My fear for our community
I am so fearful for our community across Australia today.
I’m going to talk about the NDIS, so firstly, I want you to understand that I know the NDIS needs an overhaul. The system, as it stands today, is easily wrought and so open to fraud. There is no denying that. There is also no denying that the call for this funding is more and more with each year. The review and changes to NDIS are important, but so are the HUMANS it is supporting.
And for those of you who don’t know, I have two adult kids with disabilities, so I have insight into what it’s like to live with children who need extra help, and I have experience with the NDIS.
Over the last month or so. I’ve had many mums and dads message me to tell me about their NDIS review and how their plans for the children have been decimated. Imagine being offered FIVE hours of respite over 12 months. That’s not even half a day. This makes me feel sick.
How about only 10 hours of speech therapy over 12 months? And how would you feel if your child needed psychologist appointments and that was denied completely? I’m so angry and fearful as I type this.
There are families who are so consumed by caring for their child, they can’t get out the door to have a coffee with a friend, or something else so small. Their community becomes smaller and smaller because of the inability to invest time in their friends, because their children consume their time.
As parents, none of us mind being consumed by our children; after all, we chose to have them. We know that being a parent is 24/7. Kids with higher needs not only require emotional support from a parent, but often physical help too. This is exhausting.
It’s so terribly hard to explain to people who haven’t lived this. One of my best friends said recently that if they lose funding, then they should get another job to cover the costs of the therapy that is needed. I was appalled. This friend has known me for years, has been with me through all of my children’s therapy and saw the input I had to do with and how all-consuming it was. My children weren’t that ‘high needs’. How can I explain that having a job when a child requires high care is not even an option?
How do families without any other family support (grandparents, aunts and uncles and so on) get by? They don’t. They are locked in their small world of routine and caring. As one of the mums wrote to me recently, ‘We are on a lonely island’.
I’m terrified that we are on the brink of a tidal wave of murder/suicides because families will not be able to cope with the cuts and changes to the NDIS plans. I understand there will be other changes and children will be shifted to different support systems, but what about the young adults? The disabled adults who don’t fit into early intervention anymore, who have reached their ability and are still requiring hours and hours of support from their parents? These are the invisible people that no one is seeing.
How do we help? I’m still working on this. I have ideas. AI algorithms are being used to assess review applications. My understanding is that these can’t be overridden by a human. This in itself is appalling, and the first thing that needs to change. I have ideas to connect carers and support people, but to do this, I need time and someone to help me write a business plan. If anyone has the ability to do this and is willing to offer the services for free, please get in contact with me so I can see if we fit together.
For everyone else, if you know a family who is struggling, please check in with them. Ask what they need - although sometimes that question is just too damn big and hard to answer. So dig down, ask about their NDIS plan and support services. Write to your member of parliament if you have details. Sometimes a mum just needs fifteen minutes to have a coffee. Dad might need fifteen minutes in their shed or have a beer.
We need to look out for and support these parents.
How to find your local member of parliament: https://education.parliament.nsw.gov.au/who-is-my-local-member-of-parliament/
