Jacqueline
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‘I hope that parents of adult people who have a disability will be able to have their own life without worrying about their children or being harnessed to them like me and my mum.’
Jacqueline, in her early 30s, lives at home with her mum. She is autistic and has attention deficit hyperactivity disorder and a range of complex health issues.
Jacqueline told the Royal Commission that the failure of the NDIS to take into account her health issues means she increasingly relies on her mother to care for her.
‘The NDIS has said that they can't consider health issues and their impacts on my life in judging the amount of support that I need. This means that every year I have had either a panic attack or an autistic meltdown at the planning meeting.’
Jacqueline said her health and her disabilities have a profound effect on each other, and she fears that without more NDIS support for health care, she will end up in hospital.
‘They do not care that I need to see my GP at least once a week or other health care once a week either. They do not care that I have not been able to get out of the house and into the community for more than 18 months. They just say that “we do not do health care,” which shuts down the conversation.’
With more support to manage her health, Jacqueline believes she could eventually become more independent. She wanted to be a disability support worker and had finished a TAFE course, but could not pursue this career while she struggled with her health. Her mother helped as much as she could, but it was affecting both their lives.
‘She has not been able to have her own life. She has not been able to do her own activities in the community without having to worry about me. This would not be an issue if I had enough support.’
Jacqueline hopes that, in the future, the NDIS will consider the impact broader health issues have on the lives of people with disability and the family members who care for them.
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.