Erin* cares for her son Matthew* who is 11 years old. Erin says that as a baby and toddler, Matthew was affectionate and interested in the world. She started to notice changes in Matthew in kindergarten.
I spoke to my maternal child health nurse, but she assured me it was Matthew adjusting to change.
When Matthew started Prep at school … [h]e became very negative, rude, aggressive, angry. It was heartbreaking.
Erin said that by the time Matthew was in Year 1, both the school and the family accepted that Matthew needed more help. The family went to a psychologist, who treated Matthew for generalised anxiety and social anxiety.
Erin said that by Year 2, things were worse. They tried seeing a speech pathologist and a psychologist. Midway through Year 2, Matthew was diagnosed with autism spectrum disorder. But by this time, he was too old to qualify for Commonwealth Early Intervention Funding.
Erin describes trying a range of strategies over the next few years to support Matthew, but his behaviour and distress continued to worsen. At one point, being left with no option, Erin called Triple Zero for urgent medical help, which led to Matthew being restrained by police and taken to the emergency department, only to be discharged shortly afterward. Following this incident, Erin said she begged the Child and Adolescent Mental Health Service to see him. A psychiatrist tried a range of medications with Matthew and eventually recommended the family stay in a children’s inpatient unit at a hospital. Matthew was at the start of Year 5.
The inpatient unit felt like a horrible place, and its look made me feel terrible.
Matthew became more violent than he’d ever been in the unit … I said to the hospital during our stay, ‘Things have never been worse. What’s happening?’
when our time was up, the hospital said, ‘You’ve got to go home now’. They sent us home with a safety plan [and] told us to use lavender oil and, if that didn’t work, to call Triple Zero … We had rung Triple Zero before and we were not doing that again—ever. I wondered, what sits between lavender oil and Triple Zero?
Erin said that after their stay at the inpatient unit, a range of services were involved. However, this was challenging.
We found the ‘siloed’ nature of the mental health system to be unhelpful.
Through the [National Disability Insurance Scheme] … we received … a number of pre‑determined appointments with occupational therapists and speech pathologists. But we had funded those sorts of therapies ourselves for years, and we knew they wouldn’t work.
[Matthew’s National Disability Insurance Scheme] funding stops at the school gate, because what happens after the school gate is the responsibility of the Department of Education.
I have had meetings where there’s been a person from [the Intensive Mobile Youth Outreach Service], a special school worker, a hospital worker, a special education teacher for Matthew (funded by Matthew’s severe behaviour funding), an after school care safety officer, the Principal, and Matthew’s teacher. I have to organise these meetings and coordinate everyone’s diaries.
The effort required to coordinate these services and care for Matthew has taken its toll on Erin and her family.
it’s too much; it’s overwhelming … the stress has taken a massive toll on my relationship with my husband … All our energy goes into Matthew’s care, and there’s nothing left for anything else … If [my husband] and I split up, what would that do for Matthew’s mental health? What does that do for all our mental health?
Erin noted that Matthew’s needs often seemed to be ‘peripheral’ to the services, ‘[t]he services just continued doing their thing, regardless of whether it was helping him.’ She believes that for people to have all of their needs recognised and responded to, the system needs to be more accommodating:
I choose to believe that people are intelligent and well‑meaning, but that they are constrained in what they can do when they’re operating in a system with rule fidelity and a cookie‑cutter model; when it is all about adhering to the guidelines.
Erin observed that there were so many opportunities for their family to be connected with services and supports, but that these opportunities were missed.
Matthew has [autism spectrum disorder], which is not preventable. However, the mental ill‑health that has come from his [autism spectrum disorder], and exacerbates his experience of it, could have been reduced if there had been earlier intervention.
Requiring people to fit themselves into a rigid, fractured system that does not function across the domains of people’s lives is damaging and not helpful or healing … It would be great to, instead, have a child‑centric approach that can move seamlessly across school grounds, the family home, public health systems and private providers. The child and family should feel that it’s about them, not about them fitting into the fractured system.
Source: Witness Statement of ‘Erin Davies’ (pseudonym), 1 July 2020.
Note: *Names have been changed in accordance with an order made by the Commission.