Struggling parents find support

A QUARTER of all parents of disabled children are spending more than five hours a week dealing with the paperwork around the complex NDIS scheme, a new survey has found.

And 60 per cent of parents end up asking for help from external support agencies to navigate the scheme, which funds support services for their children.

The survey of more than 1000 parents, who use the Kindship social networking platform, also uncovered high levels of anxiety and depression among parents.

Just over three quarters of the parents reported feeling socially isolated as a result of their situation caring for their children, while 62 per cent had lost friendships.

The Kindship app was set up after four parents raising disabled children banded together to help other parents.

Now they’re planning to launch a Kindship Wallet, a plan management tool which will allow parents to search for services by parent rating, waitlist times and distances.

The key will be that only parents with lived experiences themselves will be employed as staff, said Kindship co-founder Sandy Golder.

“It is not uncommon for families to sign service agreements with providers and then sit on waitlists for 12 plus months,” she said. “We are providing parents with crowdsourced provider reviews and waitlist data, which will help families understand their options and find alternatives. This has never been done before.”

St Clair mum Amanda Kenny, who has five boys including Ashton, 9, who has autism, says her boy had “severe school refusal” for several years.

“Getting him to enter the school gates became impossible,” she said.

The family ended up changing schools, and he attended a support unit and “he started to flourish” with more one-onone help. Ms Kenny now works with the Kindship team, helping other parents.