The problem with tying support needs to functional capacity

Australia's NDIS and its failure to understand the needs of late-diagnosed autistic adults

As a late-diagnosed AuDHDer, I don’t tend to look at my level of functioning as a measure of how I’m doing. Functioning is about how I present to the world rather than what’s going on inside. For a good stretch of years, I would have given the impression of someone who was ticking the adulting boxes. But under the surface I was often running on empty after dredging the last of my inner resources. I wasn’t coping, I was just cobbling together the appearance of it.

Functional capacity is the favoured terminology for Australia’s system of disability support, the NDIS. It’s not a new idea, but recently the government announced that a functional capacity assessment administered by a bureaucrat rather than a diagnostic report from a medical practitioner will determine how much support (if any) a disabled person receives.

It’s highly problematic for any late-diagnosed autistic adult with a track record of ‘functioning’ because they’ve attained qualifications, held down a job, had relationships, parented and various other markers of adulthood. We are always starting from the point of having to prove we need support against a backdrop of suspicion, disbelief and ignorance. We are considered less deserving of public funding than those deemed to be ‘significantly’ or ‘severely’ or ‘profoundly’ disabled.

Unsurprisingly, demand for the NDIS has been growing steadily since it was established ten years ago. Spooked by the prospect of an unsustainable cost blowout, the government recently decided to slash the number of people on the scheme by about a quarter. It means that less people will be able to enter the scheme. But it also means a good chunk of people currently on it will no longer receive support.

More than anything, it was the language being used by the government and commentators that bothered me. We heard that the NDIS had been gone beyond the scope of its original intention to support people with ‘significant and permanent disabilities’ (some commentators added the troublesome ‘profound’ to the mix). There were people languishing on the scheme who shouldn’t be there. If it wasn’t clear enough in the subtext of the government’s announcement, others said it out loud: they were coming for late-diagnosed autistic adults.