Keaton
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Keaton runs his own business, and his volunteer work has earned him significant community recognition. He told the Royal Commission the recognition and awards he’s received are ‘testament that even severely disabled people like myself can be valuable assets in the community’.
Keaton was diagnosed with a ‘rare proximal muscle weakness’ 20 years ago. He uses a wheelchair and requires a ventilator to help him breath. For the last 12 years he has needed 24/7 personal care and support.
A few years ago his long-term care provider was bought by another provider. Clients were assured ‘nothing would change’ and ‘services would in fact be better’.
Recently, however, the company advised they were ceasing services in some, mainly rural, areas.
Keaton told the Royal Commission the government department responsible and the NDIS should not allow this to happen.
Keaton’s services have been substantially reduced. The ‘amazing carers’ who have worked with him for up to 15 years have been replaced with inexperienced support workers.
Sometimes when he has trouble with saliva or phlegm or a bloody nose, he is unable to speak and non-verbally indicates the problem that needs to be addressed immediately. Inexperienced workers ‘panic when this happens’.
Support workers no longer deliver his medication or required meals via the feeding tube.
‘This has put an enormous amount of stress on my wife who now has to do my medications three times per day.’
The company has also ceased support for Keaton to socialise in the community which has again increased his wife’s workload.
‘NDIS was supposed to be helping reduce the load on primary carers not increasing it.’
These changes affect Keaton’s health, his quality of life, his relationships and marriage.
He has made several complaints and met with the general manager, to no avail. He believes the ‘goal is PROFIT for the company and NO empathy for the clients’.
Keaton has also complained to his state and federal members of parliament. ‘[They] basically said that I would need to seek a new provider!’ he said.
As a high-needs person living in a rural area, he and his wife are anxious about finding a new provider and training new support workers.
Keaton would like providers to be made accountable ‘so they cannot use their clients like "pawns in a chess game" where they sacrifice them for greater rewards’.
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.