Kyla

Kyla finds it difficult to focus, is frustrated easily, talks too quickly and feels so bored it’s ‘almost physically painful’. She also struggles with verbal instructions and reading documents. She is ‘always ridiculously early or late’ and requires fidget gadgets in meetings or lectures.

Kyla told the Royal Commission it was not until she was in her mid-20s, after ‘years of depression, anxiety … and wanting to die’ that a psychiatrist told her these behaviours were due to attention deficit hyperactivity disorder [ADHD]. She would need substantial support to ‘keep [her] job, stave off another bout of depression and another severe psychiatric breakdown’.

She would also need medication, but having been diagnosed as an adult, her medications aren’t subsidised. She spends ‘approximately $250 per month’ on medication and in addition has to pay $350 every time she sees the psychiatrist. The Medicare rebate is only $120.

Meanwhile, Kyla was really struggling with her condition.

‘I was having difficulties with energy regulation, I couldn’t work past 3 pm without losing complete focus, even on my medication. Over‐sensitivities were horrible, the light gave me headaches, [and] sounds screwed my concentration up for the rest of the day. My emotional dysregulation was severe. I wanted to cry, die, scream, sleep, laugh and more in rapid succession. I was managing, but it was taking everything I had.’

Someone suggested to Kyla that an occupational therapist could help her with strategies to manage her ADHD and she should apply for an NDIS package.

Kyla submitted an NDIS Access Request.

Three months later she received a response. Her request had been denied based on Section 24(1)(b) of the NDIS Act, which requires that ‘you must have an impairment which is permanent, or likely to be permanent’.

Kyla felt humiliated.

‘To be told that the condition I have struggled with, that has caused secondary depression so severe I wanted to die several times, was not permanent or likely to be permanent … ’

Kyla asked for a review, then waited another three months to be told ‘the access criterion was unmet’.

Ultimately, the NDIS determined Kyla hadn’t exhausted all her treatment options. This was the point of Kyla’s application in the first place: she wanted help with treatment.

Kyla was told she could appeal through the Administrative Appeals Tribunal, but she was ‘humiliated, dejected and had no fight left’.

Since then Kyla has been ‘struggling in the same way with energy, emotional dysregulation, and all the other difficult to manage aspects … on a daily basis’. She said her only supports are ‘either highly costly’, such as her psychiatrist, GP and psychologist or family.

Kyla told the Royal Commission the experience has left her disillusioned with the system.

‘The fact that a system that is supposed to help people with disability managed to wear someone with a disability down to the point I got to is disgusting and proves that the system is broken.’

Kyla would like ADHD ‘treated with the severity it deserves’ and believes the NDIS should be ‘a system for people with disabilities that doesn't judge them or belittle them for wanting help’.