Family needs NDIS

CARING for her disabled son Dan is an around the clock job for Kingston mum Jean Roy.

From when Dan wakes up Mrs Roy and her husband Ellis attend to the every need of their 34-year-old son who was born profoundly intellectually disabled.

"Dan's skull infused when he was in the womb," Mrs Roy tearfully said.

"When we brought him home we didn't know about his condition until he didn't start to reach any milestones.

"Now with Dan, everything we have to do runs like clock work to make sure all of his needs are met.

"We feed him, shower him twice a day, cut his hair and cut his nails, just to name a few things.

"I basically say to people Dan breathes and we do the rest."

By their son's side constantly, both Mr and Mrs Roy can't help but worry about his overall wellbeing now and into the future.

But they say their worst fears are coming true with the State Government failing to acknowledge the National Disability Insurance Scheme (NDIS) which would personalise disability payments to recipients rather than their supports being rationed.

"The NDIS was going to be a chance for governments to trial a different approach to funding people with disabilities," Mrs Roy said.

"It was going to give them a chance to have a say on their own care and lifestyle.

"When Campbell Newman was on the campaign trail he promised he would look after people with disabilities.

"Yet the first time he was asked to support people with disabilities he refused."

Mrs Roy feared this decision would have negative long term ramifications for not only her son, but for other families around the state who care for a disabled loved one.

"I fear many families will turn around and give their disabled family members to the state because they can no longer do the work," she said.

"If the government doesn't increase funding to families who do all the caring they are going to become overworked and stressed and then will not be able to cope anymore.

"And then what will happen?

"This government would have to provide places for the disabled to live and then have to support them with staff to care for their needs."

Mrs Roy said she shudders at the thought of her son living in the care of someone else.

"This is something we would never do," she said.

"We have not put all of our selves into caring for our son to do that.

"I have written numerous letters to Mr Newman outlining my concerns because someone needs to stand up and say this isn't right.

"I am fighting not just for Dan but for others as well."

In a recent media release, Mr Newman said he reaffirmed Queensland's support for a National Disability Insurance Scheme (NDIS) provided the Federal Government funded it.