Haydn
Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support.
‘I’m essentially having to act as my own doctor any time I go anywhere because there just is no understanding of what needs to be done by half these doctors.’
Haydn, mid-20s, has chronic pain, attention deficit hyperactivity disorder (ADHD), anxiety, depression and regularly dislocates his bones. ‘If I sneeze or cough I’ll dislocate a rib.’
Ten years ago, he was hit by a car and required five surgeries. His disability got progressively worse and ‘things just kind of unravelled from there’.
When Haydn was released from hospital the pain ‘just never went away’. The hospital didn’t give him a referral to a pain specialist or follow-up support.
‘No-one picked up the fact that I was part mobile,’ Haydn told the Royal Commission.
It took several years for a pain specialist to finally diagnose him with a rare syndrome. ‘It was kind of like a bit of a lightbulb moment … as to why I’ve always had all of these problems.’
Haydn said GPs have limited knowledge of the syndrome and don’t understand the symptoms. Doctors only want to treat his mental health issues and fail to address the constant pain he is in.
‘I get to the end of the day some days and I’m literally balled up on the ground crying I’m in so much pain.’
Haydn applied for the Disability Support Pension but wasn’t successful. Despite having letters from his psychiatrist and pain specialist, Centrelink assessed him capable of working 16 hours a week.
Haydn has tried to apply to the NDIS for funding to pay for physiotherapy, hydrotherapy, massage and a support worker to help him cook and do some tasks. But he gave up because he couldn’t afford to pay an occupational therapist to complete an assessment.
Haydn is also worried about getting involved with the NDIS. ‘It’s just been bad thing after bad thing in the news,’ he said. ‘If it does get knocked back there isn’t really much avenue for appeals and what not and if you appeal a decision you can be sitting there waiting a fucking year for an answer.’
Haydn has two small children.
His partner’s ex-best friend recently told child protection Haydn uses illicit drugs.
Haydn said the accusation was ‘ridiculous’ and she was being ‘malicious’. Child protection made him leave the house for a week and drug tested him.
‘I’m on ADHD meds and … I’ve got to do the drug test and it’s come back positive for amphetamine and even then, it’s not methamphetamine, it’s very clearly amphetamine, like what I’m prescribed.’
Haydn had to go to court. He was allowed to return home but child protection have to see the children once a week.
‘A lot of their concerns got disproved and they’re still involved.’
‘The one good thing that’s come out of the stuff with [child protection] is we’ve got a support worker.’
The support worker is helping Haydn make another application for the Disability Support Pension.
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.