Parliamentary Joint Standing Committee on the National Disability Insurance Scheme (NDIS)

Statement by: Michael Worthington (Primary Carer and Nominee for Jamie K Worthington) Dated: 20th March 2019

I am the uncle, primary carer, nominee and advocate for my nephew, Jamie Worthington, who is a NDIS participant. Jamie has refractory epilepsy, characterised by complex partial onset (focal) seizures. These seizures can occur anywhere, anytime (even when asleep), without warning and usually result in falls, loss of consciousness and injury. Jamie has little to no recollection of his seizures. Over many years his epilepsy has also resulted in severe memory loss and cognitive impairment. Recently, the NDIA substantially reduced the funded supports he receives, mainly in the area of Daily Living supports. Over the three plans approved since Jamie transitioned to the NDIS from NSW state-based support programs, Jamie’s Core Supports have been reduced by 44.28% (from the initial plan supports in 2016-17). This last reduction in funded supports resulted in a request for Review of Decision, which was lodged on 21st November 2018.

I think this latest reduction is part of a targeted approach by the NDIA toward certain participants, in an emerging Agency culture where sustainability of the Scheme and cost reduction is being given more emphasis than the necessary and reasonable supports required by participants to maintain their goals and aspirations.

I have discussed this statement with my nephew and he is happy for me to submit this document to the Parliamentary Joint Standing Committee on the NDIS. The comments and observations I have made here arise from my own experience and dealings with the National Disability Insurance Agency (Agency) and from my research of the literature available in the public domain and from correspondence received from the Agency.

Information

Every Notice of Decision received to date (that is, Plan Approval letters) have not provided any reference to the legislation (NDIS Act 2013) under which plan decisions have been made, nor have they provided any reasons for the decisions made.

There is a generic paragraph which says that plan approval “… considered the information you supplied to the National Disability Insurance Agency (NDIA) and the information provided during your planning conversations.” Unfortunately, even the narrative section relating to my nephew’s personal circumstances contains inaccuracies, some of which would impact a decision about supports being reasonable and necessary. For example, in the most recent Notice of Decision for Plan Approval, the distance required to travel to and from work is shown as 3km, when it is in fact 10.1km (and this fact was provided at the time of the planning conversation).

The Planning Process is not Participant Focused My introduction to the Planning Process for participation in the NDIS was by way of a telephone interview. This interview was conducted via telephone (not with a Planner), over about a 40-minute period, while I was shopping at the local supermarket. This was our planning experience for Jamie’s first NDIS plan for 2016-2017. The Planning Process for the subsequent plans consisted of face-to- faced meetings with Local Area Coordinators (LACs).

Communication, Delay and Administrative Governance

Communication by the Agency has been very poor? No response to three consecutive contacts following the lodgement of a Request for Review of Decision. It was only on the fourth contact with the Agency that it was discovered that the Request for Review of Decision had initially been sent to the “wrong Team.” This contact was on 24th January 2019 (65 days after lodgement). Who knows where the request would be now if this fourth contact was not made by telephone? On 25th January 2019, the Agency contacted me by telephone and left the following voicemail … (transcript of voicemail – “Hello Michael, it’s BBBBBBB here, calling from the NDIA. Just calling you in relation to your enquiry wanting an update for Jamie’s Review. Just letting you know that it is with the correct Team at the moment and somebody from there should be in contact with you shortly. If you have any other questions, please give us a call. Thank you. Bye.” Since then, there has been nothing in the communications that helps us move forward and in fact the latest communication just adds to my frustration, anxiety, and concern.

There are several statutory time frames stated in the legislation. In terms of request for review of decision, the participant has 3 months from the date of a decision, within which a request for review can be lodged. Section 100(6) of the NDIS Act says that “as soon as reasonably practicable” the reviewer must make a decision in relation to a request for review of a decision. The Administrative Appeals Tribunal (AAT) recently ruled that “The period referred to in s100(6) of the NDIS Act is a “period prescribed” for the purposes of s25(5) of the AAT Act.”^1 I truly believe that 117 days (at the time of writing this statement); is an inordinate amount of time for a decision to be made in this case and that more than a reasonably practicable time has elapsed. There is ample information on complaints and external reviews in the published literature, but not on actual internal reviews. The NDIA Annual Reports 2016-17 and 2017-18 record 1862 and 7583 applications to the AAT respectively. The number of active participants noted in the reports (89,6104 and 172,3335 respectively) has roughly doubled while the number of AAT applications has quadrupled. My view is that for a Request for Review of Decision, over 50 days is far too long and over 100 days is unacceptable. In the quarter ending 31 December 2018, 5,920 complaints were received by or on

Sustainability versus Necessary and Reasonable Supports

The NDIA Chairman and the NDIA Chief Executive Officer have stated that the NDIS “is a social insurance scheme”8 and that the “Scheme is not about welfare… it is a world-first, based on insurance principles.“9, and I acknowledge this. But the NDIA is supposed to be much more than an insurance “company” and from my personal experience there still seems a long way to go to achieve the shared goals of the Scheme.

Jamie was identified and transitioned to the NDIS in 2016 as he was already in receipt of NSW state-based funding. This shows that access requirements were met. Those requirements continue to be met. The requirements have not changed and neither have Jamie’s real and necessary needs and supports.

I attended an NDIS Information Session shortly before Jamie’s transition to the NDIS and the most common questions posed at that Information Session were about participants not being disadvantaged after transition. The NDIA staff at that meeting assured the audience that no one would be disadvantaged by becoming a NDIS participant. From my experience to date, that information was misleading and inaccurate.

Since transition, Jamie’s plans have been funded as follows: 2016-2017 ($107,183.66); 2017-2018 ($94,935.70) and 2018-2019 ($63,772.18). This represents a 44.28% reduction in funding for Core Supports over that time, but Jamie’s necessary and reasonable supports remained the same and in 2017-2018 Jamie’s actual spend on funded supports was over $80,000. Jamie was receiving support funding from Life Choices and Supported Living Fund (disability support programs through NSW Ageing, Disability and Home Care) of around $66,090 in the year before NDIS transition. The plan approved in November 2018 has seen his funded supports fall to a level below what he was receiving 4 years ago under NSW state-based programs.

By the same token, the Scheme actuary reported in the 2017-18 Annual Report, that the Scheme surplus had risen another 1% on the previous year to 12%10 (that’s a whopping $924 million in surplus on a stated support budget of $7.7

Observations on Scheme Sustainability and Support Utilisation

The current year (2018-19) is expected to see an even further increase in surplus due to underutilised supports from previous years ($2 billion not utilised). The trend of increasing surpluses appears evident.

My primary concern lies with the balance between sustainability measures and providing necessary individualised support plans for participants. While cost reduction initiatives are important, they should be balanced against ensuring adequate support that enables individuals’ goals and aspirations. It seems there’s a tendency towards using one-size-fits-all approaches through insurance-based tools rather than tailoring solutions per case as outlined within published reports.

According to the NDIA’s annual report, pressures include mismatches between package costs versus actual needs particularly among higher functioning participants. In response, strategies have been developed such as detailed plan reviews aimed at aligning participant plans more closely with typical support packages based upon evidence; establishing teams focused specifically on promoting both quality assurance along side financial prudence via targeted audits,file assessments staff training programs etc., alongside developing business intelligence capabilities grounded firmly around sound actuarial principles while also implementing analytics assisting pathway redesigns across all levels involved throughout this process . Ongoing education remains essential too so everyone understands how crucial long term viability must remain central part operations going forward.

This approach feels quite removed from being truly person-focused where each recipient receives custom tailored assistance according their unique requirements - instead appearing somewhat like profiling techniques which may lead us down troubling paths if left unchecked without proper oversight mechanisms in place.

It is very challenging reconcile decisions reducing afternoon funded supports significantly just because someone works four days weekly despite having no indication whatsoever suggesting independence during those times when Jamie does work full time hours daily (7.5 hrs). When questioned about rationale behind cutbacks LAC provided explanation implying that since he worked independently then less funding was needed however logic doesn’t follow here.

hours a day standing, performing repetitive tasks, at a registered ADE workplace with constant supervision and monitoring. It takes him, on average, 18 minutes to travel from work to home (in peak hour traffic) which forms part of his afternoon supports. So, he is being allowed 42 minutes to rest after an exhausting day at work; have a shower; prepare and cook an evening meal, eat, and then clean up. He is supposed to do all this in his day while medicated (on 4 different specialised drugs, so that he won’t have a seizure). He cannot shower or cook without supervision/monitoring because of the risk of injury from seizures. He can’t travel unaccompanied and he can’t drive! I just don’t see how we are all living in the same reality and we certainly don’t seem to have the same expectations. The balance beam needs to come back into line, lest the acrobat (Scheme) falls.

I would like to thank the Committee for its time, patience, and consideration.

Michael James Worthington

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