26/05/2026
āParental responsibilityāā¦. It is one phrase that really gets me going.
Michaelās Mum explains my same thoughts on this phrase, absolutely beautifully šššŖ·
One of the more fascinating developments in the NDIS lately is the gradual redefinition of āordinary parental responsibility.ā What is āreasonable and necessaryā. What āinformal supportsā should be doing (and NDIS will therefore not fund). That means mothers and grandmothers, for those watching at home.
Which is awkward for me because I genuinely have no idea what ordinary parenting of a 12 year old boy even looks like anymore.
I think for many parents of 12 year old boys itās something like occasionally yelling āhave you done your homework?ā from another room while the child somehow independently transports himself to and from school, consumes alarming quantities of food, forgets his violin practice and develops a mysterious smell despite repeated reminders about showering. From my conversations with other parents, they mostly have only the vaguest understanding of what their child actually does all day at school beyond hearing something about science excursions and lunchtime soccer. Then function as a taxi service to school sports at ungodly hours on Saturday and Sunday morning and nag them to get off their video games and pack for school in the evenings before giving up and doing the packing themselves.
Meanwhile my own experience of parenting a 12 year old currently involves intensive discussions about transition tolerance, toileting behaviours, emotional regulation, supervision ratios, visual schedules, school readiness and whether carrying a rapidly escalating nearly-teenage boy into a classroom counts as a sustainable educational pathway.
The particularly funny part is that he is not even at school yet.
We are homeschooling because that is what happens when your childās support needs become so complex that ordinary schooling starts collapsing under the weight of reality. So right now I am already having endless conversations with therapists, behaviour support practitioners, prospective schools and support workers where we all collaboratively analyse every conceivable aspect of human existence in preparation for next year. There are continuous emails discussing what strategies might work, whether the visual timer is helping, whether the drive requests are escalating, what medication we are trying at what doses, whether puberty is contributing and whether anyone involved has any executive functioning left themselves (I donāt know about them but I donāt).
And while many parents are cooking dinner or folding laundry after school, I am often taking my son for drives while simultaneously monitoring bathroom access because if left unsupervised for fourteen seconds he may attempt to flood the sink, flick toilet water across the room or hide food in increasingly creative locations around the house. I also spend portions of my life digging decomposing snacks out from between couch cushions like some kind of deeply cursed archaeologist.
One of the things I find slightly surreal in the current NDIS conversation is the idea that profound carer exhaustion can largely be solved by ābuilding parental capacity.ā That this should be the aim of the scheme as opposed to support workers or community outings.
Which sounds wonderful in theory. Who among us does not enjoy additional capacity?
But the issue in many disability households is not actually that parents lack parenting knowledge. The issue is that the parenting tasks themselves have expanded to consume every available hour of human existence. So prompting my son to ask for āpoolā on his proloquo2go comes third after making sure he has food to eat and a clean toilet.
Sometimes I hear phrases like āperhaps we can build mumās capacity to manage behavioursā and I imagine policymakers envisioning a calm mother pleasantly learning regulation strategies over herbal tea while her child quietly completes a puzzle nearby.
Meanwhile in reality I am trying to implement behaviour support strategies while changing sheets after another wet bed, redirecting bathroom behaviours, answering therapist emails, looking for missing devices, preventing absconding attempts, coordinating supports, remembering when the next clinic is and reminding everyone else, making sure his support worker has his mandated hour break, managing escalating demands for drives and trying to remember whether I myself have consumed water in the past eight hours.
At some point ābuilding parental capacityā starts feeling a bit like offering someone a resilience podcast while they are actively being mauled by a bear.
Because yes, technically I can absolutely learn more strategies. But unless someone is also funding a full-time housekeeper to cook meals, clean bathrooms, manage laundry, replace destroyed routines and locate the mystery food hidden throughout the home before it evolves consciousness, there remains the minor issue that all the other parenting and household tasks still need to happen simultaneously. I get alarmed that the NDIS will not fund community outings or support workers but only therapists because itās the community outings that allow my family to function. True building of parental capacity happens when someone else takes full responsibility for the child while the parent does all the other things. Or rests. Not when the speech therapist or school psychologist says āI donāt want to add to your load but could you please complete this 25 page questionnaire and also add a new page on proloquo2go and please model blue hoodie at least 30 times today preferably in context.ā
And if all of this genuinely falls under ordinary parental responsibility then honestly I owe every parent of a typical 12 year old boy a profound apology because I had absolutely NO IDEA.
I did not realise parents across Australia were still wiping their 12 year oldās bottom while closely supervising toileting to prevent toilet-water flicking incidents. I did not realise mothers everywhere were maintaining constant line-of-sight supervision because silence itself had become ominous. I truly thought most parents were just vaguely shouting āget off YouTube and write your speechā while making spaghetti bolognese.
Apparently not.
The funny thing is that disability care often gets linguistically disguised as tiny harmless sounding tasks. āSupervision.ā āPrompting.ā āSupport.ā āAssistance with daily living.ā
Very small words doing incredibly heavy lifting.
Because for many families the support work is not an occasional addition to ordinary life.
It IS the life.
And I think that is the part policymakers still profoundly underestimate.
