Children and Young People with Disability Australia

Joint Standing Committee on the National Disability Insurance Scheme PO Box 6100 Parliament House Canberra ACT 2600 ndis.sen@aph.gov.au

Friday, October 1, 2021

Dear Chair and Committee members,

Re: Submission of CYDA report — Avoiding simple solutions to complex problems: Independent Assessments are not the way to a fairer NDIS

Children and Young People with Disability Australia (CYDA) is the national representative organisation for children and young people with disability aged 0 to 25 years. CYDA has an extensive national membership of more than 5,000 young people with disability, families and caregivers of children with disability, and advocacy and community organisations.

We are pleased to provide the attached report as a submission to the Committee’s inquiry into NDIS independent assessments. The report draws on the experiences of 270 people, young people with disability as well as families and caregivers, between 21 January and 21 February 2021.

The report finds that experiences with the NDIS can vary widely. Positive experiences with the Scheme can be life-changing or transformational for children, young people and their families, supporting their human rights and facilitating their goals. But at the moment, the NDIS doesn’t work for everyone. There are a range of inequities within the Scheme that lead to divergent outcomes and experiences for NDIS participants.

While the report covers independent assessments, it also identifies a range of other challenges and barriers participants are experiencing in the Scheme, which we invite the Committee to consider.

Yours sincerely

Mary Sayers Chief Executive Officer

Website www.cyda.org.au Facebook facebook.com/CydaAu Instagram cydaaus Twitter @CydaAu

Avoiding Simple Solutions

to Complex Problems:

Independent Assessments Are Not the Way to a Fairer NDIS

By Professor Helen Dickinson, Dr Sophie Yates, Dr Catherine Smith*, and Ms Alana Doyle**

Public Service Research Group, University of New South Wales

“The Pail Eola saa taa aaa ae, Wma poppees shee ae Pa aioche rh cheas Nepean f * “Children and Young People with Disability Australia yo

For Children and Young People with Disability Australia y May 2021 y

Suggested citation

Dickinson, H., Yates, S., Smith, C., Doyle, A. (2021) Independent Assessments are not the way to a

greater fairer NDIS. Report prepared for Children and Young People with Disability Australia (CYDA), Melbourne.

ISBN: 978-0-6489169-2-5

Acknowledgements

Children and Young People with Disability Australia and Professor Helen Dickinson, Dr Catherine Smith and Dr Sophie Yates and Ms Alana Doyle would like to acknowledge the traditional custodians

of the lands on which this report has been written, reviewed and produced, whose cultures and customs have nurtured and continue to nurture this land since the Dreamtime. We pay our respects to their Elders past, present and future. This is, was, and always will be Aboriginal land.

= Australian Government

• Department of Social Services

This activity received grant funding from the Australian Government.

Contents

EXECUTIVE SUMMARY 2

INTRODUCTION 5

BACKGROUND 6

METHOD 9

DEMOGRAPHICS OF RESPONDENTS 10

FINDINGS 12

When the NDIS works well it can have profound impacts on the lives of individuals 12

At the moment the NDIS doesn’t work for everyone 14

Challenges with access 16

Challenges with planning processes 18

Funding challenges, reviews and appeals 21

Satisfaction with services and supports 24

Independent Assessments 26

CASE STUDY: THE INDEPENDENT ASSESSMENT

PILOT EXPERIENCE 32

DISCUSSION 34

CONCLUSION 37

REFERENCES 38

APPENDIX 1: SURVEY QUESTIONS 39

Executive Summary

Experiences with the National Disability Insurance Scheme (NDIS) can vary widely. Positive experiences with the Scheme can be life-changing or transformational for children, young people and their families, supporting their human rights and facilitating their goals. But at the moment, the NDIS doesn’t work for everyone. There are a range of inequities within the Scheme that lead to divergent outcomes and experiences for NDIS participants. The Federal Government has proposed the most significant reforms of the NDIS since its launch. One key part of this reform process is the introduction of Independent Assessments. The survey was designed by CYDA and invited children and young people and families to share their experience of the NDIS, what works well and what should be changed. Participants were also asked about whether they had heard about Independent Assessments and what they thought about them. For some young people and families, the NDIS is invaluable and has a significant impact on their lives; it allows people to live the lives that they want. The financial relief the NDIS offers and greater access to services and supports has allowed individuals to develop their skills and engage with their communities in meaningful ways.

Positive Experiences With The

Ndis Can Be Life-Changing Or

Transformational For Children,

Young People And Their Families.

But At The Moment, The Ndis

Doesn’t Work For Everyone.

2 INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

SURVEY RESPONDENTS

Prereeereererrererrrrerr err tre ere rier irre sci ss)

12%\nof responses\ 88%\nof respondents came from\ were families children\ ferele) and young Le\ persones\ W! °

Two thirds\ 94% of the children\ of family and young people\ respondents represented\ were female in the survey\ were male\

The fact that the Australian community has chosen to\ninvest in the NDIS has in itself made some children and\nyoung people with disability and their families feel less\nalone and more visible, heard and valued.

While the NDIS works well for many children and young\npeople and their families, unfortunately this is not the case\nfor everyone. For some the NDIS is highly stressful and\nuncertain. Respondents reported feeling like they are in\nconstant battles with the scheme and that there is\na lack of consistency and continuity.

Nearly 40 per cent of respondents had experienced\nchallenges with the application process. This was often\na long and uncertain process and could be financially\nburdensome in demonstrating eligibility, even where\nindividuals had been disabled since birth. Many found\nThe system confusing.

Having secured access to the scheme, three quarters\nof our respondents had experienced challenges with\nplanning processes. Planners were reported as highly\nvariable, with some of very poor quality, as were Local\nArea Coordinators.

NDIS PLANS

88%\nof respondents\ were currently\nreceiving supports\ 15%\nwere on their\nfirst plan\nover 50%\nwere on second\nor third plans\n16%\nhad five or\nmore plans\nthroughthe NDIS\niS\n60%\nof our sample\nselmanaged\ntheir plans\n 44 per cent of respondents were satisfied with the\nfunding in their plan, although a further 40 per cent\nwere not. Particular gaps were identified in the areas\nof personal support, therapy and capacity building\nsupports, participating in the community, and\nassistive technology.

Over half of respondents had asked for a plan review\ndue to insufficient supports and a further five per cent\nhad escalated a review to the Administrative Appeals\nTribunal.

Just under half (45 per cent) of respondents were\nsatisfied with services and support, with just under\n40 per cent indicating they were not satisfied. Many\nrespondents had experienced challenges relating to\ntin markets, meaning they could not find suitable\nservices and supports, including those that were\nappropriate for children and young people or worked\nto empower children and young people.

INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

EXECUTIVE SUMMARY

Nearly three quarters of respondents had heard of Independent Assessments, although only 10 per cent had first received this information from the NDIA. This seems to suggest that, for our respondents Overall, we fnd little support for at least, the NDIA has not been as successful in the introduction of Independent communicating these changes as other sources, Assessments and the clear message which is clearly problematic for a reform of this that respondents think they will not magnitude. address the issues of fairness and Of those who had heard about the intended roll-out consistency that they are intended of Independent Assessments, 80 per cent had a to achieve. Further, they will do negative view, with just 6 per cent seeing this as a little to address the many inequities positive reform. Of those with a negative view, many we fnd within the scheme and may were worried that an assessment of this type done in fact make the NDIS less fair. by a stranger would not give an accurate picture of abilities for a range of reasons such as lack of trust, complex needs, and masking behaviours. Independent Assessments were seen by some as a duplication of effort and something that would put more stress on families. We hope that the Federal Overall, we find little support for the introduction Government hears these messages of Independent Assessments and the clear message from children and young that respondents think they will not address the issues people with disability and their of fairness and consistency that they are intended to families and commits to abandoning achieve. Further, they will do little to address the many this reform, engaging in meaningful inequities we find within the scheme and may co-design to overcome the issuesmake the NDIS less fair. currently experienced with the The results of our survey indicate the reform scheme, and ensuring that all people proposals are the wrong solution to the many with disability receiving support complex implementation issues of the NDIS. We note have the same positive experiences the recent announcement from Minister Reynolds that that some currently enjoy.the introduction of Independent Assessments has been paused and we cautiously welcome this, but still hold concerns about the process and any potential future roll-out. The current pilot of Independent Assessments does not have a robust independent evaluation where the results of the assessments are compared to other evidence of functional need, nor are they testing the impacts on NDIS plans and budgets. We hope that the Federal Government hears these messages from children and young people with disability and their families and commits to abandoning this reform, engaging in meaningful co-design to overcome the issues currently experienced with the scheme, and ensuring that all people with disability receiving support have the same positive experiences that some currently enjoy.

Introduction

As the Federal Government has argued, there are inequities in the operation of the NDIS that means not everyone is able to gain the advantages of the Scheme in the same way. In order to deal with some of these inequities the Federal Government has signalled intent to embark on the most significant reform of the scheme that we have seen since its launch. A key part of this reform process is the introduction of Independent Assessments.

In this document we set out data reporting experiences of the NDIS from 270 children and young people with disability and their families and caregivers. These data were collected by Children and Young People with Disability Australia (GYDA), the national representative organisation for children and young people (aged 0-25) with disability. CYDA is a not-for-profit community organisation that provides a link from the direct experiences of children and young people with

disability and their families to federal government and other key stakeholders. CYDA sought to understand the experiences of individuals accessing the scheme to better understand the positive impacts this has on people’s lives and some of the challenges that have been experienced. The survey also asked whether individuals had heard of Independent Assessments and their views on this proposed reform.

As might be expected with a scheme of this size, our findings indicate mixed reports on the NDIS. For some it has been life changing, yet for others there have been a series of barriers and challenges that have left children and young people and their families stressed and frustrated. These issues range from eligibility for and access to the scheme, to the planning process, Local Area Coordinators, size and content of plans, review processes, and actually being able to spend allocated budgets.

66

As might be expected with a scheme of this size, our findings indicate mixed reports on the NDIS. For some it has been life changing, yet for others there have been a series of barriers and challenges that have left children and young people and their families stressed and frustrated. These issues range from eligibility for and access to the scheme, to the planning process, Local Area Coordinators, size and content of plans, review processes, and actually being able to spend allocated budgets.

The proposed Independent Assessments will do nothing to address most of these issues. Overall we find respondents very negative towards these proposed changes, fearful of what this process might expose them to and concerned about the potential for them to have much needed care budgets slashed.

This report is structured as follows. The first section sets out the background, describing Independent Assessments, what these are and why the government believes them to be necessary. We then provide a brief overview of the approach used to generate and analyse the data in the report. We next give a picture of the demographics of those who responded to the survey, before moving to the findings. Here we set out the positive impact that the NDIS has had for some, and then detail the challenges reported by respondents in relation to various aspects of the scheme. Finally, we set out the implications of these findings in relation to the impact that the Independent Assessments reform might have.

INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

Background

The NDIS is a world leading reform, which The introduction of Independent Assessments will has been delivered at great speed. It is a change the way that individuals are assessed once huge achievement that there are more than eligibility for the scheme has been established. Rather 400,000 individuals being supported by the than relying on access lists and planners as the current scheme does, independent functional assessments willScheme in just seven years and that children instead be undertaken. These will be done by one of eightand young people comprise 57 per cent of organisations privately contracted to the NDIA, who willall NDIS participants (National Disability send an allied health professional to assess the level of Insurance Agency 2020b). support they need. The assessor will not be someone the person with disability already knows. The assessment Large schemes like this are not static and go through will be done using a series of standardised tools and changes to iron out problems and ensure that they are according to the NDIA will take around three hours. The tools assess what individuals are and are not able to do in terms of specific standardised tasks, with no discussion of individual goals. The outcome of this process determines if the person is eligible for NDIS funding and how much they should receive. The assessed individual will only receive a copy of the independent assessment report if they specifically request one. If allocated a budget at this point, the individual will meet with a planner. Under current proposals, the result of the Independent Assessment cannot be appealed. However, the reforms for Independent Assessments go beyond proving eligibility for access to the scheme. The Government and the NDIA have proposed making these assessments compulsory for all current participants, who have already proven lifelong disability. To date, some current NDIS participants have been asked to volunteer to undergo Independent Assessments as part of the piloting process, although very limited detail of these pilots has been publicly released. In the first stage (originally planned for mid-2021 but now paused for potentially six months or longer) all people over 7 years of age that meet the initial access requirements will be referred for an Independent Assessment. Children under 7 with disability are covered under a specific Early Childhood Early Intervention (ECEI). Those currently in the scheme will progressively be required to undergo the same assessment before they receive their next plan. There has also been the suggestion that Independent Assessments might be extended to children as young as 12 months in the future. Under the proposed process, individuals and families still have to demonstrate they are eligible for the scheme before they move to the Independent Assessment stage.

According to the NDIA, functional assessments were always central to the implementation of the NDIS (National Disability Insurance Agency 2020d). Independent Assessments were originally recommended by the Productivity Commission in their blueprint for the scheme (Australian Government Productivity Commission 2011). Independent functional assessments were first trialled by the NDIA in 2012, but the trial found the tool not fit for purpose. A number of trials of tools have been undertaken since this time (see Bonyhady 2021), but greater discussion around this was sparked by an independent review of the NDIS Act known as the Tune Review (Tune 2019). This identified a number of problems with the NDIS at the time, and provided data from a pilot project that suggested independent functional assessments could help solve some issues. However, the process surrounding the assessments proposed in the Tune Review differ from those being suggested in the current reforms in some important ways. Specifically, there is:

• a lack of co-design and proper consultation; a lack of discretion in Independent Assessments to ensure they are consistent with the NDIS Act; and, a lack of protections such as a participant’s right to challenge assessment results. The proposed reform is not just about access as it will also be rolled out to those participants who have already proven lifelong disability as part of plan renewal processes.

There has been widespread condemnation of both the proposed Independent Assessments and the process through which they have been introduced in the disability community (see Dickinson 2021). Critics of these proposals argue that the tools are not appropriate for this process as they were not designed to aid decisions about funding allocations. Indeed, there is no other system in the world that uses functional analysis tools to allocate funding to people with disability. Many in the disability community are concerned that the introduction of Independent Assessments is being done to cut the costs of the scheme and will lead to reduced plan sizes. Moreover, it is generally perceived that there has been a lack of meaningful consultation with the community in designing this new process. Against this background, CYDA wished to explore experiences of children and young people and their families within the NDIS and perceptions of whether the proposed changes might improve the system.

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BONS e cert +sseveveeses

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Method

The survey was designed by CYDA staf in Finally, the survey asked whether respondents had close consultation with the academic team.

It was designed to ascertain as full a picture as possible
of respondents’ experiences with various aspects of the
NDIS, beginning with a range of demographic questions.

It then asked about experiences with access to the
Scheme, and covered planning, funding levels, barriers
to utilisation, and internal and external plan reviews.

Two free text items assessed overall experiences
with the NDIS from different angles: asking about the
best thing about the NDIS invited respondents to talk
about ways the scheme had worked for them and
improved the lives of children and young people and
those things they most valued about their
participation. This was very important to the research
team as we are interested in both highlighting the
experiences of people whose lives have been improved
by the NDIS, and considering how the scheme can work
in this way for all participants. Asking about the worst
something likewise focused attention on the things
mmost dislike about their experiences of the NDIS (if
anthing), which allowed us to think about the relative weight respondents gave to problems they might encounter with scheme operation. Combined with free text comments from earlier questions on specific aspects of the NDIS experience, this allowed us to understand the full range of issues from respondents’ perspectives, as well as the issues they considered to be most important.

                                    The survey was designed to
                                        ascertain as full a picture as possible
                                         of respondents' experiences with
                                           various aspects of the NDIS.
                                                                                             9                                     INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

Demographics of Respondents

In this section we briefly break down the number and demographic characteristics of the sample.

In total 270 respondents took part in the survey.

Of these respondents, 237 (88 per cent) were family members and 33 (12 per cent) were young people. As Table 1 shows, 58 per cent of children or young people were male and 38 per cent female.

Table 1: Gender of child or young person

In addition to asking about the gender of the child or young person, in the case of family respondents we also asked for their gender. As Table 2 demonstrates, thiS elicited a stark response, with 94 per cent of respondents being female and just 4 per cent male.

Table 2: Gender of family respondent

Respondents were located across the country, with representation from each state and territory. Most respondents came from Victoria (86%), Queensland (27%), and New South Wales (17%). There was also a mix of metropolitan (62%), regional (28%), rural (9%) and remote (2%) respondents.

Of the children and young people represented in the sample, 88 per cent were currently supported by the NDIS and a further 5 per cent accessing NDIS-funded early childhood intervention supports (Table 3).

Only 7 per cent of our sample had not accessed support via the NDIS.

Table 3: NDIS participation of survey respondents

Note: * 3 respondents were accessing ECEl and NDSI

Of those supported by the NDIS, Table 4 shows that

15 per cent were on their first NDIS plan and 16 per cent had five or more plans. Over half of our respondents were on their second or third plans. This demonstrates that our sample had significant experience of the scheme over time.

Table 4: How many NDIS plans

PESUSTE DE PUSS COPE TENSES TOUT ON TET ETUSTT TUS SON SEUS TS SECO ENT TR eEy EA

Table 5: How NDIS plan is managed

eet ete te eee eee CeCe ee CeCe ESE TCS Eee eee cee eee ee ee ee eee eee) tee ee eee ee eee ee ee eee eee ee eee ee ee eee eee ee

• —on first NDIS plan
• 2
• 3
• 4
• 5
• More than 5 NDIS plans
• Missing

Total 64 37 18 13 270 25 11

of types.

In terms of how NDIS plans were managed, as Table 5 shows we see a propensity towards self-management within respondents. Just a small proportion were NDIA-managed or self-managed by the young person. A quarter were plan managed and over half were self-managed, with the remainder using a combination

Number Self-managed by 139 family member or carer Plan managed 64 A combination of 28 management types Self-managed by 12 young person Managed by 10 the NDIA Unsure 4 Missing 14 Total 270 INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

Findings

In this section we now move on to set out the fndings of the survey. We start by exploring the positive experiences of the scheme, before moving on to the challenges and then to perceptions of Independent Assessments.

When the NDIS works well it can have profound impacts on the lives of individuals

In the comments provided to the survey it is clear that children and young people would not have been able for some children and young people and their families, to access otherwise, and sometimes as services that families would have needed to pay for out of their own pockets. When asked about the ‘best thing’ about the NDIS, 60 of the over 100 comments provided by respondents related to this theme, for example:

• “I’m eternally grateful for the NDIS. Without the NDIS I would be in my mid-twenties either in aged care, in hospital or homeless. NDIS has allowed me to live in my own home, drive my own car and live my life how I choose to independently. Absolutely life changing.”

This was echoed by another parent who told us:

“The funds my son receives allows for him to access OT [occupational therapy] & Speech which we wouldn’t have been able to afford. We have watched him grow in confidence & understanding. Our long term goal is for him to have a job of some sort when he gets older & with the continued support from NDIS this will be possible when he gets older. We will always be grateful & each year at my son’s review I always Respondents were appreciative of financial relief and relatedly – greater access to services and supports.

This was sometimes expressed as services that

“I’m etternaly grateful for the NDIS. Without the NDIS I would be in my mid-twenties either in aged care, in hospital or homeless. NDIS has allowed me to live in my own home, drive my own car and live my life how I choose to independently. Absolutely life changing.”

A less common theme (14 comments) was respondents’

appreciation for self-management and the choice and control they could achieve through the NDS, and a theme of similar strength was appreciation for benefits related to The fact that the Australian learning, development and community access. The fact that the Australian community has chosen to invest in the NDIS has in itself made childrenFor families with multiple children, the NDIS can be and young people with disability andincredibly important in allowing for time and space with each child. This has been a particular challenge for their families feel less alone and more many over the course of the last year within the context visible, heard and valued. of the COVID-19 pandemic. One respondent explained: “This year, having the funding to access a Another respondent suggested that the very existence developmental educator, to write a behavioural of the NDIS: support plan. Having sufficient funding now, to access support workers help him learn skills and give us “…sends an important signal about our community much needed respite. This also allows us to have valuing people with disabilities.” quality time to spend with our daughter.” The fact that the Australian community has chosen to Prior to the NDS some families lived in constant fear that invest in the NDIS has in itself made children and young a change in their financial situation would have disastrous people with disability and their families feel less alone implications for their child. As one respondent explained: and more visible, heard and valued. “Peace of mind. If our financial planning falls apart Overall, the NDIS is a truly valuable resource for many I take comfort knowing my son will have support, of those who access it. If this could be the experience for especially after our deaths. I also take comfort in all those who access it, then this would go a long way in knowing our friends with similar disabilities aren’t supporting Australia to realise its commitments under the struggling financially to support their kids the Convention on the Rights of Persons with Disabilities. in the way many used to before NDIS.” As this quote demonstrates, the NDIS has for some already overcome equity issues. This funding is not just important in terms of providing services, it also allows children and young people to engage with the community, which in turn can have an important role in shaping public perceptions around people with disability. As a parent told us: “[The] NDS is an amazing support without it there is no way we could have afforded services. It has enabled community access and changed the way a lot of people think about disability.” 13 INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

FINDINGS

At the moment the NDIS doesn’t work for everyone

While the NDIS works well for many children and young people and their families, unfortunately this is not the case for everybody. While as described above many of the responses to the ‘best thing’ about the NDIS had a fairly clear theme (access to services and financial relief), respondents’ feelings about the ‘worst thing’ were much more varied.

The strongest theme related to confusion, complexity and administrative burden, with 33 comments about aspects of the system that confuse and overwhelm parents, carers and children and young people – such as not understanding how the system works; not knowing what services and funding they can ask for; and the time, effort and skills needed to navigate the system. There were also 31 comments relating to problems with NDIA personnel and Local Area Coordinators (LACs), for example perceptions of poor training and bias, adversarial behaviour, high turnover, and lack of understanding of disability.

Such experiences were echoed by others, with one parent carer explaining:

“The constant stress of having to fight for funding, having people who have no idea about what children with disabilities and [their] families go through, being told things like “that’s parental responsibility” when we explain the needs of our children, when if your child didn’t have a disability there would be no need for the support recommended by therapists. Putting people with disabilities in “boxes”.”

Thirdly, 21 comments about the ‘worst thing’ related to not being granted enough funding, variability in funding, or stress about having funding taken away. Other themes related to planning and review processes, lack of flexibility (e.g. in funding categories), and transparency and accountability.

For some the NDIS is highly stressful and uncertain, as one respondent explains:

"It has been anxiety and stress provoking at times due to unclear rules and regulations on what you can spend funds on. There is also little control on what service providers can force you to sign when wanting to use their services which could mean you are locked into a certain spend with them even if you decide not to continue with them. And the stress every plan renewal brings is enormous as the horror stories of people getting their funds cut tremendously is very worrying." 

One further respondent summarised the review process as: “A time consuming, exhausting nightmare, ending in tears. Not what was promised in 2012!”

14 INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

Another respondent also noted a lack of consistency and continuity in processes: “\nThe reviews, the uncertainty of what funds she "The reviews, the uncertainty will have when the next plan comes in. The stress of plan reviews. Trying to explain to my daughter that she of what funds she will have when did not have the the next plan comes in. The stress of funding to have those same supports, she does not plan reviews. Trying to explain to my understand. Also, NDIS is not at all black and white, daughter that she could do things it has so many grey areas, and this is causing everyone before but now we don’t have the you speak to e.g. support coordinator, LAC, NDIS funding to have those same supports, phone line, plan manager, delegates, all have very she doesn’t understand. different answers about things.” Some respondents commented that with successive plans these issues get easier as you learn to navigate There must be a better way. I don’t mean to make it the system: sound this is about me, it’s not it’s for my daughter but NDIS needs to come up with a better way as I don’t “\nThe scheme is unwieldy and intimidating at first think destroying parents capacity is helpful to anyone. contact. Only after a couple of plans do you come to grips with it and see the possibilities it opens up.“ One respondent summed up their review experience: We next go on to outline some of the challenges that “It was hell …The process is soul destroying and were reported ranging from the application process, it took everything I had to survive it. I think I have PTSD planning processes, funding allocated and barriers [Post Traumatic Stress Disorder] the thought of the to using services and supports. next review makes me cry, I feel nauseous. I know for my daughter’s sake I will dig deep and do whatever it takes but that doesn’t mean it won’t take its toll. 15 INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

FINDINGS

Challenges with access

Nearly 40 per cent of our respondents experienced A chi square test revealed that respondents who had challenges with the application process to the NDS, applied over the past two years were more likely to have as shown in Table 6. In free text comments some experienced challenges with the application process than respondents elaborated on some of these issues. A those who had been on the scheme more than two years, substantial proportion of these comments indicated and these differences were statistically significant. significant delays in access processes; one respondent described: Table 6: Respondents experiencing challenges with the application process “A very long wait time.” Another commented: Number % “It took 17 months from applying to have a plan.” Yes 103 38 For some, the process was not only long but uncertain, not knowing what was coming next and No 154 57 having to respond to things at short notice: “Lengthy process with little idea of progress. No Unsure 13 5 information and then a “hurry up and wait” mentality.” Total 270 Interestingly, rather than decreasing over time, for our sample the challenges with applying for the NDIS appear to be more signifcant with more recent applicants, despite the Participant Service Guarantee recommended by the Tune Review and implemented by the NDIA (see Figure 1).

Figure 1: Respondents experiencing challenges with the application process by length of time as NDS participants

Did you experience any challenges in applying for the NDS? 7 More than 4 years 22 0 DTS 7 N More than 3 to 4 years 29 the on 20 me More than 2 to 3 years 52 ti 1 of 38 1 to 2 years 35Length 3 21 Less than 12 months 14 0 0 10 20 30 40 50 60 Yes No Don’t know/unsure

One of the access challenges families face is in gathering

evidence to prove they are eligible for the scheme and this often comes with a financial burden. As one respondent commented: “I am born disabled, so have been "Requested many assessments to be done costing on this rodeo for a while. Most large amounts of money.” disabled people (in my experience) are exhausted enough, to be quiteAnother echoed this experience explaining: frank. So applying for NDIS is "Extreme amount of documents required. Could not lengthy and painful. Furthermore, the afford private OT assessment and hospital wouldn't medical trauma most disabled people do it. Rejected by disability services until local MP experience makes it even harder to assisted us.“ have the resilience to keep applying, For some this was all the more problematic given they chasing up NDIS, chasing up doctors, had been identified as having disability since early in their chasing up specialist, chasing up oldlife. The impact of having to keep justifying this can be records and new records.“]significant. As one young person explained: “I am born disabled, so have been on this rodeo for a while. Most disabled people (in my experience) are Others found the NDIS system confusing to access and exhausted enough, to be quite frank. So applying for reported mistakes being made by NDIA staff that were NDIS is lengthy and painful. Furthermore, the medical not easy to resolve. We have specified here how long ago trauma most disabled people experience makes it these respondents applied. One respondent who had even harder to have the resilience to keep applying, been accessing the scheme for 1–2 years told us: chasing up NDIS, chasing up doctors, chasing up "Age of child was wrong, somebody had written the specialist, chasing up old records and new records.”\n wrong century, making the child 107 years old, instead Some respondents were unsure about whether they of 7. This held up the plan and was only rectified by would be eligible or not, but through extensive work repeated phone calls by me.“ Could eventually secure access to the scheme. As one Others made comments such as:respondent explained: “NDIS forgot to send out application forms, lost our “Told was ineligible a few times, paperwork application twice and it took around a year.” (on third I submitted was apparently not received, and there plan, accessed NDIS more than 3–4 years) was limited communication to advise me if further info was required or not received. I spent hours “NDIS lost paperwork on x2 occasions. I needed to on the phone to several different people trying chase up to see where they had sent paperwork.” to find how my application was progressing. (on first plan, accessed NDIS less than 12 months) It was a lengthy and exhaustive process.“ Some reported that this was particularly challenging for Others had concerns about how eligibility was people with disability: determined. This respondent for example explains: “."process is difficult for disabled people to access, "Had several learning disabilities e.g. audio processing, requires constant chasing down and phone calls dyslexia, anxiety but not until ASD was diagnosed did and forms to fill out. Inaccessible when the caregiver we get any help.” is also disabled and no help offered to make it more accessible.“ (on second plan, accessed NDIS 1–2 years) 17 INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

FINDINGS

Challenges with planning processes

Having secured access to the scheme, three quarters of our respondents had experienced challenges with planning processes (Table 7). A chi square test revealed no statistically significant differences “The person who assessed for the second plan was rude, uncaring and didn’t understand my goals, even after my mum tried very hard to explain a number of times, so when the plan was approved it was not at all what we discussed so we had to have a review which took forever.”

The biggest theme in free text comments was that families did not always get what they needed because the planning process was poor. As one respondent commented: Table 7: Respondents experiencing challenges “Professional reports were totally disregarded, leading to useless plan and s100 review, creating more work and stress.” with the planning process

As in this case, such a situation often led to a review Yes 133 74 or appeal process to resolve this. Another respondent commented: No 35 20 “The person who assessed for the second plan Unsure 10 6 was rude, uncaring and didn’t understand my goals, even after my mum tried very hard to Missing 92 explain a number of times, so when the plan was approved it was not at all what we discussed so Total 270 we had to have a review which took forever.”

Many respondents felt that their planner did not understand their family’s situation and needs or disability more broadly: “The planner has no idea of what challenges go with the disability and it’s hard to explain to them.” This was echoed by another respondent who remarked: “Planners having no clue about people with disabilities. Even if two people have the same diagnosis don’t mean they not the same support.”

18 INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

Another respondent described:

“NDIS planner had my primary disability incorrect. Through a FOI [Freedom of Information] request I also “One of my daughter’s plans had an found out that NDIS planner had incorrect information e.g. that I have a sister who provides informal care – admin error (staf didn’t input data I don’t have a sister.” rather typed random letters) which took about 6 weeks to rectify inIncorrect information in plans can have significant impacts which time my daughter had to puton children and their families, as the following quote services on hold.”indicates:

“One of my daughter’s plans had an admin error (staff didn’t input data rather typed random letters) which took about 6 weeks to rectify in which time my daughter had to put services on hold.” Such delays can be particularly problematic given the “…condescending, awful questions importance of early intervention for some impairments. on a surface pro, inaccessible participation. LACs were wellSome Local Area Coordinators (LACs) were also perceived to have a poor understanding of disability: meaning but really had no idea how young person could be active “LAC is useless at communication needs of complex children and our plan has required multiple reviews participant in the meeting.” every year since they were brought in.” Such an experience could also leave individuals and families feeling like they had not been listened to and like they have no say in their plans. As one respondent commented:

“Untrained LACs making biased and unfair decisions based on personal opinions and judgements. Not representing the participant positively and treating the participant like dirt.” This was echoed by another respondent who described their experience as:

“…condescending, awful questions on a surface pro, inaccessible participation. LACs were well meaning but really had no idea how young person could be active participant in the meeting.”

19 INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

sereeere

. ®

Funding challenges, reviews and appeals

Nearly half of respondents (44 per cent) were satisfied Table 9: Areas where plan is lacking with the amount of funding in their plan (Table 8), although nearly 40 per cent more were not satisfied and a number
Number % were unsure (17 per cent). Personal support 98 41

Table 8: Satisfaction with amount of NDIS funding Therapy and capacity 91 38 building supports
Participating in the 79 33Yes 79 44 community No 68 38 Assistive technology 76 32 Unsure 31 17 Short term 52 22 Missing 92 accommodation and assistance or respite Total 270 Support coordinator 39 16 Regarding areas that plans are lacking, as Table 9 Help to use the NDIS 38 16 shows, the biggest areas identified are around personal support, therapy and capacity building supports, Home modifications 36 15 participating in the community and assistive technology. Help to self-manage 33 14A further 16 per cent report needing help to use the NDIS plansNDIS and 14 per cent to help self-manage their budget. Just 13 per cent reported being satisfied with funding I’m not sure 6 3in all areas. I am satisfied with 32 13 funding in all areas

                                                                       * Respondents could select no answers or multiple
                                                  answers. Percentage expressed as proportion of
                                                  respondents who were current NDIS participants (i.e. 238)
                                                                                                                                              

INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

FINDINGS

Many of the comments in the free text were concerned with the amount of funding and this being insufficient to gain the sorts of services and supports that are needed. Often families only received “my family was left paying for appropriate funding once they asked for a review: therapies and supports that were “Always have to appeal in order to get correct reduced at an annual plan review… supports.” we were left paying around $600 per week in therapy costs, and despite myAs Table 10 illustrates, over half of respondents calling the NDIS regularly to requesthad needed to ask for a review of their NDIS plan. Although longer term participants (i.e. those who had updates and escalation of the plan been accessing the scheme for more than two years) review, at times distressed and in had been more likely to have needed to ask for a review, tears, one time I called and pleaded a chi square test revealed this was not statistically with them…I had $1.70 left in the bank significant, and about half of newer participants had after therapy bills and groceries and also needed to ask for a review. One respondent Christmas was just around the corner, it took for my local MPs office to step in to get any progress.”

In total, 14 respondents to our survey (5 per cent) dicated that they had escalated a review to the Administrative Appeals Tribunal (AAT). For these individuals and families, they had often gone through long and tough processes: “Over the years we have had reviews, internal reviews, AAT cases and it has been stressful beyond what any person or family should ever have to experience.” Others indicated they had wanted to pursue an appeal, but thought the process would be too challenging. As one respondent explained: “People have told me I should appeal both plans, but I just don’t have the time and energy to fight.” Another respondent described the very real impact the review process had on their family and the implications of going without a fully funded plan: “my family was left paying for therapies and supports that were reduced at an annual plan review…we were left paying around $600 per week in therapy costs, and despite my calling the NDIS regularly to request updates and escalation of the plan review, at times distressed and in tears, one time I called and pleaded with them…I had $1.70 left in the bank after therapy bills and groceries and Christmas was just around the corner, it took for my local MPs office to step in to get any progress.” 22 INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

Page 26

Table 10: Have you needed to ask for a review of your NDIS Plan?

Table 11: Were you happy with the outcome of your review?

23 INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

FINDINGS

Satisfaction with services and supports

Just under half (45 per cent) of respondents indicated Table 13: Barriers to use of services and supports that they are satisfied with services and support, with just under 40 per cent indicating they are not satisfied Number % (Table 12). As Table 13 shows, respondents outlined a number of barriers to using services and supports. Finding suitable services 152 64 and supports in my area Amongst these barriers, more than half of Finding workers that 112 47supports in their area and nearly half struggled to understand andfind workers that understand and empower the empower the child orchild or young person, both of which are different young personmanifestations of thin markets. We illustrate these issues further below with comments from the free text. Getting supports that 105 44 work for children andTable 12: Satisfaction with services and supports young people

            Number   %                 Finding out what        104        44
                                                     services and supports

Yes 106 45 are available and how to access themNo 86 37 Feeling safe and 71 30Unsure 43 18 comfortable accessing Missing 35 the available supports Total Accessibility barriers 39 16 Accessing supports that 10 4 are culturally appropriate

                                                                                                           I don’t experience any    25         11
                                                         barriers using my plan

                                                                  * Respondents could select no answers or multiple   Amongst these barriers, more than
                                               answers. Percentage expressed as proportion of    half of respondents struggled to fnd                                                   respondents who were current NDIS participants (i.e. 238)
 suitable services and supports in
their area and nearly half struggled

to fnd workers that understand and empower the child or young person, both of which are diferent manifestations of thin markets.

The greatest barrier in using services and supports was in relation to what is often referred to as ‘thin markets’ in the literature. Thin markets can manifest in several different forms. The first challenge is lack of available services and “In SA [South Australia] long waiting lists are ridiculous. When you fnd therapies/ therapists that are good their books are closed. SW [support workers] are always hit and miss leaving participants vulnerable.” This point was echoed by another who notes that this is especially the case for those professionals who are known to be good: “In 5 years, I have only struck “In SA [South Australia] long waiting lists are ridiculous. 2 support coordinators who When you find therapies/ therapists that are good their are not money hungry criminals books are closed. SW [support workers] are always hit and miss leaving participants vulnerable.” and/or completely inept at their job. The good ones are like hen’s teeth and frequently burnt out and thusmarkets – where services might be available but these leave the industry.”are not necessarily ones that individuals or families want to purchase. Some respondents, however, found that self-management could be a good way to give more As in this case, these issues were magnified whereaccess to services than plan management offers: children and young people had challenging or complex “I have concluded that the NDIS budget is merely needs: Monopoly money unless you can find a provider. “One of the biggest issues is accessing suitable We are self-managed and have more access than support workers for young people who may exhibit others who are plan managed but the ‘thin market’ violent and challenging behaviours at times. My son situation here in Tasmania is a serious issue for all is non verbal so that also impacts upon my comfort NDIS participants across the life span.” level of who I trust to work with my son. We do not Another strong theme in free text comments related have any regular support workers at this stage.” to service providers being poor in quality or unreliable: Others reported finding good supports only for them “Support worker agencies can function quite to burn out: poorly- often disorganised, don’t let us know if a shift “In 5 years, I have only struck 2 support coordinators is cancelled, or can pull workers off shifts with little who are not money hungry criminals and/or completely notice. Support workers can be very unreliable and inept at their job. The good ones are like hen’s teeth cancel at very short notice with inadequate reasons and frequently burnt out and thus leave the industry.” e.g. too busy, want to go out with their boyfriend etc.” Overall there is strong of evidence of thin markets beingA number of respondents reported struggling to find experienced by our respondents.appropriate supports: “To find good disability support workers to build a team to work with complex needs is like a needle in a haystack. There realistically isn’t enough DSW [disability support workers] trained in complex needs, particularly a child who is Non Verbal CCN/CSN.”

FINDINGS

We asked survey respondents whether or not they had heard of Independent Assessments and as Table 14 indicates, nearly three quarters had. Only 10 per cent had first heard about these changes through the NDIA, with nearly half finding out from social media and online groups and a further third through community or disability organisations (Table 15). This seems to suggest that, for our respondents at least, the NDIA has not been as successful in communicating these changes as other sources, which is clearly problematic in terms of a reform of this magnitude.

Table 14: Knowledge of intended IA roll-out

Table 15: How respondents heard about intended IA roll-out

Of those who had heard about the intended roll-out of Independent Assessments, 80 per cent had a negative view, with just 6 per cent seeing this as a positive reform (Table 16). Respondents were concerned about the assessments being done by people who do now know the child or young person. From their experience of these kinds of interactions they are sure that the child or young person will not engage with the individual or the process. We only received a few free text comments that were positive about the proposed reforms. One respondent remarked they were: “Very happy, as I assume they will streamline the process.” Another remarked, “Great we won’t need reports every year but how independent is independent and how qualified are these people in the many different types of disability. What about fluctuating disability levels, e.g. mental health, level 1 ASD? Anything to take pressure off families and carers is good, I hope this will be an improvement.” “…my 14 year old will not speak to a stranger, they will not speak atAs this quote demonstrates, often respondents were planning meetings, so I’m not sureunsure what the impacts would be due to a lack of information about the reforms and the anticipated associated changes. It has taken 2 years to get him to talk with current OT who just did a full functional assessment recently.”

Table 16: Attitudes to intended IA roll-out
Number % that the child or young person will not engage with the Very positive change 5 3 individual or the process. As one parent carer explains: Slightly positive change 5 3 “My son has multiple and significant disabilities, including severe anxiety. He will be completely unable to participate in a functional assessment with a stranger. Even in our own home, he hides or becomes aggressive if someone he doesn’t know enters our home or tries to approach him.” Neither positive nor 24 14 to trust with professionals to facilitate this: “…my 14 year old will not speak to a stranger, theyOf the more negative perspectives on the reforms, there will not speak at planning meetings, so I’m not surewere a number of key themes. Firstly, respondents were how they expect answers. It has takenconcerned about the assessments being done by people him to talk with current OT who just did a full functionalthat do not know the child or young person. From their assessment recently.“experience of these kinds of interactions they are sure 27 INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

Secondly, respondents were concerned that an

assessor would not be able to grasp fully the functioning and needs of the child or young person within a short space of time.

As one young person “As someone with a rare and misunderstood disability, I am petrified about independent assessments. “I am very worried because my life needs cannot
bbe assessed by a stranger in a few hours. I am
worried that I won’t get the continued funding I
require to have a fulfilling life like I am having now.”

As this quote illustrates, the implications of an
inccorrect assessment are significant in terms of the life
supports of the individual and remaining engaged in
thier goals. These fears are further heightened for
those with uncommon conditions or impairments:
“As someone with a rare and misunderstood
disability, I am petrified about independent
asessments. I dread the thought that someone
to knows nothing or knows totally
iccorrect information about my disability and who only meets
maybe 1 hour will determine the funding I
get and therefore determine my life. As opposed
to providers who specialise in my disability, I have
kknown for years and know my needs. I think it is
disgusting that the government is employing such
a model on vulnerable, disabled people. Where
is the choice and control?”
me for maybe 1 hour will determine the funding I
gei and therefore determine my life. As opposed
to providers who specialise in my disability, I have
hknow for years and know my needs. I think it is
disgusting that the government is employing such
amodel on vulnerable, disabled people. Where
is the choice and control?“

28 INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

Thirdly, for some children and young people there might

be an instinct to ‘mask’ their support needs. Many children and young people find the process of answering deficit questions about their lives highly traumatic so they Many children and young people may not give accurate responses. For these individuals fnd the process of answering they may not have yet come to terms with their identity deficit questions about their lives as a disabled person and may just want to be seen in the highly traumatic so they may not same way as their peers. For others, considering the give accurate responses. For these many things they cannot do may be highly stressful and individuals they may not have yet cause significant anxiety. As this respondent describes: come to terms with their identity “Not going to be valid for people with autism who as a disabled person and may just mask. Increased mental stress”. want to be seen in the same way as This comment was echoed by other respondents who their peers. For others, considering queried whether there would be a role for parents to also the many things they cannot do contribute to these processes: may be highly stressful and cause “Is there respect for a parent’s voice and observations significant anxiety. in the IA process? My son is very skilled at masking his challenges. He would likely present better than his actual day to day capacity in a community setting. Masking is not widely discussed but a very real feature of some people’s experience of neurodiversity.”

FINDINGS

Fourthly, respondents are concerned that assessors might come on a day that is not typical, in the sense that they are having a very good or a very bad day. If this happens the assessor may not get a typical “We have all sorts of tests and evaluations done by the professionals we work with and then we are supposed to have assessments done by an independent assessor as well.” Sound like it’s duplicating time and money.“ One respondent linked together a number of these themes, explaining:
“It is totally unfair for him to be able to advocate for himself or to understand the implications of what he is saying or to even understand what is being asked. Results are likely to be highly inaccurate and a very negative experience all round. He does not need to have his face ‘rubbed in it’ and if having a ‘good’ day will seemingly
negative experience all round. He does not need to have his face ‘rubbed in it’ and if having a ‘good’ day will seemingly
in it’ and if having a ‘good’ day will seemingly
duplication of effort and an administrative burden. For those on the scheme who have already demonstrated through multiple assessment reports and processes that have cost money and time to produce, these will be discarded in favour of their children assessed, finding therapists. Havingassessments by professionals who don’t know the child or young person. As one respondent described: “The administrative burden is already very high. This will increase the burden, more people to deal with, more paperwork, more time with someone who doesn’t know about my young person’s needs. People with disabilities and their families are already time poor because of the extra time it takes to do simple things, going to appointments, self-advocacy, and trying to get additional support and accommodations for many daily activities. This is one more process that will likely involve lots of admin that we have to fit into an already busy schedule.” Overall, we discovered quite negative perspectives on Independent Assessments and little support for this reform direction. 30 INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

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FINDINGS

Case study: The Independent Assessment Pilot experience

CYDA was able to speak with a parent of a child with disability who elected to take part in the Independent Assessment pilot. Margaret*™ shared her experience undertaking an Independent Assessment for her daughter Grace“:

• Margaret’s daughter Grace has a genetic disability and attends mainstream school.
• Grace has been an NDIS participant for several years and has had an overall positive NDIS experience after a difficult transition.
• Margaret, her husband Gary* and their family have built a strong multidisciplinary support circle and ecosystem around Grace to support her to live the life she chooses: “Our goal is for Grace

to do what her older brother Thomas* does.“

Margaret was contacted in late 2020 to participate in the Independent Assessment pilot. Margaret chose to participate in the pilot as Grace had not needed to complete functional assessments since beginning primary school and Margaret is beginning to think and plan for Grace’s high school years. Margaret was keen to understand how Grace might be assessed in future functional assessments for high school, which impact the funding Grace receives for education supports.

There was very little information provided before the assessment took place. The assessment booking time was originally incorrect, as the booking office was located in a different time zone to Margaret and the assessor and did not factor in time differences. This was rectified prior to the appointment. The first name of the assessor who would complete the assessment was provided, but Margaret was not provided with the assessor’s full name, gender, specialisation or qualifications.

It was requested that Margaret have access to a quiet separate space for the three hours the assessment would take. To do this, Margaret needed to use Grace’s existing NDIS funding to book a support worker for the full three hours. It was also stated that ihe assessor would need visual contact and a phone appointment would not be possible.

On the day, Margaret completed the assessment by video call on her iPad. Three separate assessment tools were completed during the independent assessment over the full three-hour period. Because multiple different assessmeni tools were completed, some questions were repeated: “By the middle of the second assessment, you feel like you’re being tested on your answers because of the similar questions between assessment one and assessment two. Not because they were exactly the same, but | needed to answer similarly to make sure everything was in line.”

Margaret describes the effect of this duplication of questions as “destabilising”. She also acknowledged the severe impact that these assessments have on her as a parent: “The nature of assessments is that | have to talk about my child in a way that | absolutely hate. | have to do that to get the bare minimum for her.”

Margaret set strong boundaries to ensure Grace’s emotional health was prioritised during the day. The assessor met Grace early on in the assessment process, but most assessment and discussion occurred away from Grace in a separate room. Margaret knows from experience how frustrating Grace finds it to be discussed by strangers and chose to avoid this as much as possible. Being able to set this boundary meant the day and assessment had minimal emotional impact on Grace.

Margaret was told the assessment results would be used to create a draft plan for Grace and the report would be forwarded to the NDIA. She has had no contact from the assessor organisation or from the NDIA since completing ihe assessment and no follow-up feedback was requested or support offered. When reaching out to the assessor organisation to find out when she would receive

INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

Grace’s report, she was told to contact the NDIA. The NDIA had not responded to Margaret’s email at time of writing.

Margaret found the whole experience “physically and emotionally draining” and is sceptical that the impending assessment results will accurately describe her child. She said: “Based on what they asked me, and based on what | Know about planning processes and plan reviews, they don’t have the full picture. Not medically — it’s more that they don’t have a full picture of her full capacity and functional needs.”

Margaret highlighted several serious issues with the functional assessments in regard to her child:

• The functional assessment questions were developed before the widespread use of iPads and do not seem to account very well for the use of assistive technology, especially as an alternative to traditional methods (e.g. Apple Pay as a replacement for the use of cash).

• For young children, many of their skills and experiences are dependent on what their families choose to expose them to or develop at different life points — e.g. different families will have different boundaries on children walking to the park or the corner shop independently according to age. This is not necessarily a reflection on child development.

• The assessments do not discuss a child or young person’s life at school — a significant amount of time is spent in the classroom.

• The assessments “only ask about a point in time as opposed to goals, expectations or the realities of lifelong, permanent disabilities”. All assessments compared Grace against a typically developing child and did not consider what developmental focus and goals Margaret and Grace actually have.

• The questions asked did not take into account individual experiences, demographics, and goals. One question revolved around rating the child or young person’s ability to handle cash. Margaret’s whole family favours cashless payments — something not uncommon since the outbreak of COVID-19. This meant that evaluating Grace’s ability to hancle money was not necessarily appropriate or reflective of her skillset. Margaret says, “Our decisions of what to pursue and the experiences she’s exposed to are not reflected in her functional assessment.”

• The functional assessments do not ask about a child or young person’s individual circumstances and apply these as context — factors such as metro, regional or rural location, family dynamic, languages spoken, or birth order affect what children and young people have access to and their subsequent skill development. One assessment asked about activities in the community and whether doing more would be ideal but did not ask whether more activities were available and accessible to do.

• In addition to questions about Grace, Margaret was asked many questions about how long is spent doing specific activities for Grace, including cleaning and personal care: “It assumes I’m aware of how long | spend doing something for my child and if it is because of her disability — a heavy mental load.”

• Names have been changed.

AVOIDING SIMPLE SOLUTIONS TO COMPLEX PROBLEMS: 33

Discussion

In making the case for the establishment of the NDIS, it was argued that disability In response to this survey we heard about challenges relating to various aspects of the NDIS including:built around the needs of the system, rather than of individuals (National People with • The complicated nature of the scheme and Disabilities and Carer Council 2009). It had its associated bureaucratic structures; long been recognised that the quality of • Issues with accessing the scheme; Australian disability services and outcomes • Poor quality planners and plans with insufficient for people with disability were poor, funding; especially when compared to other • Challenges of retrieving funds when the service developed nations. chosen is not a good fit;

• Poor quality Local Area Coordinators;A study from the OECD found Australians ranked

• Stressful review processes;lowest in terms of quality of life for people with disability (OECD 2009). Against this background, • Long and complicated appeal processes around the NDIS was a much needed and welcome reform inappropriate plans; and, promising to transform the lives of people with • Thin markets, meaning children, young people disability. As outlined in this report, for some this has and families can’t purchase the services and been realised. When the NDIS works well it can be supports they need. transformative and it can support children, young people and families to live the lives they want and achieve their goals. But as this report has also demonstrated, these benefits are not felt by all. No scheme can ever be perfect, and particularly a reform of this size, introduced as quickly as the NDIS has been, would have aspects that don’t work well for some individuals and groups. Over the past seven years the NDIA has made a range of changes to the scheme and some of these have started to address problems with the scheme.

    When the NDIS works well it can be
    transformative and it can support children,
   young people and families to live the lives
    they want and achieve their goals. But as
         this report has also demonstrated, these
            benefts are not felt by all.
  

34 INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

It is well known, however, that the NDIS does have a

number of inequities (see, for example, Warr et al. 2017, Carey et al. 2018, Green 2019, Cortese et al. 2020) and it is encouraging that the NDIS is planning to implement Even if Independent Assessments more reforms to address these.

However, it is difcult to see how the introduction suggest this will not be the case), of Independent Assessments would deal with participants will still face inequities many of the challenges our participants have in spending those funds.experienced. As became clear through responses to survey questions about the ‘best thing’ and the
‘worst thing’, the aspect of the NDIS respondents
around the country. If improvements can continue toclearly most appreciated was fnancial support be made, then these benefits will be able to be sharedand greater access to services (which were often
with others. Yet it feels like a reform opportunity mightlinked), while the things respondents found most
be wasted through the introduction of Independentdificult were many and varied. Even on the issue
Assessments, which are an unpopular and flawedof access to the scheme, with the introduction of
greater access to services (which were often
solution to the issue of inequity in the NDIS.Independent Assessments there would still be a
requirement to demonstrate an individual meets We welcome the recent announcement from Minister
The eligibility requirements, meaning that reports Reynolds putting the introduction of Independent
from medical professionals would still be needed. Assessments on hold for now until the trial of these
mechanisms has been completed. However, we
Indeed, for some individuals, this process will become would note that the trial will not provide the necessary
much more onerous with the removal of access lists. Even if data to make an informed decision about the impact of
Independent Assessments did make plan allocations Independent Assessments. The approach that has been
much fair (and there is significant evidence to suggest this taken in their evaluation will not give evidence about their
will not be the case), participants will still face inequities in full impact (Dickinson, Kavanagh, and Carey 2021). As
spending those funds. Data from the NDIA demonstrates shown in Grace and Margaret’s story, they did not receive
than there are significantly different utilisation rates (the a copy of their assessment despite repeated requests.
proportion of allocated budget spent) across the country. They received a survey to evaluate their experience of the
For example, the average utilisation rate for East Arnhem process, but this is done without any idea about what
is just 33 per cent (National Disability Insurance Agency judgements have been made about functional capacity
2020e). While there are good reasons why utilisation rates or how this will impact the plan and budget of the NDIS
will likely never be 100 per cent, there are significant areas participant. The evaluation will at best be able to make
throughout the country where these rates hover around some judgements about the process of Independent
the 60–70 per cent mark. Within areas it is also likely Assessments but not its outcomes. For a change of this
that there are low utilisation rates for some services magnitude it is crucial that we have good evidence. We
where the market provision is weak. hope the Minister will listen to the voices of children and
young people and their families set out in this report andThe respondents to this survey were overwhelmingly take these into account in making decisions about theclear that Independent Assessments are not a welcome future of this scheme.reform and the prospect of their introduction is causing
a lot of stress and worry for young people with disability
an important difference for some children, young people and families
INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS 35

r weer eres

ee

Conclusion

The NDIS is a world-leading scheme and for some is providing excellent and much needed supports. However, this is not the case for everyone and there are some significant inequities within the scheme.

Action is needed to attend to these inequities, but Independent Assessments are not the

right answer. While the government says that Independent Assessments will make the scheme more consistent and fair, it is difficult to see

how this is the case. They do not entirely

remove the financial burdens associated with demonstrating eligibility for the scheme; potential participants will still be required to prove a permanent disability in order to go through

the Independent Assessment process.

Moreover, the process of demonstrating eligibility

will be more burdensome for those who would currently gain entry via Access Lists. Those who have already demonstrated a lifelong disability will be required to go through this process, despite the extensive information the NDIA already holds on these individuals.

Rather than being more fair and consistent there are well founded concerns that assessments done by a stranger unknown to children and young people and their families will provide an inaccurate picture of their lives and abilities and this will lead to inappropriate assessments and unsuitable funding systems that cannot be appealed.

66

Rather than being more fair and consistent there are well founded concerns that assessments done by a stranger unknown to children and young people and their families will provide an inaccurate picture of their lives and abilities and this will lead to inappropriate assessments and unsuitable funding systems that cannot be appealed.

This is not at all in line with the Tune Review, which recognised the limitations of functional assessments

and made provision for discretion in order to ensure that

funding decisions would be in line with the NDIS Act’s aim to uphold and facilitate human rights. Further, the proposed reforms will do nothing to deal with issues in relation to poor planning, local area coordination, or the many challenges experienced with respect to thin markets.

We hope the Federal government listens to the voices in this report and is able to recognise that Independent Assessments are a flawed solution. Ultimately we hope that this opportunity for reform is not wasted and there can be a process of co-design to ensure that everyone who accesses the NDIS is able to benefit from it.

INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

References

Australian Government Productivity Commission. National Disability Insurance Agency. 2020b. “Explore 2011. Disability Care and Support: Productivity data”, accessed 9th April 2021. https://data.ndis.gov.au/ explore-data. National Disability Insurance Agency. 2020c. “Landmark reforms to deliver on the promise of Australia’s NDIS.”
accessed 27th March. https://www.ndis.gov.au/ news/5207-landmark-reforms-deliver-promise-australias- dis. National Disability Insurance Agency. 2020d. “NDIA releases new Functional Capacity Framework”, accessed 27th March https://www.ndis.gov.au/news/5260-ndia- releases-new-functional-capacity-framework. National Disability Insurance Agency. 2020e. The NDISNational Disabiity Insurance Scheme.“ Social Policy Market Insights Dashboard. Geelong: National Disability& Administration 51 (1):387–407. Insurance Agency. National People with Disabilities and Carer Council. 2009.S Shut out: The experience of people with disabilities andand their families in Australia, . Canberra: CommonwealthSociety. of Australia. OECD. 2009. Sickness, disability and work: Keepingwith on track in the economic downturn. Paris: OECD.18th April. Robert, Stuart. 2021. “New data shows how a simpler,Dickinson, H. 2017. “NDIS hiccups are expected, as faster, fairer and more flexible NDIS will benefit all of”a nightmare“: why disability groups want NDIS Tasmania.“ accessed 27th March https://ministers.dss.independent assessments scrapped.“ The gov.au/media-releases/6816.Conversation 12th March. Tune, David. 2019. Review of the National DisabilityDickinson, H. 2021. “‘Dehumanising’ and Insurance Act 2013: Removing red tape and2019. Submission on the National Disability Insurance implementing the NDIS participant service guarantee.Scheme’s Inquiry into Independent Assessments to Canberra.the Joint Standing Committee. Melbourne: Centre of Research Excellence in Disability and Health. Warr, D, H Dickinson, S Olney, J Hargrave, A Karanikolas, V Kasidis, G Katsikis, J Ozge, D Peters, J Wheeler, andGreen, A. 2019. “Aboriginal people, disability and the M Wilcox. 2017. Choice, Control and the NDIS.national disability insurance scheme” In Our voices: Melbourne: University of Melbourne.Aboriginal social work edited by B Bennett and S Green, 227–237. London: Springer Nature Limited. National Disability Insurance Agency. 2020a. Consultation paper: Access and eligibility policy with independent assessments. Geelong: National Disability Insurance Agency. 38 INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

Appendix 1: Survey questions

Note: Survey version below was designed for children What type of area do you live in? and young people with disability to complete about • Metropolitan areantheir own experiences. The survey for family members • Regional areaand carers included the same questions, but worded differently. This appendix only lists questions and changes • Rural arearelevant to the results described in this report (some • Remote areasitems were excluded from analysis as they will be reported elsewhere). Are you currently attending or doing any of the following activities? You can choose more than one. About you:

• Early Childhood Education and Care (e.g. childcare,

• I am a family member of a child or young person preschool, kindergarten)
  with disability • Primary School – special school

• Primary School – regular or ‘mainstream’ school

• Other (please specify)

• Dual enrolment between primary mainstream and special school What is your age?

• Secondary School – special school

• 0–3 years • Secondary School – regular or ‘mainstream’ school

• Home school

• 4–6 years • Australian Disability Employment (e.g. supported workplace)

• 7–9 years • Open employment

• TAFE

• 10–12 years • University

• Not in education or work

• 13–15 years • Other (please specify)

• 18–18 years What is your gender?

• Female

• 18–25 years • Male

• Non-binary

• 25+ • Prefer not to say

• Not sure if eligible What state or territory do you live in? (List of Australian Are you current accessing the NDIS? states and territories) • Funded NDIS participant

• Accessing NDIS-funded early childhood intervention supports

• Eligible for NDIS but still waiting for a plan to be approved Are you of Aboriginal or Torres Strait Islander • Applied for the NDIS but deemed ineligible background? • Other (please specify)

• Yes, Aboriginal

• Yes, Torres Strait Islander • Not sure if eligible

• Yes, Aboriginal and Torres Strait Islander • Applied for the NDIS but deemed ineligible

• No • Other (please specify)

• Prefer not to say

APPENDIX 1: SURVEY QUESTIONS

If you are an NDIS participant, how long have you Did you experience any challenges during the NDIS been accessing the NDIS? planning process?

• Less than 12 months - Yes
• 1–2 years - No
• More than 2–3 years - Unsure
• More than 3–4 years Why or why not?
• More than 4 years Are you satisfied with the amount of NDIS funding in your plan? - YesHow many NDIS plans have you had so far? - No- 1 – on first NDIS plan - Unsure- 2 Why or why not?- 3
• 4 Are you satisfied with the supports and services you
• 5 receive under the NDIS?
• More than 5 NDIS plans - Yes
• Other (please specify) - No - Unsure

If you are an NDIS participant, how is your plan If you would like to add to your answer above, pleasemanage? leave a comment below.- Managed by the NDIA

• Plan managed Are there specific areas in which you feel your plan
• Self-managed by me is lacking? You can choose more than one.
• Self-managed by someone other than me - Personal support (support workers, accessing the (e.g. my parent or caregiver) community)
• A combination of management types - Therapy and capacity building supports
• Unsure - Assistive technology If you would like to tell us more, please leave - Home modifications each comment below. - Participating in the community such as events or peer networks Did you experience any challenges in applying - Support coordinator for the NDIS? - Short Term Accommodation and Assistance or respite- Yes - Help to use the NDIS- No - Help to self-manage NDIS plans- Unsure - I’m not sure - I am satisfied with the funding in the areas of my plan - Other (please specify)

Do you experience any barriers to using your NDIS plan?

You can choose more than one.

• Finding suitable services and supports in my area

What has been the worst thing about the NDIS from your perspective?

• Getting supports that work for me as a young person

Are you aware the NDIS is planning to introduce Independent Assessments? More information can be found on the NDIS website. https://www.ndis.gov.au/participants/independent-assessments

• • Yes
• • No
• • Unsure
• • Other (please specify)

If you know about Independent Assessments, how did you find out?

• From the National Disability Insurance Agency (NDIA)
• I have had an NDIS Independent Assessment
• Through community or disability groups or organisations
• Through a service provider
• Social media, including online groups
• Peer groups
• The news
• Don’t know/unsure

If you would like to tell us more, please leave a comment directly below.

Have you needed to ask for a review of your NDIS plan? This includes unscheduled reviews, reviews of a reviewable decision (RORD), or change of circumstances (COC) reviews.

• • Yes
• • No
• • Don’t know / unsure

If you would like to, please tell us more about your experience.

Were you happy with the outcome of your review?

• • Yes
• • No
• • Don’t know / unsure

If so, what happened?

What are your thoughts on the upcoming introduction of Independent Assessments?

• • Very positive change to the NDIS
• • Slightly positive change to the NDIS
• • Neither positive nor negative change to the NDIS
• • Slightly negative change to the NDIS
• • Very negative change to the NDIS

If you want to, please tell us more about your thoughts on independent assessments.

Have you ever needed to escalate a review to the Administrative Appeals Tribunal (AAT)?

• • Yes
• • No
• • Don’t know/unsure

Is there anything else you would like to tell us about your NDIS experience?

What has been the best thing about the NDIS from your perspective?

41 INDEPENDENT ASSESSMENTS ARE NOT THE WAY TO A FAIRER NDIS

Children and Young People with Disability Australla