National Disability Insurance Scheme Amendment Bill 2021

Submission to the Senate Inquiry 4/11/21: Shirley Humphris

Thank you for the opportunity to appeal to this Inquiry. I am a grandparent of a 9- year-old, complex needs girl who has been an NDIS participant since July 2013. Her parents have needed 2 full AAT hearings for supports. I have been a very frequent contributor to several NDIS peer support Facebook groups especially to NDIS Grassroots Discussion of 55,000 members. I have heard very many stories of the distress experienced by members to obtain a fair decision from NDIA. We are very fearful that these changes will be harmful.

Is NDIS Act Amendment Bill a Participant Service Guarantee?

This submission will discuss that the title of this Bill “Participant Service Guarantee” is a misnomer. There will be little participant service. Reasonable and Necessary supports will be at risk. There is no trust of this Government and NDIA to properly support participants. NDIA is so seriously dysfunctional that any so-called timelines will be impossible without further loss of quality decisions of support. A complete overhaul of the Agency is needed before thinking of changing the legislation unless this Bill can be dramatically changed to bring benefit not detriment.

• Trust of LNP NDIA and DSS is at zero and a major part of this submission
• This fast track with numerous complex documents seems designed to obfuscate and there is no trust in Government for this important change of legislation.
• There is too much power with the CEO
• The Bill must not defer to the Rules as part of the Act
• All references to complying with the Rules need removing from the Act. If included, it leaves the Act with an inconsistency. That is, a contradiction could exist between the Rules and Part 2 of the NDIS Act. The CEO power could happen without parliamentary scrutiny, and yet the Act will have legislated compliance with the Rules on planning and access. I am acknowledging the Bill has added that the CEO must have regard to Objects and Principles of the Act, but the new Operational Guidelines do not give confidence of the CEO’s ability to regard Objects and Principles of the Act. In short it is half a legislation, unfit for purpose.
• If NDIA are serious about time limits, put them in the Act not just the Rules.
• Worried that this is a way in for mandatory, unfit for purpose, assessments in the future Rules evading scrutiny.
• Worried that a firm list of “not allowed supports” will be put into the Rules (against Objects and Principles)
• Reasoning of an Internal Review decision needs to be sent WITH the decision or within 7 days.
• Loose definitions of psychosocial access criteria and are only in the Rules.
• Episodic conditions of other disabilities are not considered for access.

• Worrying additions to Category D Rules that give all power to the CEO.
• Participants must have the right to request a reassessment as well as a variation.
• Participants must have rights to appeal a variation decision.
• The CEO must not have the power to change a participant request for a variation to a reassessment or to change a variation request to a different variation.
• Provide provision for consideration of all need at AAT. This is now a federal court precedent but should go in the legislation for s100 and AAT.
• Currently there is an unfair balance of power in AAT appeals, with little recognition of Model Litigant Rules. No NDIA legal representation at AAT, delegates only. Alternatively amend s200A to allow NDIS funded legal representation if NDIA engage legal.
• Payment management has not been covered with this submission but there are many reported problems with proposals from many including that of the participant’s choice and control of providers.
• There is more “red tape” here not less.
• This was meant to apply the Tune report, yet some is missing and some misconstrued.
• Above all, do not renege on Australia’s obligation to the UNCRPD.
• Reject at parliament in its current form - more harm than good. Legislation amendment should be for improvement not detriment.
• Staff KPIs on the Participant Service Guarantee cannot be achieved without quality planning being detrimentally affected. Reject this rushed amendment until restructuring can be addressed to ensure Quality decision making. Currently MP intervention, Media and AAT is the only fair planning for very many.

No Trust

It is with a feeling of “here we go again” as I write this, remembering an all-nighter to get the Independent Assessment (IA) group submission in. The 980 submitters were dismayed that tenders for the IAs were awarded 3 days after the closing date for submissions, and likely all those submissions were theoretically binned. So much for co-design.

So, therefore, this submission addresses the issue of serious loss of trust and the question what is this amendment hiding?

Nothing stopped those unethical Independent Assessments until States and Territories refused to support Minister Reynolds. It feels that only media, MP and Senate approaches will be successful in protecting the disabled.

NDIA/DSS conduct throughout the IA drive has been disgraceful. Taking quotes out of context from the only experts DSS/NDIA had, in their JSC submission. So poor was this that Profs Madden and Glozier demanded an amendment. And NDIA knew what they were doing because the quotes were in full initially (to include the participants own reports) but were clipped for their Independent Assessment submission to Joint Standing Committee. Then they were forced to amend. Other academics that complained similarly to the Agency were Prof Eapen and Prof Whitehouse. See submission 13 with amendment letters.

https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/National_Disability_Insur ance_Scheme/IndependentAssessments/Submissions

Ex-Board Member John Walsh stated at the IA hearing that he relied on NDIA experts. JSC had to ask if he was aware of the experts’ complaints of misrepresentation, and he said he was not aware.

This quote from Speech Pathology Australia (SPA) website on Allied Health IA consultation 2020 shows more evidence of attempts to constrain and deceive allied health professionals.

“Project work was conducted with the understanding that the current model is intended as a screening tool which enables Scheme access decision making only. There were some limitations to the input that SPA and the other representatives were able to provide, as certain aspects of the model and process had already been set by the NDIA and were not open to comment.” SPA

The IA Pilot was run without ethics approval and with poor research methods, not even under the auspices of the Research dept of NDIA, but only the IA dept. The Pilot was therefore short circuited for ethics, as “Quality Assurance”. Assessing 4000 disabled people, and many were children, would never have passed university or medical research ethics without strict controls and debrief counselling available. Informed consent was even coercion, some reported.

Leaked documents to Bill Shorten showed NDIA/DSS made track changes to the “independent report” by David Tune to insert accepting Independent Assessments.

Operation Green Light under ex-CEO DeLuca began the Independent Assessments model in 2018 that would become a tender win for a subsidiary of his company.

More Trust breaches:

There are constant reports of participants having their goals changed in the plan, without permission, by NDIA in breach of s33 (1). “The participant prepares the goals”. This is a breach of the APS Act s13 (4) APS Code of Conduct to comply with Australian Law.

There was the use of known inaccurate data to give the impression participants were losing functionality when on NDIS. An implication was that NDIS is not value for money if it is not working. The Actuary admitted at Estimates that these figures were due to poor data collection. Even after this admission, 58 pages including many graphs of this inaccurate data collection, still turned up in the quarterly report’s addendum. This begs the question of trust from the Actuary.

There were attempts by the ex-Minister Robert to paint a derogatory picture of money grabbing, sleazy participants wanting disability related sexual assistance and then yachts. No respect or any notion of UNCRPD.

Post code data was used by the government to imply high socio-economic areas received higher funding. This was meant to show evidence for the need to standardise an assessment. Not only was this obtuse logic, but the data presentation was shown up as cherry picked by UNSW researchers. Another Actuary fudge. I acknowledge there are inequities in funding, but IAs were not the appropriate fix.

The costings. No real transparency of costs and modelling has come to light. Minister Reynolds looked Senator Steele John in the eye at Estimates and told him you will soon receive hundreds of pages of data, in answer to his request for data and modelling. This turned out to only be the quarterly report with its limited content that does not provide for accurate costs analysis and that 58-page addendum on the “capacity deterioration” that only reproduced the same poor data collection with plenty of graphs every which way from the same poor data. So many doubts on cost predictions. And yet, if there are more disabled people than anticipated - so be it. As described by the Independent Assessment report of the JSC, need should not be refused for financial sustainability consideration. This legislation amendment seems aimed to clip supports for need.

Minister Reynolds showed disability ignorance in citing several groups she believed should not be on NDIS when they clearly should be. The Tier 2 inaction neglect needs addressing. But until it is fixed there must be NO GAPS.

Over and over, we hear media and social media reports of shameful neglect of NDIS participants.

So why only 4 weeks to submit to NDIA/DSS when Independent Advisory Council (IAC) asked for 8 weeks? This is clearly to rush this through before the election. Why drop this on Participants at such a distressing time? Especially when NDIA knew disabled people were de prioritised for vaccination and you offered no easier priority path for vaccination. Why was the question not asked of ALL participants “have you had difficulties getting vaccinated?” Where was the care? We still do not know if this is happening for all disabled prior to lifting restrictions.

Now only 2 weeks for the Senate Inquiry to unravel this mess.

Concluding we cannot rely on this Government or NDIA/DSS to have been fair with these legislation amendments and calling a spade a spape – they lie.

I will get on with my attempt to scrutinise some parts of this legislation change. This needs much more work with a “fair” at the centre. This is not all inclusive; I am not a lawyer and have not had time to consider the reported issues by others, with the restrictions on how funding is to be paid and provider restrictions etc.

I acknowledge there are positives, including attention to a thin market in regions and remote. Provider of last resort should have been considered too, as lower need participants are cherry picked.

The overwhelming standout fear, however, is that there is increased power to the CEO to make unfair policy and the “musts” deferring to the Rules written into the legislation. The last 2 CEOs have given no reason whatsoever to rely on trust. No one believes “Oh no we wouldn’t do that” unless it is watertight in the legislation.

Finally worth noting and preserving the JSC comment under financial sustainability.

https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/National_Disabil ity Insurance Scheme/IndependentAssessments/Report/section?id=committees%2f reportjnt%2f024622%2f77118

9.8 `This committee does not take the position that access or ongoing eligibility for a world-first scheme, which has brought life-changing transformation to hundreds of thousands of participants and their families, should ever be denied to people with disability who meet the criteria for accessing the scheme under the Act. The committee also does not agree that overall plan funding should be reduced so long as those plans have been determined to be reasonable and necessary. After seeing the progress and positive benefits achieved under the scheme, it is crucial to avoid returning to a system that would leave people with disability without the supports that they need. This is not a controversial position; support for the NDIS is bipartisan, spread across ideological divides and shared

Across Australian society, because the benefits the NDIS brings to Australia as a whole are substantial and meaningful.

Very recent modelling is aligning with the Productivity Commission 2011 that NDIS is of economic benefit. Government lacks foresight to ignore this.

https://www.canberratimes.com.au/story/7495771/ndis-cuts-would-harm- australian-economy- report/?fbclid=IwAR3IMFyPN1qBxBFdZ1tNMF_5jQhbkuL1tuE7AfW2dwOuU8lA- tdjPlvF61g

Some Suggested changes to the The Bill

33 4. The CEO must endeavour to decide whether or not to approve the statement of participant supports as soon as STRIKE (reasonably practicable) INSERT within xxxx days or within what is reasonably practicable having regard to section 36 (information and reports).

Reason – put timings in the Act – it is honest.

s47A

1 a) strike prescribed by the NDIS Rules (same reasoning below 6). c) strike of a kind prescribed by the NDIS Rules.

3. b) have regard to relevant assessments, ADD reports and other evidence STRIKE conducted in relation to the participant

Reasoning: assessments cannot be weighted above other reports and evidence. reports and evidence may be needed to be considered that relate to informal supports capacity to care (eg the informal supports medical conditions).

d) Strike d) entirely or at least change “Apply” to “Have regard to”. Reasoning Rules are subordinate legislation.

f) Insert “participants lived experience” to operation and effectiveness of any previous plans of the participant.

4. b) strike “and not to reassess the plan under s48 1” c) strike

The CEO can already reassess a Plan under s48. Not only is this unnecessary but is a deterrent to a participant to request a variation for fear of losing funds from another part of a plan. LACs and planners are known to warn participants

of this possibility when requesting an s48 and that they may lose funds as the whole plan is reviewed. The Tune review intended a variation to only pertain to a section of the plan e.g. to request a piece of equipment, add support coordination etc. It was not expected to risk the other plan funding.

6. Strike CEO must have regard to the Rules - The Rules are subordinate legislation to be applied anyway – there is no need to have them as part of the legislation. I am suspicious of future intent to change the Rules outside of parliamentary debate.

8. Just put the time limit in the Act xxxx days or as reasonably practicable with regard to s50 (information and reports). Delete b) unnecessary

9. Strike that a person could request a variation to say AT and then have a cut to support is a threat to participants to avoid requesting a variation. It is still open to the CEO to initiate a variation anyway.

S48

5. Strike and put matters in the Act
6. put time limits in the Act.

s50 Information and Reports for the purpose of varying or reassessing a participant’s plan

Important: there must be no deferring to the planning Rules in the Act for the reasons of this section.

Currently the CEO can only “request” an assessment of the participant not “require”. There must be no “sneak in” written in the rules that change a “request” to a “requirement’. Deferring to the Rules by the Act could open this up.

The Minister, naïve to her role of an only few months, has said “some sort of assessment will be necessary” Much has been tried and failed to find a fit for purpose assessment. Madden and Glozier worked on it for 5 years. Assessments cannot and must not be left in the CEO’s and the Minister’s hands. We cannot have a repeat of the unethical attempt at this move previously. Refer to the Independent Assessment Inquiry report for the many reasons of the inadequacy of standardised assessments.

50 J a) Strike Rules could be made that conflict with Objects and Principles b) Strike Rules could be made that conflict with Objects and Principles c) Giving effect to AAT decisions requirements must appear in the Act not something vaguely in future Rules (especially with the “must comply”).

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There must be a timing put into the Act to effect an AAT decision e.g. 30 days or less is more than fair given the delay NDIA has caused. There have been reported delays of weeks or months (with cajoling) for NDIA to do this for some.

s89 1c) and 3c) put the time in the Act.

s 99 needs certainty that plan changes by the CEO on varying or reassessing the plan can be reviewable.

S100 (1) after “and of the reasons for the reviewable decision” ADD to be sent with the decision or within 7 days of the decision. As written the reasons for the decision could still be 28 days later or even longer as there is no timeframe for the reasons.

(6) a) Strike Rules reference b)Strike “if there are no such rules”

s. 103 b) Strike

This is ambiguous. It could mean ONLY supports in the participants plan can be reviewed. The statement of supports does not include what is not funded in the plan and the omitted supports may be reasonable and necessary. It also takes months or years to reach AAT so the participant should not be forced to go through the merry go round again. All reasonable and necessary supports at the time should be able to be considered. Furthermore, all aspects of the plan decision should be able to be considered, not only supports, including plan management and plan length.

Federal Court (QDKH) has now ruled AAT has the jurisdiction to consider requests not mentioned in the s100 application – to avoid confusion put this in the Act. This Fed Court decision has also determined that the ability to consider supports not mentioned in the s100 application can also be considered by the s100 reviewer. Delegates and participants should not have to rely on Fed court precedents for clarity.

209 (8) table item 4 after c Caa 47A 6) and cab 48 2)

These must not be Category D – with a CEO power alone and only consultantion not agreement wth states and territories.

Schedule 2

Subsection 4(9A) – define co-design.

Asking for comment then disregarding (eg IAs) is not code-sign.

Subsection 4 (15) – do NOT repeal.

The addition of “market based” support does not include participant driven innovation ideas for their requests. This clause also does not give any obligation to NDIA for Market support anyway.

S14 3 No deferring to Rules in the Act

S 25 3 strike “psychosocial” to cover all disabilities that are fluctuating in severity.

S27 (2) do not defer to Rules as the draft rules (now missing from the Bill) were too vague as definitions of permanence and function.

31d DO NOT OMIT WHERE POSSIBLE – Reason: Parents may be at the limit of their capacity; it may not be possible to increase capacity but need to be supported to avoid relinquishment (in breach of UNCRPD and UNCRC) Without “where possible” it becomes a must do“. This is the experience of my family with a daughter of severe complex needs. They cannot “build their capacity” for care, they need support.

Some missing recommendations from the Tune Review

• 12 The NDIS Rules are amended to reinforce that the determination of reasonable and necessary supports for children with disability will: a. recognise the additional informal supports provided by their families and carers, when compared to children without disability b. provide families and carers with access to supports in the home and other forms of respite and c. build the capacity of families and carers to support children with disability in natural settings such as the home and community.
• 15. The NDIS Rules are amended to clarify that supports in a participant’s plan should be used flexibly, except in limited circumstances, such as capital supports. Why has flexible funding been left out when clearly championed for the future by NDIA during the IA drive? Especially with a thin market, the ability to access other supports across categories is essential.
• The participants being empowered to receive a full draft plan before it is approved by the NDIA
• NDIS Independent Advisory Council develops a new independent participant satisfaction survey, with reporting included in the NDIA’s quarterly reporting to DRC.

Appendix

Participant Service Guarantee Implications for Quality

From the NDIS website:

“Since 1 July 2020, the NDIA has been measuring itself (where possible) against the proposed Participant Service Guarantee timeframes, ahead of the anticipated legislative change.

Timeframes for some of our key processes and how we are meeting our target of meeting these timeframes more than 95% of the time:“

The question needs to be asked whether the time frames are realistic with the current staffing levels EVEN IF the timeframes are in the legislation? This is all down to the Abbott imposed staff caps, LAC outsourcing and a contracted inefficient workforce (see CPSU witnesses at the hearing below).

https://www.ndis.gov.au/about-us/policies/service-charter/participant-service- guarantee?fbclid=IwAR39aazoAhxzxFO5ZuB6lf8Ir1PWQJrFhYuRvfiwqy1CGO833EKCtD gxUblw

Is this why we are seeing rushed and very poor decisions? Some are approving supports WITHOUT the participant in breach of s33 2) NDIS Act, therefore in breach of the APS Code of Conduct. APS Act s13

KPI of time frame despite Quality. Is this a Service Guarantee????

A short Poll (see below) on Facebook NDIS Grassroots discussion shows that Internal Reviews are often rushed, and participants are either not contacted, or called without notice so participants are unable to have supports with them or organise their time. We have heard of calls made when the participants are driving or busy with their child yet they are afraid of missing the opportunity of the call. Many have reported recently that plans sent to Internal review are returned without change. This is my FOI to test this increase – they asked for an extension and is due 5th Nov.

https://www.righttoknow.org.au/request/percentage%20of%20internal%20review%20s1#incoming-22476

FOIrequest:

Pleaseprovidethepercentageofinternalreview(s100)decisionsthathaveconfirmedtheplandecision(I.e.nochangetotheplan),fordecisionsreturnedfrom1stJuly2021toAugust31st2021.

Please provide the percentage of internal review (s100) decisions that have confirmed the plan decision (i.e., no change to the plan), for decisions returned from 1st July 2020 to August 31st 2020.

Community and Public Sector Union to the JSC Hearing

The full transcript or video should be considered. It shows an inability of the NDIA workforce to meet legislated requirements of planning and especially the KPIs requiring the Participant Service Guarantee. For this reason alone, the legislation draft should be considered with extreme caution and extensive consultation time.

Record Datetime: 12/10/2021 14:00:00 Duration: 02:48:00

Official Recording of Joint Committee Proceedings from the Australian Parliament https://parlview.aph.gov.au/mediaPlayer.php?videoID=557429&operation_mode=parlview

HANSARD https://parlinfo.aph.gov.au/parlInfo/download/committees/commjnt/25062/toc pdf/National%20Disability%20Insurance%20Scheme%20Joint%20Committee%202021%2010%2012.pdf;fileType=application/pdf%2031-%2038

The CPSU ran a recent survey as well, with 935 NDIA staff participating. It detailed how the pressure to meet KPIs was having an adverse impact on mental health and work motivation. Nearly 50 per cent of all respondents indicated that they neglected tasks just to keep up with KPIs. Over 70 per cent of respondents indicated meeting KPIs caused excessive stress, and this number was over 81 per cent when it just looked at planners alone. Negative impacts described included sleeping problems, depression and the use of medication to cope.

Mrs Vincent-Pietsch: I might add to your question about employment for people with a disability. We have also been raising concerns on this issue for some time. The agency draws a large number of people who either have a disability or care for somebody with a disability and are passionate about the scheme. That’s quite a common scenario. But we have heard from so many members that they don’t make reasonable adjustments to the KPIs to account for their disability. And where they need to use assistive technology in particular, they’re not getting that extra time factored in that is needed in terms of their KPIs. So staff with a disability are coming to us in big numbers, talking about the fact that the workload is not only unmanageable for everyone, it’s particularly unmanageable for people with a disability.

p.36 Senator CAROL BROWN: With the introduction of the service guarantee, I’m assuming that your workload would have gone up? Is that correct? Ms Butcher: Yes, in effect. So the Participant Service Guarantee indicates some very clear-cut time frames around when a participant should be having a known answer about certain componentry, depending on what process they’re in. And that is absolutely reasonable. People should be able to understand and expect a time frame for when something is going to occur. That would be a standard business procedure that we would expect in all layers of

Participant Service Guarantee

Government, business and industry. But the challenge that we have is that we don’t actually have enough staff to look at that issue, read the relevant information and go back and talk to the participant, because it can be quite a challenging process to navigate. They might have lost a report that is actually quite important. So you need some time to work through that with the participant and their support network. Keep in mind that these are people with people with a disability. Not every single person with a disability has a good informal support network to help them navigate this. Not everybody has a good decision-maker available to them quite rapidly. These things take time. And we should be able to invest the time to make sure that that participant is getting the best outcome and that they feel absolutely respected and they understand the process that they have just gone with. It should be a collaborative approach.

One of the outcomes of the Participant Service Guarantee—one of the values underpinning it—is about transparency and feeling connected. That feeling of connection comes when they have time to talk to the person making the decisions so that they understand the process. And we don’t have that time because we don’t have the staff to do the time; it’s that simple.

p.37 CHAIR: I think someone else wanted to add a comment, but I can’t see from here who it is. Mr Packman: It was me. In a nutshell, this Participant Service Guarantee is about quality, but the severe understaffing across every facet of the agency has drawn the participant guarantee to being about meeting time frames. It’s how we do that, as I mentioned before, in the current design of all our extending plans. It’s a great concept, and it’s a great future concept, but before we accept a plan to be a rolling plan we should have the appropriate scrutiny that quality is undertaken; that the plan meets all of the reasonable and necessary guidance; and that the plan is equitable when compared against similar participants in our society. That’s so we have a good scheme. The Participant Service Guarantee and the understaffing have just resulted in what we would clearly see as corner cutting. We have processes that are designed to be implemented when we have a fully functional and well-oiled machine running. But whilst we have a system full of bottlenecks, backlogs and pressures, and planning that is unable to be done at an optimal level due to short staffing in our AOC area and within our APF system, then we have a service guarantee that is basically all about meeting time frames. In a way, it’s like a minilab which says, ‘We can process your photos in one hour.’ That’s good if one person drops a film in, but if they have to do a hundred of them they’re just going to pump them through the machine, pack them all up and send them out. Unfortunately, have an NDIS that’s dealing with participants’ lives like it’s delivering packages or, basically, an outcome. It’s not the NDIA that I signed up for, it’s not the NDIA that’s sustainable and it’s not the fair NDIA that we all wanted.

Senator CAROL BROWN: Did the CPSU get consulted in terms of the workplace plan that was presented recently by the minister? mrs vincent-pietsch: David, unless you’re going to say otherwise, I would say no, we were not consulted.

Senator CAROL BROWN: Is that usual with such a valuable and important piece of work being undertaken? Is the CPSU often excluded from consultation? Mrs Vincent-Pietsch: Unfortunately, yes—sometimes. And it’s with some agencies more than others. We do think that it would have been so much better to have had the voice of the workers themselves being consulted and having a look at that workforce plan, and giving input into it before it was finalised. We think that involving the workers would have had a better outcome

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A short Facebook poll to test whether sufficient discussion is had to make a quality internal review decision.