Submission to NDIS Amendment (Getting the NDIS back on Track No. 1) Bill 2024
NDIS participant and self-manager
I have lived with quadriplegia for the past 28 years. During this time, I have experienced multiple models of support delivery and have found the NDIS, since I joined the scheme in 2018, profoundly life-changing.
The NDIS, finally offered me the support, choice and control to recover from significant mental illness, to be less disabled by severe chronic pain, to participate more fully in my 14-year-old son’s life, to volunteer in my community and now return to part-time paid work.
I do not think that the Act, in it’s current form, will achieve what I feel are necessary reforms to make the NDIS more sustainable, cost-effective and clearer.
The Act has the potential, however, to severely impact people’s choice and control over the types and delivery of supports they receive and where they live, embed limited parliamentary oversight over ministerial powers to determine key sensitive and crucial elements of the NDIS and does not do enough to ensure that people with disability (PWD) are consulted or evidence based best-practice is implemented. Hence the Bill has the potential to deliver much poorer outcomes for myself and others.
In my experience, better outcomes in the key areas of safety, community participation, cost-effectiveness, and overall health are directly linked to participants having choice and control over their supports, professionals who have intimate knowledge of participants’ lives involved in the assessment and planning process and processes for co-design with people with disability in place.
My specific concerns are outlined below:
The definition of Support
I am very concerned that the principle of ‘reasonable and necessary’ supports has been replaced with a more proscriptive definition of Supports. I feel that this has the potential to severely impact the Act’s stated aim of choice and control.
Choice and Control underpinned by the principle of ‘reasonable and necessary’ supports has been the foundation of the success of the NDIS for me. It has enabled me to respond innovatively, appropriately and cost-effectively to achieve high quality services and real life-changing outcomes. After experiencing multiple models of service delivery for 28 years, I have finally been able to respond flexibly to the complexities of my disability. Some examples are outlined below:
- My goal: to achieve independent access to my bathroom to change my stoma bag and wash my hands. I could have achieved this outcome by either requesting significant renovation of my bathroom which would have been highly expensive and paid for by the NDIS, or using my architect brother’s voluntary time and expertise to design a custom sink with me paying for its install.
Using the premise of ’reasonable and necessary’ my NDIS planner was able to approve the sink. He stated to me that the sink was a much cheaper and more
Page 2
appropriate item that would ultimately save the government money and deliver better quality life-changing outcomes for me as well as lessen my need for paid personal care support. He was right, it absolutely did.
In 2020 I had 6 ambulance trips to hospital and 5 admissions in the space of 4 months. The doctors struggled to find a solution to my autonomic disreflexia (sudden onset of dangerous high blood pressure – a common symptom of quadriplegia). After discovering the probable cause to be severe sleep apnoea (another common symptom of quadriplegia) and using the principle of reasonable and necessary support they were able to quickly hire a CPAP machine for me to use. Expensive hospitalisation was no longer necessary and with less daytime tiredness my functional capacity increased.
Prior to my injury I had a strong yoga practice. Using the principle of reasonable and necessary I have been working with my yoga teacher to develop a program of practice to manage my significant and disabling chronic pain (a common symptom of quadriplegia). This has been a far cheaper and far more personally effective solution than very expensive fortnightly spinal specialist physiotherapy treatment. I have been able to return to her mainstream classes, have increased strength to function daily and significantly decreased chronic pain. It has been a major contributing factor in me returning to paid work.
While I absolutely agree that the NDIS should not fund expensive holidays for participants and family members. Funding to cover the cost for the extra expense incurred because of the disability should not be ruled out and people should not be forced to only used their funds on traditional, often expensive and inappropriate respite services.
Respite for me is to be able to spend meaningful relaxation time with family and friends. It is also being able to give my son a break from the impact that my disability has on his life. I can and have found cheap (and far less expensive than traditional respite for which I am eligible) ways to experience this respite by using NDIS funds to cover
Wages, food, transport and accommodation costs of my personal carer,
Transport costs for my considerable amount of necessary equipment
Hire of disability specific equipment such as pressure relief mattress and hoist
To help cover the expense of appropriate accommodation (which is far higher than accommodation available to the general population).
Please note that whenever family members stayed with me, they covered their portion of any rental.
Without funding to cover such disability related costs NSW-based family holidays would be financially prohibitive. Further it is only through PWD needing and using holiday rental properties that the stock of accessible accommodation will grow and bring down cost.
I cannot see how an Act that proscribes what is and isn’t a disability support can continue to enable such highly personalised and effective, relatively low-cost supports. These supports rely on participants having the freedom to innovate within a given budget to find often cheaper, better-quality solutions for what are often complex very personalised and environment dependent goals and barriers. And the positive flow-on effects are numerous – integration into non-disability specific markets, participant integration into the broader community and businesses from outside the traditional disability market learning how they can engage with and serve the disability community.
Recommendations:
- Reasonable and necessary remain as a core guiding principle in the creation of plans.
If a definition of support is deemed necessary then:
- The list is co-designed by PWD
- The definition is broad so that individuals can find suitable, innovative supports that achieve results without going over budget.
- the Act has protections in place to ensure that the definitions remains flexible and broad into the future and that any changes are co- designed with PWD and are evidence-based.
Needs Assessment Process and Budget Calculation Method
The Act proposes that the minister of the day be given the power to change the needs assessment tool and the budget calculation method by tabling an instrument in the Senate. I am concerned that the Act gives too much power without sufficient parliamentary oversight over these elements of the NDIS that are core to its operation and have real potential to substantially impact people’s lives.
In 2021, I volunteered to undergo a trial NDIA Independent Assessment. I am articulate and, after 28 years living with my disability, I am well-equipped to communicate my needs. However, it was very difficult to communicate the complexity of my disability in 3 hours and I found the process very emotionally challenging. The assessor did not consult any reports from my highly experienced specialist OT and physio.
I believe it was a badly designed assessment. It relied heavily on my ability to communicate and be assertive about my needs. This ability has been developed through many years of experience. There is no way I could have done this as effectively in the years immediately following my injury. It also could not realistically consider the complexities of how my impairment interacts with my environment. It is an example of how a badly designed assessment tool could lead to an inappropriate budget and plan and poor outcomes.
I am extremely concerned that this Act makes it possible for the design and reimplementation of such assessment tools and ones of even poorer design.
Restrictions on plan management and spending flexible funding
I am deeply concerned by the Act giving the NDIA more power over participant’s plan management request (subclauses 32F(6)-(7) and 43(2C)). Particularly in the circumstances where ’(b) NDIS funds have previously not been spent in accordance with a participant’s plan; and/or (c) a circumstance to be prescribed in new ‘Category A’ Rules.’
Circumstance (b) should only be a last resort power. At the moment, as The Public Interest Advocacy Centre (PIAC) observes, the power could be used after a single instance of non-compliance. Further it is deeply concerning that the Category A rules referred to in (c) could potentially unnecessarily restrict a participants’ choice over what supports they get and who provides them.
That participants can request review of the needs assessment and present evidence if they feel that it is incorrect
That a participant’s budget and needs assessment be separately reviewable items
Recommendation
That the power over a participant’s plan management choice be reduced to only cover cases of extreme or repeated non-compliance
If Category A rules are deemed necessary then the intention and types of Category A rules be further explained and limited in scope
The Act contains protections for PWD from governments now and into the future conflating the two separate issues of (1) overall budget and (2) a participant’s choice and control.