Kids healthcare inequalities laid bare

WATCH: Sarah Johnston talks about the difficulties in navigating life with a child with a disability while living in regional NSW.

Transcript

00:00When you receive a diagnosis for your child I guess everyone makes a bit of a

00:05decision. Do you go to where the services are or do you stay where you are and

00:10that is something that I have considered pretty deeply and look at the end of the

00:17day happiness really doesn't matter. We are country people this is where I've

00:21been for six generations so the Central West is home. I guess when when your

00:30child has a disability you really need those services but you've also got to

00:37live life so it's really important that we also are able to access the services

00:44that we do need here in the Central West. And what do you want to see brought out

00:50to the Central West? What can make your life and your son's life easier? So in

00:55the Central West if we could bring Napa out here it would obviously

01:02make our lives a lot easier. We would be able to come out and come out to

01:07Orange rather than go to Sydney. I guess going to Sydney is such an expensive

01:14thing to do and a huge commitment especially for people that are

01:19looking after children with disabilities. We don't just have the

01:23luggage that a typical parent would would take to go away. We have special

01:30beds that we need to take, we've got wheelchairs, we've got all of the bits

01:35and bobs that you need to complete your therapy sessions. So it is logistically

01:41really tough. It's also really tough on families for mental health all the rest

01:47of it. I have noticed with Ted for this intensive in particular it's been his

01:51best intensive yet and there's no doubt that he's in his own territory. He's in

01:56the Central West, he knows where he is, he feels more regulated, he's at home and

02:02I'm more regulated. I can handle it better so I'm able to go home and tag

02:09team with family if I need to and I know where everything is before this before I

02:16received a diagnosis for Ted. Driving in Sydney would have been something that

02:21terrified me and I honestly wouldn't have been able to imagine myself doing

02:27that but I that you know that's something that I have had to conquer

02:32and I've really had no choice at that. So it's a lot nicer being in Orange where I

02:39know where everything is, where I know how long it takes to get five kilometres.

02:44I know what traffic's like, I know how to navigate you know if there's roadworks.

02:51So it's not a major impact, it's not stressful, there's just something about

02:57being in the country and it's really important to stay true to who you are as well.