If you have lived experienced of the mental health system and want to gain access to – or are a participant in – the National Disability Insurance Scheme (NDIS), we’ve found a great resource for you!
Independent Mental Health Advocacy (IMHA) has released a toolkit designed to provide you with the information, skills and support to advocate for what you want under the NDIS – starting at pre-access.
The toolkit was co-designed by people with experience of using the mental health system and navigating the NDIS.
IMHA supports people across Victoria who are receiving – or are at risk of receiving – compulsory mental health treatment to make decisions and have as much say as possible about their assessment, treatment and recovery.
The organisation’s toolkit – which is accessible nationally – includes information and worksheets to help you know your rights and speak up for yourself, whether you’re applying for the NDIS or have already been accepted.
Click here to access the toolkit
With more than half a million people now participating in the National Disability Insurance Scheme (NDIS) – a figure that’s expected to double during the decade ahead – and 44 per cent of them funded for support coordination, burnout is fast becoming one of the most prevalent issues facing the intermediary community.
But what is burnout, what contributes to it, and what can be done to address it? Our editorial roundtable – a think tank that brings together support coordinators from across Australia to share insights, experiences, challenges and solutions with others in the disability community – has unpacked the issue for you.
Our panel members have explored the complexities of providing support in the disability sector and engaged in a raw and real discussion about the challenges they and their peers face, sharing a view from the inside out.
'Speak your truth' is a topic for every disability professional!
Speak your truth - panel members
Here’s the 10 questions we posed and the answers they gave. Click on each question to open up their answers and learn more about support coordinator burnout.
The pivotal role of support coordinators – and their impact on the lives of people with disability – can’t be underestimated. That’s why we’ve launched the editorial roundtable, a think tank that brings together support coordinators from across Australia to share insights, experiences, challenges and solutions with others in the disability community.
Whether you’re an intermediary, a disability advocate, a service provider, or a participant in the National Disability Insurance Scheme (NDIS), there’s something for everyone in this topic – Lessons from the trenches.
From tips, tricks and go-to tools to career hurdles, burnout, and learnings for clients and providers, our panel members for this discussion have put it all on the table.
Lessons from the trenches - panel members
Here’s their 15 lessons from the trenches, the questions we posed and the answers they gave. Click on each question to open up their answers – we hope you enjoy the learnings as much as we did!
Hundreds of support coordinators around Australia have been affected by a price freeze for the third year running.
Level 2 and Level 3 Support Coordination remained frozen in the recently updated National Disability Insurance Scheme (NDIS) Pricing Arrangements and Price Limits, and Disability Intermediaries Australia (DIA) says this, coupled with the rising cost of living and increased inflation, means there has effectively been a price cut.
DIA has also flagged for consideration increased costs associated with COVID-19, like the need for PPE and extended staff leave, as well as the effect of natural disasters – such as the nation’s recent floods – on support coordinators.
The peak body says it has heard from support coordinators who are anxious about the impacts the prize freeze will have on them and the participants who use their services.
“Our members have expressed frustration, fear, desperation and distress that this pricing decision will force them to exit the supports they provide, directly impacting participants, their employees and their own livelihoods,” DIA reports.
DIA says it has escalated the matter with Bill Shorten MP, Minister for the NDIS, as well as the National Disability Insurance Agency.
Click here for more information.
While it is recognised that family members of National Disability Insurance Scheme (NDIS) participants provide invaluable support to their loved ones, exactly how the National Disability Insurance Agency (NDIA) decides what is reasonable to expect from families can sometimes seem confusing.
Here are links to guidelines and other resources that I commonly refer to in my role as a support coordinator to help me to better understand how the NDIA views the role of families.
As well as the familiar purple NDIS website, the NDIA has a new web page in development - Our Guidelines: How we make decisions - where the Agency’s updated operational guidelines are released. In the section titled Reasonable and necessary supports the NDIA details what supports it considers to be reasonable for a participant’s family, friends and community to provide.
The NDIA guidelines say it is normal to expect parents to provide ‘substantial care and support to children’, and that it is ‘usual for parents to provide almost all the care and support that young children need’. For participants aged under 18 years, the Agency will consider:
This is a good opportunity to link to a resource prepared by the Independent Advisory Council (IAC) to the NDIS, a powerful body formed to represent the participants’ voice in the NDIS by providing independent advice directly to the NDIA board. Reasonable and Necessary Support across the Lifespan: An Ordinary Life for People With Disability – a 2014 paper released by the IAC - includes an appendix providing a useful table comparing what children with disability are doing at key life stages with what children without disability are doing. This information can be used to identify where a child’s disability related support needs are substantially greater than peers of the same age.
For participants over the age of 18, the NDIA guidelines consider:
Families supporting adult children should ensure that reports and recommendations submitted to the Agency detail current support arrangements, identify gaps that are filled by family members, highlight areas of caregiver strain, and assess risks posed to the wellbeing of the participant, as well as the sustainability of informal supports.
I’m regularly asked if the NDIA will pay family members to support their loved ones. The answer lies in the ‘Sustaining informal supports’ section of the Including Specific Types of Supports in Plans Operational Guideline.
The NDIA believes that funding a family member to provide support could be detrimental to family relationships and, as such, it will only consider funding family members to provide support in exceptional circumstances. These circumstances might include where there is a risk of harm or neglect, where there are religious or cultural reasons, or where consideration is given to strong personal views in relation to privacy or dignity.
One of the key roles of a support coordinator is to build a participant’s capacity and capability to navigate the NDIS. We can support participants and their families to:
Click here for a great resource to learn more about the role of a support coordinator.
Charmaine Fraser is Director of Aurora Coordination where she oversees a team of support coordinators and specialist support coordinators. She also facilitates support coordination training for Disability Services Consulting. Charmaine has two adult children, the eldest is an NDIS participant.
Twelve years ago, while teaching a class of 30 young children - three of them with cognitive and physical disabilities - I became a statistic. I was a burned out teacher who left the profession within five years of training.
In my first year of teaching, I’d been encouraged to take my compassion to the classroom every day. Hindsight is a great thing, and what I now know is that what I actually took each day was my endless supply of empathy, and it was exhausting. This experience started me on a long road to recovery and discovery.
According to the World Health Organization (WHO), burnout is chronic workplace stress not managed effectively over time. But in 2010, there was more to it for me, and it took me nearly four years of research to realise I had really been suffering from empathy fatigue.
By 2014, when I became a carer to both my parents, I knew I needed to avoid this thing if I was to be a good carer and a well carer, as well as a great partner, friend and business owner.
Empathy fatigue differs from burnout and has a unique, negative effect. So, who is vulnerable to it? Well, anyone in roles in ongoing human service and, right now, anyone who chooses to watch world news!
Back in 2010, my symptoms included poor sleep, impaired judgment, feelings of isolation and - over time - a loss of self worth. Empathy fatigue can come on much more rapidly than burnout, but if recognised and managed well, there is a faster recovery, or even a chance to avoid it all together.
In 1995, Charles Figley – now the the Tulane University Paul Henry Kurzweg, MD Distinguished Chair in Disaster Mental Health - wrote: “Humans have both the gift and the curse of extreme empathy. We feel others' feelings, we experience their fears, eventually losing our optimism, humour, and hope. We aren’t sick, but we aren’t ourselves.”.
And psychiatrist Frank Ochberg, a pioneer in trauma science, wrote: “Over time our ability to feel and care for others becomes eroded through overuse of empathy.”. Recognise yourself or anyone else here?
I like to describe empathy fatigue as the emotional residue from exposure to those who are suffering, and from us witnessing their stress. Were you once motivated and engaged, productive and dedicated? Now you’re overworked and exhausted?
Perhaps you spend your day regulating the feelings of others and then, over time, have zero tolerance for colleagues, friends or family, and the little things like the missing loo roll become unresolvable!
Perhaps you’re too busy attuning to others and not yourself? This was me. I’d heard the term ‘you can’t pour from an empty cup’, so I started to refill my cup at the weekends or during my annual leave. But we need more - I needed more.
After years of research and trying things out, and in particular during the past couple of years where we’ve all suffered in some way ourselves, I realised I needed to understand and commit to filling my cup while I pour as well.
Empathy is all about resonance. If you resonate, your body goes with you. Think of it like a mirror. It’s the ability to share someone’s feelings or experiences. We can literally catch their emotions. We feel with them, and we feel their distress. We use that empathy to connect. And this is normal and human.
Unfortunately, our fight, flight or freeze response in our brain is activated by actual or perceived threats. So, through working with our clients or just watching the news, even though it’s not happening to us, our brain doesn’t know the difference and it goes into protection response and survival mode straight away. So, we need to cultivate our ability to recognise others' distress without it becoming our own experience. How? By moving through empathy and turning it into compassion, both for others and ourselves. And the magical part is, we can’t fatigue from compassion.
Compassion allows us to feel connected and good within ourselves, not drained. It’s a human quality anchored in the recognition of, and desire to relieve, hardship. This is about feeling for others, not with them. See the subtle yet powerful difference? This state is much more energising and positive. It allows us to still be with the person without feeling overwhelmed, so it’s more sustainable too. If you can care for yourself, this increases your capacity to safely support others, so it’s a win/win!
To connect with peers and discuss empathy fatigue or any other topic of interest to disability service providers, why not jump on to Kinora, an online community created by My Plan Manager.
Take five deep breaths: lengthening your out breath regulates your fight, flight or freeze response and switches on your relaxation response.
Anchors: feel your feet on the floor or turn your head slowly to the left and then the right and spot a few colours or shapes (this tells your brain it is safe), or find three things you can see, two things you can feel, and one thing you can hear.
Kindness: give yourself some kind words (yes, yourself), and think about what you might say to a friend in your situation (e.g., ‘this is hard right now’ or ‘this is painful for you’). At the same time, hold your own hand/shoulder/heart tenderly and kindly.
Endorphins: these are our natural reward system and our painkiller. You can increase your endorphins by exercising, spending time with friends, receiving a massage, engaging in meditation, using aromatherapy and, if you have some at hand, eating dark chocolate.
Annie Harvey is an author, TEDx and keynote speaker, and wellbeing educator. She is also a laughter yoga trainer. You can find her book here.
Supported decision making is when one person (a supporter) gives another person (a decision maker) the tools and support they need to participate in decision making about their own life. It isn’t the same as having a person make decisions on behalf of another person.
Supported decision making can help the decision maker to build their skills in decision making and develop the confidence to decide more for themselves in the future.
A person who might need support with making decisions is someone whose ability to make independent decisions is affected. Their ability to make decisions could be affected by:
Sometimes people with disability haven’t had the chance to make their own decisions or to gain experience in decision making. Supported decision making is a way of providing a person with disability the opportunity to learn more about decision making and to exercise choice and control in their lives.
Anyone can be a support person if they have been chosen by the decision maker. A support person could be a trusted family member, friend, service provider or advocate.
A decision maker can have one or more supporters - and sometimes, a team of supporters - to assist them with decision making.
A good supporter, or team of supporters, will have respect for the decision maker, value that person’s independence and dignity, and know that person’s goals, values and preferences.
Supported decision making begins with the decision maker, their chosen supporter/s and a decision. The supporter/s will support the decision maker to:
There are many supported decision making resources available for decision makers and supporters. Here are some free, helpful ones we have found:
