Is it fair to be unfair to

everyone?

Inclusion Australia submission on

Independent Assessments to the NDIS Joint Standing Committee

31 March 2021

Inclusion Australia submission on Independent Assessments

to the NDIS Joint Standing Committee

Acknowledgements

Inclusion Australia acknowledges the traditional owners of the land on which this submission was produced. We acknowledge the deep spiritual connection to this land of Aboriginal and Torres Strait Islander people. We extend our respect to community members and Elders past, present and emerging.

Submission preparation

This submission was prepared by Inclusion Australia. To write this submission, we listened to the views and concerns of people with intellectual disabilities and their families and advocates. We also spoke with some leading Australian academics and practitioners in intellectual disability about the proposed changes. We looked at research into functional assessments, the legislation and other important documents to see whether and how the changes fit. This includes the NDIS Act 2013, the Productivity Commission Report 2011, and the Tune Review report 2019.

Inclusion Australia

Inclusion Australia is the national Disability Representative Organisation for the 500,000 Australians with intellectual disability and their families. We bring together groups across Australia who are connected to people with intellectual disability and who share the vision of inclusion in all parts of Australian life.

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Is it fair to be unfair to everyone? ……………………………………………………………………………………………. 1
- Inclusion Australia submission on Independent Assessments to the NDIS Joint Standing Committee ………………………………………………………………………………………………………………………………………… 2
  - Acknowledgements …………………………………………………………………………………………………………. 2
  - Submission preparation …………………………………………………………………………………………………… 2
  - Inclusion Australia …………………………………………………………………………………………………………… 2
  - Contact ………………………………………………………………………………………………………………………….. 2
- Executive Summary …………………………………………………………………………………………………………….. 4
- Introduction ………………………………………………………………………………………………………………………. 6
  - The right to be part of the decision …………………………………………………………………………………… 6
- Rights and safeguards overlooked ………………………………………………………………………………………… 8
- No safeguarding in the pilot ……………………………………………………………………………………. 8
- Not consistent with Productivity Commission recommendations or Tune Review ……………………. 11
- Based on assumptions or insufficient evidence…………………………………………………………………….. 12
  - There are problems that need solutions ……………………………………………………………………… 12
- Not consistent with NDIS as an insurance model ………………………………………………………………….. 16
- Independent assessment tools are not fit for purpose ……………………………………………………….. 17
  - Functional assessment tools are not designed to calculate support budgets ………………………… 17
- Independent assessment tools disadvantage people with intellectual disability …………….. 21
- Other critical issues …………………………………………………………………………………………………………… 24
  - Reasonable & necessary ………………………………………………………………………………………………… 24
  - Goals and aspirations …………………………………………………………………………………………………….. 24
- Conclusion ……………………………………………………………………………………………………………………….. 27
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Executive Summary

This submission is Inclusion Australia’s response to the Australian Government’s plans to introduce mandatory NDIS independent functional assessments. Inclusion Australia is very concerned the new independent assessments, planning and funding processes will seriously disadvantage and potentially harm people with intellectual disability, who make up 21 percent of NDIS participants.

With its purpose to support the independence and social and economic participation of people with disability, and a commitment to enable people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their support, the introduction of the NDIS represented a life changing moment – a sense of relief for people with disability, their families and supporters.

This relief turned to elation with the introduction of the Medicare Levy Amendment Bill 2017 guaranteeing funding for the NDIS, and a speech by the then Treasurer stating:

“By funding the National Disability Insurance Scheme, we are working to lighten their load, to ease their burden and provide a quality of care that they deserve; to give Australians living with a disability the absolute certainty that high-quality care will be provided for them, both now and into the future.

It is not just about easing their physical burden but easing the strain, the anxiety and the uncertainty that they also carry. This Bill is about alleviating that pain, that burden, by delivering that certainty and by ensuring we focus on nothing else but them^[1].”

And yet, in just a few short years, we have arrived at a situation where that certainty is being eroded and the anxiety is growing, as decisions no longer seem to be about high-quality care or focus on people with disability.

Inclusion Australia acknowledges there are some administrative reforms that would benefit the NDIS – David Tune identified as much in the 2019 Review of the NDIS Act. But as with all good public policy, we believe any and all reforms to the NDIS should be predicated on evidence - evidence of the problem and the impacts of proposed solutions, and be designed with input from end users.

The NDIS however has not followed this proven policy path. It has proposed the introduction of independent assessments as a fait accompli. This decision has far reaching implications, beyond the fact it will affect individuals’ access to the NDIS and the funding they receive.

The decision itself lacks transparency. No evidence has been offered to demonstrate the benefits of universally introducing independent assessments. It is not consistent with either the Tune Review or the Productivity Commission recommendations, and risks associated with the decision have not been adequately identified or considered.

Independent assessments are cause for concern. Setting aside the rationale (or absence actually) of requiring an independent assessment, many people with disability will not be able to sufficiently advocate or articulate their needs. As a result, there is no doubt people with disability will be worse

^[1] The Hon Scott Morrison, MP Treasurer, Second Reading Speech Medicare Levy Amendment Bill 2017 (National Disability Insurance Scheme Funding), August 17, 2017.

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off. Not because their needs have changed, but because the method by which their needs are assessed has.

Insufficient regard has been given to safeguarding people with intellectual disability and behavioural istues from the impact of requiring them having to engage with complete strangers or risk losing the support previously considered to be ‘reasonable and necessary’.

The significance of introducing independent assessments cannot be overstated. But looking beyond the issues associated with their proposed introduction is a much larger issue. One that goes to the integrity of the NDIS framework and the principles upon which it is founded.

While mandatory independent assessments will limit the ability of people with disability to exercise their rights to privacy and choice and control – central tenets of the NDIS Act – the NDIS has also ignored the principle of involving people with disability in the decision-making processes that affect them.

Despite mandatory independent assessments representing structural reform to the NDIS, the organisation has failed to consult people with disability about their introduction. The NDIS may argue it asked people with disability about how to introduce the reforms. However, by that stage the decision on the scope and application of the reforms had been made. A decision that impacts access, planning and funding and materially affects people with disability, as individuals and as a class of individuals, and yet they were not consulted.

This raises concern that if the NDIS does not consider it necessary to consult people with disability about these ‘big’ decisions, how they, and their families and carers will have certainty and confidence that people with disability will receive the care and support they need over their lifetime^[2].

Inclusion Australia has a range of specific concerns about the independent assessment tools and their proposed application. These include a lack of transparency around tool selection, application beyond their purpose, questions on the efficacy of NDIS developed tools and the absence of independent verification.

Inclusion Australia calls on the government to stop the current rollout of independent assessments and the associated reforms, and consult with the disability community on appropriate ways to improve Scheme access and planning.

^[2] NDIS Act, Section 4(b), General Principles Guiding Actions of the Act

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Introduction

Inclusion Australia believes (the proposed) mandatory NDIS Independent Assessments, and the use of these to determine eligibility to, and underpin planning by the NDIS, is not consistent with the NDIS Act and the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).

While Inclusion Australia strongly agrees there are opportunities to improve the NDIS and make it more equitable, it also firmly believes this must be achieved within the principles set down by the NDIS Act.

The proposed introduction of independent assessments and the approach taken by the NDIA not only undermines the principles upon which the NDIS Act was established, it also undermines any and all confidence the NDIA is, as it is claiming, ‘putting participants at the centre of everything we do’.

The right to be part of the decision

The rights of people with disabilities are at the heart of the NDIS Act. These rights are reflected in the Act’s Objects, which include to support the independence and social and economic participation of people with disability, and its Principles which include enable people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports.

The General Principles of the NDIS Act were established to guide all actions that are carried out under the Act, and they apply to everyone involved in those actions. The Objects and Principles are absolutely fundamental to people with disability having lives of full inclusion in Australian society.

“We are ageing parents. Our son has Down syndrome. We fought for the NDIS to make sure he could have a good life and we would know he was supported when we no longer can. I cried when I heard what the government is going to do to the NDIS. I’m terrified for his future if he can’t get enough support funding.”

Lack of consultation

The government and NDIS claim to have consulted with people with disabilities. However, they have not consulted people with disability about threshold questions to any change process; that is whether the proposed changes, including independent assessments and related processes, are needed and appropriate. This decision was made by the NDIS.

Its consultation papers on independent assessments clearly show the NDIS^[3] only asks people how they think the NDIS can best make the proposed changes. People who participated in the very few ‘consultations’ say they were shocked, dismayed and angry to learn the decision to make changes had already been made.

We have seen in recent weeks the NDIS has contracted organisations to carry out independent assessments. This is before considering the content of the 769 consultation submissions it received. NDIS CEO Martin Hoffman defended this approach in Senate Estimates on 25 March, saying that independent assessments are “government policy”.

^[3] Access and eligibility policy with independent assessments | NDIS

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Consultation for the purposes of refinement and finalisation is not engaging people with disability as equal partners as required by General Principle 8. The NDIS is not upholding the rights of people with disability by making these changes without them.

Inclusion Australia has been repeatedly told by the NDIS that these changes are going ahead, whether we agree with them or not. It now raises the question of whether the principles within the NDIS Act apply to the NDIS, and if so, who will ensure they are upheld?

Changes are based on mistrust of people with disabilities

Inclusion Australia believes the government’s fixation on assessments that are independent of the participant is based on mistrust of people with disability. Suggestions – without any evidence – have been made that people with disabilities ‘game’ the current system. However, information in the public domain indicates NDIS fraud is carried out by false providers, not false participants.

The NDIS says that independent assessments will lead to fairer planning and funding decisions when compared with assessments done by a person’s own doctor or allied health practitioner. However, it has not provided any evidence to support a claim of unfair access, or should it be occurring, that the cause of unfair access and planning decisions is poor reports from people’s doctor or therapists.

Additionally, given the costs associated with engaging more than 700 people as independent assessors, the NDIS must consider whether the quantum of ‘gaming’ has significant financial implications. However irrespective of any savings it may achieve, the NDIS is risking the safety of individuals, and will undermine confidence and belief in the NDIS, and may inadvertently convey the message people with disability are dishonest.

Research by Duffy and Etherington shows assumptions that disabled people and families (as well as frontline professionals) can’t be trusted, have been very damaging to people and to the resource allocation system in England.^[4] There are currently many legal cases happening in the UK as a result of their independent assessments system causing serious harm to many people.

^[4] Duffy S, Etherington K. A Fair Budget: A discussion paper exploring the role of the RAS in the development of self-directed support. The Centre for Welfare Reform, 2012.

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Rights and safeguards overlooked

Independent assessments involve allied health practitioners – strangers – going into a person’s home, potentially for several hours, and asking personal and sometimes intrusive questions. This is confronting and disconcerting for people with disabilities, and some have described it as embarrassing and said they felt ashamed as well as very anxious.

Retelling the most intimate details of disability to a stranger is simply not consistent with a person’s right to privacy.

“What other group of people in Australia is expected to lay their personal lives bare to strangers to justify their place in society?”

Parent of a young woman with intellectual disability

No safeguarding in the pilot

Inclusion Australia is appalled that people with intellectual disability, who are especially vulnerable to abuse and exploitation, have been put at greatly increased risk. Even the most basic safeguarding during the pilot does not seem to have been on the radar for the NDIS or NDIS Commission.

Neither the NDIS nor NDIS Commission know who is responsible for safeguards during the pilot

During the Senate Estimates Hearing of 25 March, both the CEO of the NDIS and the CEO of the NDIS Quality & Safeguards Commission were asked about participant safeguards during the independent assessments pilot. Both replied that they did not know / were not sure.

This lack of clarity shows complete disregard for the safety of NDIS participants during the Independent Assessment pilot.

Inclusion Australia has received reports that people who have contacted the NDIS Commission with concerns about independent assessors during the pilots were told they don’t have jurisdiction over independent assessors employed by contracted companies.

People with disability have a fundamental right to make complaints about services they receive. This right is included in the Objects and Principles of the NDIS Act as well as in the National Disability Service Standards. It is deeply concerning that people with disability have been required to have strangers in their homes, and the agency responsible for this, the NDIS, is unable to advise on who is responsible for overseeing their conduct, and how inappropriate conduct and any other concern could be raised.

Reliance on informants

There is no evidence the NDIS has prioritised safeguards throughout the independent assessment process or understood the vulnerability of people who are completely reliant on informants. The lack of an appeals process underestimates the probability of unintended outcomes.

Most people with intellectual disability will not be able or well equipped to take part in an independent assessment without significant support. Some will simply not be able to attend for part or all of the assessment due to previous trauma, the extent of their disability or because the process

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is overwhelming. Most will rely on others such as family or support workers to provide much or all of the information the assessment requires. This heightens people’s anxiety, reduces their dignity and self-worth and increases the risk for the person.

“We have had many assessments in the past. Mostly my son will not cooperate when he knows that he is being assessed and especially with someone unknown to him.”

Parent of young man with intellectual disability

For example, the risk may be that their informant doesn’t answer the assessment questions adequately or unintentionally provides incorrect information that leads to an inaccurate assessment and therefore an inadequate plan and support budget.

Unfortunately, the risk could also be that the informant does not have the participant’s best interests at heart, has a conflict of interest and/or deliberately provides incorrect information which will result in disadvantage and harm to the person. There are also some people who may not have anyone in their lives who can speak up for them.

The NDIS has not provided details of planned safeguards around these reforms that will uphold people’s rights, recognise the risks, and protect people with intellectual disability from disadvantage and harm.

“I’m worried they will switch my words around. It helps if you know the assessor and trust them. I have my own occupational therapist and psychologist. I don’t want to tell the same story every time.”

Person with intellectual disability

No right of appeal

The Tune Review listed a number of key protections that would need to be embedded with the introduction of Independent Assessments. These included participants having the right to challenge the results of the functional capacity assessment, the ability to undertake a second assessment or seek some form of arbitration if they are unsatisfied with the assessment.

The proposed process does not provide participants with a right to challenge the results of an assessment, the ability to undertake a second assessment or seek some form of arbitration.

Given the significant impact an assessment can have on a person’s life, their access to the NDIS, and their access to supports, it is insufficient that a second assessment can only be requested in narrow circumstances, and that otherwise a participant must rely on a complaints process.

No support for decision-making

The NDIS has not acknowledged that supported decision making needs to be in place to enable many people with intellectual disability to participate in assessment and planning processes.

While a consultation paper is in development, there has been no urgency in ensuring that support for decision-making will be available at the time independent assessments are introduced.

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Accessible information

The NDIS has not produced accessible information, including material in Easy Read, about the assessment process to help people understand and prepare for an assessment. They have not said how they will make the information and language used in an assessment more accessible.

The NDIS says that some tools, such as the WHODAS, are available in other languages, and interpreters will be provided if people need them. However, the language used in the tools is not necessarily accessible to people with intellectual disability, and many other people, and would require the assessor to be skilled in speaking in plain language without losing the intent of the questions.

Communication support needs

People with intellectual disability communicate in many different ways. Many people can only be understood by people who know them well. Real communication with people with intellectual disability takes time, understanding and expertise. It is unlikely that many independent assessors will have the skills needed, not to mention the time.

Assessors who do not have the expertise or experience to carry out an assessment for a person will not produce a valid score, resulting in disadvantage to the person. An assessor who does not know the person could very easily cause significant anxiety or cause them harm by their words or actions.

“He will be completely stressed out to have to be with an unknown person and answer questions for hours. He needs regular breaks every 10 minutes or so even in the classroom he is so familiar with.”

Parent of teenager with intellectual disability

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Not consistent with Productivity Commission

recommendations or Tune Review

Inclusion Australia is very concerned the NDIS is reinterpreting the Tune Review recommendations and ignoring important and salient details about independent assessments in the Productivity Commission report.

The NDIS has repeatedly justified independent assessments as having always been intended to be part of the NDIS, beginning with the Productivity Commission Report in 2011. The Productivity Commission did recommend independent assessments play a part in the NDIS. However, the Productivity Commission also made recommendations about independent assessments that seem to have been ignored. This includes making sure people’s goals are fundamental, and the importance of collecting information from multiple sources to help make appropriate decisions.

The NDIS says independent assessments will be compulsory for people who apply to enter the NDIS, and for people already in the scheme to determine funding support.

The NDIS also quotes the Tune Review as supporting Independent Assessments. However, Tune did not suggest compulsory independent assessments for everyone. Tune said that the NDIS should have the power to require some people in some circumstances to have an independent assessment. Tune said that this power should be discretionary. By its very definition this is a power that could be used, and would sometimes be useful or necessary. Discretionary powers are not required to be used, ever.

Both the Productivity Commission and the Tune Review state the NDIS needs to co-design and consult properly with people with disability. This has not happened.

The Tune Review also stated the NDIS should be transparent and not hide information, but the NDIS has not acted with honesty and transparency regarding independent assessments. There is still a lot of information not available or not being made available about the changes.

Inclusion Australia says that it is unacceptable and dishonest of the government and NDIS to deliberately reinterpret the Productivity Commission report and the Tune Review to suit the government’s policy direction. They must stop this selective use of these documents to justify and validate independent assessments and other proposed changes.

An outdated approach

When the Productivity Commission suggested the use of independent assessments, the idea at the time was based on the use of functional assessments by no fault accident compensation schemes. In the decade since this suggestion, injury compensation schemes themselves are now moving to trans- disciplinary assessment teams because of challenges with functional assessments.

In fact, the NDIS previously trialled independent functional assessments in 2013, using the Support Needs Assessment Tool (SNAT) to see if it could be used successfully to calculate people’s supports and funding. It was found to be not fit for purpose and discontinued after one year. Further assessment tools were trialled in 2015 and 2016. Despite repeated efforts these repeated efforts the NDIS has yet to demonstrate the benefits of independent assessment tools.

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Based on assumptions or insufficient evidence

There is no doubt that some people do have problems with getting into the NDIS and getting the support they need. However, the NDIS has not shown any evidence that independent assessments will make the NDIS fairer. This applies for both access and eligibility and for planning and support budgets. Using the same tool across both eligibility and planning does not equate to validity or fairness.

The NDIS has produced no evidence that the cause of unfair access and planning decisions is due to poor reports from people’s doctors or therapists. Reviews often result in better outcomes for the person. Surely this means the issue is that NDIS staff did not make the best decision, rather than there being a problem with the information and reports people gave them?

There are problems that need solutions

The NDIS says that independent assessments will solve four big problems:

1. Some people have trouble getting into the NDIS because they can’t afford the expensive
   assessments needed to show evidence of their disability.

2. There are often big differences in the plans and funding people with similar support needs
    receive, and this is unfair.

3. Participants need more flexibility in how they use their funding, instead of spending time
  and money proving their needs each year.

4. They have also said the NDIS is starting to cost more than they expected it would, and the
  new system will help to keep costs down.

Inclusion Australia agrees that the NDIS needs to be a fair system and that people should have more say on how they use their support funding. We also agree that people should be able to get free assessments when they need them to get into the scheme or as part of working out what they need support for.

But we do not believe that compulsory independent assessments for everyone, and changes to the NDIS planning and support funding process are the answer. There is no evidence the proposed approach will address any or all of the problems the NDIS has identified. In fact, we believe that the new system will create more disadvantage, risk and harm for people with intellectual disability.

As one parent asked Inclusion Australia, “Is it fair to be unfair to everyone?

Equity of access

Free assessments are only available after proof of disability has been established

The Government and NDIS have stated that using independent assessments will make accessing the scheme fairer and simpler. They say it will be fairer because currently some people can afford reports from medical and allied health specialists and some can’t. So, they will create a level playing field where everyone will do an independent assessment.

However, independent assessments will not make scheme access simpler. The NDIS consultation papers made it clear people will still need to get medical confirmation they have a permanent disabling condition. Then they will also have to have an independent assessment (often the same

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assessment needed for proof of disability), therefore adding an extra layer of complexity for many people. Additional layers create more problems for the people most at risk.

Evidence shows all people with certain conditions will need life-long support

The NDIS says eligibility and support will no longer be based on diagnosis. This disregards the fact there are a large number of people whose conditions always mean they need significant lifelong support. Currently, the NDIS acknowledges this through Access List A, which provides people with the listed conditions guaranteed access to the scheme. It makes no sense (economic or otherwise) to make people on List A, whose conditions always mean they need significant lifelong support, jump through costly hoops just to get into the Scheme.

Inclusion Australia believes List A should be maintained and access data reviewed to ensure people with all conditions requiring significant lifelong support are included. For example, we understand that every person with Down syndrome who has applied to join the NDIS is now a participant, so it makes no sense that Down syndrome is currently not a condition included on List A. We expect that access data will show other conditions in the same situation.

Variation of plans

Currently there are significant differences in support funding for people who live in different areas but have similar needs.

People told the Tune Review they felt NDIS planners did not understand the nature of their disability or appreciate the challenges they encountered in everyday life. They said a big problem is the NDIS doesn’t make it clear what information they need people to give them. They also said a key reason people get different and sometimes insufficient support funding is NDIS staff often do not look at the professional reports and other information participants have provided.

The Tune Review said that these things have caused unfairness and resulted in people’s needs not being met. Tune also said this had led to people asking for reviews of their plan and funding.

A solution without evidence

The NDIS Consultation Papers on Independent Assessments note there are ‘many examples of inconsistent and inequitable access and planning decisions’ by their own staff. No doubt this has led to many appeals at great cost to the agency, yet the causes have not been investigated.

The government has suggested people who are better educated and living in higher socio-economic areas get more NDIS funding than people in poorer areas because they can advocate better. This may well be part of the reason, but there are other likely reasons for some people getting more funding.

For example, better off areas are usually in cities where more people live, and often where people with disability move to so they can access supports and services. Less well-off areas include country towns and remote areas where there aren’t many support services, and fewer people generally. One reason people in higher socio-economic groups may get more funding is because they have more access to the services they need.

The government communications imply people in more well-off areas get more funding than they actually need. There is no suggestion the actual problem could be that people in lower socio- economic areas don’t get enough. Either way there has been no evidence to support these assertions. The current assumption seems to be there are greater numbers of people getting excess

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funding, than missing out. If the independent assessments will ensure all people get fair support, this could actually result in additional cost to the NDIS.

It is likely there are a number of reasons why support funding is, or appears to be, unfair. However, the government and NDIS have not investigated these, nor provided any evidence to explain what has caused these differences. No information or economic modelling has been published to show that compulsory independent assessments will lead to people getting fair support budgets. The NDIS needs to identify the actual reasons for differences in funding levels, and then work appropriately to fix them.

The NDIS claims people’s own health and allied health practitioners would have ‘sympathy bias’ and a conflict of interest as they stand to benefit from the participant getting NDIS funds. No evidence has been provided to back up this claim, which is insulting to the professionals concerned. The alternative, assessments carried out by people who don’t know you, your history, and who may not have the required level of expertise regarding your disability, communication and circumstances, is unlikely to provide a more accurate assessment. It is simplistic to assume it would.

It is also not supported by the success of matters taken on appeal to the Administrative Appeals Tribunal (AAT). The AAT 2019 Jake Castledine decision confirmed that reports by qualified therapists who have interacted with the participant are better evidence of reasonable and necessary supports than a number of hours allocated by the NDIA; and

Trials lack rigour and transparency

Inclusion Australia has serious concerns about the way the trials and current pilots have been conducted, including ethics, safeguards, lack of rigour and scientific validity, and lack of transparency and honesty about the trial results. The trial of independent assessments should have been conducted properly through a university.

The NDIS has carried out very limited trials of independent assessments involving small numbers of people with selected disability types. While the COVID pandemic stopped the trials, it didn’t stop the NDIS forging ahead with its plans to enforce compulsory independent assessments.

The NDIS is currently paying participants $150 to have an independent assessment. Many people who have taken part are saying their experience was not good. People are also saying they were not given a survey to provide feedback on the experience, yet a high level of satisfaction during the current pilot is claimed. However, when the figures provided by NDIS CEO at Senate Estimates on 25 March are calculated, it is just 168 people out of 1,800 who had been assessed at that date who gave some positive feedback about their experience.

No alternative solutions explored or tested

There are a range of alternate reasons for the problems outlined earlier – each of which would suggest alternate solutions. However, the government has jumped straight to the independent assessment model.

There has been no engagement with people and organisations with appropriate expertise, nor any investigation of causes or trial of other solutions that would have been more appropriate and likely more effective in addressing the problems. For example:

An investigation as to why NDIS staff are making so many ‘inconsistent and inequitable access and planning decisions’ leading to costly appeals.
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Provide guidance material and training to NDIS staff to improve the quality and consistency of planning and funding decisions.
Use of AAT decisions to improve the quality and consistency of NDIS staff planning and funding decisions.
Introduction of Independent assessments in a discretionary way as needed (per Tune Recommendation 7), instead of imposing mandatory assessments on everyone.
Trial of current practitioners using mandated fit for purpose tools.
An investigation about the lack of employment outcomes for NDIS participants despite the huge amounts of money poured in. The very recent changes for people who need high support have not been given a chance to show they work.
A costing trial between supporting people with intellectual disability in individualised settings compared with congregated accommodation. Our experience shows that when people’s ‘happiness quotient’ goes up, the costs of behaviour and other supports comes down, as does the use of restrictive practices. This need to be formally tested.
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Not consistent with NDIS as an insurance model

Inclusion Australia believes the way NDIS intends to use independent assessments is not an insurance investment approach, but a simplistic attempt to save money up front. Our belief, backed by leading academics and practitioners in intellectual disability, is it will create increased costs as people appeal eligibility and funding decisions, and due to the disadvantage and harm caused by reduced or delayed supports that lead longer-term to increased support being required.

Leading experts told Inclusion Australia that the proposed NDIS functional assessments are not appropriate for allocating resources within the NDIS. One explained that the life trajectories of people with disabilities are not as clear cut as people who have sustained injuries. Calculating compensation for a person who has been injured would include rehabilitation and healing costs. For people with disabilities in the NDIS, costs relate to lifelong supports.

Another said, “We know that the adaptive behaviour/skills of people with intellectual disability tend to be quite stable over time; it is changes in their health, mental health and life situations that dictate their changing support needs over time. These are often unpredictable, but the NDIS seems to be trying to make predictions for everyone”.

They said the NDIS would do well to consider how it is operating as an insurance model. This means investing in people up front for the best results over time. “You need to do it right and get it right from the start or you will be increasingly off track in providing the supports people need – like a moon-shot that doesn’t get to the moon.”

“It also means investing in inclusion. The NDIS needs to understand that if people don’t get adequate funding their needs will likely increase. For example, increasing mental health concerns and behaviour support needs. If they persist in congregating people to save money, they will have to deal with these kinds of consequences.”

Leading academic in intellectual disability

Research has shown that investing in supports to help people develop their skills and capacity results in reducing their support needs over time.^[5]

Investing in inclusion also means developing community capacity, as recommended by the Productivity Commission (known then as Tier Two). This has been happening in recent years through the Information Linkages and Capacity Building (ILC) program. Individual funded plans are only part of the NDIS as an insurance scheme. Building community capacity is a critical element of the NDIS, supporting all people with disabilities (not just NDIS participants) to use mainstream services and supports, to have jobs, to be involved in community activities, to participate in and contribute to the social and economic life of the community.

Inclusion Australia can see little evidence that the NDIS is committed to continuing to invest in building this community capacity, despite its importance to the overall success of the NDIS.

^[5] Verdugo M, et al. A systematic review of support needs in people with intellectual and developmental disabilities. International Journal of Environmental Research and Public Health, 2020.

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Independent assessment tools are not fit for purpose

The NDIS produced a report called Independent Assessment: Selection of Assessment Tools. In it, they say that independent assessments will help them make fair decisions about:

Eligibility – Whether people can get into the NDIS, and
Funding within people’s plans so they get “high quality appropriate supports”.

Inclusion Australia has a range of concerns about the independent assessment tools and their proposed application. These include a lack of transparency around tool selection, application beyond their purpose, questions on the efficacy of NDIS developed tools and the absence of independent verification.

Functional assessment tools are not designed to calculate support budgets

Inclusion Australia is extremely concerned that the NDIS appears to be disregarding and rejecting scientific evidence and expert opinion. We spoke with several leading Australian academics and practitioners who have considerable expertise regarding assessment tools. They said that the selected assessment tools were not the most suitable for NDIS independent assessments nor for determining personal support budgets.

They shared the following information and concerns.

“The tools chosen are only valid for the purposes they were designed for. WHODAS is easy to administer but much of the literature indicates it has been used in national studies, especially in low- income countries, which is one of the WHO’s specific focus. Not unexpectedly, it has a heavy focus on health and disease”.

“NDIS could have done much better in selecting tools. The translation from functioning to support needs is not straightforward. The tools conflate function, support needs and funding; this is not OK. I have real concerns about the core sets used and graphs used in the report on tool selection”.

“The NDIS says the tools are based on ICF, but they are weak on a person’s environment, living arrangement, and the informal supports they have. Formal supports are very different, with very different costs. These are not reflected with the proposed tools. I am concerned that people needing formal support will not receive an adequate budget”.

“The tools are blunt and not nuanced to people’s goals and needs. Will these tools help assessors know if a person’s capacity could be improved?”

Tools that assess support needs have been rejected

The Productivity Commission report recognised there was no single assessment tool suitable for everyone. However, it contained information about several assessment tools that could be part of a ‘toolkit’, including I-CAN, I-CAP and SIS. Inclusion Australia understands these were rejected by NDIS because they assess support needs rather than levels of function. This is inconsistent with research showing that measuring support needs predicts funding needs better than measuring functioning.^[6]

^[6] Arnold S, Riches V, Stancliffe R. Does a measure of support needs predict funding need better than a measure of adaptive and maladaptive behavior? American Journal on Intellectual and Developmental Disabilities. 2015. Vol 120. No.5, 375 – 394.

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Despite this evidence, functional assessment tools not designed to be used to make decisions about personal support budgets have been selected by the NDIS.

The academics we consulted with questioned whether there was a reliable and valid way of translating functional assessment scores to a personal budget.

“I cannot see any algorithm which would accurately transfer the test results of these tools to an index of support needs. This would need extensive psychometric analyses to ensure validity and reliability. We did this with the I-CAN”.

“There is no established means of translating these clinical measures of adaptive behaviour (no matter how valid and reliable for clinical assessment) to levels of support in the context of the NDIS.

So, given a person’s assessed level of adaptive functioning – subsequently what type, frequency and duration of support is reasonable and necessary for them to achieve their identified goals, how is this support to be provided and ultimately costed?”

Trevor R Parmenter AM. Professor Emeritus. Sydney Medical School. Faculty of Medicine and Health. University of Sydney

They said some of the tools the NDIS did not select were much better and had been designed to provide information that would give transparency through from function to costing.

“Tools such as the Scales of Independent Behaviour Revised, the ICAP, the Supports Intensity Scale, and the iCan are all designed to bridge the gap between skills and abilities and subsequent support needs in the context of service provision, and have been shown valid and reliable for people with intellectual and developmental disabilities. The iCan (now in version 6) in particular has been developed with an Australian service and support context in mind, and has been subject to international scientific scrutiny and the focus of peer-reviewed publications.

For people with intellectual and developmental disability, where the appraisal of support needs is arguably the most complex, we need specialist tools that consider both abilities and behaviours, and reliably translates clinical presentation into practical support needs relative to people’s goals.”

Keith R. McVilly PhD MAPS FCCIP. Professor of Disability & Inclusion, Director – Master of Social Policy. The University of Melbourne. School of Social & Political Science

Verdugo et al, found that I-CAN and SIS are the most researched tools to assess support needs. It is also important to note that I-CAN is an Australian assessment tool that uses the WHO framework and includes relevant context.

Inclusion Australia believes these tools will further disadvantage First Nations and Culturally and Linguistically Diverse communities. One size fits all tools don’t account for cultural differences or language. These populations and people with psychosocial disability are already under-represented in NDIS. People with intellectual disability in these populations will be even more disadvantaged. How will the selected tools create fairness for them when it comes to eligibility for the scheme?

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NDIS has developed its own tools and measures

The NDIS has developed a range of tools and measures that will be in addition to the recognised functional assessment tools. These NDIS-designed assessments form part of the process, yet there is no information on what they contain, how they will be used or whether they have been subjected to the same rigorous independent assessment as other tools.

These tools raise questions such as: What do the NDIS designed tools include? How do we know these will be applied appropriately, fairly, and consistently? What weighting do they have in assessing the support budget? Will people be told about these before their independent assessment?

The tools include:

Participant interview and participant information: There is no information from the NDIS on how the very personal information collected will be used and whether their confidentiality will be protected.
Participant environment measures: For adults, this will be the CHIEF (Craig Hospital Inventory of Environmental Factors). However, for children, a new NDIS developed ‘Participant Environment Measure’ will be used. There is no information available about the development of this tool.
Personalised Budget Tool: The Personalised Budget Tool, developed in secrecy and currently under test and refinement, will be used to calculate support budgets using data from the functional assessments. This calculator has not been examined by external academics or expert practitioners.

Unskilled assessors will be used

The concerns of foremost academics and practitioners, as well as official statements from peak allied health bodies give Inclusion Australia cause for concern about the expertise and experience of the people administering the independent assessment tools and how they will be interpreted.

“These tools need to be administered and interpreted within the World Health Organisation’s bio- psycho-social assessment framework and the integrated model of human functioning and systems of support as developed by the American Association on Intellectual and Developmental Disabilities (2021), that takes into account multiple assessments and including historical documentation and consultation with those who know the person well across multiple environments. One-off or very time limited ‘independent’ assessment by a person who has no prior knowledge of the individual, and with minimal if any explicit reference to prior assessments by practitioners experienced with the person, are fraught with difficulty.”

Keith R McVilly PhD MAPS FCCIP. Professor of Disability and Inclusion. Director – Master of Social Policy, School of Social and Political Sciences, The University of Melbourne.

Academics and Practitioners we spoke with said they are concerned that a single assessor would carry out the Independent assessments– that the NDIS proposals lack a multidisciplinary approach.

The NDIS says that when people are required to have an independent assessment, they will be able to choose an allied health practitioner to suit their disability. However, we know that during the

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trials, this has not been the case. For example, a man with Autism has spoken publicly about his very negative experience when he was assessed by a physiotherapist.

The companies contracted by NDIS to carry out the independent assessments have begun recruiting allied health practitioners to be assessors. Advertisements have revealed some companies are encouraging new graduates to apply. This contradicts NDIS assurances that assessors will have the appropriate level of expertise and adds to our concerns.

It is important to know that the following allied health professional bodies have made public statements expressing concerns about independent assessments:

Occupational Therapy Australia
Speech Pathology Australia
Australian Physiotherapy Association
Australian Psychological Society

Their concerns include the inappropriateness of the assessment tools and the impact of the reforms on people with disabilities, going as far as to describe it as fundamentally altering the Scheme’s purpose. Occupational Therapy Australia stated that functional assessments “are not a suitable process on which to base the support budgets of vulnerable Australians.”

They also said the NDIS did not consult adequately or correctly with them, was not transparent in its dealings with them and had already decided how it would run independent assessments. They are also concerned about the negative impacts of independent assessments on their members. Peak body, Allied Health Professions Australia (AHPA), met with NDIS in 2020 to discuss their concerns about these matters.

Inclusion Australia is concerned that individual assessors will not have a consistent high level of skills and may be assessing outside their expertise. This creates risk for people with disability, and also professional risk for the assessor.

It is also unclear how assessor organisations will be subject to the NDIS Code of Conduct or other mandatory requirements, when the participant is not provided with a copy of the assessment.

Disability specific tools are being generalised

Inclusion Australia is aware an additional assessment tool was added during the current pilots. We believe this happened because many people have told the NDIS the functional assessment tools do not measure support needs. In the current trials, assessors have also been using a tool called Care And Needs Scale (CANS). This tool was designed to measure the level of support needs of people with traumatic brain injury, yet it is being used in assessments of people with all kinds of disabilities. According to the CANS manual, the tool should be administered by “health professionals with experience working in a rehabilitation setting with people with brain injury”.

One of the academics we consulted said “CANS is not appropriate. It is designed for use with people with traumatic brain injury. It is a very gross assessment of key support needs. There’s no nuance. For example, the question on money management requires just a yes/no answer”.

NDIS is using tools that are not designed or appropriate for people with every kind of disability. These tools were not designed to provide data that can reliably, consistently and transparently inform personal support budgets.

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Independent assessment tools disadvantage people with

intellectual disability

Inclusion Australia and the academics we consulted believe that the NDIS selected assessment tools will disadvantage people with intellectual disability:

“People with intellectual disability are disadvantaged by assessment tools compared with other people with disability. The questions demand nuanced responses in the case of people with intellectual disability. It would also require a very skilled and trained person to obtain an accurate profile on many of the items. I can’t imagine a person with high support needs being able to respond with information that is reliable for the purposes of the assessment. It would need to tap into people who know the lived experiences of people with high support needs.”

“The tools don’t take into account things like acquiescence - many people with intellectual disability will tend to give acquiescent answers (always saying ‘Yes’), or might resist being assessed, and the impact of these when being assessed by someone they don’t know. The assessments also don’t take into account the dignity and feelings of people when others are answering for them about what they can and can’t do. Where is supported decision making?”

“The tools don’t reflect the effect of having an ID on your capacity to meet your health and other needs, for example, taking your medications. They don’t reflect the amount of support and supervision people with intellectual disability need with these kinds of things.”

In particular, Inclusion Australia is concerned that the selected assessment tools and how they are used do not take into account issues that are critical for people with intellectual disability such as:

The need for supported decision making
Acquiescence^[7] (a tendency to go along with what is asked or suggested, or saying what they think the person wants to hear; accepting and complying passively, agreeing without question or objection)
The impact of long-term segregation
The impact of these when being assessed by someone they don’t know
The dignity and feelings of people when others are answering for them about what they can and can’t do
Assumptions of transfer of skills. For example, the skills to make a cup of tea at home don’t necessarily transfer to making one everywhere else
Refusal/fear of Independent Assessments

^[7] The Speak Out resource Communication – it’s not a Spectator Sport describes acquiescence as follows: “Many people with intellectual disability say ‘yes’ to questions or accept and agree with things, regardless of what has been asked, and often without really wanting to. This is called acquiescence. People with intellectual disability often attempt to mask their communication difficulties to avoid the stigma of being labelled as having a disability. It is very common for people to adopt a passive communication style, allowing the more powerful person to control the conversation.”

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Further, many of the tools rely on binary responses. That is ‘yes’ or ‘no’. This approach fails to capture the detail required to make sense of a person’s ability and the support they may need in the environment they live. For example, while person with an intellectual disability may state they are able to walk one kilometre, they may not be able to safely navigate roads and traffic. Another example would be the ability of a person with intellectual disability to dress themselves. While strictly speaking a person may be able to clothe themselves, they may not be able to dress appropriately for the weather or social situations.

Inclusion Australia is particularly concerned for people with intellectual disability who don’t have informal supports to help them navigate the system. They will be disadvantaged by the extra layer of evidence needed and the use of inappropriate functional assessments. They will also be at risk of potentially serious consequences such as mental illness, homelessness and involvement with the justice system.

“My 18 year old son has autism, ADHD, intellectual disability with very limited language and complex support needs. He wouldn’t be able to comprehend the questions being presented to him and just say “YES” to all questions presented by an assessor who doesn’t know him at all and just tick the box. The conclusion which is based on the false answers he gives would be disastrous in terms of the level of his support needs and the funding allocated”

Parent

‘Disability neutral’ tools can harm people with intellectual disability

The NDIS says the selected tools are ‘disability neutral’ to ensure fairness and consistency. However, research shows that this dedifferentiated approach creates inequity for people with intellectual disability.

“The dedifferentiated design of the NDIS, and the subsequent changes, have not taken good account of issues specific to people with intellectual disabilities. This contention is supported by a consistent trend in the small body of evidence that suggests adults with intellectual disabilities experience poorer outcomes compared to other participant groups. The analysis has highlighted a fundamental mismatch between the type of planning most suited to people with intellectual disabilities (i.e. facilitated and drawing on multiple sources of knowledge about the person, their context and needs), and the administrative-standardised approach of the NDIS.”

Professor Christine Bigby, PhD, GAICD. Director, Living with Disability Research Centre. Chair, Academic Board, School of Allied Health, Human Services and Sport, La Trobe University.^[8]

The Productivity Commission report said an assessment tool “should only be used to assess the needs of particular groups where its reliability and validity have been established for that group”. It said people had “raised concerns that the assessment tools used by the NDIS would fail to capture fully their particular needs”.

^[8] Christine Bigby (2020): Dedifferentiation and people with intellectual disabilities in the Australian National Disability Insurance Scheme: Bringing research, politics and policy together. Journal of Intellectual and Developmental Disability.

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Inclusion Australia believes the new system will create more disadvantage, risk and harm for people with intellectual disability. We are concerned that people with intellectual disability are a specific target of the changes – for example, as the biggest users of Supported Independent Living (SIL) supports. Given high SIL costs are a specific NDIS concern, there is a risk that people with intellectual disability will experience a disproportionate reduction to plan budgets.

Our experience, for example with Disability Employment Services, is that when systems are standardised, people with intellectual disability get left out and their outcomes fall behind other people with disability.

It is possible that people may not even be given enough funds for their essential supports. This will have serious consequences for some, especially people with intellectual disability. We fear this could lead to a return to congregate care because that is all people can afford. It is likely some people will also need resources from other sectors for supports such as mental health and homelessness. So, people not getting the right supports from NDIS could result in cost shifting to state-run services.

Exemptions can harm people with intellectual disability

People with intellectual disability are likely to be highly represented in the group requiring exemptions. This group is likely to include:

People with intellectual disability and complex communication needs. If a person has little or no speech, chances are the assessor will not be experienced in using AAC and there is little chance their functional capacity will be fairly assessed. It is likely to be assumed they cannot communicate, and it will be entirely the views of others that contribute to the functional assessment
People with intellectual disability and complex behaviour support needs.
People with intellectual disability and other disabilities.

The NDIS has said that there will be exemptions for some people, but has not provided information on who may be exempt or why and who will make the decision. People with high support needs are likely be exempted, but no information has been provided regarding cut off points for the many people who have multiple conditions and high support needs.

Given people with intellectual disability are the second largest cohort in the NDIS, a high need for exemptions in this cohort reveals that independent assessments are not fit for purpose.

There is no information about what people can do if an exemption is refused. Exemptions must be decided individually and be subject to review and appeals processes.

There also appears to be no information about how the NDIS will assess a person who is exempt to ensure they get an appropriate plan and support budget. These assessments must be done fairly, taking into account all relevant information and speaking with people who know the exempted person best.

The NDIS must make exemption criteria, planning and personal budget processes transparent.

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Other critical issues

Reasonable & necessary

Inclusion Australia understands it may be possible for the NDIS to implement independent assessments without changing the law. However, we also understand there are some aspects of the NDIS Act that will need amendment for the proposed NDIS reforms to be implemented. We believe this includes changes regarding “reasonable and necessary” supports.

The Act currently recognises the diversity of people with disability, their needs and circumstances and provides guidance to determine reasonable and necessary. The government’s intention to remove “reasonable and necessary” from the legislation raises serious concerns about participants’ rights to choice and control, and the shift in control to the NDIS resulting in negative impacts on people’s supports and budgets.

Goals and aspirations

The Objects and Principles and other elements of the Act enshrine people’s rights to have support to pursue their goals. However, the new planning system puts goals last and at risk of not being adequately funded. Independent assessments and the associated planning, support budget and funds management processes will have huge and potentially catastrophic effects on people’s lives.

Inclusion Australia believes that Independent Assessments, the related processes, and the ways they are being introduced, are not in line with the Objects and Principles of the Act and breach people’s rights under the UNCRPD. We are appalled that the changes appear to disregard the vision of the NDIS in order to reduce the costs of the Scheme.

I don’t know what will happen to her if there is a funding cut due to an independent assessment not getting it right. She is transitioning from school to workplace, and there is not enough support without the NDIS.

Parent of a young woman with intellectual disability

Budgets before goals

The NDIS says independent assessments will provide consistency in funding for all participants. In the new system, the NDIS receives the person’s functional assessment score and other information gathered about them during the independent assessment and uses this to write a plan and support budget. This is before the ‘planning meeting’. They say the planning meeting is for discussing how a person will use their budget to meet their goals. The planning meeting is the first time goals are mentioned. Inclusion Australia is very concerned about this for a number of reasons.

The NDIS Act, through its Objects, Principles and in provisions throughout the legislation, says the NDIS is about supporting people to pursue their goals. Goals are critical to determining supports and funds needed. The systematic review by Verdugo et al into personal disability support resource allocation research says it has been shown that goals must be part of the assessment process. Yet the new NDIS planning system seems to regard goals as an afterthought. Inclusion Australia is concerned that goals are only mentioned at all because they are shown to be fundamentally important in the legislation.

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The information we have about the new Personalised Budget Tool is the NDIS will calculate a person’s budget using information about their functional capacity, plus ‘the impact of their environment and personal circumstances, together with specific support needs’ collected at their independent assessment. When questioned, the NDIS has said it will take into account things like people seeking employment or moving to independent living, but goals are not mentioned in the documentation we have seen. This does not give us any confidence that people will receive enough funds to help them meet their goals.

Draft budgets

Current indications from the NDIS are people will receive a copy of their plan and budget about a week before the planning meeting. This is an improvement on the initial information that said people would see their budget at the planning meeting, but still doesn’t give people enough time to think about what they need and work out if they have enough in their budget.

Overseas experience, as documented by Duffy and Etherington, says indicative budgets should be known as early as possible to help creativity and empowerment, and that budgets must be able to be adjusted to ensure they are adequate.9

Inclusion Australia is concerned under the new system participants may find their budgets don’t contain enough funds. The planning meeting will then be more about rationing funds to where they are most needed, rather than to work towards their life goals. The NDIS Act says that people with disability have the right to realise their potential for development, and be able to take part in and contribute to social and economic life. This is only possible when people have enough support to do so; just having enough support to get through each day is not enough.

NDIS has also said that a person’s budget can only be changed in ‘exceptional circumstances’, so it sounds like it will not be easy to get more funds.

“I’ve just come home from my big kid’s first ever freestyle wrestling competition. The place it’s at is also a gym. His mentor, through NDIS, just happens to be a former commonwealth games wrestler. He did brilliantly. The whole place was screaming for him and he won his first round. His mentor wasn’t there as he’s away on holidays, and it didn’t matter, because he is a loved and supported member of that club. Without that NDIS support, my kid would be stuck at home, watching random YouTube videos. That is why I refuse to give up. We need the NDIS we all fought for!”

Parent of a young man with developmental disability

Consistent processes do not result in people getting the support funding they need when the tools are not fit for purpose and the processes do not put people, their lives and their goals at the centre. The proposed changes actually shift choice and control, a key tenet of the NDIS, away from the person with disability.

Inclusion Australia believes the new system, far from being fair, could create even greater inequity and even harm to many people with intellectual disability and threaten the scheme itself. It will certainly not be the scheme we fought for and the one we need.

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Drip-feeding of funding

Added to our fear that many people won’t get enough money in their budget, is that NDIS plans to release funds slowly – perhaps monthly or quarterly, and at the planner’s discretion. This reduces the supposed flexibility and takes no account of people’s real lives and how they need to use their budget. If they need more funds at any time, such as for extra hours of support during school holidays or in an emergency, they will need to ask the NDIS. We don’t know how this will be done, how long it will take or what the rules are. We understand there will also be a cap on how much funding participants can roll over for use when they need it.

This drip-feeding of funds, with decisions made by NDIS planners, reduces flexibility and looks very much like the NDIS thinks participants can’t be trusted not to continually draw on the funds. Unless the NDIS can justify why a participant should not be trusted with access to more of their funds, they should allow people to manage their funds in a way that works for them.

The government has flagged the intent to stop self-managing participants from paying their service providers directly. They claim this will remove a ‘burden’ from them. In fact, it shows people the government does not trust them. This is clear from public allegations that NDIS participants are buying ‘yachts’ and spending large amounts of money on sex workers.

The right to your own information

The NDIS says that people will only get a summary report of their assessment, not the full report. This clearly breaches people’s rights to information about themselves.

Value for money?

The NDIS says independent assessments will enhance the Scheme sustainability. However, the cost of conducting independent assessments is very high; eight contracted companies will be paid a total of $339million to do the first 518,000 assessments. It seems likely the changes will also lead to an increase in appeals against decisions, at increased cost to the NDIS.

The NDIS is ignoring the Productivity Commission’s forecast that the NDIS would not be a cost to the community but would actually increase the GDP by supporting the economic inclusion of people with disabilities and their family carers.

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Conclusion

Inclusion Australia agrees that Scheme access needs to be fair, but treating everyone the same does not create a fair and just system. The NDIS was never intended to be ‘one size fits all’. Throughout its establishment it was recognised people with disabilities are diverse and each individual needs, deserves, and has the right to the supports they need to navigate access to the Scheme and live an ordinary life.

Mandating independent assessment represents a significant reform of the NDIS. Consistent with the Principles and Objects of the NDIS Act, Inclusion Australia would have expected a reform of this scale should have and must have involved people with disability. Not only would this be consistent with the United Nations Convention on the Rights of Persons with Disability, enacted by the NDIS Act, but it reflects best practice from a policy perspective. No other group of people understands the reality of the NDIS, or the changes being proposed, like participants.

Changing the framework of the NDIS without consultation with its participants is staggering. It raises concern about the integrity of the Scheme going forward, and the commitment of the NDIS to its purpose. For the NDIS to consult people with disability on how to implement reforms, but not the scope and impact of the reforms themselves can only lead to the conclusion these are not reforms driven by for the betterment of the Scheme, or the people most reliant on it.

It is deeply concerning the NDIS has embarked on this systemic reform without clearly evidencing the issues, other options considered or the rationale for change. This is not good policy practice. It is an approach that lacks transparency and accountability, and one, while unlikely to deliver expected outcomes, will almost certainly result in unintended consequences.

Inclusion Australia is deeply concerned the mandating of independent assessments does not respect the rights of people with disability. It serves to erode individuals’ privacy, and the principles of choice and control, and reasonable and necessary.

We are also concerned the use of independent assessments as the basis for determining funding levels and supports is without evidence or support from academic experts. It raises the risk of people with disability, and intellectual disability in particular, being left with insufficient funds to support their needs.

As a general principle, Inclusion Australia believes any and all tools the NDIS uses must be appropriate, high quality and safeguarded assessments. It strongly believes the NDIS must work in co-design to develop a Quality Framework for independent assessments and related processes – both for eligibility and planning purposes. This needs to include best practice, safeguards, review and evaluation, and be publicly available. This threshold has not been met by the NDIS; the efficacy of the tools selected is at best questionable.

Notwithstanding there may be a role for independent assessments to help people unable to afford professional reports with access to the Scheme, Inclusion Australia does not support their use as the mechanism to access the NDIS. Nor does it support the use of independent assessment to determine the level of supports required.

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Independent assessments and the way NDIS intends to use them is not an investment that will work towards achieving the vision of the NDIS and bring benefits to Australian society and the economy.

The government must stop its blinkered view of the NDIS as welfare handouts, and see the benefits of the NDIS to our whole society. It is an insurance model for all Australians and when it is working well it will strengthen our economy. The government should remember that this was forecast by the Productivity Commission and is a key reason the scheme came into being.

Inclusion Australia is very concerned that the real reason NDIS wants to make these changes is less about fairness and more about keeping the number of participants and the level of their support budgets down, no matter how this affects people with disability.

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