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

30 August 2017

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.

Contact us to find out how we can support you

Share:    



Other blogs and information you maybe interested in

Am I eligible for NDIS?

Am I eligible for the NDIS?

If you apply for NDIS support you will need to provide information about your disability. This will help determine if you are eligible for funding as well as what kinds of support you will need.

The NDIS Price Guide: what it is and why it’s important

An easy way to think of the NDIS price guide is it is a lot like a shopping catalogue of disability support services that are funded by the NDIS, complete with the maximum prices things can cost.

What disability looks like according to stock images

Stock library images are popular when telling stories, especially online. They are a nice, warm-fuzzy kinda way to share a visual idea about just about any topic you could dream up. Our Marketing team like to use actual photos of the people and the families that Endeavour Foundation support where we can, but let’s face it, we don’t have a team of paparazzi-style photographers to follow you all around, so sometimes we resort to library shots too.
Disability diagnosis

Disability diagnosis: why it’s so important to get it right

Getting a correct disability diagnosis can take a lot of time, money and paperwork, but it is one of the best things you can do to make the most of your NDIS plan. Your disability support providers can only provide supports that you have funding for. If a diagnosis isn’t quite right, this can sometimes mean that people miss out on the services they need.

3 ways the NDIS is changing for the better

We love the NDIS and have seen firsthand what a big and beautiful impact it has had on the lives of people with disability in Australia. Most participants are with us on this - according to the latest quarterly report over 90% of NDIS participants are satisfied with the NDIS.

Should I say “disabled” or “person with disability”? A guide to person first language

We often get people asking us whether to say ‘disabled person’ or ‘person with disability’. and it’s a tricky one to answer because there’s no hard and fast rule. It essentially comes down to what the people you are referring to prefer