Baker and Katherine
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.
Baker is almost 60. He has cerebral palsy and cannot sit up unsupported, walk, talk or use his limbs. Baker needs assistance to eat, shower and use his wheelchair. Katherine, Baker’s mum, wrote to the Royal Commission on his behalf.
Baker went into care 30 years ago and has been in a facility with four residents. Katherine says he enjoyed this ‘enormously’.
‘The shared accommodation gave Baker an opportunity to socialise with other people, which improved the quality of his life immensely.’
Recently, however, Baker was diagnosed with cancer, and the shared supported‐living facility can no longer provide the care he needs.
‘We were advised to seek a place for Baker in a nursing home,’ Katherine said. ‘This has proved impossible, however. No nursing home is willing to accommodate Baker due to his complex medical needs.’
So Baker returned home to receive cancer care. Baker’s parents, however, are in their 80s, presenting a range of issues given their ‘increased frailty’.
‘Disabled peoples in Australia like Baker are living longer, due to improvements in medical care and other social and educational enrichments’, Katherine said. ‘However, there are few facilities that currently cater for the intersection of disability, older age and medical care. What is needed is a dedicated facility for disabled people as they age, including medical staff who are educated in disability care.’
Katherine believes ‘there has been a lack of policy discussion about disabled persons who require medical care for acquired health conditions, such as cancer’. This leaves Baker ‘without a “place”, in a system which fails to recognise the changing circumstances of disabled people as they age’.
‘We feel strongly that Baker has been let down,’ Katherine says. ‘While any policy changes are unlikely to benefit Baker directly, we both understand the importance of communicating our story in the hope of helping other disabled people and their families in the future.’
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.