TWO Wagga parents will be driving change in Canberra today by sharing personal stories to key MPs and senators about what it means to have children with severe disability.
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Chris and Carol Harmer have three children, two of whom were born with an extremely rare condition called Phelan McDermid syndrome.
This syndrome means a life of severe physical and intellectual disability.
Their daughter Emily is 19, but she has never uttered a word and if she ever wants something to eat she will have to take her mother or father’s hand and walk them to the fridge.
It’s a similar situation for their youngest child, Tom who is 15, although his condition is more moderate.
Mr Harmer works as a truck driver while his wife has the full-time job of looking after the two children when they are not at Kurrajong Waratah or Willans Hill School.
“It is a very full on experience,” he said.
“The kids are really wonderful kids, we love them so much and they are happy, but you’ve got to be switched on around the clock.”
After applying for a grant from the SMILE Foundation to help them with the expenses which come with having disabled children, the family was invited to speak at a briefing in Canberra.
“What I want to say to them is that I really would like to see the carer payment that Carol gets not be means tested,” said Mr Harmer about how his wife only receives $10 a week to look after the two children.
“It can be very expensive – we buy a lot of medicines for Emily and Tom and anyone who has got a disability or syndrome has trouble paying for these.”
