Don’t mess with us

Robin and Corrina Parsons with their children Isobel (6) and Thomas (8) at home in Carine. Picture: Marie Nirme d401917
Robin and Corrina Parsons with their children Isobel (6) and Thomas (8) at home in Carine. Picture: Marie Nirme d401917

The DisabilityCare Australia program, formerly the National Disability Insurance Scheme (NDIS), was introduced to Federal Parliament on May 15 and received bipartisan support from both the Government and the Coalition.

It is a scheme designed to centralise financial aid for individuals with a disability, funded through a 2 per cent rise to the Medicare levy from July 1, 2014.

Every other State and Territory has signed up for launch programs, selective trials that will run until the full scheme is implemented in 2019.

But Mr Barnett has refused to sign up to the program before the Federal election in September, saying his government’s My Way scheme is better funded and more effective than DisabilityCare Australia.

For Robin and Corrine and their daughter Isobel, whom they affectionately refer to as Izzy, Mr Barnett cannot change his mind soon enough.

Isobel has lissencephaly, literally meaning smooth brain, a neurological disorder which means she does not have as many neural pathways as the rest of us.

She had developmental delays,suffers from epilepsy and has cerebral palsy through her lower limbs, as well as visual impairment.

The bubbly six-year-old attends Burbridge School for the Disabled in Kooondoola, a satellite school of East Victoria Park’s Carson Street School, WA’s only
Primary Education Support School.

She is one of only four people ” three children and one adult ” who have lissencephaly in WA.

For Isobel, every blonde person she meets is Ja, after her first carer Jenny, and every brunette Granny.

Every dog is Sally after her own dog and every horse is also Sally.

Her mother Corrine is her fulltime carer despite working parttime.

In an average week, Isobel would spend eight to 12 hours in medical appointments and physical therapy.

Not only is the workload exhaustive for both Corrine and Rob, they find the current level of bureaucracy frustrating.

‘It’s an absolute maze to navigate through the bureaucracy,’ Rob said.

‘This bit is run by the State Government, this bit is run by the Federal Government, this bit is funded by the non-profit sector’e will bring.

‘It will mean you can track, map and monitor a disability, what it needs and you can settle it, and as a parent get on with the job of caring instead of being frustrated by bureaucracy and administration.

The current system is like driving in fog ” we can only see 12 months down the road in terms of funding.

‘DisabilityCare will clear that and we can plan for the future, when we’re no longer here and our son Thomas will have to take some responsibility’