Submission

Joint Standing Committee on the National Disability Insurance Scheme PO Box 6100 Parliament House Canberra ACT 2600

Dear Committee Members,

Fairer NDIS For All welcomes the opportunity to make a submission to the Inquiry into Independent Assessments and share our concerns with the proposed system.

Fairer NDIS For All is an independent, grassroots campaign built by both disabled people and workers in the disability sector. We aim to use direct action to fight for a fairer National Disability Insurance Scheme and to fight against the rollout of independent assessments.

The assessment process has been experienced firsthand by many of our members who live with disabilities while also trying navigate the complexities of accessing support through the scheme.

We are happy to provide further information. Please contact fairerndis4all@gmail.com if you have any questions.

Sincerely Fairer NDIS For All

Fairer NDIS For All

Submission to the Inquiry on Independent Assessments

redacted:

Introduction

Community opposition is loud and clear: key criticisms

Poorly trained assessors

Unnecessary and harmful barrier to support

####### Lack of accountability

NDIS needs to become more, not less, accessible

Overwhelming evidence that IAs don’t work

Independent assessments have had to be routinely overruled

Flawed pilot trial methodology

The N DIA has ignored internal and external feedback to justify IAs

Recommendations

Introduction

Fairer NDIS For All opposes the proposed introduction of independent assessments and expresses grave concern about its efficacy and fairness. Fairer NDIS For All argues that the proposed independent assessment system will be harmful to disabled people who are participants of the National Disability Insurance Scheme (NDIS). 1

The NDIS must be equitable, accessible and fair for all because it is a vital scheme that underpins the wellbeing and livelihoods of many people in Australia. Changes to the system must be evidence-based and built on genuine community consultation, which has not been the case so far.

Within the context of the recent findings of the Royal Commission into Aged Care Quality and Safety and the Royal Commission into Victoria’s Mental Health System, we already know that there are significant and deeply entrenched systemic failures within Australia’s health and care sectors. These and past Royal Commissions have consistently called for significant culture change and investment to rebuild these institutions. Independent assessments would be a step in the opposite direction.

Indeed, using independent assessments as an underhand means to cut more people out of services is completely at odds with what Australian people expect from their governments. IAs are a dodgy move to take money from participants’ plans. The government claims that IAs will save our money, but this is not the case as we will discuss further.

The September 2020 NDIA Quarterly Report identifies a number of “cost pressures” under the heading “Financial Sustainability.“2 The report argues that there needs to be a compromise between alleviating these “cost pressures” and providing for disabled people in order to continue the scheme “sustainably.” The solution identified by the report is IAs. The report claims there can be better alignment between “a participant’s support package to their circumstances through independent assessments.” This is an admission that IAs are being introduced to save the government money.

This is despite the fact that since the scheme rolled out, spending has been frequently under budget. For example, the 2018-2019 budget rolled over $4.6 billion originally slated for the NDIS into the budget’s surplus. 3 For the first time, spending on the NDIS overshot the budget between 2019-2020 by $1.3 billion and could have easily been covered by previous underspending if the government committed that money to disabled people, rather than using underspent funds as a political prop.4

1 Note on language: Fairer NDIS For All subscribes to the social model of disability and sees disability as the combination of impairments and social exclusion. In the tradition of the social model, we use ‘disabled people’ rather than ‘people with disabilities’ to reflect this belief.

2 NOIA Quarterly reports can be found here bttps’/Jwww odis oov au/about-us/pubJicatjons/guarterly-reports

3 bttps ·lfwww tbeoua rdi a □ com/a ustra Iia-news/2019/sep/19/a ustralia s-budoet-effectively-in-ba la nce-afte r-46bn-underspend-on-ndis

4 bttps ·11everya ustra liaocounts com au/so-what-did-the-tedera 1-budoet-revea 1-about-the-ndjs/

We have heard the language of comparing “severity of disabilities” often when talking about the N DIS. The social model rejects this as the social model positions disability as a social category, not a medical category, and is fundamentally a labour problem, not an individual problem. In short, under the social model there is no such thing as a “severe disability”, and individual solutions will not achieve justice for disabled people as a whole. The social model, as defined by Michael Oliver, takes into consideration individual impairments (what some may call disabilities) and the social exclusion of people with impairments that render them ‘disabled’. This model is preferable because it more accurately reflects the experience of being disabled in the current world, and recognises the need for social change not just medical intervention. This is why Fairer NDIS For All rejects IAs on principle as it further medicalises and individualises what requires a social solution.

It has been estimated around 1 in 3 people accessing the NDIS are receiving disability supports for the first time.5 This needs to be properly investigated so we can learn what about the NDIS works for disabled people, and what can be improved. We reject the idea that the private market is the cause of this, rather than the emphasis on functionality instead of diagnoses, additional money poured into the disability sector, and the #EndSegregation campaign by disability advocacy groups. In fact, we believe that profiting off the needs of disabled people, what was coined as “handicapitalism” in a 1999 Wall Street Journal article, is harmful for achieving social justice for disabled people. 6

Disabled and non-disabled people alike expect our decision-makers to provide material support where it is needed in a fair and transparent way. We expect our decision-makers to prevent people from falling into poverty, homelessness, and underemployment. Yet, the introduction of IAs is projected to do just that.

https ://www nd is.gov au/news/1 518-ndis-data-shows-one-three-pa rticipa nts-are-accessi ng-d isabi lity-s upports-fjrst-tjme 6’People With Disabilities Are Next Consumer Niche’ bttps llwww wsj comtacticlestsB945213765959569213

Community opposition is loud and clear: key criticisms

     " .... (the NOIA) sent me a booklet explicitly promising a "lifetime commitment" to
   support whenever it was needed. '17 - N DIS participant

There has been significant outrage against independent assessments (IAs) among disability advocacy groups, our community, and N DIS participants. Disability advocacy groups such as People with a Disability Australia (PWDA), Women with a Disability Australia (WWDA), First Peoples Disability Network (FPDN), and Every Australian Counts were never consulted on the introduction of IAs. Fairer NDIS For All asks the government: what happened to the slogan ‘Nothing About Us, Without Us’?

Poorly trained assessors

“She introduced herself as an OT and asked if I had any questions before starting the assessment. I asked if she had any experience with disability and she replied she had none and had only been working as an OT in aged care for a few weeks. My diagnoses include several serious mental health issues as well as medical conditions and autism. It was disconcerting to think that the person who would be determining my annual funding had no understanding of disability or any real life experience in disability or mental health issues.” - Independent assessments trial participant

From the very beginning, disability advocacy groups released statements criticising the government’s introduction of IAs, particularly around the lack of experience that assessors have working with disabled people, and a lack of training about trauma-informed practice and person-centred practice. The negative consequences of poorly trained assessors is significant, causing immense harm and distress in disabled people with Post Traumatic Stress Disorder (PTSD).

Within the parliamentary context, the Select Committee on Autism has heard significant concern from the community regarding IAs. lrabina Autism Services CEO Debra Goldfinch, addressing the Committee on 11 February 2021 on the matter of IAs, stated that the assessment process had proven a “very traumatic experience for every single one of [her] patients” due to assessors’ lack of significant skills appropriate to autistic participants.

Indeed, those of us who have gone through IA trials have expressed outrage at the “dehumanising” experience of IAs and are “frightened” for the future of the N DIS. One supporter of our campaign expressed to us that their assessor clearly had no knowledge of what disability was and no understanding of mental health. When this person provided feedback, hoping that it would go back to the N DIA, they found out it only remained with the

7 A copy of this booklet can be found on the NDIS website: bttps·11www ndjs i;iov autmedjat226tdowo1oad

Unnecessary and harmful barrier to support

“In all instances it is difficult not to wonder if the initial contact begins with a disregard for my\personal circumstances (always advised), how can I possibly engage with the service on a \fair and equal footing? I am already at a disadvantage before a word has been spoken.” -
Independent assessments trial participant

The NDIS is supposed to be a holistic system of assessing functionality and a step towards\the social model, rather than previous systems of institutionalisation and segregation. Yet IAs
would actually make it harder for disabled people to access the support they need to\participate in the community how they would like to.

IAs have been criticised for increasing bureaucratic barriers to the NDIS and mirroring some
of the worst aspects of our workers’ compensation system, where clients with genuine needs
are treated with suspicion and doubt, and therefore further marginalised. The psychological
harm of changing and increasing barriers to support services is unacceptable.\n IAs will not take a flexible and holistic approach into understanding a disabled person’s
impairments. An independent assessor is a stranger who is let into your home and watches
you to judge how functional you are in a very short period of time. It is impossible under that>>model for the assessor to understand a client’s experience at work, using transport, or being
in public spaces. This is not what the NDIS originally promised, and is a step towards an>>>increasingly bureaucratic, medicalised system that can traumatise disabled people.\n For disabled people whose impairments and ability fluctuates, 1 - 4 hours (including report>>>>writing) cannot be enough to assess our functionality. It cannot be guaranteed that a\disabled person will be assessed on a good day or a bad day. If it is the former, then your>functionality will be overestimated, and support slashed.\n “My mental health means that I struggle to engage with service providers personally . I have\spent over fifteen years communicating with service providers for myself and on behalf of my>>>>>>>>children, which unfortunately includes a substantial number of inappropriate, negative and damaging interactions. As a result, \I am protective of my personal space and who I allow to breach my personal boundaries and interact with myself and my children (who have both experienced harm from unsuitable/inappropriate supports and service providers). With the new assessment model the choice of who comes into my personal space is taken from me.” - Independent assessments trial participant

Lack of Accountability

Anotheaspect of the IA system that has prompted loud opposition from the community is is that it will not be possible for N DIS participants to appeal the outcome of the IA. Participants areabletoappealthedecisiononlyofanNDIAplanner.FairerNDISForAlldoubtsthat sppealeddecisions of NDIA plannerscanbechangedsignificantlyinfavourofdisablesd paticipantsiftthedcisionisbasedonanaireportthatcannotappeald..Thisisblatantly takingpoweroutofdisablepeople’shands.

Whentofficersoftgovernmentarenothldaccountablforimmensepowertheyhave overthelivelihoodsoftheirclientsitisclearthatttheyareactingnotinserivceofthepublic godInstead,tislearthatassessorsaretaskedtomaketheNDIsmoredifficulttaccssandsupportmoredifficultretainfrparticipantsThelvelhoodsandwellbeingf disablepeoplre beingdirectlyexchangefortpoliticalgainbudgetsurplus.

NDIS needs to become more, not less, accessible

“My psychiatrist basically found that getting someone on the NDIS was kind of a job\nin and of itself and he simply didn’t have time to check all the bureaucratic boxes, so I\nimmediately get it for a good few years after I first applied. My psychologist had a bit more \ntime and experience with the system and was able to make it work.” - N DIS participant

“One of the things I found for those few years when I was (trying to access the NDIS)\nis that almost all disability support programs have been totally wound back in\nfavour of the NDIS. The NDIS supports people that have “severe and permanent”[disabilities,\rand that’s a high bar - and if you don’t meet it, there is no longer a system\nto support you whatsoever.” - NDIS participant

Currentlly the NDIS supports more than 400,000 people out of a population of over 4 million disabled people in Australia.\nThis means that 10% of disabled people in Australia are currently able to access the NDIS.\niere are still many of us shut out of the NDIS and while\nthre may of the reasons for being unable to access the NDIS, all of them are systematic.

For some of us who become disabled during our lives, learning to identify as disabled and accept our impairments can be the hardest thing we face in life.\nit becomes a long-term struggle of finding the right doctors, allied health professionals, staying on waiting lists,\nloking for accessible work, accessible housing, accessible transport, and in general looking \nor professions and supports we trust.\nit is not uncommon for someone in the disabled community to have had a traumatic experience due to the medicalisation of being disabled.\nThe recent Disability Royal Commission has shown us that this is the reality of being disabled in Australia.

Tis is why it can be so demeaning for a disabled person, looking for material support to cover the cost of being disabled, to be rejected.\ne in 5 disabled people trying to access the scheme face the reality of being rejected from the NDIS completely.¹ IAs will only increase\nthe number of disabled people unable to access proper support and funding, and will force\nmany more disabled people into precarious positions.

Decision-makers already know that the NDIS needs to be made more accessible.\When the Tune Review of the NDIS was released in January 2020, it showed that the NDIS had too many bureaucratic barriers to accessing the scheme.\ndependent assessments is another bureaucratic barrier.\The Fairer NDIS For All campaign wants to know why the government has completed disregarded the findings of the Tune Review and ignored the experiences of disabled people.\e introduction of IAs is a backwards step from recommendations of the governments own review process.\nis unacceptable and clearly at odds with the public good that the NDIS is meant to provide.

The governments language around how IAs will make the NDIS more accessible is inconsistent and inaccurate.\NOIA Minister Stuart Robert claimed that disabled people spend between $130 million and $170 million on assessments when accessing the

⁸ https://www.abc.net.au/radio/newsradjo/access-to-ndjs-jncreasi □1J l¥-barder112871238

Independent Assessments

Submission 272

The NDIS. They say they “want the NDIS to be available for everyone, no matter what their financial situation is.” The NOIA itself also claims that providing mandatory independent assessments free of charge will remove some of these barriers of cost, by removing the need to spend money on expensive specialist appointments in determining access to the NDIS.

HHowever, this is misleading. IAs actually create an additional process, and applicants will still need to spend their own money on specialists’ reports to submit in trying to access the scheme. The NDIA’s own Q&A on independent assessments makes this clear: “It’s important to remember that independent assessments are just one piece in a collection of supporting evidence that the NOIA considers when making decisions about a person’s eligibility for the NDIS, and in the planning process.”

It must be noted that IAs are only available to people who have already met access to the N DIS, which is after most people have spent lots of money on medical and allied health appointments to apply for the NDIS. Inequities in access to good quality medical and allied health services will remain under independent assessments. People who do not access the best services, particularly given the need for specialist services in the treatment of complex disabilities, will continue to be underserved by the N DIS. There is no aspect of the IA model that makes assessments easier for participants. In fact, they add an additional barrier.

We wish to remind the government of what happens when disabled people are unable to access support. Between 2016 and 2019, 1,279 people died while waiting to access the NDIS. Fairer NDIS For All are concerned that lives will be risked. The government needs to step in and pay for these costly appointments and reports in such a way that is not conditional on the outcomes. We already know that the government has $4.6 billion surplus for the NDIS from its 2018-2019 budget, which must be reinvested in the NDIS to make processes fairer and more accessible.

Overwhelming evidence that IAs don’t work

We acknowledge that the Committee has specifically queried “a. the development, modelling, reasons and justifications for the introduction of independent assessments into the NDIS’. It is in these areas we believe the government’s case for the introduction of inindependent assessments, particularly in their currently proposed form, is noticeably weak. eEvidence in favour of IAs is virtually non-existent, but there is overwhelming evidencethat iA make the system less fair and more expensive.

We also assert that in pursuing its justification to allow the proposed reforms to the NOIS Act (including the provision of Independent Assessments), the Coalition government and thenoiia have been consistently misleading, and have conducted themselves in a manner devoidoftransparency that has undermined due process and the will of disabled people.

Independent assessments have had to be routinely overruled

Independent assessments are purported to be “fair” - but already in cases where the decisionof an independent assessor has been appealed, the Administrative Appeals Tribunal hashquestioned and rejected their validity. A notable September 2020 decision saw the Tribunal reject evidence supplied by an independent assessor to block an applicant’saccess to the NDIA, ultimately ruling in favor of the applicant and invalidating therndependent assessors report.’

Unfortunately, the noia has potentially found a way to brush off such defeats and sidestepthe legal system. As mentioned earlier in this document, participants will be able too appeal decisions only of an ndia planner, which is ultimately ineffective if suchdecisions are based on an IA report which cannot be appealed, no matter how inappropriateor inadequate it may be. What recourse would there be for cases such as the above, wherethe assessment itself has been deemed faulty?

Much can be said of the NOIA’s apparent willingness to divert funds intended for supportingdisabled people towards the belligerent refusal of those most in need. This inequityisfurther entrenched considering figures which show that in 2019 more than 75% of disabledpeople across Australia did not have legal representation at their NDIS appeals.“

Independent assessments are supposedly intended to “save money”…

Independent assessments are purportedly intended to “save money” for both the governmentand n DIS participants, but already millions of dollars have been drawn from thenois budgetto hire top private lawyers to challenge AAT appeals such as the casementioned above. A report by The Guardian revealed that the NDIA has engaged privatelaw firms in approximately one third of Tribunal appeals, with the governments totallegal bill for such legal cases reaching $28.9m in 2019-20 - an increase from$18.4m in 2018-19.

https://www.theguardian.com/australia-news/2020/nov/11/government-called-in-private-law-firms-to-fight-a-third-of-ndis-cases-figures-show

Flawed pilot trial methodology

One piece of evidence on which the NOIA bases its decision to proceed with Independent Assessments is the outcome of the first Independent Assessments trial, which was held between November 2018 and April 2019. A subsequent report^* was published in September 2020.

A reading this document however, it becomes apparent that there is crucial information missing. Virtually all of the actual data pertains only to the composition of the trial cohort whereas the study’s outcome is skimmed over. Any feedback or other meaningful results indicating trial participant satisfaction are only mentioned in a section comprising under 300 words of the 27-page document.

Pages 19 & 20 represent the only analysis of the trial’s outcome and, most importantly, there is no real distinguishing between results from NDIS participants themselves (i.e., disabled people) versus their representatives (i.e., their carers or support workers). There is notable ambiguity around the word ‘participant’ as it relates to trial participation (vs. NDIS participation). The line on the bottom of page 19 is a good example of this: “The second pilot is delving more deeply into pilot participant’s ratings of having an IA. Of the 27 participants who provided responses to date:• 100% were satisfied with the length of the appointment….”

The Senate committee hearing showed that 110 of responses to the pilot survey came from carers, while just 35 responses originated directly from N DIS participants. This extremely small sample size may also be owed to the fact that only 6% of trial participants even completed the survey.¹³

This indicates substantial resistance among individuals with disabilities toward undergoing processes and participating in trials. To address this issue, NOIA has offered cash incentives ($150 per person) for those involved in these tests; however, such measures are insufficient given concerns raised by Tune Review regarding successful implementation which depends heavily upon willingness amongst prospective/existing candidates working alongside approved functional assessors—a lack thereof suggests disabled people do not feel valued nor engaged within Independent Assessment model.

^* https://www ndis gov au/media/2686/download ^{[13] https ://www smh com au/po Iitics/f ederal/j ust-not -o k-on ly-6-pe r-ce nt -of-ndis-trial-parti ci pants-complete d-survey-20201221-p56pbc html}

The NOIA has ignored internal and external feedback to justify IAs

“Imagine my dismay when, after I provided my considered and constructive feedback, I was told by the assessor that all feedback for these pilot assessments were for internal purposes only and would not be fed back to the NOIA. I am close to tears even thinking about how that felt given how much it took for me to participate and engage with the process.” - Independent Assessments trial participant

In preparing for the rollout of independent assessments, the NOIA published an invitation for consultation on “access and eligibility” with independent assessments. Peak bodies, professional associations, allied health practitioners, NDIS participants, and many other invested peoples and organisations relished the opportunity to give feedback on the process, with the expectation that it would inform the implementation and design of the process and relevant policies. Many such submissions were made publicly available; these include quite lengthy and thoroughly researched, evidence-based papers from highly esteemed organisations within the health and disability sectors seeking to improve the process in order to make it as fair, effective, and scientifically sound as possible.

Submissions on the consultation paper closed on 23 February 2021. However it was just 3 days later, on 26 February 2021, that the NOIA announced the awardees of its tender for the Independent Assessment Panel.

On 25 March 2021, matters regarding the NDIS were brought to the Senate Estimates hearing on Community Affairs. When questioned on the aforementioned timeline of events, N DIA CEO Martin Hoffman confirmed that the tender process and the consultation ran at the same time, and was unable to answer questions about how the consultation feedback could possibly have been incorporated in the tender process.

This is a particularly brazen instance of the government and the N DIA’s attempts to feign transparency while ultimately subverting the system’s checks and balances to wrest much-needed funding from disabled people in Australia.

The N DIA also has a track record of ignoring internal review processes. The N DIA-DSS Joint Submission to the Joint Standing Committee on Independent Assessments cites the Tune Review in defense of its decisions, particularly that it recommends the implementation of independent assessments “as a way to mitigate the current barriers that exist for people with disability seeking to navigate the N DIS which have led to frustration and reduced trust in the NDIS”.

However, its submission conveniently omitted the risks outlined in the Tune Review for such an approach. The Tune Review recognised that one of the biggest risks in implementing IAs would be disengagement from the system, a fear that many advocacy organisations have already voiced. 14 Such a risk is pronounced among ATSI and CALO peoples, and people

14 https ://pro bonoa ustra Iia. com. a u/news/2021 /03/we-know-its-bul Isht -advocates-say-i nde pendent -asses sme nts-wi II-be-a-d isaster -for-nd is-pa rtici pants/

Independent Assessments

Submission 272

The Tune Review therefore cautions that the NDIA “should not implement a closed or deliberately limited panel of providers to undertake functional capacity assessments ( … ) and the panel of approved providers should be dynamic and evolve to ensure the new approach does not drive disengagement”. The Tune Review also recommended that participants have the right to choose which NDIA-approved provider undertakes the functional capacity assessment.

However, the NDIA is clear that participants “in most cases” would be able to only choose from two different provider organisations, with no say in the specific expertise, qualifications, or experience of the assessor themselves. The NOIA has also ignored recommendations by selecting its provider panel through a tender process, locking in a select number of successful organizations into a minimum 3-year contract. This sends the clear message that the NDIA is only selectively responsive to expert feedback, with little regard for the risks to fairness, accessibility and engagement.

the N DIA’s decision to proceed full steam ahead with its current roll-out is thus extremely irresponsible, and its justifications in doing so rely on wilful misinterpretations of the “evidence” that it cites.