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Paulene’s life-changing support coordination experience

Today, Paulene sits comfortably in her new specialist disability accommodation (SDA) apartment overlooking the city. “I feel free, just so beautiful, I feel like I’m on top of the world…. I can make my own decisions now I’m my own person”.

This freedom is a strange feeling for Paulene.

Paulene’s a strong and fiercely independent person who, at the age of 44, began her journey as a person with Multiple Sclerosis (MS). Despite her young age, she lived in an aged care facility for 6 years. Here she felt trapped and disempowered, accepting the inadequate support coordination she had because she didn’t want to be a burden or make a fuss. She felt like she wasn’t getting what she needed through that support, but thought it was better than nothing.

Although Paulene had a support coordinator she was never asked whether she wanted to explore housing options outside the nursing home, or what she would like to do.

Once she realised it was possible to change her support coordinator, Paulene’s life changed.

She then began working with her current support coordinator who she loves dealing with and is “on the same page”. She says: “We just clicked. I found her very positive. She chatted with me about things I could do, like shopping and swimming.”

Her new support coordinator also told Paulene about other housing options – including her new permanent residence in SDA apartments in Melbourne’s CBD. Paulene now has newfound and well deserved control over her life.

Is this possible in your life?
Do you even have a support coordinator? 
Can you change your support coordinator? 
What makes a great support coordinator?

Paulene has had both positive and negative support coordination experiences. After changing to a new support coordinator, Paulene is now ecstatic and understands the important role her support coordinator plays in her life.

So, what are some other qualities Paulene loves about working with her new support coordinator? 

Valuing –  “…finally I felt like I was being heard somebody was actually listening to what I wanted.”

Gives options – Paulene wasn’t just given options but was also  “asked what I thought”. 

Proactive – “makes things happen”  and “got me the wheelchair straight away”. 

Caring – “She cares a lot and things are done correctly for my benefit.”

Efficient –  “She wasn’t going to let anyone else take me for a ride.” 

Reassuring – Although Paulene  was “rapt” at the prospect of moving, she was understandably anxious about the move. But the transition was so much easier with her support coordinator’s reassurance that despite the modern apartment, 24-hour support was available. ”She always encouraged me, and she always asked the question – Are you ok? Is this what you want? Always making sure I was ok with everything that was happening.”

Information providing & opinion seeking –She told me about housing options and asked what I thought…”

Empowers independence & choice –She talked to me about using tv on my own, making life easier, she showed an interest in my lifestyle and tried to better it and that’s what I loved.”

Many of us have support coordinators and know that their input in our lives is invaluable. But finding a good support coordinator can take time and effort. While we can feel quite trapped in our provider’s presence, good support can facilitate so many possibilities in our lives.

Paulene’s situation is proof of the huge empowerment, choice and flexibility that we can regain in our lives from working with, or simply choosing to change  support coordinators. She now feels like “a little kid in the candy store”. 

Every one of us is able to feel as “rapt” by their outcomes and develop great relationships with their support coordinator. 

So, if you do want to look into getting or changing your support coordinator, you could try these steps.

How to search for a great support coordinator: 

1. Peer Recommendations
Ask your friends and family (peers) for recommendations. 

2. Contact your Potential Support Coordinator
Call and interview them – know what your deal makers and deal breakers are!  Remember – they are working with you to achieve your goals!

3. UpSkill Directory (coming soon)
A directory of NDIS support coordinators and expert allied health professionals is currently being compiled and will be going live in early 2021. Here you will be able to search for support coordinators and allied health professionals who have the relevant skills and experience to assist you. Watch this space for exciting updates!

How to change your support coordinator: 

1. Consider how your NDIS plan is managed
If you are plan or self managed, you can choose to have a new support coordinator who is not registered with NDIS.

2. End your agreement with your old support coordinator
You can contact your old support coordinator by phone or email and tell them you no longer require their services. Before you do this, you will need to look at your service agreement with them to check if you need to give notice.

If you are agency managed you will need to ask your old support coordinator to cancel their service booking in the portal. Don’t feel awkward about changing support coordinators. It is important you have choice and control over your supports and have a good relationship with your support coordinator.

3. Establish a new service agreement 
It’s important that you and your new support coordinator understand what is involved in this new partnership. They will have a document called a ‘service agreement’ that will explain this. It is important that you understand roles and are clear about their fees for service.

4. Think about what’s important to you?
With your new support coordinator, talk through  the things that are important to you and what you want to achieve. Perhaps, consider what your life would look like? Your support coordinator can write down these things and then check if your NDIS plan really reflects the things that are important to you, and also whether your supports match up.

Other Resources:

The Growing Space: https://www.thegrowingspace.com.au/
A website for Families and People with Disability. It offers great resources designed for people with disability, as well as NDIS Support Coordination.

Peer Connect: https://www.peerconnect.org.au/
A great website where people get together as equals to provide support to each other because of similar experiences or circumstances in their life. 

VALID: https://www.valid.org.au/how-do-i-choose-support-coordinator/
How to Choose a Support Coordinator

Self Manager Hub: https://www.selfmanagerhub.org.au/
A free platform full of great resources to give you ideas and help to self manage your NDIS plan. 

Summer Foundation Resources
These resources are designed or were created with providers in mind. Sharing them with your support coordinator may be helpful!

PodcastReasonable and Necessary – podcast series/
Support coordinators talk about getting great outcomes for people with complex needs.

Videos about support coordination:
Support Coordination – Connecting to services in aged care
What is support coordination?

If you want more information about support coordination you can send an email to peersupport@summerfoundation.org.au

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