Wagga's Tony Nechvatal has been a full-time carer for his autistic twin sons for more than 15 years.
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Mr Nechvatal is one of more than 900,000 carers in NSW providing unpaid care for a family member or a friend who has a chronic condition, illness or disability.
He has for the past 12 years taken part in the Carers NSW biannual survey and says the resulting policy changes have led to real benefits for his family.
His sons, now aged 17, were diagnosed with autism when they were almost two-years-old, after Mr Nechvatal and his wife realised they weren't reaching their expected milestones.
"Most parents who have a child on the spectrum, when they're told their child's autistic, it is a shock. But you work out what you're going to do," Mr Nechvatal said.
"And we were blessed that we were in Wagga, to have the support of good service providers that helped us with our journey through the autism."
Mr Nechvatal has dedicated a significant portion of his life to caring for the boys, who are non-verbal, but says his family has "good days and bad days" just like any other.
He has encouraged other carers to take part in this year's Carers NSW survey, which is run in collaboration with university researchers and the National Network of Carer Associations, and is for the first time gathering responses from every state and territory.
"It gives Carers NSW an idea of the demographics of carers," Mr Nechvatal said.
"Even if only a couple of people who don't identify as carers come out, it changes the demographics."
Carers NSW will use the data gathered in its survey to advocate for carers, influence policy, and plan for future service delivery.
"We can look at how we get to those hidden carers. Or how we can support carers more," Mr Nechvatal said.
"Carers have skills that they probably don't know that they've got. Because they do it seven days a week, 365 days a year."
Mr Nechvatal said in the past carers had been "lost a bit" in the NDIS system, but feedback from the survey had led to the creation of Carers Gateway, a 1800 number referral system for greater support.
"They helped us out with something that we needed and they were very on the ball," Mr Nechvatal said.
Mr Nechvatal said the carer's journey was "all about support".
"I'm lucky, I've got a wonderful wife and a lovely daughter. And I've got two lovely boys," he said.
"Life ... is only what you make it."
The survey is open until June 30 and can be found at http://www.carersnsw.org.au/research/survey.
