Nikolas and Valery
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.
‘It’s a hard road. A lot of these facilities that run these group homes don’t understand where the parents are coming from. I am an advocate for my son and they don’t like that. They like to be in control.’
Nikolas is in his late 30s. He has cerebral palsy, autism and is non-verbal. Valery, his mum, said he ‘understands 99 per cent of what you talk to him about’ and communicates using basic sign language.
When Nikolas was in his late teens he moved into a group home run by a disability service provider. At first Valery had a range of issues with management. She said there was ‘no compassion, no empathy’ and she felt isolated.
‘They were expecting me to let go and let them virtually run his life which I was not going to do,’ she told the Royal Commission.
At one stage Valery became upset with staff after seeing Nikolas had a broken front tooth and none of them knew how it happened. Management took out a restraining order against her.
When there was a change of management, the situation improved. For the next 20 years Valery had a ‘very good working relationship’ with the new managers. There was good communication, understanding, respect and empathy.
But a few years ago the managers were dismissed and the CEO of the board became the manager.
Valery described the new manager as an ‘absolute nightmare’.
There was a huge turnover of staff – the manager dismissed the old staff, often for petty reasons. Staff stopped communicating and interacting with Nikolas who – because he couldn’t express himself – started having behavioural issues and ‘became quite violent’. When Valery phoned and asked how Nikolas was he was always watching TV.
About a year ago staff reported bruising down Nikolas’s back – saying he fell out of bed. Nikolas had never fallen out of bed before.
Valery saw the bruises and photos staff took after his fall, but they didn’t fit with a fall out of bed. Staff then suggested Nikolas fell in the shower. But Valery said this didn’t seem consistent with the bruising either.
A support worker contacted Valery privately. He told her he had photos of other bruising Valerie hadn’t been shown. He said he couldn’t show her the photos because he was frightened he would lose his job. Valery went to the police, who said they couldn’t do anything without more evidence.
Valery complained to the NDIS Quality and Safeguards Commission, which conducted an investigation and made a number of recommendations. But the manager ignored them.
A short time later the manager cancelled Nikolas’s service agreement and asked him to leave his home as soon as possible.
Despite sustained pressure, Valery refused to move Nikolas until she found a place he would be happy. Compatibility was an issue and it took almost four months to find Nikolas a new home. The NDIS support coordinator was ‘brilliant’ and extremely supportive, Valery said. ‘I could rely on her 24/7.’
Nikolas’s therapists recommended a transition period to help him adjust to his new environment but the manager refused to cooperate. In the end Nikolas had only two sleepovers at his new unit with the new staff until he moved ‘cold turkey’.
Nikolas took some time to adjust and had a number of behavioural issues, but Valery said the staff and therapists supporting him have been fantastic and patient.
Nikolas is engaged and learning new skills such as cooking, and in the last few weeks Valery has noticed positive changes in her son.
‘I am overwhelmed with the support,’ she said.
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.