“Walk a mile in my shoes” – is the simple but powerful and emotional request many of our carers made to politicians in the run up to the March State Election. It is a statement that carries sadness and a certain degree of lost trust – even resignation – behind its challenge: ‘Asking you to walk in my shoes is my last resort to make you understand and hear my plea.’
Nearly a third of South Australian carers are providing more than 40 hours per week of care. For some carers, caring is a 24/7 commitment – even though 63.6% of carers reported that they also live with a disability, while also caring for one or more person(s) with a disability.
With massive sector changes due to the introduction and roll out of the National Disability Insurance Scheme (NDIS), carers and their families will require specific and targeted support and information to negotiate the new system. With the participants being the core focus of NDIS funding, clear support for carers in their own right is often excluded.
The Integrated Carer Support Service (ICSS) model (for info see: Australian Government Department of Social Sciences website), was created to recognise, support and sustain the work of carers. However, the emphasis within this model is on supporting carers specifically in relation to the effectiveness of their caring role rather than acknowledging carer contributions and providing support for carers in their own right.
While the NDIS is expected to bring support and peace of mind to many, not every person in need is eligible to become a participant. A high percentage of individuals with a disability and a substantial number of people with a mental health issue / illness will not be eligible for the NDIS. It can be difficult for a lay-person to pre-determine NDIS eligibility with confidence. Hence, 36% of carers told us last year that they are still unsure whether the person(s) receiving care were eligible for the NDIS, only 22% of carers are confident in supporting the person with a disability through the NDIS pre-planning process, and only 21% have confidence in managing an NDIS plan.
A further complicating issue relates to the shift of information and service access to digital (online) platforms. This is causing equity and access issues for many carers. Core services, including the NDIS, offer a website and phone services to aid carers to access practical information and resources to help them with their caring responsibilities. However, reliance on these digital and centralised call centre systems raises serious concerns regarding appropriate inclusion practices, appropriate information based on local knowledge and resource and capacity issues for carers.
We know that these issues are a concern for carers who provide care for someone with a disability, especially for:
• older carers,
• socially isolated carers,
• carers with a disability,
• carers from culturally or linguistically diverse communities,
• carers from Aboriginal and Torres Strait Islander communities,
• carers living outside of metropolitan areas, specifically those living in remote and rural areas,
• carers with limited or no reliable internet access,
• carers with limited or no digital literacy confidence and for
• carers who prefer or require face to face support.
At this time of change and nebulous clarity, the 45% of carers in South Australia who have to manage on less than $40,000 per year household income face additional disadvantage. Maintaining online access requires purchasing and maintaining digital equipment, Internet access, software updates and digital literacy training that has been estimated to require approximately $50 per week. This now a core-necessity expense for carers of people with disability, in particular during the rollout of the NDIS and during future plan management.
Carers SA urges carers to select candidates in the South Australian State Election 2018, who support carers and the person(s) with disability. Specifically those candidates who can demonstrate an understanding of disability and who are willing to listen to carers and who are prepared, at least metaphorically, to walk in a carer’s shoes.
“March is coming”
Marianne Lewis, Senior Policy, Projects and Carer Engagement Officer, Carers SA