The mother of a man who lives with severe disabilities says she is hopeful drastic change will occur in the wake of the disability royal commission's findings — and says people with disabilities and their families must be at the heart of the response.
WARNING: This story contains images that may distress some readers.
- More than 220 recommendations have been made by the disability royal commission
- One of the South Australian families who shared their story is hopeful of change
- Families and advocates say people with lived experience must be at the heart of the response
Karen Rogers shared her son Daniel's story with the commission in 2021, giving evidence about his 15 years in a group home run by South Australia's Department of Human Services (DHS).
She told the inquiry that standards of hygiene for Daniel, who lives with autism, intellectual disability and epilepsy, started to drop, and despite making complaints, no significant changes occurred.
Then, unexplained bruising appeared on Daniel's body twice.
After the second incident, Ms Rogers said Daniel had to be taken to hospital to check there was no internal damage.
"He didn't want to go back [to the group home afterwards], he was frightened," Ms Rogers said.
Daniel has lived with his mother and stepfather Graham since.
The commission found Mr Rogers was neglected by DHS, and DHS apologised to the family.
The commission has made more than 220 recommendations, calling for sweeping changes across areas from education and employment to the justice system and governance.
One of those recommendations was phasing out group homes.
Ms Rogers welcomed the finding, but said it would take years to establish people in different settings.
"They're places where things can get hidden, and there isn't a lot of accountability," she said.
"There needs to be a lot more scrutiny of people setting up accommodation, group homes, day options."
Visibility in the community key
Ms Rogers said many current care options for people with disabilities kept them separate from their communities, referencing Ann Marie Smith's 2020 death.
Ms Smith lived with cerebral palsy, and before her death, police believed she spent up to a year confined to a chair in her home, 24 hours a day.
Her care provider was fined more than $12,000, and her death sparked numerous investigations and reviews.
At the time, founder and director of the Growing Space, Sam Paior, said Ms Smith's death made people "realise just how isolated some people with disability are".
"The best defence against abuse and neglect is a full life and a belonging community," she said.
Ms Rogers detailed how Daniel would now go to certain places on certain days for regular activities, with locals asking questions if he was not there.
"There needs to be a lot more visibility," she said.
"If we die, Daniel's here on his own, only with staff — but his presence in the community is visible, he would be missed.
"It frightens me that people are so segregated in a lot of these settings."
'Bureaucrats need to sit down and listen'
Ms Rogers said the key to any response to the royal commission findings was involving people living with disability and their families.
"If there's a task force, it needs to be made up predominantly of people with disabilities, their families, and some service providers and bureaucrats, but the bureaucrats need to sit down and listen," she said.
"People with disabilities and their families aren't getting their two cents' worth in."
Belle Owen from Adelaide-based disability advocacy organisation JFA Purple Orange said she wants to see a "disability-led response" to the royal commission's recommendations.
"Consultation isn't enough, we need to be co-designing responses and new policies and every element of the way we need community to be front and centre," she said.
Ms Owen also wants to see funding for independent advocacy in South Australia.
"Those kind of things we know are so, so important for preventing things but also for responding to things when people are in the aftermath of incidents and events," she said.
Human Services Minister Nat Cook said plans were underway to build upon a "small amount of funding" made available for advocacy under the previous government.
"We have been working to review where that advocacy service and future provision will sit," she said.
"There is work to be done … and I'll work with the federal government to establish who should be funding what, where and how and ensure that across government we're making sure we're providing the best possible service that we can."
Ms Owen said she hoped people who had shared their stories with the Royal Commission could now start their "journey … of healing".
"For the last four-and-a-half years, people have poured themselves out, they've shared moments of their lives when they've been the lowest and it's all been in the hope of change," she said.