NDIS PLANNING:
SUBMISSION FOR THE JOINT STANDING COMMITTEE ON THE NATIONAL
DISABILITY INSURANCE SCHEME
Thank you for giving me the opportunity to participate and make suggestions for continued improvement in the NDIS planning process.
I am the primary carer of an NDIS participant who has significant disabilities that impact his everyday life. I am also an academic and have been a disability speaker/ presenter. I am very involved in several carer support groups, and have worked to support these families with challenges associated with the NDIS.
My son received his first plan in early 2018. His ‘review of a reviewable decision’ finally occurred in late 2018, and we are just about to complete our next plan for 2020. My family has also recently relocated to a small regional township (from a large metropolitan city), and as such I have experience working with NDIA representatives from several regions.
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The planning process is flawed and there are a number of problems to explore. However, for the purposes of this submission I would like to focus on the following terms of reference:
A, B, E and I.
A. The experience, expertise and qualifications of planners; The first and most problematic issue is that planners do not meet NDIS participants (or representative). As such, they do not hear whole story: to HEAR the challenges experienced by participants and their families on the day to day basis; to SEE the exhaustion and hopelessness on the carer’s face; and to EXPERIENCE what it is like to LIVE with disability day in, day out.
The LAC provides the planner with a SNAPSHOT of the day to day lives of families living and working with an NDIS participant and a SUMMARY of the challenges and needs of the person with significant disabilities.
In my experience, even when an LAC recommends to the planner that supports are ‘reasonable and necessary’, these can be knocked back by the planner. The problem here is that the LAC has the opportunity and time to develop empathy and knowledge about the participant and their representative. The planner does not!
What can be done?
Planners need more experience/ expertise in disability, and they need to meet NDIS participants (or representative). At a minimum, they need to see video footage or similar of the LAC meeting, to really get a sense of what it is like for families and the participant.
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The planner has a massive responsibility to ensure that participants get the most out of the NDIS, and that the funds are used wisely. It is therefore vital that the allocated planner knows the participant - their unpaid carers and families - inside and out. NDIS planners make life altering decisions that can make or break a family.
B. The ability of planners to understand and address complex needs; A key problem I have experienced throughout the NDIS journey is the lack of understanding that disability affects the WHOLE family, not just NDIS participant. In other words, planners need to recognise that while funds are allocated to the person with a disability, they must factor in the needs of the whole family (if the NDIS plan is to work effectively). Carers are people too!! They have a right to participate in paid work, study, socialise, and maintain good physical / mental health. They should not be made to feel like an NDIS implementation tool.
Understanding and addressing complex needs means understanding that parent-carers cannot be expected to maintain or carry out all of the tasks that are often relegated to ‘parental responsibility’. I’ve seen SO many parent-carers which extreme burn out due to years of neglecting their own social, emotional, mental, physical and financial wellbeing. It is not ok to have a scheme that continues to rely on unpaid carers as the primary resource for providing support to NDIS participants – especially for older children, teens and adults.
As a parent you expect to offer intensive care and time to your infant and small child. It is not ‘reasonable’, fair or feasible to expect parents to continue to provide this intensive level of care and time – just because their child has a disability. It is damaging and destructive to the health and wellbeing of the carer, and has been proven to cause long term ill health consequences for many unpaid carers.
What can be done?
Planners need to factor in the needs of unpaid carers into their calculations of ‘reasonable and necessary’. Currently there is a major over-reliance on ‘normal parent responsibility’.
Planners need to be provided with examples of the typical day-to-day ‘responsibilities, activities and schedules’ for a child/ teen/ adult at a particular age/ stage of life. (In particular, how much is done by the individual and how much is ‘normal parent responsibility’). This should then be considered when thinking about the ‘reasonable and necessary’ supports granted to the NDIS participant.
For example, it is ‘normal’ for a teenager to do the following with little or no parental intervention/ support:
- walk to school
- socialise with friends
- catch public transport
- prepare snacks or small meals
- shower and dress themselves
- attend weekend and after school activities
- sleep over at a friend’s house 2
However, many planners still expect parents to carry out all of the above tasks for their teenage NDIS participants. This is NOT reasonable for the teenager OR the parent. Teenagers need the opportunity to grow their independence and parents need the opportunity to pursue their own goals away from the intensive care duties of early childhood.
E. Participant involvement in planning processes and the efficacy of introducing draft plans;
It would be extremely useful for NDIS participants and/or representatives to view a draft plan. This would allow us to see if the supports suggested by the planner will effectively meet the needs of our participant and our family.
We can then ask questions such as:
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Are the supports listed under an NDIS category that be accessed through locally available providers?
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Will the allocated funds cover all of the needs of the participant throughout the whole year – including into a new year for plans that start mid-year?
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Has the planner factored in travel and associated costs (especially for those of us in regional areas)
A key issue for us in our current plan has been juggling the funds available in NDIS categories with the available service provision. For example, we have found that many of our local service providers operate under category CB daily activity. However, there is a severe shortage of providers operating under the category of CB improved relationships. Thus in our region there are a lot of NDIS participants ending plans with money ‘left over’ in one ‘bucket’ while experiencing a major shortfall of funds in another ‘bucket’. It would have been far more beneficial for these participants to have all funds provided under the category of CB daily activity at the beginning of their plan.
Another important aspect of ‘draft plans’ is the opportunity for planners to provide justifications for removal of funds from plans. Participants have to provide extensive evidence to explain why supports are ‘reasonable and necessary’. Planners need only say ‘parental responsibility’ or ‘not needed’ at this time. Planners ought to be held accountable and provide evidence to back up why they believe a support is not ‘reasonable and necessary’ at this time.
I. The adequacy of the planning process for rural and regional participants; I am blessed to live in a small regional town that is located 35 minutes from a larger regional town. While I am happy to drive to the larger town to meet with the LAC, I am concerned that no alternative was offered (eg a meeting place in my town). It does place a financial cost (eg petrol to and from) and time cost on the participant or their representative, and this may be difficult for some families.
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