I’ve been thinking a lot today about what “support” actually means for families raising children with extremely high support needs.

Joshua was recently reassessed at 7 years following the school he attends request for an education assessment. I put this off for months, didnt want to understand it in some way and knew deep in my hear there were some more complex issues he was confronted with. After review, turns out he is ASD L, has ADHD, significant language and sensory processing difficulties, and cognitive/intellectual challenges. His needs are complex, substantial and constant. I wont ever forget the way the psychologist looked at me and said he is an unlucky little boy. 

I’m also autistic and ADHD. I’m a single mum. I work hard, I advocate, I organise, I problem-solve and, like so many parents in this position, I keep finding ways to make things better for us.

But there comes a point where “try harder” simply isn’t the answer. Our nervous systems are clashing, we’re both in high alert and both stressed out to the max, with little to no support. My heart bleeds most days trying to work out what to do and how to help him and I just cant come up with an answer.

Joshua’s NDIS plan was then reassessed against his previous diagnosis, and I received a call this week about his new plan. His overall funding has increased, which I am grateful for. There is funding for therapy, behavioural support and other interventions which will help him greatly. 

However, the most critical part of the support we asked for, actual support hours in the home has fallen dramatically short. The professionals working with Joshua recommended at least 28 hours of in-home support each week.

The plan provides six.

That is almost 80% less than what was professionally recommended.

And that is the part I cannot stop thinking about.

Because therapy is essential, but therapy does not magically change a child’s needs overnight.

Speech therapy takes time.

Occupational therapy takes time.

Behavioural intervention takes time.

Learning new ways to regulate, communicate and cope can take months and sometimes years.

And while all of that work is happening, life at home for us continues every single day.

Someone is still managing the meltdowns, sensory overload, communication difficulties, school challenges, appointments, reports, behavioural issues, safety concerns and emotional regulation.

Someone is still doing the mornings, afternoons, evenings and nights.

And very often, that someone is one exhausted parent.

There seems to be an expectation within the system that parents will simply absorb the gap between what their child needs and what is actually funded.

We are expected to stay employed, financially stable, emotionally regulated, physically healthy and capable of implementing every recommendation made by every therapist while providing incredibly intensive care at home. But carers are not an unlimited resource.

You can fund excellent therapists and behavioural practitioners, but if the parent holding everything together reaches breaking point, the entire support structure around that child becomes vulnerable. Generally, the mother, is the punching bag, the one who sees it all, the one who is confronted with sadness every day about what her life was, and can never be again. 

For children with profound and complex disability, supporting the child has to include supporting the person who is caring for that child every single day. Im at a loss as to how this isnt the primary concern, given kids with disabilities relay almost more heavily on parents to supprot their eneds. 

In-home support and respite are not luxuries.

They are not about handing your child over to somebody else.

They are about giving parents enough capacity to keep parenting well, to not break down, to not be on edge every single second of every single day.

I understand systems. I know how to advocate. I have professionals around Joshua who are willing to document his needs and fight for appropriate support.

And even with all of that, navigating this is utterly exhausting.

So I keep thinking about the parents who don’t know how to navigate the NDIS, who don’t have strong professional support around them, who are already depleted and who simply keep going because there is no other option.

We talk constantly about supporting children with disability.

We need to start talking just as seriously about supporting their carers.

Because a disability system that funds therapy for a child while allowing the parent responsible for holding everything together to collapse is not truly supporting that child or their family.