Geoffrey* is a father of four and the carer for his son Ian.* Geoffrey and Ian live in regional Victoria. Ian is 20 years old and has an intellectual disability and autism spectrum disorder. He has also been diagnosed with mental health conditions including schizophrenia and obsessive compulsive disorder.
Geoffrey recalls first noticing Ian’s mental health issues when he was 13 years old. By 16 years old, Ian’s mental health had deteriorated and he was becoming aggressive.
We tried contacting probably a dozen psychiatrists, begging them to see [Ian] because we felt something was very, very wrong, but we couldn’t get any help.
When we told them that he was autistic and had an intellectual disability, they pretty much all ran for the hills, except one psychiatrist said, ‘I’ll put him on my waiting list’.
After waiting more than six months, they saw the psychiatrist and he assessed Ian as experiencing psychosis.
He told us [Ian] is responding to psychotic episodes; he’s responding to things that aren’t real.
Geoffrey said despite Ian starting treatment, his behaviour escalated and he was admitted to his local adult psychiatric inpatient unit, despite being only 16 years old. Geoffrey said Ian responded well to treatment and was discharged. However, when he deteriorated again about seven months later and tried to seek a readmission he was turned away.
He was indicating ‘my head hurts, my head hurts; take me to a hospital please Dad’ and crying. Since then, the psychiatrist has said he thinks this is [Ian’s] way of telling you that he’s seeing things and he’s not sure if they’re real. But we couldn’t get a readmission, which was nothing short of disgusting.
Not long after this, during a psychotic episode, an incident occurred involving police intervention. Ian was then readmitted into his local adult inpatient unit, and then transferred to an adolescent inpatient unit in Melbourne. Geoffrey said this was where he received the best treatment and care, with daily visits from the psychiatrist, and Ian was able to complete some schooling at the unit.
But once Ian was ready for discharge, Geoffrey says there was nowhere for him to go, so Ian was stuck in hospital. Child protection services had become involved and assessed that it was not safe for his siblings for Ian to be in the family home.
Due to Ian’s needs, Geoffrey began the application process with the NDIS so Ian could access supported accommodation. This was delayed due to Ian initially being deemed ineligible for the NDIS, which was appealed, and then there were waitlists to access the supported accommodation.
The NDIS package took six or seven months to get approved. And that was why he was on that ward for so long as he was ready to be discharged after five or six weeks.
Ian was still in the inpatient unit, even after passing the age limit on his 18th birthday. Eventually, he was discharged when he was given access to live in an NDIS‑funded shared Specialist Disability Accommodation with the support of a community mental health support provider.
Geoffrey has concerns about Ian’s wellbeing if he requires a future admission and feels that the adult inpatient unit would not meet the needs of a young adult with both mental health challenges and disability.
Our biggest fear is if he becomes mentally unwell again and needs a readmission to hospital, we are so concerned for his safety.
Geoffrey says despite many difficult years, Ian is on a good trajectory and is currently receiving good support. In a future system, Geoffrey would like to see more services for people with co‑occurring disability and mental health challenges.
It’s with great sadness that we don’t have an inpatient unit for young people between 18 and 25 with dual disability.
Source: RCVMHS, Interview with ‘Geoffrey’ (pseudonym), November 2020.
Note: *Names have been changed to protect privacy.