Gatlin, Callahan and Samina
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Gatlin, in his mid-40s, is autistic and has an intellectual disability. His father Callahan described him as a ‘very gentle person’. ‘Pleasant natured,’ said his mother Samina. ‘And we get a lot of smiles out of him,’ said Callahan.
When Gatlin was about 16, his parents realised they needed to find a long-term home for him.
‘We decided we’re getting no younger to provide 24/7 care for Gatlin, and that getting a good home place would be long and difficult,’ Callahan said.
Callan and Samina wanted a home for Gatlin that offered more than ‘minder’ care, that provided meaningful support.
They were particularly interested in ‘person-centred active support’ (PCAS), a personalised program which would give Gatlin the opportunity to interact with others through a range of appropriate activities. They felt this was important given the nature of Gatlin’s disability.
‘If left alone, people with autism are mostly incapable of occupying themselves constructively and will soon resort to obsessive and unsociable behaviour patterns,’ Callahan said.
Callahan said Gatlin has had one experience of ‘A-team’ care, which lasted for about two years.
But these staff moved on and Gatlin’s parents have had to return to their previous vigilance, monitoring the care Gatlin receives and ensuring his needs are met.
Callahan and Samina shared a list of issues where staff had not followed agreed procedures and practices.
They discovered that Gatlin had not had a bath for more than five years, despite his personal care plan listing this as a twice-weekly activity.
‘These sort of things you can do, still continue to do, is things like a bath which helps them to relax … It didn’t happen because the staff condemned the old bath but never told anyone.’
Support workers didn’t read notes in Gatlin’s communication diary, entered by staff at the day service he attended. One time, this resulted in a medical emergency.
Gatlin’s parents said when the NDIS was introduced they felt optimistic that care would improve. Now, ‘despite the good intentions of the NDIS process’, they are disappointed. Too often, Callahan said, both management and staff see the NDIS system as ‘just carry on as usual’. Their mindset is, ‘Parents, leave your family member with us, go away and don’t bother us.’
Callan and Samina still don’t have the confidence in Gatlin’s care they had hoped for.
‘In other words, we are parents that need to – to live forever. This is how a lot of parents look at it. They need to live forever to make sure that things are being done,’ said Callahan.
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.