Family-carer advocacy: Rachel and Emily’s experience
Why advocate?
By Rachel James · Originally published 2 August 2017
Original article
After Emily’s accident I had to focus on my unexpected role as an informal carer. Being a registered nurse, I was familiar with many of the practical tasks but I soon realised that maybe the most important aspect of caring is facilitating social and emotional well-being as well as keen physical attention.
I was determined that I would empower my 22-year-old daughter with the confidence and skills to resume an independent life. While I attended to her acute rehabilitation regarding acquiring equipment, initiating physiotherapy, and managing house adaptations, I was also encouraging Emily to extend herself regarding further study, future work and initiating an active social calendar. I never let Emily think she was anything other than capable and hence would be ‘kicked from the nest’ into autonomy.
Having been nurtured through her acute trauma, Emily has returned to study (Masters of Social Work), is in a stable relationship, independently travels and self manages her National Disability Insurance Scheme plan. My motivational guidance has reduced in its intensity as Emily has grown in confidence, showing tremendous resilience following such a devastating spinal cord injury (SCI). Since Emily’s SCI, she and I have both had to address ignorance, discrimination, bias and stigma which we tackled directly. But what’s the motivation to persevere as an activist and why should we advocate?
I have benefited enormously from attending carer workshops, support groups and educational updates so I am keen to advocate for more resources, carers, the differently-abled and a serviceable National Disability Insurance Scheme (NDIS). I’m motivated to understand the system we are compelled to use and the issues that arise. I want to raise awareness provoking progress toward an unbiased, diverse, accessible society where Emily is fully resourced and enabled to live the independent life she chooses.
I’m pressing on because I interpret the word ‘caring’ holistically to incorporate enlightening society towards the tolerant inclusion of people with disabilities and their carers and it’s that ideology that keeps me going.
As a keyboard warrior I assert myself on social media because there are 2.8 million carers in Australia and I would like to contribute towards establishing a stronger more cohesive group. But first we need to define and identify who’s a carer.
Who are carers?
Carers are defined as people who provide unpaid personal care, support and assistance.
Carers include family members, friends, relatives, siblings or neighbours. Grandparents or foster carers of a child are also included as carers.
All of these people are defined as carers regardless of the amount of care, support and assistance they provide.
Many people who are carers do not identify themselves as such and therefore remain ‘hidden’.
Why do carers need to identify as carers?
It is a valuable role that merits recognition and support.
As a group we can action more together, but we need to be an identifiable group.
Evidence reveals that carers cope better when supported with resources. (1)
Carers need to be skilled-up for their informal role. (2, 3)
Peer group support helps carers as united by our need to manage.
Carers need to identify as carers so we establish a strong cohesive group:
To agitate for carer support and up-skilling for the role
To maximise differently-abled people’s potential and independence
For practical resources and NDIS funding.
[Clickability update, October 2026: The equipment and funding concerns below are historical. Current NDIA urgent-repair guidance provides a distinct process and criteria; do not assume every urgent repair must wait for an ordinary plan review.]
Why advocate?
More needs to be done especially within the NDIS/NDIA, i.e. repairs on equipment are capped at an unrealistic amount for high needs participants. Currently there is a minuscule financial buffer in Emily’s plan if any of her absolutely essential apparatus requires replacement. If needed she is obliged to apply for funding through another review cycle with the resulting wait time.
If Emily is unsupported it has a ripple effect on me as her carer. The knock-on with reduced NDIS funding is that families fill the gap whether physically or financially BUT there is limited longevity in under-funding as families burn out. Under-funding undermines the differently-abled and their carer’s worth, confidence and capabilities.
It is so disappointing that Emily hasn’t been given enough funding for her skill based goals, i.e. independent transfers achieved through physiotherapy. Emily is poised to join the workforce after her post graduate studies but is underfunded regarding her goal of increased independence. The National Disability Insurance Agency (NDIA) should think deeply on the physical, mental, social and economic challenges that people with a disability and their carers overcome everyday in addition to their NDIS plans, reviews and resulting paperwork.
Why do I tell you all this? I persevere and passionately advocate for the differently-abled and carers because Emily and I have normal everyday goals which include the regular work, rest and play – to use the globally inclusive and iconic Mars slogan! As do all carers.
Rachel James
Rachel is a nurse, carer and author of Suddenly an Everyday Carer who promotes health, resilience and advocates for the differently-abled and their caregivers. To share and connect with Rachel, you can follow her on Instagram, Facebook or Twitter. You can also read more of her blogs here.
Keep the person’s choices at the centre of advocacy
Ask what the participant wants changed and what help they want from you. Record the practical problem and its effect on daily life, then identify the relevant service or decision. Your own support needs also matter; discuss them without presenting the participant as responsible for the strain.
Carer Gateway explains support for carers. For a funding decision, check NDIA review information and the actual deadline. Advocacy can support the person’s voice without assuming family membership gives authority over every decision.
Decide the role you want your supporter to play
You might want help gathering information, communicating or checking the next step. Explain which decisions you want to make yourself and what can be shared. Receiving physical help does not remove your right to direct your life.
If essential equipment fails, use current urgent-repair information and explain the safety or wellbeing issue. Keep the focus on your actual situation rather than assuming the historical cap or process applies. Check representation requirements separately where someone acts for you.
Questions readers ask
Does every urgent equipment repair need an ordinary review first?
No. Current NDIA guidance describes an urgent-repair process and criteria. Official guidance
Should an adult participant’s choices remain central to family advocacy?
Yes. Discuss the assistance and role they want.
Find help to organise the support you need
Tell Clickability about your priorities and compare reviewed and rated support coordinators. Ask how they work with your choices and supporters.
