Anonymous – 07/10/2021
Re: Submission for NDIS Law Reform
This is a plea for change in the form of a submission to the open public consultation to the National Disability Insurance Scheme (‘NDIS’) for law reform. It is a proposal to have the congenital condition Imperforate Anus/Anal atresia AnoRectal Malformation (‘IA/ARM’) added to the list of diagnosis for recognition as a permanent and significant physical and disability, on the basis that IA/ARM is a disability that carries substantial impact on a person’s ability to complete everyday activities for the whole of life.
Currently, the NDIS does not recognise the condition IA/ARM as a disability and therefore the services and supports offered by the NDIS is unavailable to the IA/ARM community. The legislation currently underpinning the NDIS imposes a cumbersome challenging process throughout all stages of life for individuals who have been born with IA/ARM. So much so that most people born with IA/ARM cannot gain access to the NDIS.
At present, to become a participant in the NDIS, a person must satisfy specific criteria governed by the Act including age and residency status, in addition to either disability or early intervention requirements. The disability requirements include that a “permanent impairment or impairments result in substantially reduced functional capacity in one or more activities of communication, social interaction, learning, mobility, self-care and/or self-management and affect the individual’s capacity for social or economic participation.”
This submission highlights how the condition IA/ARM, as required by the Act, is a permanent impairment resulting in substantially reduced functional capacity. This submission highlights how necessary improvements are needed to address the challenge of negotiating arduous and frustrating NDIS processes for willing NDIS participants from the IA/ARM community and a clear need for systemic enhancements of decision-making around IA/ARM community access to the NDIS.
In determining whether a person with a disability meets the access criteria to become a participant in the NDIS the Act Section 14 provides that the National Disability Insurance Agency ‘NDIA’ may fund persons or entities (a) for the purposes of enabling those persons or entities to assist people with disability to (i) realise their potential for physical, social, emotional and intellectual development; and (ii) participate in social and economic life; and (b) otherwise in the performance of the Agency‘s functions.
The NDIS Operational Guidelines Section 15 List B provides that permanent conditions for which functional capacity are variable and further assessment of functional capacity is generally required. Part 5 lists the conditions resulting in multiple types of impairment including congenital conditions such as VACTERL Association conditions i.e. ‘cases where malformations cannot be corrected by surgery or other treatment and result in permanent impairment but with variable severity.’ VACTERL stands for vertebral defects, anal atresia/anorectal malformation/imperforate anus (IA/ARM), cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities. Fifty percent of persons born with IA/ARM are born with VACTERL Association issues.
Currently a person can also enter the NDIS under the early intervention requirements of Section 25 of the Act, without having substantially reduced functional capacity. The early intervention requirements consider the likely path and impact of a person’s impairment over time. Section 25 also considers
- the benefits early intervention has on a person’s functional capacity,
- their future needs for disability related supports, or
- in strengthening the sustainability of informal supports available to the person, including through building the capacity of the person’s carer.
Section 25(3) of the Act considers that a person does not meet the early intervention requirements if the early intervention support is not most appropriately funded or provided through the NDIS and is more appropriately funded or provided through other general systems of service delivery or support services offered.
Pursuant to Section 27, the NDIS rules prescribe the assessment criteria for determining whether impairments are permanent for the purposes of substantially reduced functional capacity. This includes a person’s capacity for social and economic participation and assessment of whether early intervention supports are likely to be of benefit by reducing future needs in relation to their disability.
Recent qualitative systematic reviews carefully demonstrate the “psychosocial factors affecting quality of life in patients with AnoRectal Malformation (ARM) and Hirschsprung disease (HSCR)” (Sventanoff, 2021). The reviews determined that multiple psychosocial stressors are present for the whole of life of ARM patients. Additionally, examinations of health-related Quality Of Life (QOL) and psychosocial morbidity in ARM and Hirschsprung disease (Feng, 2020) evidences how, despite ARM and HD being the most common congenital colorectal anomalies and the clinical advancement of available surgeries, short and long term physical and psychosocial morbidity is significant. As with VACTERL, IA/ARM cannot be completely corrected by surgery or any other treatment.
IA/ARM should be listed as a recognised disability for the purposes of NDIS approval, as VACTERL is in Section 15 list B of the Act. The extent of how unreasonable the current NDIS process is and that the IA/ARM community is faced with a “fight” for access is unconscionable. For many of the IA/ARM community the NDIS is still unobtainable. The Hon Stuart Robert Minister for NDIS responded to a previous submission in 2020 stipulating that the NDIS was transitioning to a new phase where independent assessments were going to be used to address the discrepancy for children and adults with IA/ARM, however these assessments have not yet been implemented.
This submission takes the opportunity to highlight how sufferers of any mental health condition that is associated with lifelong conditions like IA/ARM are not equipped to deal with the current NDIS process. If IA/ARM becomes a recognised disability, as sought in this submission, it would enhance the ability of those suffering with mental health conditions including parents and carers of those with the IA/ARM condition. Whilst an apportion of responsibility is on medical practitioners to assist IA/ARM sufferers and their parents and carers to navigate the NDIS, it does not detract from the existing deficiencies of the NDIS itself in relation to IA/ARM not being a recognised as a disability.
Participant Service Guarantee (PSG)
Commensurate with the key recommendations to the introduce a Participant Service Guarantee (PSG), this proposal is to establish new standards for timeliness of NDIS processes and the functioning of the NDIA for those living with IA/ARM as a disability in its own right. The new flexibility to expedite support for IA/ARM participants will be of significant benefit. Schedule 1 setting out how the PSG Rule can include how the NDIA are to engage with participants means that as a Category C Rule, IA/ARM can be acknowledged as a disability that meets the eligibility criteria. The Commonwealth Ombudsman is granted the power to provide to the Commonwealth Minister, information about the NDIA’s performance and this proposal for IA/ARM eligibility is requested to be tabled in both houses of Parliament (within 15 days of Parliament sitting).
The inclusion of IA/ARM to the relevant NDIS disability lists will establish an accessible avenue for those with IA/ARM to not only apply to be an NDIS participant but a far greater chance at approval and subsequent support as is desperately required per the proposed NDIS legislative improvements and the PSG outlined on the Australian Government Department of Social Services website.
Disability Reform Ministers Meeting
Implementing the recommendations of the 2019 Act review, this submission is aimed at the passage of necessary amendments to the NDIS Act and its related Rules to be changed. It strives to raise the issue of IA/ARM as an eligible disability at the Disability Reform Ministers Meeting and raise the action items required to implement this change.
Implication of Recommendations
If the following list of recommendations are implemented it will facilitate IA/ARM being recognised as a specifically identified disability on the NDIS:
- Recommendation 19 – The NDIS Act is amended so a participant who requests to ‘plan manage’ their NDIS funding be subject to the same considerations that apply when a participant seeks to ‘self-manage’ pursuant to Schedule 2 (Flexibility Measures) of the NDIS Amendment (PSG and Other Measures) Bill 2021 of which proposed amendments are included in the NDIS (Plan Management) Rules 2021. New 44(3)(aa).
- Recommendation 20 – The NDIS Act is amended to introduce a new Category D rule-making power that sets out the matters the NDIA must consider when deciding whether to undertake an unscheduled plan review. The proposed changes to the NDIS Act are included in Schedule 1 of the NDIS Amendment (PSG and Other Measures) Bill 2021 of which proposed amendments are included in the NDIS (Plan Management) Rules 2021 See: New 47A(6). New 47A(6).
The new NDIS (Plan Administration) Rules 2021 provides the detail of the matters the NDIA must consider when deciding whether to undertake a participant–or-CEO requested plan review.
The new National Disability Insurance Scheme (Plan Administration) Rules 2021 provides the detail of the matters the NDIA must consider when deciding whether to undertake a participant–or-CEO requested plan review.
- Recommendation 25
- That the NDIS Act is amended to legislate a Participant Service Guarantee as a Category C rule, to be updated from time to time, with:
- new timeframes for decision-making, engagement principles and performance metrics, as set out in Chapter 10 of this report
- relevant existing timeframes for decision-making moved from the NDIS Act to the new rule
- prospective participants and participants being empowered to request an explanation of an access, planning or plan review decision made by the NDIA
- participants being empowered to receive a full draft plan before it is approved by the NDIA.
Proposed changes to the NDIS Act are included throughout Schedule 1 (Participant Service Guarantee) of the National Disability Insurance Scheme Amendment (Participant Service Guarantee and Other Measures) Bill 2021. The new NDIS (PSG) Rules 2021 give effect to the changes in the NDIS Act.
The ONE in 5000 Foundation is registered with the Australian Charities and Not-for-profit Commission and supports the IA/ARM community. The Foundation is committed to advocating for the IA/ARM community, promoting the wellbeing of its members and raising awareness of IA/ARM. Whilst there are known instances of members from the IA/ARM community becoming NDIS participants, these instances are rare. The majority of this community are not supported by the NDIS and as a result their mental and physical health outcomes are inadequate for a first world country like Australia. This open consultation and invitation for views on NDIS reform is an opportunity for change in support of the NDIS mission to take a lifetime approach, investing in people and investing early in people with disability and children with developmental delay to improve outcomes later in life.
Individuals with the disability IA/ARM must be made equally entitled to NDIS benefits as are those who have other disabilities. It is a congenital condition that requires life-saving surgery at birth, and ongoing physical, mental and medical intervention throughout the whole of life. For most of the IA/ARM community, the proposed law reform put forward in this submission would mean a first opportunity for them to obtain the reasonable and necessary supports and services that relate to their unique disability, to help them achieve their goals.
Intimate case studies of individuals suffering the IA/ARM disability from the ONE in 5000 Foundation, an IA/ARM community, can be found in the publication “Rare and Resilient: ONE in 5000 Anthology”, written by the ONE in 5000 Founder and IA/ARM advocate, Greg Ryan. The book highlights the life-long challenges of the rare congenital condition and demonstrates the importance of access to adequate support and services that are tailored to IA/ARM needs. Greg Ryan advocates that IA/ARM is both a physical and mental disability. He shares intimate insights of his life as an IA/ARM disability sufferer himself. A recent interview with Greg (on the 24 August 2021) can be found at https://www.iheart.com/podcast/269-the-jaepod-77405689/episode/greg-ryan-86341421/. Greg’s has undergone more than 20 surgeries to assist him survive this chronic disability throughout his 57 years of life.
The extent of effort required to gain the NDIS is understood by only those who can afford the time and whom have the intellectual capacity to undertake the challenging NDIS journey, as it currently stands, for those with IA/ARM. The current NDIS application process for IA/ARM entails coordinated intelligent efforts to understand the system in order to navigate it successfully to obtain a favourable result, it almost impossible. The NDIS lack of understanding of conditions such as IA/ARM is unfathomable. Legal firms representing clients who are lodging appeals are subjected to initiating NDIS proceedings via the Administrative Appeals Tribunal pursuant to s100 AAT Act and faced with exorbitant costs that are often not available or conducive to the predicaments of the IA community. As mentioned many of whom cannot take on employment and have exorbitant costs living with their disability The gruelling process renders a requirement to provide detailed evidence outlining disability, age, current supports and other circumstances or relevant information, such as whether or not applicants have the ability or volition to speak to media.
Individuals with IA/ARM seeking access to the NDIS are unreasonably required to have a comprehensive understanding of explicit details about the types of supports they need. Even if individuals are eventually successful and accepted into an NDIS plan, they are still faced with further challenges to understand the types of personal care and community access that are required but that are not commonly understood for an adequately supported future. There is currently an expectation that applicants must make numerous attempts before becoming successful with their application to be an NDIS participant. The process requires the completion of forms requesting specific dates of previous access requests and for details of provider allied health or medical reports, for which IA/ARM community members cannot afford. Hence the need to be able to circumvent rejections via any known reasons for access criteria that was not previously met. At present, the system necessitates that if the original access request has been appealed through a s100 internal review, or an appeal is lodged at the Administrative Appeals Tribunal (AAT), there may be scope for further review for eligibility. Questions relating to previous legal aid assistance, previous submissions to MPs offices, advocacy work or engagements with private lawyers to assist with applications are unacceptably incumbent upon those embarking upon the NDIS appeal process.
This aim of this submission is to have IA/ARM recognised as a disability by the NDIA, to give the Australian IA/ARM community fair access to the reasonable and necessary supports required to manage their disability. NDIS legislative reform to include IA/ARM as an eligible disability will drive practices that enrich the lifestyles of IA/ARM disability sufferers and for them to be reliant upon the support of the NDIS. This will facilitate overcoming the daily obstacles of this disability, contributing to the broader community and leading a healthy and fruitful life.
Enabling NDIS supports and services for people with IA/ARM between the ages of 7 and 64 years of age means the IA community can reasonably look to work towards their individual life goals and plans with enhanced prospects than currently exists. Increased recognition and support for the IA/ARM community from the Australian Commonwealth Government, means better prospects for good physical and mental outcomes for the children, parents and the adults with this disability. In addition, there are economic advantages that stand to be gained from IA/ARM community participation, that also outweighs the cost of the supports provided by the NDIS. If this proposal is accepted, the NDIA will recognise IA/ARM as a permanent and significant disability, and the current system that places an unfair and cruel burden on sufferers will finally be alleviated.
Thank you for your time and consideration.