed and assertive, often at the expense of their own well-being. When we remove community - the knowledge passed down through generations of parents, is dispersed, weakened.
Relentless Logistics
In addition to advocacy, the logistics of daily life can be relentless. Coordinating appointments with various specialists, managing therapy schedules, and arranging transportation can feel like a full-time job, let alone then trying to hold down an actual full-time job whilst doing this. Many parents find themselves juggling multiple roles, from caregiver to coordinator, often sacrificing their personal time and self-care in the process. The sheer volume of tasks can lead to feelings of being overwhelmed, as parents try to balance the needs of their child with the demands of their own lives and those of other family members.
Emotional Fatigue, Burnout and Depression
Research indicates that parents of children with disabilities are at a significantly higher risk for anxiety, depression, and burnout. The combination of relentless advocacy, logistical challenges, and emotional fatigue creates a perfect storm that can lead to mental health issues. The emotional toll of parenting a child with a disability cannot be overstated. Parents, particularly mothers, who often bear a disproportionate share of caregiving responsibilities, may experience heightened levels of stress and anxiety. The constant worry about their child's future, coupled with the day-to-day challenges of managing their needs, can lead to emotional fatigue. Witnessing their child's struggles and the societal barriers they face can lead to feelings of despair. This fatigue is compounded by feelings of isolation, as many parents may find it difficult to connect with friends or family who do not understand their experiences. The lack of social support can exacerbate feelings of loneliness, making it even more challenging to cope with the demands of parenting.
It's cyclic, and it can be increadibly dangerous for mental health.
Even when opportunities for self-care arise, parents may dismiss them as indulgent or unnecessary, further perpetuating their feelings of burnout. The belief that they must be constantly present for their child can prevent them from recognising the importance of their own health and happiness.. Others may not feel guilty per se, but there just simply isn't time in the day to take 'time' for self-care. Snatched moments barely cover the basics, let alone allow for meaningful rejuvenation.
How Can We Prevent Ongoing Harm?
Addressing these issues requires a multifaceted approach, including increased awareness of the importance of self-care, access to support services, and a shift in societal perceptions surrounding disability. By acknowledging the struggles that these parents face and providing them with the resources they need, we can help alleviate the burden and promote better mental health outcomes for both parents and their children.Parents of children with disability don’t need to be told to “do more with less.” They are already doing everything—often unpaid, unacknowledged, and under immense pressure.
What they need is to be connected. To be supported. To find and stay part of a village that sees them.
Community connection doesn’t just make this easier—it makes it possible. It sustains families. It builds resilience. It’s where people discover access to different supports, learn how to advocate, what questions to ask, what rights they have. It’s where they realise they’re not alone.
We were just starting to build that. The NDIS helped open the door. Now it's up to us - We must not let policy changes quietly shut it again.
If this article brought up strong feelings for you, free help is available:
Lifeline – 24/7 crisis support and suicide prevention services.
13 11 14
Beyond Blue – Mental health support, including a helpline and online chat.
1300 22 4636
Parentline – Counselling and support for parents and carers (operates in each state).
QLD: 1300 30 1300 Other States - Find your Parentline here
Carer Gateway – Practical advice, counselling, respite support, and peer groups for unpaid carers.1800 422 737 (Mon–Fri, 8am–5pm)
Please don’t wait until you’re at breaking point.
Reach out—you deserve support too.
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