My constituent Katherine McDowell, of Dubbo, has been fighting for her son Harley since he was diagnosed with incurable Juvenile Huntington’s Disease at age 11. That was 15 years ago. As her son’s condition has deteriorated, Katherine and her family’s lives have been further impacted by the stress of trying to navigate Australia’s ever-more complicated disability schemes and systems. This caring, determined woman who is asking for the federal government to establish Harley’s Law, that will legislate: Mandatory deadlines for essential equipment and urgent funding Clinical oversight and mandatory human review for all decisions affecting terminal, degenerative or high-complexity disabilities
- A ban on automated tools reducing supports without human sign-off
- Transparency for any automated tools used in disability assessments
- Enforceable rights for people and families to choose home, community or residential care
- And creation of an independent Dignity in Care Commission.
I support Catherine, Harley and this petition, and I will fight for better systems for Australians either living with a disability, or caring for someone with a disability.