17-year-old Alan Clayton was born with Down Syndrome and diagnosed with epilepsy at the age of seven.
He can have up to 60 seizures a day and requires around-the-clock care.
As Alan’s mother and full-time carer, Anne Clayton says every day is a challenge: “Once the epilepsy came in it’s just gone downhill,” she says.
“Now it’s gotten to the stage where I’m on a carer’s pension, I can’t work, there’s no money coming from any other source.
“Anything that we want above the basic food and a roof over our heads, I have to ask for . . . and that is really hard.”
An estimated 405,500 Western Australians live with disabilities.
According to the 2008-9 National Disability agreement, nearly half of Australia’s disabled population requires more assistance than they currently receive.
When Alan turns 18 this year (2011), the government will recognise him as an adult and his current therapy and funding switches over.
“All (the funding) will be done differently, you’ve got to go around and do your begging again, apply to different groups, look at what options are available,” she says.
“I’m embarking on that now, the whole time you have to say how useless you are— how you can’t cope, you can’t do this, you can’t do that.”
Listen as Anne Clayton describes the emotional ordeal in asking for financial support.
Despite an announced budget measure of $30.2 million towards disability aid over the next four years, Ms Clayton believes the Government has little time for people with disabilities and their carers.
“Come election time the Government will tell us ‘We’re going to do this and that for you’, and then immediately take something away from you in another area,” she says.
“There are so few recourses for so many people in desperate need.
“There’s such a big bunfight for everything.”
Last month Australia Day ambassador and entrepreneur Simon McKeon said under-funding for disability services is ‘un-Australian’ and ‘an appalling waste of human potential’.
“This is an inexcusable way to treat members of our community who have real need of our support,” Mr McKeon says.
Despite barely affording rent every month, Ms Clayton says she seriously considers moving overseas to receive better support.
“I know quite a few people who have gone to Europe over the years —for the one reason that they have a child with a disability and they can’t get the assistance here,” she says.
“Australia doesn’t offer the help that there should be.
“The Government doesn’t want to put any money into it, they’re not going to get anything back from it, so what’s the point.
“They consider us a drain on the economy.”