Jay and Ava

‘It’s really hard to express exactly what’s wrong. Issues seem trivial but when one gets many issues, frustration and worry begins to turn to anger.’

Ava told the Royal Commission that when her son Jay was in his 20s he was keen to move out of home and become more independent. Jay has an intellectual disability and epilepsy and needed a place where he would be well supported and close to family and friends. However, there was no disability accommodation in their area.

Then in her 60s, Ava wanted to find accommodation that would keep Jay ‘safe and happy when we are no longer able to be so involved’. Together with her husband and other parents they advocated and lobbied government and providers to build specialist accommodation. It took more than 10 years.

In the mid-2010s Jay moved into a small villa complex with a few friends. They each have their own independent fully equipped villa with 24/7 staff on site.

Jay loves his new home. But it is now run by a large disability service provider and the quality of care has been poor. Ava said it does not meet the standards the community, government and the NDIA expect.

Jay told management one of his top priorities – documented in his care plan – is his personal care, including oral care. Jay’s dentist provided written instructions and management assured Jay and Ava that staff would follow them.

Once Jay settled in, Ava and her husband went away for a few months. When they returned, Jay’s teeth ‘were in a really bad state’. ‘The dentist stated that his mouth ulcers, gingivitis, bleeding gums and decaying teeth were due to neglect,’ Ava said.

Ava spoke to the team leader who gave reassurances, but staff continued to neglect Jay’s oral health. It took a formal complaint for the issue to be addressed.

Support workers also neglect Jay’s personal care. He needs help to dry himself properly but workers leave him to do it himself. His skin becomes inflamed, red and broken. His fingernails are often long and dirty.

Ava and her husband regularly clean Jay’s villa after staff have cleaned it. Staff leave mould to grow inside the bedroom and in the shower. They do not clean the shower properly and never clean the fridge. They will not move furniture, even small pieces, to vacuum the floor. Jay’s clothes are not washed properly and often smell – they are never ironed. The outside of the building and gardens need maintenance.

‘It seems that because residents have a disability that “near enough is good enough”,’ Ava said. She and her husband do as much as they can but they are now in their 70s and know this is not sustainable.

Management and support staff haven’t helped residents connect with the neighbours and local community. Jay’s social circle is limited to the residents, many of whom are non-verbal, and support workers. Sometimes when Jay needs help, feels like a chat or wants to ask a question, he finds a support worker. But recently he was told not to talk to staff when they are on their breaks.

Ava and other parents, worried they won’t be able to help and advocate for their children in the future, met with the executive manager. They told her some of the problems occurred because the team leader was hardly ever on site and never answered phone calls, emails or texts. The executive manager appeared to listen, immediately replaced the team leader and said things would change.

‘We ask ourselves why we did not move quicker and I think the answer to that is that we have no faith that any other disability organisation will be any better.’

Ava hopes the Royal Commission will restore her faith.