Article
When it comes to NDIS, so much emphasis is on capacity-building.
But here’s the problem: for a lot of people, it’s not that we don’t know how to do things—it’s that we literally can’t do them ourselves, and would otherwise struggle or suffer if we were to do them.
This is something that endlessly frustrates me about the NDIS. Many of us have an entire funding category allocated to capacity building supports to “build your independence” and “help you pursue your goals”.
And in theory, this sounds great. I’m all for gaining new skills, building independence, and kicking goals. But in reality, what we often need isn’t to “build our capacity”: what we need is actual support. Because no amount of capacity building is going to turn stairs into a ramp. No amount of capacity building is going to magically allow me to clean my house and cook. No amount of capacity building is going to mean that I don’t struggle with my mental health, or sensory overload, or agonising pain and debilitating fatigue. And that’s what frustrates me.
If you’re new to the idea of NDIS capacity building, there are many ways you can use your capacity building budget, like support coordination, improved living arrangements, increased social and community participation, finding and keeping a job, improving relationships, improving health and well-being, improving learning, improved choices and control, and improved daily living. It’s a pretty wide category, but it generally will mean things like having someone help manage your NDIS budget, having help to find a place to live, support with recruitment, undertaking behavioural therapy, going to a nutritionist, seeing an occupational therapist, or speech therapist, and learning skills to help you in daily life, like navigating public transport. And those things are so exceptionally helpful for so many people. But there is only so much allocated in this budget. It’s generally not enough—and in my case, my entire capacity building funding gets eaten up thanks to occupational therapy reports and assessments I need to prove I require more assistance than I’m funded for.
And I’m not alone in this.
According to the NDIS, I am only autistic. They don’t recognise most of my mental and physical disabilities, despite the fact that I have years of evidence, multiple reports, and multiple diagnosis
So every year, my capacity building fund is used to beg the NDIS to consider my other disabilities, and to support me with them. Like for example, I’d really love a ramp to get inside my house. But that’s something I can’t get funded—which honestly blows my mind. They also don’t recognise my complex mental illness, and I don’t know what more I have to do there to get them to recognise it, other than die.
I haven’t really raised a fuss over my own situation, because I am so grateful to be on the NDIS at all.
I am so grateful I can have support workers to come in and help me, even if it’s just a few hours a week. Because that’s what I need: actual support.
And actual support will build my capacity to do more. I mean, it already has! Now that I have regular access to food, clean clothes and bedding, transport, and a clean place to bathe, my life has changed significantly for the better.
And it’s not because of capacity building.
It’s because of support.
And I hope the NDIS recognises the nuanced ways many of us need to use our funding—and that while capacity building can be helpful, it shouldn’t exist in place of actual support.
I think there is a tendency for the NDIS to hope that capacity building will magically lessen our need for support, but it doesn’t. So, so many people are in the same boat. We don’t get to build our capacity, because we’re too busy fighting for them to recognise the actual support we need.
Not to mention the fact that not everyone has the capacity to “build their capacity”, especially those of us with chronic illnesses and energy impairments.
And the NDIS just doesn’t listen. I don’t think they actually particularly care. Because they could just give people more support—they literally spend over $40 million every year on paying lawyers to fight participants, instead of just supporting us.
It just shows there is a huge disconnect between what we are funded for and the funding we actually need.
And that’s a perspective we really need the NDIS to understand.