Family member of a person with disability
Thank you for the opportunity to make this submission.
I have for the last thirty years been the Mother, advocate, primary carer of my son who has a severe intellectual disability and uncontrolled epilepsy, he is unable to make complex decisions about his life and his speech is limited. Therefore, he is completely unable to advocate for himself.
In my experience systemic advocacy in this country is driven by ideologues, academics and people with physical or sensory disability, none of these people have any idea of my sons needs or the many others like him. Yet they continue to be heard by government on the needs of people with moderate to profound intellectually disabled people.
Why have Families who provide the care and see to all of the needs of these very vulnerable people not been given a voice at the table, for after all who knows them better than the very people who have been at their sides for decades.
This gap in funded advocacy is nothing less than discrimination and a violation of the human rights of people with moderate to profound intellectual disability. My son doesn’t know he has rights, but I do and I fight for them almost daily as his personal advocate, but as long as there is no funded advocacy with a voice to government and a say in policy, the policies will be discriminatory.
Many of the funded advocacy groups would say that because my son is an adult he should be assisted to make his own decisions and I agree that to some extent he can make choices, but not life altering choices that would put him in danger. They also quote phrases like dignity of risk, but I say how much risk is dignified!
These very words show their wilful ignorance of the level of disability some people in our community suffer and their need for protection and quality care, care that does not come at the expense of their inclusion in our society.