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Hard to Swallow

Ellen has a swallowing disorder called dysphagia. This means she can be at risk of choking or even dying when she swallows. Up until last year she got good specialist therapeutic support for her swallowing problems but the NDIS decided to stop funding this support in 2017. Take action at www.nswcid.org.au/HardtoSwallow TRANSCRIPT Ellie caught a rare bug through her nose. It went up through to her brain. We didn’t think of it at the time, and then it really damaged her. She ended up having a stroke and dysphagia. The brain, on the end of the spinal cord, there was no luck into trying to repair that. We had to put all of her medication into liquid. Sometimes Elle won’t even open her mouth. If she doesn’t feel like a feed she’ll clamp her jaw. It was harder when you couldn’t get through to her mouth, and that was making her swallowing, jamming up and she was choking on water. Before the NDIS came in, the ISP package from DADAC, used to cover everything. We used to have all this therapy, OT, speech, and now there’s not enough funding for that. The funding cut, and that’s the problem with the new NDIS program - they think that we don’t need things like therapists, OTs, physios. We need them. We need them massively included into the NDIS packages. They [NDIA] say ‘They just want the money’. No. We need their love. All the equipment that lies down through the throat down to your stomach is all [managed] through a speech therapist. If I haven’t got a speech therapist for Elle, how am I going to get advice for what I need, and the next step, and the stages to her health? Oh I’m shattered. If we haven’t got the speech therapists then I don’t know how you’re going to get it. It’s about the love of their patients. That’s what I really love about therapy. They told Ellie that she wouldn’t live to the age of 5 but, we’ve had her now until the age of 20. And we couldn’t be happier. We love her to the fullest.