Wendy and Henry Ponsen with their son Jonathan.
By Robert Virtue (with Diane McCracken)
For 32 years, Wendy and Henry Ponsen have been dealing with the challenges of caring for a child with a disability.
The Ponsen family of Newcastle are up-front about the difficulties in raising a child with a disability.
Wendy and Henry have been caring for their six-foot tall, 32 year-old son Jonathan for all his life.
There've been ups and downs and a myriad of challenges along the way.
"[Jonathan] loves life. He loves people, and he's just a joy to live with," said Ms Ponsen.
"He cannot walk across the road; he couldn't call triple-zero if there was a fire. So he needs 24-hour care.
"It is very difficult, because we have to work out what is going on, and it takes quite a bit of patience to understand. It is a lot of care. We just can't say that we'll have the day off, because he won't let us have the day off."
Ms Ponsen said in recent times, the family has been forced to look for new ways to care for Jonathan. In the next few months he will move into the CatholicCare residential facility.
"We had to look at where he will be, because in 12 years time we'll be 80, and there may not be the availability of anything for him to go to," she said.
"I've had many problems in my life, but this has been the worst one - because of allowing someone else to take care of our son that we have taken care of in every detail.
"I just didn't want to let him go. It has to be done. There is no way out of it, but it's still just difficult."
Mr Ponsen said he had reservations about moving his son into a care facility.
"We won't compromise on Jonathan's care. I guess there are some non-negotiable [things]," he said.
"My biggest fear as his dad, is that I'm scared-stiff that he might be unhappy (going into care). That would be very difficult for me."
The disability support organisation, L'Arche, is celebrating 50 years of operation; and the friends of the Hunter branch of the organisation are holding community events to raise awareness.
Ms Ponsen said L'Arche has helped them over the years.
"We have a community where we can talk to people; where we have fun; we have meals; and we have support there," she said.
A concert will be held this Friday morning, a book will be launched on Saturday, while a forum on the National Disability Insurance Scheme (NDIS) will be staged on Friday night.
Ms Ponsen said the forum will be integral in getting the opinions of those affected by the NDIS into the broader community.
"People who have disabilities that are able to speak for themselves have more of a chance of telling the people at the NDIS what they really need," she said.
"For people like Jonathan who cannot express themselves, it is up to the parents to know what their dreams are.
"[Establishing the NDIS] has been emotionally draining, and it's been a very difficult thing because at every meeting I've attended, there has been different information. No one knows what it is, and it is still changing its values and mission, and the whole area is changing all the time."