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Finding freedom: How Alex and his support coordinator grew his NDIS plan to $1.5 million (and discovered his independence along the way)

Scrabble tiles spell out 'live your life.'

Support coordinators play a key role in the delivery of the National Disability Insurance Scheme (NDIS), supporting participants to implement their plans and exercise choice and control over the supports and services they choose.

Unlike local area coordination, support coordination is funded through individual participants’ NDIS plans, and not every participant has the relevant funding included. Typically, participants with more complex NDIS plans will have access to the service.

When Emma Lloyd started working with Alex* – her first client – he had a $20,000 NDIS plan. He and his family couldn’t lead a functional life, and they were living in very challenging circumstances, without the right services and supports to assist Alex with daily life.

Today, Alex has access to 3:1 Supported Independent Living (SIL) supports and a wide range of allied health and psychological supports. He has also been approved for Specialist Disability Accommodation (SDA), which has allowed his family to step away from their roles as his carers, and back into family life as Alex’s parents and siblings.

We spoke with Emma, the founder and Managing Director of One Tribe Australia, about how she grew Alex’s initial plan to $1.5 million. Read the story in Emma’s own words here:

I first met Alex when I was a support worker, and he had a $30,000 NDIS plan that was then dropped to $20,000. I linked him up to a support coordinator, who was able to get his budget up a little, but it wasn’t enough. A short time later, I started working as a support coordinator and Alex was my first client.

To get him to the level that he is at today I had to work closely with Alex and his family and assemble a team of allied health professionals that could provide the services he needed. I supported his family when they decided to push for help from their local Member of Parliament, and I had to get very comprehensive evidence from his providers to clearly show the NDIS why Alex needed more funding.

Next, I engaged with the Exceptional Needs Unit of South Australia’s Department of Human Services, which helps to support individuals who have multiple, complex needs and risk factors, as well as their families. I also connected with mainstream specialists and forensic psychology services to demonstrate the urgent need for increased funding.

To further support Alex’s case, I used the NDIS’ Exceptionally Complex Needs Program to make sure there was a really strong clinical oversight of the work I was undertaking, because it was so complex. This gave me access to knowledge and advice whenever I needed help or a second opinion from subject matter experts skilled in managing crisis situations.

I lodged several requests for S100s (Reviews of a Reviewable Decision) – I had to request additional funding multiple times to achieve the desired outcome.

I gathered all the evidence and data that Alex needed to demonstrate his needs and establish a case for increased funding – assessments, more support letters and better summaries from allied health providers. Then, together with Alex and his family, we lodged a change of circumstance to get his plan adjusted.

The large multidisciplinary team I put together required a huge amount of organisation and coordination to make sure everyone was on the same page and working towards the same goal. We had a few knockbacks, and we had to be quite determined and keep pushing through.

At the end of it, we were able to secure $1.5 million of funding, which meant Alex could move out of his family home. 

Today, Alex’s NDIS supports mean he and his family have a much better relationship than they did when they were underfunded and all living together. Helping them to reach that point was critical and it meant Alex could benefit from a stable support network that included informal supports. It also ensured positive family relationships were restored and maintained.

The biggest takeaway from this win was the importance of being able to paint the full picture of a client’s disabilities and circumstances to the National Disability Insurance Agency (NDIA).

The reality is, you can provide all the evidence in the world, and the NDIA may still come back and say it is not going to fund a particular support. You have to be persistent and not just accept it, but say ‘Ok, what else do we need to do to get this over the line?’.

Disclaimer: In the interests of confidentiality, we’ve omitted specific details of the participant referred to in this article, and his family.

Emma’s business, One Tribe Australia, is a multidisciplinary provider operating across country and offering everything from support coordination to social work, disability support work to complex coaching. You can learn more about her team here.

Or, read ‘The top five questions participants in the National Disability Insurance Scheme (NDIS) ask, and why’, where Emma tells us what her clients most commonly ask her.

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My Plan Manager: NDIS Plan Management