From the beginning of time, we’ve depended upon communities to provide us with connection and deliver the wellbeing benefits that come from it.
You’ve probably experienced it yourself – a time when an off-the-cuff conversation or a simple piece of advice changed the course you were on, fixed a problem you had, or maybe even saved your life.
The good news is, today we can connect to more people than ever before and build communities in the online world that expand our horizons almost limitlessly.
From Facebook Groups – used by more than 1.8 billion people every month – to topic-specific chat rooms and the virtual worlds created through online gaming, communities of people who may never meet in real life are springing up worldwide. And that means an enormous array of insights, advice and support is on offer and available at the click of a button.
But, just as there are risks to opening the door to your home to anyone and everyone, so too are there challenges posed by accessing the virtual world.
Many online communities slowly turn into places to criticise and vent – and because of that, they’re often not inclusive. What that means is that although the virtual space offers more and more conversations for web users to tap into, there are only a limited number where people can truly expect to be heard and supported.
A free-to-access community that’s close-knit, solutions-focused, and there to lift its members up is great for everyone – but especially for vulnerable groups or those requiring a little extra support.
Connection to others became vital in the context of the COVID-19 pandemic, when people around the world were more isolated than ever before, and those with disability often found themselves alone for extended periods and unable to tap into their usual support networks.
Against that backdrop, My Plan Manager launched Kinora, an award-winning online community built for people with disability, their supporters and providers.
In Kinora, you can find like-minded people with similar interests, experiences and challenges – and connect with providers and subject matter experts with the experience to help you get the most out of life. You may not know them, but inside the moderated community you can swap advice and experiences and know you’re not alone.
The Kinora community creates possibilities, offers answers, and provides pathways to achieving better outcomes. It utilises the power of the collective to help remove roadblocks.
And best of all, it’s a positive space, because it was built for one purpose only – to give and receive support – and that purpose has been honoured and carried into the Kinora culture from day one.
Inside Kinora, you can tap into hundreds of conversations to pull out insights and information as you need it. If you’re having trouble in a particular area, you can search that topic in Kinora to see what people have said. Simply type your topic into the search bar and the relevant conversation threads will come up.
If you have a burning question about disability or the National Disability Insurance Scheme (NDIS), you can post it and ask the Kinora community to respond. In a community that currently includes more than 10,000 people, there’s a lot of expertise to access and an abundance of opportunities to remove a sticking point fast.
In a deep sea of providers, it can be difficult to find the right one for you. If you want a referral or a recommendation, simply start a new conversation and ask the community for help. Or take a look at the Kinora marketplace, where you can search hundreds of providers by category or keyword.
And don’t forget, joining the Kinora community won’t cost you a cent. It’s completely free!
Leverage the power of community today at www.kinora.com.au.
When you’re a person with disability, it’s more than likely you have a whole host of professionals in your life. Allied health staff, disability support workers, support coordinators… and plan managers, like us!
Together, there should be strong working relationships. But the reality is that pretty much every relationship – personal and professional – will have a bump or two in the road along the way.
While you’re working with professionals, we’re all human, everyone makes mistakes, and sometimes we can miss the mark. At times like these, you may need to speak up.
It’s rare to find someone who enjoys confrontation. But there are ways of being assertive and empowered that can make sure you get the care and support needed – and which you’re paying for. It might take a difficult conversation or two, but it can be done!
NOTE: Difficult conversations don’t relate to concerns of abuse or neglect by a provider or professional. If you’re concerned about the immediate safety of yourself or a loved one, dial 000 for assistance.
To report abuse, neglect or exploitation to the NDIS Quality and Safeguards Commission, phone 1800 035 544 or visit the NDIS Quality and Safeguards Commission website.
To report abuse or neglect of a child (with or without disability), contact the child abuse report line or child protection department in your state or territory.
More general information about safeguarding National Disability Insurance Scheme (NDIS) is available here.
Did you know that communication is the most common underlying cause of complaints in the healthcare system, according to the Australian Commission on Safety and Quality in Health Care?
That statistic doesn’t include the NDIS, but we can conclude that this cause of complaints shows up in the Scheme too. If you’re finding communication is a stressor, take heart in knowing it’s a common problem – and there are steps you can take to fix it.
Service agreements may seem complicated, but their purpose is simple: to set out in writing what you can expect from a provider, and what they can expect from you. It’s key to creating better outcomes and a positive experience, and it’s exactly why a service agreement is recommended.
Check your service agreement to understand what your provider has committed to, and what you can expect from them, before you enter into a difficult conversation. If a provider isn’t fulfilling their end of the agreement, this creates a quick case to fix it.
When you’re having a difficult conversation with a provider, it’s key to know your rights. A lot of people avoid confrontation because they don’t want to seem ‘difficult’, but that doesn’t serve them. Knowing your rights as a participant can change that mindset, and help you to create a more convincing case, advocate for yourself, ask better questions, and hold providers more accountable.
The NDIS Code of Conduct sets out expectations of how providers and workers will conduct themselves when delivering services and it’s a good place to start if you want to brush up on what your rights are. It’s created to protect the health, safety and wellbeing of people with disability by setting out acceptable, appropriate and ethical conduct for NDIS providers and workers.
The requirements in the NDIS Code of Conduct are fundamental to the rights of people with disability, as set out in the United Nations Convention on the Rights of Persons with Disabilities.
You may also want to refer to the NDIS Practice Standards, which outline the legally binding quality standards that registered providers must adhere to. Together with the NDIS Code of Conduct, the NDIS Practice Standards can help you know what you can expect from registered providers.
You may choose to have an independent disability advocate speak, act or write on your behalf. It’s their responsibility to assist you to exercise choice and control and to have your voice heard in discussions about matters that affect you. You may also choose to use an independent disability advocate when you make a complaint.
For more information about how to find an advocate, click here.
If you have a support coordinator, they can speak, write and act on your behalf too.
It’s hard to get the outcome you want without knowing what it is. That’s why it’s good to head into a conversation with clear objectives.
Write down the outcomes you want to achieve, then work backwards and write down the questions you want to ask. This can make the conversation more structured and strategic, and geared towards serving you better.
In stressful situations it can be hard relying on your memory. It could also be good to prepare notes that you can refer to and even share after the conversation.
You might want to make notes about:
Don’t underestimate the importance of writing things down as they happen or as soon as you remember. It can help you and your providers identify any patterns, and it could be the key to finding solutions or resolving matters faster.
Alternatively, you could use voice notes or ask a friend or family member to take notes for you.
People with disability can experience barriers to having their voices heard, which is where advocacy is vital. In this case, it’s recommended to contact the NDIS Quality and Safeguards Commission and let them know.
The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability recognised these barriers and made specific recommendations around enabling autonomy and access for Australians with a communication disability.
The Disability Royal Commission delivered its final report – its vision for an inclusive Australia – in late 2023. You can find the easy read version here.
Most professionals want to do a good job. And they want to be able to fix things if they’re going wrong. If possible, bring an open mindset to your conversation and tell everyone you want to work things out as a team.
You could say:
Did you know that up to 90 per cent of communication is conveyed by our tone of voice and body language?
If you’re having a stressful conversation, it’s very common for your tone of voice to convey how stressed you are. And that’s okay.
Sometimes even just acknowledging that our tone of voice sounds harsh can be a way of dispelling stress around the conversation.
If disability impacts your tone, behaviour or body language, it doesn't hurt to reiterate that, even for providers who've worked with you for a while.
For example, try saying something like: “I find it really stressful having conversations like this. I already don’t like making eye contact, so thank you for understanding that I definitely don’t want eye contact in this conversation. It’s not personal. It’s just me.”
Don’t be afraid to ask everyone in the conversation to slow down, repeat information, or even stop and take a break. It’s important you have time to collect your thoughts, understand what’s being said, and make your voice heard.
You could use break time to regroup, reassess your thoughts, go over any notes, or chat to your support person or loved one.
This could be a good way to keep the ball rolling and also make use of any notes you prepared or took during the meeting. You can reiterate your points, make requests, and play an active part in setting a plan for the future.
And remember, don’t delay a conversation. The earlier you can communicate an issue with your provider, the better – and also the earlier they can work to fix it.
Are you a National Disability Insurance Scheme (NDIS) participant? Have you ever been given a quote for a disability product or service and wondered if the pricing is higher, simply because you’re funded for the support you’re after? If you have, you’re not alone.
In the NDIS, inflated pricing is sometimes called ‘price differentiation’ or a ‘twin pricing regime’. It occurs when a provider charges a participant more than they’d charge a person who’s not in the Scheme.
An example of this is when a basic model aluminium shower chair has two price tags: $600 for NDIS participants and $150 for everyone else. The exact same shower chair – the only difference is, one is sold as an NDIS product.
Australia’s Competition and Consumer Act makes it illegal to engage in unfair pricing, but pursuing a case of this nature can be expensive and requires substantial evidence.
That’s why the NDIS Quality and Safeguards Commission has homed in on price differentiation, and announced it's making providers accountable under new rules, which apply to goods – things you can touch, feel and see.
The new pricing rules are:
For example, a provider must not sell a shower chair to an NDIS participant for $600 and sell the same chair to a member of the broader community for $150.
For example, a provider cannot advertise on its website a sale price for a shower chair if it will not offer the same price to an NDIS participant.
There are countless examples of products being advertised or sold at inflated prices to NDIS participants, purely because they have an NDIS plan and funding, and the new pricing rules crack down on that.
But a twin pricing regime isn’t exclusive to products and a question that’s repeatedly asked is ‘Will these rules apply to other supports, including services?’.
At this stage, while the Commission has not extended its rules beyond products, it has said further determinations may be made in the future, including about services such as allied health or in-home supports.
What’s important to understand about services is that some people with disability have more complex requirements than other service users, and therefore providers may attach a higher price to servicing people with higher needs.
That’s why it’s more difficult to enforce a framework around price differentiation for services funded by the NDIS, but although it may take some time, the Commission had certainly indicated it’s looking at it.
If you’re considering a product or service funded through your NDIS plan, be sure to shop around.
If it’s a product you’re after, compare prices from at least two providers, if not more – and make sure your decision factors price in, along with responsiveness, customer service, reputation and other factors.
This can be harder to do with services, because unlike comparing two identical products, there are a large number of variables in relation to services – such as the experience of the provider, their location, service offering, flexibility and reputation, all of which may impact a purchasing decision and warrant paying a higher price.
For more information about the NDIS price differentiation rules, click here.
The Australian Government has also released information about the pricing crackdown, which you can read here.
Have you ever felt curious about the inner workings of My Plan Manager?
You know we support Australians to manage the funding in their National Disability Insurance Scheme (NDIS) plans.
You know we offer up-to-date knowledge, insightful advice, and personalised support.
And you know we take our values seriously – we’re kind, genuine, innovative and inclusive!
But here’s 10 things you may not know about us that’ll give you a better insight into who we are and what we do!
With a background in special education and disability policy, our founder – Claire Witter-Smith – developed the idea of My Plan Manager around her kitchen table, while working at the National Disability Insurance Agency (NDIA).
In 2014, she created value for Australians with disability by conceptualising plan management and bringing the service to life.
Her mission then stands as ours today, to create an inclusive Australia where everyone has the opportunity to reach their full potential.
My Plan Manager was the first in the market to do what we do – support people with disability to get the most out of their NDIS plans.
Today, we’re the largest and most experienced provider in the country.
Every invoice My Plan Manager processes undergoes 32 automated checks to ensure it’s compliant with NDIA requirements, so we can deliver a speedy, accurate payment process for clients and providers.
During the past 12 months, with the support of our market-leading technology, we have:
Since 2020, My Plan Manager has invested approximately $15 million in technology and innovation, so we can remain agile and responsive to client needs and the disability sector’s constant change.
The average wait time for client and provider calls to be answered by My Plan Manager is less than 90 seconds.
My Plan Manager supports more than 35,000 NDIS participants across Australia.
There are more than 50,000 providers in My Plan Manager’s national network.
My Plan Manager launched the sector’s first client portal and mobile app – enabling clients to track their budgets in real time – and we have a portal for providers too.
My Plan Manager is steadily reducing carbon emissions through sustainable policies, purchasing practices, renewable energy, and carbon offsetting to support our environment and the communities in which we provide services.
My Plan Manager is fully accredited against the ISO 9001, ISO 27001 and the NDIS Practice Standards (verification). We were the first NDIS plan manager to achieve all three certifications.
Have you ever left an appointment with a therapist, specialist or service provider and wondered: ‘What did we just talk about?’? Or maybe you’ve thought of another excellent question on the way home – only it was too late to ask!
Well wonder no longer.
There’s a technique called ISBAR – a mnemonic (the name for a pattern of letters designed to jog the memory) – which is commonly used in healthcare settings to help doctors and nurses communicate with patients and caregivers. But as healthcare consumers – or clients of disability service providers – we can hack ISBAR and use it to get the most out of our provider appointments!
Let’s break it down.
Introduction/Identify
Situation
Background
Assessment
Recommendation
So, how do you use it?
Introduction/Identify – tell the professional you’re meeting with your name and date of birth (or tell them those details about the person you’re supporting).
Tip: If you’re a caregiver, this is also a great opportunity to introduce the professional to the person you’re supporting, to ensure communication about them is directed to them and they’re always included in the conversation – accidental ableism is still ableism, after all!
Situation – outline your disability and/or health history and diagnoses, why you’re at the appointment, what you want to get out of it, and anything else noteworthy or concerning that’s been happening.
Is this a routine appointment, one you’ve been waiting for, or is it urgent or important?
Try to be specific about your situation and when any issues started or changes were noticed, so the person you’re meeting with knows why the appointment matters to you. If it’s a routine appointment, think about the progress you’ve made since you last caught up, and any milestone events.
Background – this is the time to give a brief history and background, especially if you’re seeing someone new or discussing your needs for the first time.
Whether the appointment relates to disability, health or support needs, try to explain what life’s like from your perspective, what outcomes you’re after, and which strategies you’ve already put in place to address or manage the circumstances that have brought you to the appointment.
Do you have any other disabilities or health conditions that are relevant to what’s happening today? If you do, make sure to share them.
It’s good to be clear with the professional you’re meeting with and to tell them about the support you’re looking for and how they can assist you.
Assessment – it’s really important to talk about anything relevant that you’ve noticed.
Have you seen an improvement or decline in your ability in a particular area? Do you need more support than you did a year ago – or are you feeling more independent these days?
Has there been a deterioration or alteration in your health or disability? Are there new challenges, signs or symptoms you’ve experienced? Does anything improve the situation – or make it worse?
The more you share, the better the person you’re meeting with can support you, so try to be as open as possible.
Recommendation – as the expert in your own life and needs, do you have anything you’d like the professional to consider before a support is recommended or a treatment plan is developed?
What were you hoping to get out of the appointment? Is it a program of supports, a referral to a specialist, a letter of recommendation for assistive technology, or perhaps another appointment to test for a specific symptom? Whatever it is you’re hoping for – tell the professional you’re meeting with and discuss why it’s important to you.
Of course, as laypeople, we can’t just demand medical or allied health interventions and supports – but we can advocate for ourselves and explain why we believe something is important.
And voila – that’s ISBAR! You’re done.
But wait!
Do you have any other questions?
This is where a small notebook or the notes app in your phone or tablet can be handy.
It’s almost impossible to remember everything. It's even less likely your memory will be operating at full capacity if you’re in a stressful situation – and appointments often go hand-in-hand with other stressors like taxi bookings, traffic battles, finding a park, finding the right appointment location, waiting times in waiting rooms… the list goes on.
That’s why, if you know you’ve got an important appointment coming up, any time you think of a question or comment… write it down. Straight away. Don’t delay. Don’t rely on your memory. Grab your notebook or your phone or tablet and write it down.
You could even email it to yourself and/or the person going to the appointment with you, so everyone has a copy (just be sure to search your emails and have all your questions in one place before you go). You can use your questions to help populate your ISBAR or just save them to the end.
Now please, go forth to your next appointment and be empowered!
The National Disability Insurance Agency (NDIA) has been working on improving the way it delivers the National Disability Insurance Scheme (NDIS). It’s spent time talking to participants, staff, NDIS partners, providers, and the disability community, and it’s come up with PACE.
In roughly three minutes’ time – after reading this article – you’ll be able to confidently say you’re across the basics of PACE.
Precious time is ticking, so let’s go!
Sometimes, to understand what something is, it’s helpful to know what it isn’t.
PACE isn’t a new NDIS program, form, or rate of movement (at least in this instance).
The introduction of PACE isn’t going to change:
Now we’ve established what PACE isn’t, and what it isn’t going to change, let’s examine what it is.
PACE – which stands for Participant/Provider Alternative Cloud Environment – is the NDIA’s new customer relationship management system (CRM). Most big organisations use a CRM to record, analyse and store customer data, and to communicate with their customers.
PACE is:
What exactly does that mean for you? The answer to that is as unique as you are – and it depends on your role in the Scheme – but here are three key takeaways:
1. Changes to support types and categories
In PACE, Core Supports, Capital Supports, and Capacity Building Supports will be joined by a new support type – Recurring.
Six new support categories will also be added, and some existing support category names will be changed. We cover that here.
2. New ‘my NDIS’ portals for participants and providers
There are new ‘my NDIS’ participant and provider portals, which have been developed to work in with PACE.
For participants, ‘my NDIS’ is more accessible and user friendly. Participants can register for the portal in myGov once their new NDIS plan is approved in PACE – until then, they need to keep using the existing ‘myplace’ portal.
For providers, the new ‘my NDIS’ provider portal is different to the ‘myplace’ provider portal. Providers will only need to use the ‘my NDIS’ provider portal if they’re working with a participant who has an NDIS plan in PACE.
Support coordinators and psychosocial recovery coaches who aren’t registered with the NDIS Quality and Safeguards Commission will need to create a Provider Digital Access (PRODA) account and register their details with the Agency to gain access to the ‘my NDIS’ provider portal.
Before providers can see participant information in the ‘my NDIS’ provider portal, participants will be asked for their consent.
3. No more service bookings
Service bookings are used to set aside funding for an NDIS registered provider to pay for a support or service they’ll deliver.
For participants who’ve transitioned to PACE, there will no longer be a requirement to create service bookings, because the NDIA will know which providers participants have chosen to work with (participant-endorsed providers).
Providers linked with existing service bookings will automatically become participant-endorsed providers once PACE is rolled out.
We still recommend putting in place service agreements for all supports.
To find out more about how you’ll be impacted by the PACE rollout, browse our PACE Frequently Asked Questions (FAQs). We’ll continue to update these as we learn more from the NDIA.
Importantly – if you’re a participant – you don’t need to do anything about PACE. Your information will be rolled onto the system after you have a plan reassessment, a change of circumstances, or once your plan expires.
If you’re a provider or an intermediary, the NDIA encourages you to attend a PACE information session to learn exactly how your role functions within the new system.
National Disability Services (NDS), Australia’s peak body for disability services, has extra detail about the rollout of PACE. Access the details here if details are your thing.
If you have any questions about PACE, we’re here to help. You can call us on 1800 861 272 from 8am-6pm (SA time), Monday to Friday, or email us at [email protected]. You can also read our PACE FAQs.
Ben Waechter and his wife Suzi aren’t afraid of a challenge. After their youngest son, Harry, was diagnosed with cerebral palsy as a toddler, the duo dedicated themselves to finding solutions that would support Harry to live his best life.
When they couldn't find a children's disability expo, they started their own.
When they couldn't find a suitable group exercise activity, they started their own.
And when they couldn't find accessible toilets at events – you guessed it – they made their own!
Plus, they helped others along the way by starting their own support coordination business as well.
Ben tells us all about their business ventures and his hopes for the future of the disability sector.
Harry was born in 2013 at 24 weeks and he spent 114 days in hospital. During that period, we started noticing he was missing milestone markers, and later on we got a diagnosis of cerebral palsy. They suspected it for a long time, and then he was diagnosed pretty early on, at about two or maybe three years old.
Harry’s birth and his time in hospital changed everything for us. I’m a bit of a fixer, so going through that, and not being able to fix it for Harry and our family, was hard.
But we’d do research daily – I’d be on one computer, Suzi on another – trying to find out if there were cures or treatments, basically: ‘How do we make the best life for Harry?’.
Everything was in South America or Italy or the United Kingdom, and we got giddy going to therapists in Adelaide who would then say: ‘We don’t deal with physical disabilities’ or ‘We can’t do the program’.
Then we went to our first disability expo, but it was really aimed at adults and seniors. I think they had 10 providers for children, and we knew seven of those, so we went to the other three. We looked for a children’s expo and we couldn’t find one… so we started our own.
It came from a very selfish place really, just wanting to fix things for Harry, but it also helps other people, so it’s very rewarding!
That’s basically a natural flow from the expo, because afterwards, we’d get people calling and saying: ‘I saw this person at the expo, how can I get in touch with them?’ or ‘Where can I find this?’ or ‘Do you know of anyone else?’.
So, we were doing the support coordination role for free and then we realised we could set up the business and it would actually be an income for the KYD-X charity as well – part of the invoices and income we generate goes towards the charity. Once again, it’s all about problem solving!
We don’t think any one person knows everything about the NDIS or disability. We like to work as a team, we have very knowledgeable coordinators – all with lived experience – and we never act as a gatekeeper. We very rarely say no to our clients, what we do is sit down and educate our clients and say: ‘If this is the decision you want, here are the pros and here are the cons’ and we let them make a properly informed decision.
I see our role as trying to do ourselves out of a job. I want our clients to be their own best advocates and make decisions and have the skills to do it for themselves.
That’s because of Harry, again. Because he has a physical disability, it’s difficult to find group activities he can be involved in, especially around exercise. A lot of services are geared towards the autism community because it’s such a big one – 40 to 45 per cent of participants in the NDIS have an autism diagnosis, while cerebral palsy and physical disability is around 10 per cent.
We couldn’t find any programs for Harry to exercise with his peers, it was always one-on-one therapy with an adult, and he didn’t get that football or netball team experience.
Frame running is one way of him exercising and getting out of his wheelchair, which is really beneficial. For many wheelchair users, if they sit in their wheelchair too long, their body systems slow down, they can get skin rashes, pressure sores etc. There’s such a benefit to being upright.
Harry absolutely loves it mentally, too. On Wednesday morning he wakes up and cycles his legs like he’s running, and when we pick him up from school, he’s doing it again. It’s now gotten to the point that if one of the other kids sits down during the session he’s saying: ‘No, come on!’, and offering his arm and his encouragement. He wants everyone to be included.
Now we have Frame Running SA as part of KYD-X, in collaboration with Achieving Abilities. We’re in our second term and we’re raising money to purchase frames to have more kids come out and join.
When we go out with Harry and we go to an accessible toilet, in most cases there’s a toilet in the corner, a tiled floor and a basin. We either have to wrestle him in his chair or we put him on the floor of a public toilet. It can be quite socially isolating.
We tend to base our attendance of events on: ‘Do we even bother going?’, or if we do go, we need to do it on a time schedule – it’s two hours at the event and then we have to go. It often means our eldest son, Austin, misses out, Harry misses out, we all miss out.
So, Off The Floor stemmed from the idea that we could retrofit accessible toilets with the extra equipment. But then we thought all that money would be spent in just one spot, so we came up with the idea to make accessible bathrooms that are portable too!
We came up with a design to put the accessible bathroom in an enclosed eight metre trailer that’s three metres high and two and a half metres wide. It has all the facilities of an adult change facility – toilet, adult-size change table, ceiling hoist – and the trailer is on hydraulics that can lower it down to the ground. This way, we can sit the trailer on its belly and the tailgate becomes the ramp, allowing easy access.
We have the prototype that’s taken me five years to design, raise funds for, and manufacture. Our goal is to have a fleet of these – I want them all over Australia and then all over the world! I want it to become the norm, rather than the exception.
The biggest change I'm seeing is people becoming more aware of the fact they have a choice. They don’t have to accept: ‘That’s all I can get’. If they don’t like something they can speak up and change it.
That choice has been really awesome, and at the same time, the NDIS is a beast that is untamed and it’s getting out of hand. It’s a little bit like the wild west out there at the moment and it’s really disheartening to see.
I really hope that we can reign in the cost of the NDIS – there are a lot of people out there working in the sector who do not have the best interest of the participants at heart. The Scheme is run by ethics and not rules and regulations, and there can be an extreme difference in ethical practice from provider to provider.
I just hope that people like Harry can have a safe and successful future.
All the projects and all the events we've created come back to what issues we’ve had with Harry and accessing the community. When we come across the next issue, we’ll try and fix that also.
We continue to work with councils and events that want to be more inclusive and accessible, because everyone wants people not only to attend their events but also to stay. The more people stay at an event, the more they spend – we found that out for ourselves because of a Changing Places accessible toilet that allowed us to spend five hours at an event instead of two… we also spent a whole lot more money!
So, if you’re running an event and you want everyone to come and stay, you need to provide the facilities.
Harry is a daredevil and loves going fast – and trying to fulfil that need for speed is what we are currently working on. Go-karts, motorbikes and fast cars are on the cards, we want to find a way for him to have the same experiences that we had growing up.
It would be cool to have South Australia be the adventure capital for people with a disability.
If you’re applying to join the National Disability Insurance Scheme (NDIS), going through a plan review or reassessment, or challenging a National Disability Insurance Agency (NDIA) decision, it may feel like your voice is lost in swathes of letters and assessments prepared by medical and allied health professionals.
While gathering evidence to support your case, you may wish you could just tell the NDIA what it’s like to live a day in your life. That way, the Agency would understand what it’s like to be you, and recognise the supports you need – right?
Well, there is a way you can share your story – through a statement of lived experience (if you’re a participant) or a carer statement (if you’re a carer of someone with disability).
What you have to say is powerful, and by voicing it, you can strengthen your position and have an impact on the NDIS funding allocated to you or the person you care for.
According to Zena Dyson, a Specialist Support Coordinator at Esteem Care Services, a lived experience statement is a letter from a person to the NDIA explaining what the effects of their disability are and how it impacts their daily life.
“It presents a person’s perspective of their personal situation and evidence of what direct supports they require to live a more supported daily life," says Zena.
“This is helpful when applying for the NDIS, at plan reviews or reassessments, or for a review of an NDIA decision. It provides the NDIA with a step-by-step guide to what you can or can’t do daily due to disability.”
The power of a statement of lived experience shouldn’t be underestimated.
“A statement of lived experience provides evidence for what NDIS supports (and amount of funding) are needed,” says Zena.
“Together with evidence, such as allied health reports and medical diagnosis evidence, it can be crucial evidence to determine the funding received from the NDIA.”
Kristie Findlater – Founder of the Western Sydney Support Coordinators Network, who recently swapped a career in support coordination to work at My Plan Manager – agrees. She says it’s critical to provide a lived experience statement to the NDIA if a current plan is underfunded, or if you’re going into crisis.
“You could be in a position where currently you’re okay, but in a couple of months you’re going into hospital and you have a child who’ll need extra care, which requires more funding,” says Kristie.
“I was working with a participant whose Mum lives with PTSD, severe depression, and a chronic medical condition. She was also caring for her daughter as a sole parent. The NDIA didn’t consider how much support was really needed and, as a result, her plan was underfunded.
“She provided a lived experience statement in a plan reassessment, and the evidence to go with it, and she secured more funding in her daughter’s plan.”
Kristie says a lived experience statement is also important evidence when too little funding is received in a plan.
“A lived experience statement shows you’ve disclosed critical information about your life to the NDIA and have provided the evidence to support it. If you get a plan back with too little funding, you can ask for a reassessment based on the fact that the NDIA hasn’t considered everything provided in your lived experience statement.”
There’s no right or wrong way to write a statement of lived experience. That’s because you and your experiences are unique, so how you write about them will be too.
Whether you’re comfortable writing a formal letter, or prefer communicating through bullet points, here are some basics to consider when crafting your statement of lived experience:
If you feel stuck, you can seek support from a family member, a friend, or your support coordinator (if you have one). You can also take inspiration from these free templates:
Remember, no one knows your experience and the support you need like you do – let your voice shine.
A carer statement is a letter written by a person who cares for an individual with disability. It gives the carer’s perspective of the impact of disability on the individual and those around them.
When writing a carer statement, Kristie recommends being honest.
“A lot of carers try to paint a positive picture to the NDIA, because they’re doing it in front of a person they care for in a planning meeting or in a carer statement that a participant could read,” says Kristie. “But from experience, ‘positive’ doesn’t always paint the full extent of disability and can result in less funding.”
“I had to write carer statements for both my children and culled a lot of information, because I was scared they’d eventually read them. It comes down to what you’re comfortable including and it can be difficult.”
As with a statement of lived experience, there’s no right or wrong way to craft a carer statement. Here are some basics to consider including:
If you’re a carer, you’re likely to be low on free time – so here are some carer statement templates you can adapt to get you started:
Tip #1 If you have physical or mental health issues or conditions that mean you’re not coping, be sure to include them in your statement. Talk about your life, living situation, ability to maintain a home and do day-to-day tasks from the minute you wake up, and how the challenges you experience stop you from getting a job or caring for yourself, or how they’re impacting your mental health.
Tip #2 If you’re a carer, talk about your support networks and your ability to maintain a job if your carer role impacts work. The NDIA assumes every participant has a network to support them – but if that’s not the case, make it clear.
Tip #3 If you’re going into a plan review, write the statement a week or two before the review, because the NDIA wants your statement to be current.
Tip #4 Provide as much evidence as possible to go with your statement – like allied health reports and medical diagnosis evidence. Without this evidence, you won’t have a case.
Tip #5 Break it up. Write your statement in a Word document and add to it over time to make it more manageable and to be sure you’ve covered everything.
Whether you’re a person with disability, or a carer, remember your voice has impact. Only one person can truly tell your story – and that’s you!
We often hear from stressed and overwhelmed members of the disability community who are unsure how to access the National Disability Insurance Scheme (NDIS) and exhausted at the prospect of gathering the information and evidence they need to support their application for funding.
If you want a trusted adviser by your side while you navigate your path to NDIS entry, we’ve got you.
That’s why we chatted with Elizabeth Hickey of AFA Support Coordination about the top three roadblocks to joining the Scheme and how to overcome them. Read what Elizabeth has to say below.
To access the NDIS, you’ll need to apply. This can be done verbally or by completing and submitting an access request form.
All NDIS applications require a number of standard documents or information. If you’re already accessing support through Centrelink, you can consent to the NDIA communicating with them and they can confirm details like your address, date of birth, and citizenship status. If you’re not accessing support, or if you don’t consent to the NDIA communicating with Centrelink, you’ll need to provide proof of those things.
You’ll then need to prove that you have a permanent disability – how much information you need to provide will depend on whether your disability is in the NDIS’ List A: Conditions that are likely to meet the disability requirements or List B – Conditions that are likely to result in a permanent impairment, or if it relates to something not listed.
List A outlines conditions the NDIS considers as permanent disabilities, and which are highly likely to be automatically accepted. List B outlines conditions that are permanent, but you need to provide proof that the condition is likely to result in a permanent impairment and impacts on your daily functional ability. The third category is a condition not listed.
For List A conditions, you’ll need to provide a diagnosis and a letter from your treating team outlining the impact. For List B and unlisted conditions, you’ll need the diagnoses and supporting documents from a range of treating professionals and other supports, providing proof of the impact on your daily life, along with confirmation of permanent impairment. For unlisted conditions, you’ll need extensive evidence of the permanent impairment and will likely need to include a functional capacity assessment (find out more about functional capacity assessments here).
It's important that at least one treating professional (like your specialist or regular doctor) completes section 2 of the NDIS application for the treating professional, or provides a letter that covers permanency, treatment (both past and present) to confirm the condition is fully treated and is now at a maintenance phase, and the impact on functional impairment – focusing on mobility, communication, social interaction, learning, self care and self management.
There are a range of places to get the documents needed for an NDIS application. The first place to start is with your regular GP. Typically, a GP will be the best person to assist with completing your access request form or main letter, as they’re going to be the person with a full overview of your condition.
If your condition is primarily treated by another doctor or professional (like a psychologist or psychiatrist) then they may be a good place to start.
For other supporting documents, approaching other treating professionals like physiotherapists, occupational therapists, and speech therapists is important if you already have a relationship. While not required, you can also request evidence of impact from mainstream services, which can be useful – this may be a school, workplace, or other community service where you have a good relationship with someone who can write a letter explaining the impact of your condition and the support you need to participate in that environment.
The final piece of evidence that can be helpful is an impact statement or a ‘Day in the Life of {add your name here}’. This outlines the impact (within the home) of a condition on both the person and those who support that person. It doesn’t need to be in any specific format – it can be a letter, a timetable that shows what a day looks like and the support provided, or closer to a written report. This doesn’t need to be included but it can help to show impact where you don’t have a lot of other evidence.
Functional capacity assessments are considered by the NDIS as the gold standard for identifying the impact of a condition on daily life. Most of the time a functional capacity assessment isn’t needed for an application – however, where there’s a question on the impact to daily life, they can be useful to assist (this may be for a ‘List B’ condition or for a condition not listed).
A functional capacity assessment is an assessment that allows your therapists to review how well you do your daily activities and what supports you need to be as independent as possible. Depending on your needs, the assessment may review the following areas: self care, daily living tasks, social interactions, emotional management, mobility, financial management and educational/work participation.
Usually, this will be done through conversations and completion of different tools (WHODAS and PEDICAT are examples of tools used). After the assessment, a report will be developed that outlines recommendations for the support a person may need to participate in daily life.
TIP: I’d typically recommend not getting a functional capacity assessment in the first instance for an application to the NDIS as they can cost a lot of money and may not be needed for access. If you don’t gain access to the NDIS initially, it may be worth getting a functional capacity assessment completed.
The top three roadblocks are:
1. The documentation and effort needed to apply
The task of collecting the documentation is daunting and can be confronting. The best way to overcome this is to start.
Find someone to assist you and make a list or find a list online of documents needed, start with the easiest and work your way through.
2. Proving permanency and impact
One of the most frequent knockbacks is around permanency and impact of the condition. Make sure professionals state in documents that the condition is permanent and outline impacts based on the areas of self care, daily living tasks, social interactions, emotional management, mobility, financial management and educational/work participation.
3. Doctors being unwilling to complete paperwork
Many doctors note they don’t know what to do for an NDIS application. To remove this roadblock, ask them to use the NDIS application form – if needed, you can print the professional section out for more than one doctor to use as the basis of their report.
Also, make sure to book a long appointment. If your doctor’s surgery has a nurse, you may also be able to get them to help with filling the form out.
The application process is daunting – and not everyone gets in. Your condition needs to have a substantial impact on your life. It may mean you aren’t eligible now but could be in the future if things deteriorate.
If you’re not successful, there are other supports, and the letter of rejection is an important document to assist moving forward. It can tell you why you weren’t successful – perhaps you hadn’t proven enough of an impact from disability, or perhaps the condition has been fully treated. If you feel this isn’t correct, you can request a review of the decision from the NDIA, and if that’s still unsuccessful, you can apply for a full review through the Administrative Appeals Tribunal.
Support for this can be accessed through one of the advocacy supports – however, please note this process can be hard and can take time.
The rejection letter is important to keep even if you don’t reapply straight away because it provides proof that you’re not eligible for the NDIS and, as such, that you’re eligible for other supports that people in the Scheme can’t access.
One of these supports is extra services within the health system – including occupational therapy and speech programs, ongoing psychology and mental health support, or access to equipment that typically isn’t available unless you’ve been rejected from the NDIS or your condition is purely medical-based. Other supports include extra services in education or housing.
You may also be able to access further supports through Carer Gateway.
If you have any questions, we’re here to help. You can call us on 1800 861 272 from 8am-6pm (SA time), Monday to Friday, or email us at [email protected].
