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.

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 James (right) and her daughter Emily.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.

References:

(1) Junker, M. (2017, April 6), “Dementia Caregivers Course coming to Scarborough”, (The Forecaster), Available: http://www.theforcaster.net/dementia-caregivers-course-coming-to-scarborough/ (Accessed: April, 10).

(2) Williams, A. (2017, April 18), “Riverside brings back caregiving seminar series”, (The Virginia Gazette), Available: http://www.vagazette.com/news/va-vg-riverside-caregivers-seminars-0408-20170412-story.html  (Accessed: April, 18).

(3) Pedersen, T. (2017, April 4), “Involving Caregivers in Discharge Can Keep Elderly from returning to Hospital”, (Psych Central News), Available:http://www.psychcentral.com/news.2017/04/04/involving-caregivers-in-discharge-can-keep-elderly-from-returning-to-hospital/118612.html (Accessed: 2017, April 10).

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