My name is Heike I am the mother of 3 children, two of them have a disability. It’s a physical disability of a genetic order. The closest description would be cerebal palsy. My oldest child is 10, my middle child is 8 and the youngest Billie is 4 ½. The oldest and the youngest have the disability.
We get up fairly early in the morning. I take the boys to their school. My oldest son attends a mainstream independent school. Then I take Billie to her special pre-school. I spend a lot of time looking for wheelchairs. Doing paper work to get things organised, trying to get therapies lined up for them.
I have to do some personal fitness to be able to lift my daughter every day. And then I do the reverse. I pick them up from school. Do homework. Make dinner. Get the kids ready for bed. Stuff every mother can relate to.
The only thing in our case, it’s a little more complicated as we have two walkers and three wheelchairs, there is a lot of kit that needs to be carried. Homework is a little more involved as my children need more help.
I spend a lot of my time fighting bureaucracy to get services and equipment for my children. After school we attend as many therapy sessions that we can get hold of.
To access services first of all you need to know they exist and the current system is hopelessly complicated. Some things are provided by the local council, some are provided by Federal Government or the State Government and others by charities.
You can spend months on a waiting list to be even be met and assessed. Then you spend another couple of months on a waiting list to get the service.
Billie has had to wait four months for early intervention speech therapy. You can do a lot in four months so it’s a lot of wasted time.
Billie is not independent, but a power wheelchair for a young child is not funded at all, it doesn’t take into account all the learning that is missed and the developmental delays.
You spend time fundraising, begging family members for money. Scrimping where you can. Trying to find the wheelchair that you want, order it yourself, pay for it yourself. The same with therapy.
If we had an NDIS I believe that we wouldn’t not be spending quite so much time on waiting lists especially if the NDIS has a self-directed funding component to it.
Once you are over the initial shock of your child has a disability, you kind of get to know the system, you know what your child needs are. I dare say that parents and later on the person with disability is far more capable of deciding what they need and when they need it.
The most important thing the NDIS would give us is a change of mentality. Where people with a disability are seen as full people with rights, as consumers of products and services and not the charity cases that we are at the moment. You create a culture of dependence. That is not good for society or people with disabilities.
Billie, four years old
If an the NDIS was here we would have the equipment that children need to physically get to school and do the things that children need to do. Like walking around, opening cupboards, standing and painting, playing circle games standing up. You cannot underestimate how important that is. - Heike, Billie's Mum