Planning the unplannable – preparing for the NDIS with an episodic disability

Fluctuating disability

 

We all have good days and bad days, but for people with disabilities that are episodic in nature, it can be a daily struggle. Planning for the future is difficult when you have no idea how you will feel tomorrow, or even months from now.

People with episodic disabilities experience periods of wellness and periods of disability, with these unpredictable phases occurring without warning, sometimes lasting for days at a time. For these people, planning for the NDIS can seem even more challenging.

If you can relate, read on for tips on navigating this process, and ensure the NDIS has a positive impact for you. 

In this blog we are talking about disabilities that are episodic in nature. These are disabilities where the effect is not constant and periods of illness come and go. These periods can often vary in severity, length and predictability from one person to another. Many disabilities in this category are psychosocial. 

Things to communicate to your planner 

Because your NDIS Planner does not know you, it’s up to you to give them a clear snapshot of what your life is like.

  • It’s important that you are able to articulate the kinds of supports you need when the symptoms of your disability are at their worst. If you don’t, you might not have the enough funding when you really need it.

  • The NDIS is interested in hearing about how your support needs might change. If you have a disability that is episodic in nature, they suggest that you come to your meeting with an idea of the average amount of support you might need over a period of a month, 6 months or a year.

     

  • Before your meeting, you should ask yourself if you have anything in the future coming up that might affect the level of support you need. Is there a pattern to your support needs or is it completely unpredictable? Do you have any triggers? By thinking about these things before your meeting, it can help your planner help you. 

I'm worried I'll have a 'bad' day on the day of my planning meeting 

This is something we hear a lot. Many people tell us that making it to appointments can be a bit of a dice roll. A huge misconception is that you have no say in when or how your planning meeting will take place.  If you’re worried about your ability to attend, here are some things to consider:

  • Think about how you might like to conduct the meeting. Would if work better face to face or over the phone? Who would be the best support for you on the day?

  • Don’t be afraid to ask. If you prefer to have a face to face meeting and the planner is organising a phone meeting – speak up! Let them know what works best for you.

  • Be open and honest. If you are worried about your ability to attend, or need to make a change, let your planner know. They are there for you. You won’t ‘miss out’ by doing this; it may mean the process takes a little longer though. 

You can save for a rainy day

Many people with a disability that’s episodic in nature will ‘bank’ their hours. This means that in the times when you need very little support you can save your funds and use them at a later date. 

It’s important to note that your funds do not roll over from year to year.  

Remember...

It is always better to have funding available that you don’t use, than to not have any when you really need it. If you have any funds left over from the year, they go back to the NDIS. 

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