Submission to the Joint Standing Committee on the National Disability Insurance Scheme Inquiry into Independent Assessments 2021

Endeavour Special Kids With A Disability (SKWAD)

24th March 2021

Summary The National Disability Insurance Agency (NDIA) proposes to introduce a new process Australia wide, Independent Assessments (IA’s), starting mid 2021. As IA’s will determine access and the significant proportion of participant budgets, this is a major structural change and an initiative that will undermine the current individualised approach to budgets for funded supports.

After the NDIA has allowed the Scheme, with inherent barriers, to proceed since 2013 under an increasing weight of complaints and internal administrative delays, it now claims to be following the recommendations of successive reviews. An examination of those reviews indicates some of the evidence relied on is misleading, and some recommendations adopted are not adopted as recommended.

Effectively, the NDIA is taking the existing barriers of complexity, inequity, inconsistency and delays, using them to justify a new process with unknown outcomes. Adverse changes include;

• Fewer ways to effectively challenge outcomes
• Inability to prove need through a variety of evidence sources
• Limited ability to prove need through the IA process, especially for particular cohorts and disability types
• Inability to build and change a budget, based on proven need
• IA process potential to cause harm to some participants

IA’s have not been proven, in context, to provide accurate functional capacity assessment with comprehensive capture of a participants’ profile, irrespective of measures to demonstrate assessors independence and skill.

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There is inadequate independent analysis of participant satisfaction with IA’s. Applicants and participants have no information regarding Individual Assessment scores and the corresponding budget amount deemed “reasonable and necessary,” based on assessment score and other unknown “environmental factors”. No data exists, independent or otherwise, analysing participant satisfaction with resulting budgets.

If IA’s produce a “flexible” budget that is inadequate;

• There is no way to review the IA, demonstrating a lack of procedural fairness
• Poorer outcomes
• Less choice
• Less control
• Repercussions for services and the provision of services

Legislated changes need to be postponed and the rollout suspended as better participant consultation and data based on real life experience is collated to determine if the proposed changes fulfill the stated purpose of the NDIS or take it further away from its’ stated aims. More change and the uncertainty that comes with it, following on 7 years of change and uncertainty, needs to be based on solid independently reviewed consultation with stakeholders and solid independent evidence that participants will have adequate funding.

About Us and the author Endeavour SKWAD is a small charity in its’ 10th year of operation. SKWAD fundraises for learning resources and programs for the largest Support Unit in Sutherland Shire LGA, located at Endeavour Sports High School. Additionally, we promote student inclusion in the wider community and inform members, parents and carers of relevant disability related information. This submission was reviewed and endorsed by the executive and committee.

The author, Helen Mabbutt, is the current President of SKWAD, a parent carer and NDIS Plan Nominee for a young adult son with complex special needs.

Responses to the Terms of Reference SKWAD welcomes this opportunity to respond to the terms of reference, with a focus on members experience and concerns.

a.  the development, modelling, reasons and justifications for the introduction of independent assessments into the NDIS

The NDIA claims IA’s will create a simpler, fairer, faster and more consistent NDIS. SKWAD agrees the NDIS needs to be all these things but it will not be fairer and fund reasonable and necessary supports for each participant if IA’s are the primary exclusive source of funding decisions, administered according to the current framework. Given the ways in which the test scores can fail to capture an individuals’ lived experience (see responses to terms of reference d, e, g, h, i, and k) then sort

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individuals into generic tiers, mandatory IA’s are not fairer. The NDIS cannot continue to claim it provides individualised funding in these circumstances.

The Tune Review recommended IA’s be discretionary. The NDIA is omitting and thereby misrepresenting the findings of the report, when it says the Tune review “recommended implementing Independent Assessments” stated in its’ joint submission with the Department of Social Services, to this joint standing committee. Relevant extracts we refer to from the Tune Review follow:

“4.38. Notwithstanding this, it may not always be possible to source an appropriate provider, or there may be particular individual circumstances where it is more appropriate for non-NDIA approved providers to undertake the assessments. In addition, functional capacity assessments would not always be required, for instance if a participant’s functional capacity is stable.

4.39. Therefore, it is reasonable that the NDIS Act is amended to enable the NDIA to require the provision of a functional capacity assessment by a NDIA-approved provider, but that this power be discretionary. To support this, the NDIA will need to develop clear operational guidelines for decision makers in exercising this discretion.”

The Tune Review also proposed a collaborative, cautious and conditional approach to any implementation of IA’s. The pace and scope of the proposed rollout is not aligned with that approach, outlined in the following extract:

“4.33. This change in approach will require extensive consultation with participants, the disability sector, service providers and the NDIA workforce. Fundamentally, however, the success of the program will largely be dependent on: a. the willingness of prospective participants and participants to work with NDIA approved functional assessors b. those assessors providing truly independent functional capacity assessments, so they are not perceived as agents of the NDIA or a tool designed to cut supports from participants.”

The NDIA has released data on participant satisfaction with the first pilot but not the second. Manifestly insufficient evidence in the circumstances. Most critically, the IA model places an intolerable and indefensible burden on the participant and/or responsible person/nominee to “get it right” at the time of assessment. The burden of proof and plan management has been a barrier for participants all along. This new process would effectively add the onus of proof, the interviewee response, to the mix. Input from the experts on the cause, diagnosis, effects and management of disability, health professionals and allied health professionals, is not considered. The NDIS would have us accept that an allied health professional, unknown to the participant, performing a single interview style assessment event (i.e. moment in time capture), will be sufficient for evidence purposes.

My experience of consultation with the scheme through the Participant First initiative has been disappointing. There is a small Independent Assessment Participant Working Group with no published work. The recent Consultation Paper on Access and Independent Assessments had no questions on the appropriateness of mandatory IA’s as a process for scheme improvement. The NDIA

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CEO announced the implementation of IA’s back in October 2020. Now, when it appears to be too late, there is an opportunity to question the policy at a level that may make a difference. The volume and detail of material progressively published on the NDIS website indicates planning for the implementation of IA’s is well advanced. It is hard to see the IA process as anything other than dictated and inevitable.

Recommendations

e. SKWAD recommends IA’s be discretionary, not mandatory, available to participants who experience environmental barriers to providing the evidence required by the NDIS. Economic disadvantage, limited support networks, absence of qualified health professionals or wait times are some of the barriers that could meet eligibility criteria. Discretionary NDIS funded IA’s would help to address the social and economic barriers some participants experience obtaining evidence of disability and need, cited by the NDIA as justification for instituting mandatory assessments.

e. Applicants and participants eligible for an NDIS funded IA to have more agency in the assessment process, including choice of assessor and type of functional assessment.

e. The broad base of evidence currently supplied to the NDIS by applicants or participants be used across NDIS process and procedures including scheme access, planning decisions, internal and external reviews, in perpetuity where the reports/evidence remain relevant. Any relevant evidence is to be considered. Enduring evidence is supplemented as needed as circumstances change.

c. the human and financial resources needed to effectively implement independent assessments There is substantial economic modelling by the NDIA in support of the cost benefit to the community, including freeing up human resources. However, the need for disability diagnosis, review and management exist irrespective of the IA process. The most skilled and experienced practitioners do not from part of the assessment panel so their availability is not increased. There is insufficient, independent data evaluating participant satisfaction with the IA’s. Critically, we do not know whether the resulting budget is adequate. The IA framework cannot demonstrate an objective measure of “effectiveness” and justify the budget committed to the process.

At the time of writing the NDIA has recently announced the 8 organisations who will deliver the IA’s. The human resources these organisations employ to undertake the tests, given the scale needed and the demand on highly skilled and experienced individuals, will be relatively young and inexperienced. Despite the relative cost savings in employing such a work force, the cost of a permanent panel will be significant. Add the NDIA budget allocated to the development of the IA process, the budget to implement and maintain the process, a lot of public money is being allocated to a process with no objective measure of participant satisfaction. (See also the response to term of reference d. for some related content).

Recommendation

Short Term Actions

• In the short term, delay the rollout of the independent assessment process to conserve financial resources.
• For the purpose of further data to inform decision making, continue pilots which allow full and frank participant feedback on the IA experience.

Participant Feedback Opportunity

• Include test results and corresponding budget models in the participant feedback opportunity so “effectiveness” can be evaluated.

d. The independence, qualifications, training, expertise and quality assurance of assessors

Part of the response to “c”, that the assessors will generally be younger, less skilled and experienced applies. The NDIA has cast an unqualified blanket of doubt over functional assessments provided by a practitioner known to the participant, because of perceived “sympathy bias” (referred to in the 2011 Productivity Commission report no. 54, Disability Care and Support Report). We disagree with the premise presented in this term of reference. Irrespective of independence, qualifications, training, expertise and quality assurance, the NDIA’s method of determining functional capacity is flawed (see also responses to terms of reference e and g for related content).

Despite the measures the NDIA has taken to ensure independence, qualifications, training, expertise and quality assurance of assessors, community members report having little confidence in any assurances made by the scheme. These perceptions arise from years of experiencing changing rules, difficulty in navigating the scheme, uncertainty in receiving adequate funding, barriers to use the funding and, most unfortunately, the scheme does not have a person-centred approach.

In discussion with community members who participated in the second pilot study, it was observed that “anyone” trained in testing methodology could perform the tests. The use of allied health professionals was further described as “window dressing” to give a veneer of authority and reassurance in the likelihood the testing does not capture a true, correct and comprehensive assessment of the participant. Participants cited the tests and test conditions as barriers to providing accurate answers and a comprehensive understanding of the participants’ capacity, including but not confined to distress experienced by participants and carers, arising from the process.

Recommendation

• Abandon the current mandatory IA model and develop a flexible evidence model where any relevant information can be used for the duration of relevance, to determine reasonable and necessary supports.
• Where applicants/participants face social and economic barriers to providing sufficient evidence, NDIS funded assessments be available, not confined to practitioners contracted to perform assessments independently, for the NDIA.

e. The appropriateness of the assessment tools selected for use in independent assessments to determine plan funding

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In developing the current suite of assessment tests the NDIA quickly discovered a single functional capacity assessment test, it’s original objective, could not capture an accurate picture of functional capacity across disability types and age groups. Instead we are presented with a collection of tests, which is purported to overcome the reality that each person with a disability has a unique disability profile and circumstances.

SKWAD examined the tests for participants of high school age and 18yrs +. We concluded the tests, as a single most important arbiter of plan funding, are likely to provide inaccurate and incomplete assessments of the individual. The problem lies in the nature of the tests and how they are conducted.

The suite of tests are in interview format and results rely on the accuracy of the answers. Accuracy is subject to real and significant barriers including the degree of insight and objectivity of the person answering, the ability of the person answering to contextualize the question and answer, and, situational anxiety affecting participants and support person.

Community members who participated in the second pilot did not provide any positive feedback about the tests or experience, apart from the demeanour of the person conducting the test. All had concerns about the tests providing an accurate profile or score, had difficulty answering some questions, difficulty answering so many questions about deficits (no matter how the question is framed difference is being identified), found the tests a burden with a range of difficulty which in once case was intolerable.

I can extrapolate my son’s behaviour at his recent scheduled plan review meeting to an Independent Assessment. He quickly lost focus and ability to organise, despite having sensory supports, activities to focus on, drinks and snacks. To tolerate the meeting, avoiding overwhelm and flight, he chose unconsciousness. This meant for most of the meeting he lay wedged against a wall for a feeling of security, face shielded by his chair. On waking he started to self-harm.

My son’s primary diagnosis is Autism Spectrum Disorder (ASD) Level 3. As my personal experience includes tutoring other individuals with ASD and interaction at a professional and personal level with parents and carers of individuals with ASD, I can report a more general concern about the IA process. An individual, irrespective of spectrum diagnosis, has a dynamic disability that can fluctuate dramatically and frequently. Whilst some of the tests are designed to assess ASD the complexity of the individual with ASD and the simplistic IA process does not support accurate result/profile. Communication difficulties are a core deficit in ASD and participants capable of answering questions independently may unintentionally prejudice answers through literal interpretation, inflexible thinking and rote responses. (See term of reference k. for related commentry).

Recommendation

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1. The NDIA to retain existing participant evidence, recognise stable evidence, identify evidence deficits and complete the evidence deficit through participant sourced/sanctioned assessments, funded by the NDIS for eligible participants.
2. Approved functional assessments are not confined to the existing suite. Any relevant report or evidence to be admissible. The resulting more complete and enduring evidence base informs a simpler process going forward.

f. the implications of independent assessments for access to and eligibility for the NDIS

SKWAD has observed school-aged applicants denied access because of a deficit of evidence of functional capacity. We welcome an access process that requires functional capacity assessment and assists eligible applicants to access to that information. However, we do not support the proposed IA’s as the exclusive final determinant of access to the NDIS or as the primary source of the first plan budget.

We are also concerned about vulnerable persons and their ability to access the NDIS. This is an ongoing concern, existing in the current scheme and continuing in the proposed changes to access. Where informal supports are limited or vulnerable in themselves, there will be difficulties meeting access requirements and timeframes. Where formal supports are limited in how they can respond to NDIS access requirements there will continue to be difficulties meeting the access requirements and timeframes.

Student information and circumstances are confidential so we cannot detail individual situations. We can outline the type of vulnerabilities encountered including single parent families, poor support networks, multiple family members with a disability, parents/carers with a disability, parents/carers with mental health challenges, parents/carers with socio-economic disadvantage and parents/carers from culturally and linguistically diverse backgrounds. Students who are in state care have particular difficulties providing information or responses to any government service.

Recommendation Consider any relevant information in determining access requirements and support vulnerable persons meeting economic/social barriers criteria, meet access requirements.

g. the implications of independent assessments for NDIS planning, including decisions related to funding reasonable and necessary supports

We are not aware of any information that explains how IA scores and environmental factors translate into a funding amount. Crucially, there is no data examining participant satisfaction with the resulting budgets. In the current scheme, planning is about identifying goals, the supports needed to achieve those goals and building a budget based on the supports. Funding is dependent on the provision of a prescribed evidence base, and application of the reasonable and necessary test.

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IA’s will turn budget building into budget rationing or rationalising. An adequate budget funding all the reasonable and necessary supports needed, is the best possible outcome. The NDIS has not provided any evidence, that we can see, to prove how many participants, if any, will receive an adequate budget. An inadequate budget will result in participants forgoing supports, on a sliding scale, dependent on how inadequate the budget is. An inadequate budget means less support, less choice, less control and poorer outcomes. Outcome areas include social and community participation, economic participation, health and wellbeing.

Using my son as an example, a reduced budget could mean reducing attendance at his day programs, community access on the weekend, behaviour support, occupational therapy, speech therapy, specialised psychology, short term accommodation, consumables and assistive technology, travel allowance and plan management. As the NDIS has more than sufficient evidence that current supports are reasonable and necessary, including 26 new documents lodged for the recent planning meeting, a reduced budget would indicate IA’s do not capture participant need accurately enough.

Reduced budgets will also impact service providers. There has been significant restructure and uncertainty in Sutherland Shire during the past five years. Respite (short term accommodation) has been reduced to a single provider and the only higher support needs vacation care and after school care provider has ceased operating. This provider operates two of my son’s day programs. A high support ratio ensures my son can engage in meaningful and fulfilling work type activities including woodwork and nursery type work. Whether it is justified or not, I worry that these programs are at risk if IA’s are introduced.

Currently, when a participant needs a change of supports and doesn’t have enough funding or the ability to use their existing funding flexibly, they can request a plan review and provide evidence to support the request. Using the IA model, it is not clear if a request for more funding for supports would trigger a new IA, but with IA’s determining funding, it seems the likely mechanism. In the event a new IA is required, it would appear to be an overuse of resources and a clumsy tool for the purpose.

During 5 years of participation, my son’s funding has increased, in part because, with the right support his capacity to participate in the community has improved. This result reflects the stated purpose of the NDIS. Capacity building is a process. Determining funding through mandatory IA’s will make it extremely difficult for participants, going forward, to build capacity in the manner my son has been able to. Without funding flexibility, the capacity building intent of the Scheme will be compromised.

The NDIA claims IA’s are not about reducing plan budgets. The community SKWAD interacts with finds it hard, after years of experience, to trust what is promised. As a representative of SKWAD and in an individual capacity, I have presented at various peer support forums, mainly in the Sutherland Shire, explaining how the NDIS works and sharing personal experiences. Presentation content has changed over time, reflecting changes in NDIS practice, procedure and the participant experience.

Participants, parents and carers attend presentations because they need more support to successfully navigate the NDIS.

From the onset the Scheme has been complex and presented barriers to vulnerable cohorts. The changing nature of practice and procedure is one of those barriers. Changing the way in which budgets will be determined without irrefutable evidence that participants will not be worse off indicates the NDIA does not understand how difficult the accumulation of change is for participants. More concerning, acting on IAs without proof of “no worse off” is a breach of trust.

Recommendation

Retain a planning process that allows participants to build budgets and amend budgets, as needed.

h. the circumstances in which a person may not be required to complete an independent assessment We submit the first criteria cited in the Consultation Paper: Access and Eligibility Policy with independent assessments, as follows; e) Risk and safety: where the process is likely to do more harm than benefit to the individual, and may pose a safety risk to the individual or assessor… could apply to any participant who finds an IA a distressing process. This interpretation may not be what the NDIA has in mind.

In my estimation my son will definitely find an IA does more harm than good. Based on his reaction to and behaviour at the recent plan review meeting, described in the response to “e”, I can state unequivocally that he will not cope. However, the lengths to which I will need to go to prove the case are unknown so it is not possible to comment on how criteria e) is administered.

The second criteria; f) Assessment is inaccessible or invalid: where there may be concerns about the process producing valid information and other sources and/or forms of information are better suited… again could apply to all participants needing more than a generic, snapshot-in-time-and-place assessment. Scheme entry is dependent on the existence of a serious, life affecting, lifelong Disability so it would follow the IA process serves no participant. This interpretation does not align with NDIA confidence in the efficacy of IAs. It is not possible to comment on how the NDIA will administer criteria f).

Recommendation

1. Make independent assessments discretionary and optional.
2. Accept a broad base of evidence.

i. opportunities to review or challenge the outcomes of independent assessments There is no opportunity to review or challenge the outcomes of independent assessments. This means the IA process cannot be tested, held to account and lacks procedural fairness.

Recommendation

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Participants need to be able to challenge any process that informs the funding of reasonable and necessary supports.

The review process proceeds internally and considers evidence in addition to the IA.

External review subsequently available.

j. the appropriateness of independent assessments for particular cohorts of people with disability, including Aboriginal and Torres Strait Islander peoples, people from regional, rural and remote areas, and people from culturally and linguistically diverse backgrounds

The cohorts currently experiencing most difficulty and disadvantage in engagement with the NDIS will continue in that experience, with magnification. This is because the barriers to assessment accuracy are magnified. The particular cohort most familiar to us is people from culturally and linguistically diverse (CALD) backgrounds. Staff working at the Special Education unit we support, corroborate our observation of the difficulties CALD participants, parents and carers experience understanding the NDIS and managing plans.

A fellow presenter at a forum for local vocational networks, was there to speak about the NDIS participant experience. The gentleman was highly skilled and highly educated in his country of origin, Iran. Despite this, he explained his English skills and computer skills were insurmountable barriers to the use of his daughters’ plan. At the time of presenting, no supports had been purchased and the gentleman said he needed someone to tell him and show him what to do. His repeated appeals for help from his Local Area Coordinator had not produced the sort of help he needed. Participants, parents and carers with similar barriers are the voices least likely to be able to submit to the committee.

Recommendation 1. Accept a broad base of evidence. 2. Make independent assessments a secondary consideration for particular cohorts of people.

k. the appropriateness of independent assessments for people with particular disability types, including psychosocial disability

Our members are parents/carers of participants or potential participants with diverse disabilities which are usually complex. There is general concern about the appropriateness of IA’s irrespective of disability type, for reasons already discussed in this submission. The most common disability is autism, with additional intellectual disability. Concerns for individuals with ASD and the IA’s include communication difficulties, disordered sensory processing and self-regulation, behavioural difficulties, limited interests and focus and the dynamic nature of difficulties, which can escalate rapidly and frequently. The complexity and unique combination of characteristics of any individual with autism presents challenges of understanding for the people who support them. This will be reflected in the accuracy of responses at IA’s.

Recommendation 1. Accept a broad base of evidence.

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2. Make independent assessments a secondary consideration for particular disability types.

e. any other related matters SKWAD is concerned about the accumulated changes and continuing changes to the scheme, which so far have not substantially improved participant, parent/carer and nominee difficulties with engagement and outcomes over 7 years of operation. For the reasons outlined, IA’s have the potential to reduce plan funding, reducing participant access to reasonable and necessary supports. The experience of ongoing uncertainty takes a particular toll on persons with a disability and the people supporting them. Whilst the NDIA acknowledges that change can be difficult, it does not seem to comprehend the burden that is created and the toll it takes. The scheme has the appearance of being made up as it goes along.

Members and our wider community generally perceive the NDIA’s number one priority is not person-centred (individual participant) planning.

Personally, whilst some interactions with NDIS employees (NDIA staff and community partners) have been caring and professional, some employees have not displayed the desired care or skill. Overall, despite the positive interactions, I have the impression my son is a number and all that has stood between him and inadequate support is my ability to advocate for his needs. The IA proposal will take that ability away and replace it with a process I have no confidence in, partly because of who has designed it.

Even now, before the introduction of IA’s it seems the NDIA is not considering individual circumstances. At the scheduled planning meeting in early March, I requested increased funding for an existing support, to increase frequency because the support was working. Evidence to support the request came from a number of health professionals and allied health professionals, along with my own report and physical evidence. I also asked for reduced funding of a support item that was not working as well as anticipated. In reply it was indicated the NDIS is not increasing plan funding at this time and there could not be an increase in the overall budget. Plan length, without notice, was also a non-negotiable 2 years.

Conclusion

Any request for clarification or further information is welcome.

Helen Mabbutt President Endeavour Special Kids With A Disability