Funding for Victorian Clubfoot children.
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Thank you for reading my story. My name is Lauren, and I am a mum of two beautiful kids. Last May, my 2nd baby was born with a birth defect known as talipes, more commonly known as “clubfoot”. I’ve learned that treatment for talipes is moving to the NDIS, but the NDIS doesn’t consider talipes as a disability. That means claims for support might be rejected, leaving kids with clubfeet to suffer. I can’t let that happen.
Talipes is where the foot or feet are turned inwards with tightening of the achilles heel. In most cases it is hereditary, but in our case my little girl was just 1 in 1000, with no family history on either side.
Treatment for this condition is a long process, at least four years minimum but often even longer. Without treatment, the condition can often worsen and become permanent or require multiple surgeries along different walks of life to correct it permanently. This is the reason behind my petition today.
The method that is used in most cases these days is called the Ponsetti method, where the child's bones are manipulated with weekly castings from birth. It can also include cutting of the achilles tendon for stretching - which was the case for my little girl. I don’t have to tell you what it felt like knowing my little baby girl was going through painful surgery. But she was so brave, and got through it.
After this series of treatments, she has to wear her “boots and bar” - an apparatus designed to correct the defect over a period of time. Up until late last year, equipment funding for the boots and bar was provided by State-wide Equipment Program (SWEP). This meant we could afford the new boots for her growing little feet. Without these special boots, my little girl’s feet won’t improve.
Now, the state government has taken funding away from SWEP and moved it onto disastrous National Disability Insurance Scheme (NDIS) - but NDIS does not even classify talipes as a permanent disability, meaning they can reject our claims.
Parent of kids with talipes are going to be stuck between two worlds, and I’m scared for all of us. We’re going to be forced to engage with the confusing world of the NDIS. Under SWEP, we knew our previous babies would be taken care of. By moving talipes supporting funding to the NDIS, we are in limbo and we can’t be sure our kids will get the support they need.
My little girl has already been through so much, I can’t stand by while her future ability to walk, run, dance, and play will be put in jeopardy because of some goverment cost-saving or efficiency decision.
That’s why I’m asking that the Victorian State Government restore talipes funding back to SWEP, or change the requirements so that NDIS will accept clubfoot as a disability and use the funding for what it is intended for.
If you’ve been a parent of a baby with clubfeet, or you yourself have grown up knowing how this condition can impact your life - please sign and share this petition. If you’re a parent who knows what it feels like to hear your precious baby cry in pain, you’d know you’d do anything to make it stop. Please, kids with talipes need our support.
Thank you for reading, and please sign and share this petition.
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