NDIS Guru – Things I Wish I Knew Before Becoming Involved in the NDIS

People with disability need insights on the NDIS program

Message from Blue Badge: At Blue Badge Insurance we know that accessing and participating in the NDIS program comes with a host of challenges as well as successes. We know that any insights on the NDIS program are always welcome.

We get that it can be hard to know where to start… It’s overwhelming when you need to first apply, let alone understand the intricacies of your first plan and subsequent plan reviews. It’s a different language and there are all kinds of hoops to jump through, and continue jumping through!

That’s why we’ve engaged Caroline Daley of NDIS support coordination business planHELP to develop a series of articles and more that help you manage your NDIS journey.

Caroline is a true NDIS expert. Not only did she help develop some of the policies and train NDIA planners, she was the first person to self-manage an NDIS plan – for her daughter Siobhan. Now she is a support coordinator (aka NDIS guru) and she’s here to provide you with a ton of easily digestible information and tips.

My insights on the NDIS program

Hi, my name is Caroline Daley and I am the founder of planHELP. I have lived and breathed the NDIS for around seven years as carer of my daughter, Siobhan, an NDIS participant.

In this article I would like to share with you my insights on the NDIS program since we became involved. Hopefully, revealing the things I wish I’d known before Siobhan became a participant will help anyone looking into the program for the first time as well as seasoned pros.

I will be writing more articles about the NDIS for Blue Badge Insurance, so watch this space…

How we become involved with the NDIS

Before kids, I worked in the finance industry in change management and training. Once Siobhan was born, I became a proactive member of the carer community.

Siobhan received her first NDIS plan at the age of 13, as one of the initial participants in the NDIS NSW Hunter launch area*. She is now 20.

I was the first person in the country to “self-manage” an NDIS plan, and we have been heavily engaged with the program since then.

Following are my insights on the NDIS – things I wish I knew before we became involved.

Our community has to unite 

Today, almost all of Australia has moved from state disability funding to the NDIS. The last 20 years have been a wild ride for our community, especially in recent years.

So, it is time that we all – People with Disability and Carers – work together to ensure we get the supports promised by this “once-in-a-lifetime” change.

Supports so our whole community really can live our best lives.

How do we, as a united front, collaborate to reach our shared goal?

People come to this community through a variety of reasons and at different times in their lives. Some at birth, some through an incident, and some over time.

The nature and impact of disability also varies wildly. Support with intimate personal care needs to be delivered differently to social assistance.

The carer experience is different from the lived experience of disability.

There are so many moving parts that make up this shared experience; all our circumstances are unique.

We can fight each other because our experiences are different, or we can be kind, respect each other and unite so that we can focus that energy on maximising what the NDIS offers. On ensuring that the scheme and its implementation supports us all.

More NDIS funding doesn’t solve everything

Having an appropriately funded NDIS plan is crucial to providing you with the supports you need to be well cared for and achieve your personal goals. If your plan is underfunded, don’t just accept it, take action!

However, be aware that you can get to a point where more funding, more paid supports, does not make life any easier.

It can have the opposite impact. It can be hard to catch up with friends or family because staff is around. Or you may lose skills when your team does the task without any involvement from you.

Be aware of the right balance for your individual circumstances. Keep taking a step back from your situation to check in and assess.

Don’t be afraid to lodge a formal complaint and/or ask for a review

As a community, we are reluctant to complain. We have a culture of apology and being grateful for what we have. Even when we know that we have been disadvantaged.

Many people say to me that they won’t lodge a formal complaint or ask for a review because it won’t change anything. This is partly true. It may not change anything for you in that situation.

What a formal complaint and/or a review request does is that it starts to:

  • form a personal evidence base of things not working well
  • establish a national evidence base of where things are not working well
  • create change so that our whole community can benefit

Prepare thoroughly for your NDIS plan review meeting

If last year’s NDIS plan went well and nothing has changed, then your plan preparation for the next period should not take too long. What is important is to take the time to prepare before you get to your plan review meeting.

Use the insights on the NDIS program you’ve gained so far to make sure you know how to respond to likely questions and requests for information.

Need a change to your plan, or think there is likely to be a change and you will need additional funding? Then you will need to put in a little bit more time and provide further evidence.

For example, you or a key informal support such as a family member might need to:

  • get some medical treatment that might include time in hospital; or
  • be going on a business trip or holiday

Or, you might find you are now needing increased therapy visits, conversions for your vehicle, or more assistive technology supports. Perhaps there is a significant life change coming up, such as leaving school or moving out of home.

If so, you will need a more substantial evidence base, collected over an extended timeframe.

It’s a marathon, not a sprint

It is not always possible to get your supports in place and working nicely together in a short time. This could apply whether you are kicking off your first NDIS plan or adjusting to an updated plan.

Life happens, and things change regardless of how well-thought-out a plan is. For example, a key therapist leaves or your plan is not adequately funded and a review is taking forever to come through. Or perhaps a close friend who moved away has had a baby and you need support to visit.

Be gentle on yourself. You are living your best life, not just living a funded life.

Direct staff support needs to be a good fit  

Staff-matching needs to be taken more seriously in our sector. It is more than ‘here is a person with availability’ and more than a personality match.

It is all of those and more. As well as having staff who are professional in their approach, you need them to ‘leave their stuff at the door’. Staff who know when to take direction and when to lead.

Over time I have learnt that there is no such thing as a generic ‘good’ support worker. Someone who is an excellent match for my kid may be the worst support worker for you.

If someone isn’t a great fit for you, then keep looking around.

Get expert help

The NDIS is a new system. They have created a new language, and they need a different evidence base. Make sure you have a team on your side who can help you navigate this.

And if you have your own insights on the NDIS program then consider using them to guide someone else through the process.

*This launch area covered Newcastle, Lake Macquarie and Maitland, in New South Wales



About the writer

This article was written by Caroline Daley, a leading NDIS expert. She has held several roles assisting the NDIA, including writing the original NDIS documentation and fact sheets on self-management, becoming a qualified NDIS Assistive Technology mentor, and speaking at dozens of events. Caroline began planHELP upon realising thousands of Australians struggle to effectively create and action their NDIS plans.

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