Why Transitioning To NDIS Terrifies Me Just A Little

This post was sponsored by breakthru. Opinions expressed here are my own.

I’m in all the National Disability Insurance Scheme Facebook groups. Even though I keep promising myself I’ll stay away until I actually have a planning session in sight, I’m constantly checking in to find out how the ‘NDIS experience’ is going for those who have already received their plans.

And while their experiences range from ‘getting dragged to hell and back’ all the way to, ‘it was a gloriously easy process and it changed our lives’, there’s still a part of the process I intensely dread.The assessment. You see, I don’t particularly like being the one providing the information on which my son will be evaluated- the pressure of one small meeting affecting his life for the next 12 months.

 

He’s his own person. To us he’s just Parker, not a scribble in a box saying ‘4 year old with Down syndrome attending ECDP/Kindergarten, living in family home with sibling, delayed speech and feeding issues’. I’m not used to focusing in minute details on the areas he needs assistance with. We just manage them as a family, implement workarounds and therapies as we need them, then off we go again.

 

So when he is held up against milestones and benchmarks and ‘falls short’, it can be extremely confronting for many special needs parents- who see themselves as having a somewhat typical life, with a few extra features in the mix.

 

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In his wider circles and communities, my son for the most part experiences understanding and acceptance. While I understand he’ll have more challenges than the average kid, I genuinely see them as an extra facet to him, rather than a deficiency. Not positive, or negative. Just him, and unconditionally loved.

Now my son is 4, his developmental delays become ever more apparent. I know, as his mother, what he needs to thrive. I know the type of therapists he works best with and his learning style. I know what I’m capable of achieving for him, and I know what I need help with.

But I’m his mum, not a disability planner. I know it needs to happen, and I know how much my family will appreciate the extra help we receive with his day to day care needs. Still, giving up one facet of control over my son’s future, leaving part of it in the hands of a busy planner juggling high workloads and budget constraints to decide my son’s ‘needs’, is the part which terrifies me just a little.

So here’s some tips I’ve put together, as an entirely unqualified, non-therapist, regular old parent- who’s simply attended a LOT of planning meetings. I intend to use them to get through my planning meeting in one piece!

  1. Have your documentation together WELL before your planning meeting. Have appropriate diagnosis letters if required, and start having your therapists summarise their sessions in emails with set goals and what’s required to achieve them.
  2. See the big picture. I know it can be hard as a carer to think beyond day-to-day. But it’s time to really think about the future. What COULD life look like with the correct supports in place? If your child isn’t old enough to contribute to the conversation- how can you support them in getting an appropriate education, social life, interaction with the community and the home supports they need? Talk this through with your inner circle if you feel you need guidance.
  3. Don’t drink too much coffee before your planning meeting. I’m serious! I know it’s tempting. Just don’t. Having lots of stimulants in your system before ANY planning meeting can potentially contribute to anxiety, shakiness or general unease. Not worth it! You want to be thorough, make sure you’ve discussed everything you intended to, and you don’t want to be on edge through a very important discussion involving someone’s future.
  4. Remember- planners are here to help. It’s their one job. They’re working with you for the best outcome, so go in with an open mind and a thorough set of discussion points.
  5. Print and complete the NDIS Workbook, so you know what to expect. You can download it on the Every Australian Counts website.
  6. Take a support person if you need to, or consult with one first. This may be your partner, a social worker, a paid disability advocate or anyone else you want there to assist you with the process. You can take your conversation points in with you written down, to make sure everything that’s important to you is covered.
  7. Relax and breathe. It’s time to start thinking outside the box to see the potential and plan the life your child deserves. You’re doing a great job.

 How are you feeling about the NDIS?
breakthru are collating the information received by customers of the NDIS to find out how they are feeling, and what services they actually want and need. They can also offer free, no obligation assistance to any parents who feel confused or have questions about the NDIS.
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1 comment
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