If only this was a scratch and sniff page. You could then get a whiff of the vomit I just retched onto the page as I started writing this blog post.
If I told you that I can no longer afford to send my son to special needs vacation care or respite because it’s gone from $36 a day to $200, would you vomit? It seems my body thinks that’s the correct emotional response. Anyone can go to the local OOSH, but my child can’t. He is a big child in nappies, who runs on the road if not fenced in, has seizures and can’t talk. He needs particular, specific care. The NDIS broke my childcare! So what do you do when it costs $1000 to put your child into holiday care for a week? Yes, you close your practise and hang out with your kids; as of now I only work 40 weeks a year. Not a particularly good business model, but thems the breaks.
The disaster is bigger than that, but this is the easy bit to convey. What bites is that it is systemic. Many children are losing their care funding. Not cut, lost. We got $0 in our bucket for care. No afternoon school care, no holiday care, no respite, nothing. NOTHING! This, my friends is the pointy, obvious and sharp tip of the iceberg. The rest lies deep, hidden and disastrous. I shall elaborate on it another day.
I have screamed and cried. The betrayal ! How do I even express the internal loss of worth in myself that I feel? That my desire to care for others, my desire to earn and be a good role model to my other child, the internal worth I have for contributing to society and my family; how it is has been damaged? The very scheme I felt held the torch up to my dark path, the hope I felt and how I believed it would aid us; to return some sanity and dignity to our lives, it has made life worse.
Make no mistake. Life with a disabled person, with serious medical needs, is all consuming. My husband, my parents & I are bleeding out our lives for Caspian. I could count the ways. I won’t, you will need to believe me. The NDIS was the beacon in the night. It carried hope… it lied. It carried destruction. Eventually the scheme will be right, maybe in 15 years is the guess I’ve heard. That’s a generation of children who need help, destroyed. That’s a generation of siblings squashed.
I can’t bear it.