Monthly Archives: June 2019

NDIS – Navigating the system

Everyone you know is talking about NDIS, the good and the bad but how in the world do you navigate it?

To say that NDIS can be frustrating at times is an understatement, but the hope that it offers is more often than not worth the battle.

A key role for a parent who has a child with special needs and/or a life threatening illness is that of their advocate. For many parents of children who are too young or nonverbal you are their voice and whilst the NDIS is very participant focused (your child being the participant) you are often best positioned to advocate for what they need.

  1. If you are not even on the radar of the NDIA (the authority who administer the NDIS), your first step is to call them to make an access request (1800 800 110). They must speak to the parent or guardian and if you need support with this call, perhaps chat to your school, early intervention service or your Family Support Practitioner. Usually an access request call leads to you being forwarded paperwork requesting you provide evidence of your child’s disability. Generally something that includes a formal diagnosis from a specialist, GP or a cognitive report completed for school will tick this box. They will then deem whether your child is eligible for NDIS. This process can take quite some time especially while there are still regions rolling out.
  1. If your child is deemed eligible the wait begins. Now is the time to start pre-planning. Think about your child’s goals (and your goals for your child). Contact the key people supporting your child and ask them for supporting evidence to back up what you will be requesting from NDIS. This will include letters from all key therapists – asking them to note equipment needs (quotes and prescriptions can also help) as well as the number of hours or sessions in 12 months that will assist your child to reach their goals. Your counsellor, Family Support Practitioner or other support services may be able to provide you a letter supporting your child’s need for community access and your need perhaps for support co-ordination. Also give some thoughts to other costs your family incurs due to your child’s needs. Keep in mind that NDIS will not cover medical costs, but rather disability costs. You also need to at this time consider whether you would like to be NDIA managed, plan managed or self-managed. Self-management is a big endeavour, but also a great way of maximising your flexibility, whilst plan managed can create some flexibility without quite as much responsibility.

There is then the inevitable wait for a call from your local NDIS area organisation to contact you and offer that planning date you have been waiting for, the planning meeting. You may like a person present with you for support at that meeting such as a key therapist, close friend or your Family Support Practitioner. The plan then gets submitted to NDIA for approval and an outcome is determined (usually 2-6 weeks). Remember there is a review of a decision process you can pursue should the plan outcomes not be satisfactory to meet your child’s needs.

Good Luck and may NDIS bring you the support you are needing.

Lillian’s Sibling Day reflection 

Hello my name is Lillian Preston, I am 8 years old and I had the best day ever at The Circus day with Very Special Kids.

I was very nervous because I had never been to Very Special Kids before, but when my Mum and I arrived I knew straight away I was going to have so much fun.

There were lots of boys and girls doing craft activities and I sat down straight away to do some colouring in.

Before my Mum left we got to light a special candle for my brother Alex and we put his blue teddy bear on a table with lots of other special items of other brothers and sisters that are also in heaven.

I had my face painted, ate lots of yummy food and I got a certificate for doing an acrobatic performance. Some of the other kids did tap dancing and other circus acts. It was sooooo much fun.

At the end of the day I was so spoiled as I was given a bunny Easter egg and I got to take home a huge piece of the circus cake we ate during the day.

Thank you Very Special Kids for making me feel so welcome.

 Love Lillian