After Emily’s accident I had to focus on my unexpected role as an informal carer but what’s the motivation to persevere and why advocate?
- 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.
I have benefitted 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 arising issues. This thinking propels me to act if operative or social reform is necessary, but it isn’t easy as it is time consuming to effect change.
My drive made me reflect on the question… what motivates me to persistently introduce myself into settings that I could choose to avoid? Because I seek to be confident in my ability to care and understand the lifestyle choices and opportunities in-front of Emily and myself. I want to maximise Emily’s capabilities and support her independence by being as skilled as possible.
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.
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 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.
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 limited longevity in underfunding as families burn out. Underfunding undermines the differently-abled and their carers 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.
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!
Advocating for the differently-abled – Brave with a capital B
Our experience of the NDIS – Beware of the Bureaucracy
Read more about carers – Self care
Suddenly and Everyday Carer – coping strategies for an unexpected role
Link to CarersNSW
(1) Junker, M. (2017, April6), “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).