The NDIS spent a year fighting our request to give our quadriplegic kid a wheelchair. Talk about wasteful | Natasha…

When our son was 11 I was looking to restore order in his wardrobe. I labelled every drawer and shelf, put his clean and folded clothes on his bed each day and said it was his responsibility to place each item in his wardrobe where it belonged. As the weeks progressed, his underpants drawer diminished. His pyjamas were non-existent. There was not a school shirt to be found. And there, under an old blanket in the back corner of his wardrobe, I found a massive pile of clothes, clean and dirty mixed together, once-folded T-shirts intermingled with now-creased shirts. A random wig from the dress-up box. An old taekwondo uniform. His pre-teen prefrontal cortex had decided that the best way to ensure order was to simply ignore the work that needed to be done and hide the mess, without any thought of the long-term consequences.

When I read about the government’s plan to make major cuts to the national disability insurance scheme via its “Securing the NDIS for future generations” bill, I was reminded of the mess in my son’s wardrobe. The difference is that policy-makers should be very aware of the long-term consequences of their actions, that hiding something from view doesn’t make it go away. And their prefrontal cortexes, the part of the brain responsible for long-term planning and risk-assessment, should be fully developed.

That son is now 15. He is far more mature than his pre-teen self. At 12, he was diagnosed with cancer which triggered a rare neurological condition, causing him to become quadriplegic. He is no longer able to put his clean clothes in his wardrobe (which he would say is perhaps the only perk of his life-changing diagnosis).

We are “new” to the NDIS. While headlines would have people believe that it is overflowing with people looking for a free ride, it took multiple applications and rejections and reviews and substantial stress and tears for our quadriplegic child with a permanent disability to access it.

The threshold is high. The proposed bill would make it even harder to access the scheme, introducing a new functional capacity criteria and a new definition of permanence, removing 240,000 people over four years and “diverting” 110,000 people who would otherwise have accessed the scheme between now and 2031. To be clear, the definition change doesn’t make these people any less disabled, it’s just a fancy, legislative way for the scheme to handball responsibility (to whom is less clear).

The NDIS has a guiding principle that parents are responsible for providing substantial care and support for their children. The proposed bill would legislate this principle, meaning support will no longer be provided to a child if the powers-that-be decide that support should be provided by a parent, regardless of context. Regardless of age, or living situation, or hours of sleep possible, regardless of work hours or financial or physical strain, regardless of their own disability or health situation.

As parents, there is nothing that my husband and I wouldn’t do for our child. I can decannulate a tracheostomy with my eyes closed. The way my husband is able to lift our son (even after his own back surgery) is superhero-like. We have become experts in things that we didn’t have language for three years ago. We would (and have) sacrificed career goals, financial security, social lives, travel and sleep. It’s not even a question. But what we, and so many parents do as carers, to the best of our abilities, sometimes imperfectly but always with love, we do by choice. It needs to be valued, not legislated.

What’s frustrating about the bill is that it implies that disabled people (and their parents) are to blame for the cost blow-out, and that increasing pressure on caregivers and reducing access to the scheme for hundreds of thousands of disabled people is the solution. Yet if fraud and wastage is the problem, neither of these elements is the solution. The bill does nothing to reduce fraud. And want to talk about prevention of waste? Let’s look at the National Disability Insurance Agency’s own behaviour.

Last week we received a decision from the administrative review tribunal overturning an NDIA decision which had rejected our application for a wheelchair (for my son ... the quadriplegic kid who relies on ... a wheelchair). Despite thousands of dollars in funding we had spent on reports by allied health professionals justifying a wheelchair for a quadriplegic kid, the NDIA rejected our application, conducted an internal review of that decision without notifying us, meaning our only avenue left was the tribunal. The NDIA thought it was a wise use of funds to be represented by a senior solicitor at a major law firm, while we self-represented, like most participants. The process from the initial application took more than a year.

Last week public hearings began into the proposed changes. There were just 11 days allowed for submissions and three days for the hearing itself. A cynic might say it’s almost as though the government wanted to push the bill through without consultation. “If the bill gets passed into legislation, the consequences will be dire, far-reaching and near impossible to undo,” testified the actor, author, writer, speaker, screenwriter and advocate Hannah Diviney.

To run efficiently, the NDIA can care about disabled people, or it can care about the cost of the scheme, or it can do both. But it cannot do neither.

The disability and NDIS minister, Jenny McAllister, says the government has “thought really carefully about these reforms”. With respect, that’s deeply embarrassing.

When our son’s life changed overnight, he was forced to change the ideas he had about what his future would hold. He has not, even once in the last three years, stopped to feel sorry for himself. He doesn’t look at what he is no longer able to do or what has been taken from him, he is always looking for what’s possible.

I just wish the government had one ounce of his drive, determination or imagination.

Natasha Sholl is a writer and lapsed lawyer living in Melbourne. Her first book, Found, Wanting, was published by Ultimo Press in 2022