Introduction

1. I thank the Committee for taking the time and effort to enquire into independent assessments (IAS), a major (and for me, an extremely concerning) change to the current NDIS legal and policy framework.

2. I make my submission as the sister and NDIS nominee of my younger brother, Bill (not his real name). I am age 49 and have worked in the areas of government law and policy (including at one point, NDIS launch policy for the Victorian government). Bill is 46, has severe Down syndrome, lives in his own rented home in WA (with full time care/supervision) and works 4 days per week in a supervised factory (an ADE). He transitioned to the NDIS in 2017.

3. I participated in the NDIA’s consultation process, held in January 2021, including reading the NDIA’s consultation paper on Independent assessments. I also attended a NDIA-led online consultation session in mid-January. I provided some of my views in that session, and in a written submission dated 20 February 2021. The views expressed in my submission to the NDIA are reflected in this here submission to the Committee.

4. I would like to make some initial comments on the NDIA’s consultation process on IAs, before raising my concerns with their IA proposal.

NDIA’s Consultation Process on IAS

5. The NDIA did not properly consult people with disability, their families, carers and providers on the proposed IAs.

6. In December 2020, the NDIA publicly released the IA consultation paper, but at the same time asked stakeholders to review on comment on three other areas of significant change. That is, stakeholders were pressured and rushed by the NDIA to review and comment on four consultation papers covering very significant and complex changes to the NDIS’s design delivery, i.e. i. the Independent Assessment proposal; ii. the personalised budget/plan flexibility; iii. support for young people and their families; and iv. the ECEI reset project in the space of 3 months The closing date for submissions on ALL four areas was 21 February 2021.

7. As someone who has a career in government law and policy, I feel the timeframe (about 3 months) for the NDIA’s consultation process on four complex and significant NDIS reform proposals (including IAs) was very unreasonable and unfair. This is particularly so when you factor in the effects of the pandemic, the festive season, and very limited time, energy and resource constraints on the disability and advocacy sector. To elaborate, the sector is fatigued just from dealing with disability on a day-to-day basis. The sector is fatigued from dealing with changes to the NDIS since its began in 2013. The sector is fatigued from being consulted on related

reviews and inquiries, such as the Royal Commissions into Disabilty Abuse, Mental Health and Aged Care.

8. Rather than rush these four consultations over the holiday period, the NDIA should have conducted them separately, to allow stakeholders the time they need to consider the issues carefully, and to respond in detail.

9. The NDIA-run IA consultation session that I attended in mid January 2021 did not allow sufficient time to answer the questions raised; it was too rushed. The presenter (a deaf person using an Auslan interpreter, which seemed like the NDIA’s usual tokenistic engagement of a person with disability to market contentious changes to the NDIS) also did not provide evidence to support her claims that the IA would make access and eligibility claims fairer and more consistent. The presenter seemed to be reading from a script prepared by the NDIA. The session was more like a NDIA marketing exercise to promote IAs, rather than a genuine forum for discussion of, and feedback on, the issues.

10. The above way the consultations have been executed, quickly and inadequately, gave me the impression that NDIA simply wanted to merely tick the “yes Minister, we consulted the sector” box quickly, so it can get on and do what it wants, especially in relation to IAs, and ignore any criticisms or issues raised by the sector.

11. The manner in which the NDIA ran the IA (and simultaneous consultation papers on the other three proposals) are an absolute affront to the sector. It makes a mockery of the “have your say” and “we listen” and “participants and their families shape the NDIS” slogans. It does not promote much good faith or confidence in the NDIA: The NDIA needs to do things in a way that builds trust, good faith and confidence that stakeholders are being properly consulted and listened to it.

12. At this point, I re-iterate again my thanks the Committee, unlike the NDIA, has taken on the task of thoroughly reviewing the IA proposal, its evidence base, and listening to the sector’s concerns and issues on it.

13. Note, in my own case, I had time to consider the NDIA’s IA proposal IA paper only, as this is my main area of concern, although I would have liked to have considered the other papers in more detail and had a chance to make a submission on those.

14. I would now like to outline my particular concerns and issues with the IA proposal.

Independent Assessment Proposal

15. It is misleading to refer to the assessments as “independent” when the NDIA is funding the assessors. I note the NDIA’s pains to make not fund advocacy, as that must be “independent” from the NDIS (which I understand and agree with). And it’s pains to write business rules prohibiting ILO (Independent Living Option) providers from providing support coordination to the same client because of the “conflict of interest” rules. NDIA should not have double standards or inconsistencies when

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delineating what is “independent” and what is “conflict of interest”. Clearly, an allied health professional who is being paid by the NDIS to assess a person’s functional capacity is not independent from the NDS. To suggest they are is plain wrong and another affront to stakeholders and an insult to their intelligence. Therefore, if IAs proceed, they should be more accurately described as “NDIA-funded assessment”.

• The paper does not provide evidence to support the claim that IAs will make access and eligibility consistent and fairer. Indeed, overwhelming evidence given to the Joint Standing Committee on the NDIS (and in various other forums) since the NDIA was launched, is that the reasons of inconsistent outcomes in similar participant circumstances is because of lack of NDIA and LAC planner expertise in disability and high planner turnover, and also (in my personal experience). What is being done to address this? That is where the problem is, not in the medical and other evidence participants provide to support the access and plan requests. The proposed introduction of IAs deflects (and does not resolve) the root cause of inconsistent and unfair outcomes.

• Furthermore, in a system that is designed to meet the reasonable and necessary needs of INDIVIDUALS, to support them to achieve their life goals as INDIVIDUALS, there is bound to be inconsistent outcomes as people (and also their level of family/informal supports) are bound to be different. This is the philosophical and legal foundation of the NDS. If the different outcomes are because of individual differences of participants, that is certainly not inconsistency that as problem, as the NDIA erroneously suggests. That is just the system working exactly as it should be working: to cater for the individual’s needs, goals and circumstances.

• I note the NDIA’s current guidelines for GPs writing NDIS reports do already refer to standard questions and assessment tools, so I am not convinced of the argument that IAs are needed to introduce uniform tools. They are already there.

• How can a single brief (20-30 minute – 2 hour) assessment by an allied health professional who has not met the prospective or actual participant previously, and at one location (e.g. their home) result in a fulsome assessment of what the person can and cannot do in ALL areas of their life (e.g. at home, school, work)?

• As I mentioned earlier, my brother was born with Down syndrome. He has severe intellectual disability and is non-verbal. He lives in his own home and when he is not at his ADE (4 days per week) he is cared for at home by a live-in carer (he has 3 carers in total who work on a roster basis). Let me make a number of points in relation to the inappropriateness and unreasonableness of an IA in my brother’s case.

• First, there will be no allied health professional that is appropriate to assess Down syndrome (e.g. physiotherapist, speech pathologist, occupational therapy). He is not regularly treated by any such allied health professional. The only health professional who he gets treatment from is his GP (for the odd health issue) and by a podiatrist (who regularly clips his toe nails and treats a skin condition on his feet).

• Second, as he has severe intellectual disability and is non-verbal, he will not be able to communicate with the assessor. Myself, my mum or a carer would need to answer the assessor’s questions on his behalf.

• Third, the assessor, if observing him to do things at one place, say his home, will not be able to observe him in other settings, such as at work in his ADE, out at the shops, out socialising, so the “assessment” will be very narrow indeed, and certainly not indicative of his “whole of life” functional capacity.

• Fourth, my brother’s condition is very stable, he is middle aged now (aged 46 years), he has had Down syndrome his whole life. He needs routine, he does not easily adopt to change, or new people being randomly introduced into his life and daily routine. For example, when we have had to replace care staff at times, this has resulted in stress on him, which because he cannot verbalise, inevitably causes him digestive issues where he poos his pants at work and in bed etc. This is how we, his family and carers, know that something is causing him stress. To have a stranger come into his home to do this sort of assessment would cause inordinate and unnecessary stress on my brother (and also his family and carers who love and care for him).

• The persons best placed to provide evidence of Bill’s functional capacity are his carers at home and supervisors at his ADE, his family and his GP, i.e. the people and professionals that are in his life on a day to day basis. An IA is not reasonable or appropriate for my brother. If NDIA does not believe our evidence, and feels the need to “verify” our evidence, that is the NDIA’s issue in not understanding Down syndrome.

• If the NDIA does not understand Down syndrome, then given its prevalence, and the fact that this is the Australian government agency tasked with serving people with lifelong disability, then this is very concerning. NDIA planners and their LACs should surely have training to give them a good working knowledge of Down syndrome and at least the other common permanent disability types. Knowledge of disability is an obvious pre-requisite to their job. My contact with NDIA staff and LACs is that they have surprisingly little understanding of Down syndrome and its effects.

• I note that an IA (or equivalent) was NOT required pre-NDIS when my brother was on a similar package of support funded by the WA Government. Rather than put added stress on the participant, the NDIA planner should learn more about my brother’s disability, Down syndrome, and listen to him and those who know him best as to how his disability impacts his life.

• The above said about my brother, I accept that for some people with disability, and for some families, e.g. those who cannot afford to get specialist medical evidence to support an access or plan request, then an IA may benefit them, it may simplify the evidentiary process for them. If so, they should be able to choose to have an IA.

29.

However, consistent with the principle of choice and control embedded in the legal and philosophical framework of the NDIS, I believe that an IA should NOT be a mandatory requirement. Rather, the participant or potential participant should be given a choice as to whether they want a NDIA-funded assessor to obtain the evidence required for their access or plan request.

30.

The legislative detail on IAs is scant. What is the legal basis for mandating IAs? Will the IA report be the only evidence that the NDIA delegate can rely on in making an access or plan decision. What weight, if any, must the delegate give to other evidence about the person’s functional capacity (e.g. from the person, his/her family/carers, treating medical practitioners) be given. If the IA report is not supportive of the person’s claim, or the person has conflicting medical evidence, or any other issue with the IA process, what are his or her review rights or rights to challenge the IA? Can they ask for the IA to be redone by another assessor? What if the person has a complaint about the conduct of the independent assessor? These matters should be clearly stipulated in the NDIS Act.

31.

I understand that, at the time of writing, the Government has drafted changes to the NDIS Act to support the introduction of the IAs. The draft Bill should have been released to the sector earlier as an exposure draft, so that the sector could have time to review and comment. I go back to the issue of process here: the Government appears to be rushing the IA changes and doing it’s best to avoid input and criticism from a weary sector. This is not transparent or fair.

32.

Thus again let me say that I am grateful to the Committee for its work on the proposal; may it bring some rigour, transparency and accountability to the proposed IA reforms to ensure that the NDIS works to take care of Australia’s most vulnerable people like my brother, who no fault of his own, was born with a severe intellectual disability.

33.

Like many other parents of children born with intellectual disability, my parents worked from the 1970s in grassroots disability organisations to fight for a system that would take good care of their children in their old age and after their death.

34.

The IA proposal threatens to undermine the fairness and individual focus of the NDIS, the system my and other parents and families of people with intellectual disability have fought for many years for, and should be abandoned.

35.

Thank you for considering my submission.