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20 days ago

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Advice about NDIS and life start

Hi lovely people, not sure if anyone will be able to help me but I want to put it out there in the hopes someone can! I recently had my baby sons NDIS plan renewed early to add some things for support. Technically I am still on maternity leave, my workplace can only hold my job until the end of this year to return minimum 3 days or they have to let me go, so I asked for more home carer hours (I currently have 3 hours a week in the current plan which is no help) so I could work at home or the office. My son has many seizures a day and is tube fed as well as required medications twice daily. NDIS/Lifestart have notified me that we were denied this support as they can’t see why he can’t go to mainstream daycare! My Lifestart consultant already asked me this prior to applying and I explained the many reasons why. We have 3 other children that attend primary school and my partner works very long hours so I am at absolute capacity. I need some sort of supports for him if I want to make any income (currently receiving $130 a fortnight carers payments, that’s it.) I’ve asked my Lifestart consultant to meet with me ASAP to discuss our next move so she’s meeting me on Monday, so I want to put it out there and see if anyone can give me any tips with how I go about this in the smartest way possible? Is this normal? I’m absolutely furious. I’m going to lose my job and possibly my sanity and I’m just not sure what else to do now 😣
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20 days ago

I don’t have a ton of advice to offer as we will be going through our first appeal in a few months with my son but I just wanted to say that I’m so sorry you are going through this. I’m sure you’ve done this already but have you submitted a parent impact statement to tell them how this is affecting your physical/mental/emotional/financial well being? Hopefully there are some others out there with some more sage advice - hang in there you’re not alone.

20 days ago

I am super new to the whole NDIS journey so any help is amazing thank you. I’ve got sooo many reports from neurologists and therapists but not a parent impact statement, no one has mentioned it and it’s a great idea! Thank you :)

20 days ago

Hey, Unfortunately I’m left shaking my head again 🤯 the responses they give are so often inappropriate. Have you approached a daycare and asked if they have the capacity to support your child? I’m sure they will say they don’t have the resources or it will take xx months to apply for appropriate funding and supports. Perhaps you can get them to write a statement explaining how long this will take and a statement from your employer that you are contractually required to return to work 3 days per week by the date required. I know it’s frustrating. Unfortunately it’s playing their game. Hopefully showing that you’ve explored options will show them what you are asking is “reasonable and necessary”. Hope that’s helpful hun

20 days ago

those are great ideas actually. I’m hoping a daycare would be open to that, I will call the daycare my daughter went to and see if any of the lovely teachers would help me out in that way. Not sure if my work would be open to that as they are not understanding of my circumstances at all. Thank you for the help it’s super appreciated!

20 days ago

Heart broken for you- so little options for those that need a high level of care- have heard this before that NDIS feel it is normal parent responsibility, but our situations are far from the norm- I hope you can find a small service that is willing to write a statement for you- even a family day care service may write a statement for you. I wonder if I can even write something- not like NDIS will question the fact I don’t live near you if I just write my qualifications… it’s a statement of fact, not implying I am going to provide care… inbox me your thoughts- happy to help if I can. Wishing you all the luck ♥️

20 days ago

I definetly understand the parent responsibility because honestly I don’t want a carer watching him I want to be with him everyday. I just need to work or have some sort of support in place especially now while he is young so he can continue to receive care as he gets older. Plus we are struggling financially and have been for a long time now. I need to do something. It’s so disappointing they feel he doesn’t need it. Thank you for the offer and I am happy to take you up on it if it’s needed. I appreciate it so much

20 days ago

Hi Lovely. So long story short my boy can't attend mainstream daycare as he is at extreme risk of being neglected there (sounds traumatic but that's how it is said in the paperwork). If you feel this is the case for your little one, you can apply for the additional childcare subsidy through centrelink and this can go towards having an in home carer. I use the company Leor and they are truly wonderful. My son's carer is like a family friend now, she cares for him very deeply and goes above and beyond. Because we qualify for the ACCS, 8 hours of in home care is only $75 a day. I'd give them a call and have a chat to them, they can talk you through the paperwork and how to word it properly/who to ask for evidence from to back up your application. If you are heading back to work soon I'd start the process asap as they may need to hire a specific person for you given you need 3 days a week (they charge $250 to recruit someone specifically for you but it's well worth it). If you have any other questions about this please feel free to message me xxx

20 days ago

it obviously night be less or more though if your CCS is a higher or lower percentage to start with. Leor can charge you via NDIS but it's $75 an hour for early intervention and they can only provide a maximum of 6 hours care (paid for via capacity building funds)

20 days ago

Advice about NDIS and life start
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