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

Risk analysis from economic, equity and ethical perspectives

March 2021

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The original submission was made in response to concerns raised about independent assessments. e The current assessment process has been criticised due to its perceived lack of transparency, e insufficient consideration of individual circumstances, and potential biases that may disadvantage vulnerable individuals. e A key concern relates to how assessors are trained and monitored, with some arguing there needs to be more oversight to ensure consistency and fairness across all cases. e There have also been questions around whether sufficient weight is given to medical evidence provided by treating practitioners or other relevant professionals.

Many submissions highlighted a need for greater engagement between NDIA staff and people seeking access to NDIS supports as well as their families/carers; this would help build trust within communities impacted most significantly when decisions regarding eligibility criteria change unexpectedly without adequate explanation beforehand – something which frequently occurs currently causing considerable distress amongst those affected directly through these processes.

Recommendations

Stop the implementation of the Independent Assessment Panel (IAP) model and broader proposed NDIS reforms, and conduct:

1. Independent and rigorous economic evaluation of the multi-faceted cost-risks associated with the proposed National Disability Insurance Scheme (NDIS) reforms (See Section 1).
2. Review of the IAP model and NDIS reforms to ensure systemic safeguarding of access to reasonable, necessary, safe and equitable support, with a specific focus on the impacts of the proposed process to increase automation of NDIS funding decisions (See Section 2*).
3. The establishment of an ethical framework governing NDIS decision making at governance and policy levels (See Section 3*)

*Key points have Section 2 & 3 have also been submitted to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability inquiry on Quality and Safeguards.

Introduction

This submission highlights concerns pertaining to the economic value of the reforms; risks to reasonable, necessary, safe and equitable access to funded disability supports; and the risks associated with the absence of an ethical framework underpinning NDIS decision making at governance and policy levels.

The submission asks the Committee to establish a process to rigorously and independently examine the multi-faceted costs associated with the proposed NDIS reforms. While the broader disability sector is committed to working towards the financial sustainability of the NDIS, to date there has been no evidence or data published indicating how the proposed NDIS reforms will achieve this. By contrast, the Productivity Commission [1] [2] completed substantial economic modelling and indicated that the NDIS would be economically self-sustaining, and concluded that the benefits of the NDIS would outweigh its costs enhancing Australia’s Gross Domestic Product (GDP). The Productivity Commission [1] [2] warned against equating NDIS cost-to-government as cost to the economy.

the proposed reforms appear to focus squarely on governmental cost containment, with unassessed risk of both intended and unintended consequences including upon GDP. The shift in focus from a person centred strategy to a cost containment strategy is clear from the current National Disability insurance Agency (NDIA) Corporate plan 2020–2024 [3]. The reforms represent a departure from the previous broader definition of financial sustainability:

“Financial sustainability for the NDIS is defined as the Scheme being successful across a range of measures, including: economic and social participation of participants; independence of participants; Participants accessing enough money to buy goods and services that allow them reasonable access to life opportunities.” [4]

The shift in strategy from a person centred focus to one of cost containment is reflected in the broad suite of suite of reforms under implementation by the NDIA, including Independent Assessments (IA). As evidenced by the publicly available submissions to the recent NDIA consultation; By media and social media outcry; And by widespread anecdotal participant concern and distress these policy reforms are not in tune with community expectations or acceptable disability policy standards in contemporary Australia.

Independent Assessments

Submission 278

1.0 Can Australia afford the cost of proposed NDIS reforms?

1.1 IAP comparative cost analysis to alternative assessment models.

According to the NDIA CEO (Senate Estimates, 25/03/2021), the cost of the IAP will be $339 million over three years, to cover 518,000 Independent Assessments. This equates to approximately $650 per eligibility screen assessment. The cost-effectiveness of IA has not been evaluated, or cost-compared to alternatives.

Once a new program is rolled out universally across the country, the opportunity to carry out methodologically rigorous research with appropriate controls is lost. Previous changes to the NDIS have been substantially trialled for both cost-effectiveness and process-effectiveness within distinct geographical areas, enabling sound test-and-refine model development. This has not occurred with the proposed independent assessment process, which has undergone limited piloting which measured participant satisfaction only, not process-effectiveness.

There is merit in further exploring alternative allied health assessment models which may hold practical advantage, such as cost-effectiveness, and importantly, superior ‘reach’ to our most vulnerable people and communities. Alternative models, such as the National Assessor Endorsement Program (NEAT) proposed by Occupational Therapy Australia (OTA) [5], have not been comparatively evaluated. The NEAT model, fwhich could be further developed through participant co-design, proposes the development of a functional assessor endorsement program that appropriately skilled and experienced allied health professionals could choose to undertake, to register them to offer functional assessment compatible with NDIS needs. The model would not require costly establishment of a new national service infrastructure, as it would utilise and build the existing skilled provider base. (Appendix 1). Importantly, this model would be consistent with the original IA process outlined in the Productivity Commission report 2011 [2].

1.2 The cost of exclusion.

A will pose a barrier to Scheme access for some groups. This was identified as a potential risk, by the 2019 Tune Review [6]. Mandating people with disabilities to engage in an IA process where they do not have the functional capacity to complete creates a procedural and systemic barrier to access, and participate in, the NDIS. It raises significant concerns regarding equity of access and equity of IA process. People without functional capacity to complete the IA will require an alternative process and pathway to assess eligibility for the NDIS, however none has been offered.

Should the eligibility assessment process outlined in the IAP model be rolled out nationally, there would need to be a parallel process to screen for harmful impacts, including cost-shifting to the health and other systems. Internationally, there is precedence for substantial harm, and widening social inequality, associated with large-scale benefit-eligibility assessment delivered through checklist-based assessment [7].

1.3 The cost of inequity.

International evidence and experience highlight the risk of inequity inherent in personalised and individualised social funding models, without a targeted policy response to address it [8]. The phenomenon is termed the ‘Inverse Care Law’. In short, people from higher socio-economic status (SES) communities benefit more from personalized funding schemes, as they tend to have greater capacity for self-advocacy and negotiation skills to navigate complex systems. This phenomenon is noted internationally and, as such, is not unique to the NDIS [8].

The NDIA were alerted to this risk by policy analysts since the NDIS was conceptualized. So, the current data highlighting NDIS socioeconomic inequity (people in higher SES postcodes having greater access rates, and better funded plans) should not be a surprise, as there has never been a targeted policy strategy to prevent its occurrence. Substantial responsibility for plan inequity sits with the NDIS workforce – NDIA delegates– as funding decisions sit squarely with this group. Access to privately funded therapy reports is a factor driving access inequity, not plan amounts or funding inequity once

Independent Assessments

Submission 278

A participant is accepted into the Scheme (as the cost of ongoing therapy reports is generally covered by the NDIS). Yet the NDIA repeatedly cite plan size inequity as a driver for broad NDIS reform, without published analysis of the drivers of inequity. There is a vast assumption that an untrialled IA process, instead of underpinning economic modelling, will lead to greater funding equity.

Additionally, having greater capacity for self-advocacy and negotiation skills to navigate systems is likely to have more benefits with the introduction and additional processes associated with IAs as it adds layers of complexity. For example, an applicant could fund their allied health professionals to support them through the IA process by having them attend the assessment process and seeking support to arepare for an IA.

The Government and the NDIA show awareness that, at face value, for the majority of Australians who will engage briefly over media or within tweets, focusing on values appears reasonable.

Housing variability in levels based on needs, aspirations and goals was promoted heavily prior promotion of the IA processes which removes link between goals and funding. Given connection between goals and funding, exploring providing building support people disability explore articulate aspirations part planning processes would be logical step addressing inequities.

The pathway report published February 2018 describes how tailored approaches are required address outcomes interestingly provided critique proposed reforms. The website described work initiated:

“The NDIA initiated ‘Pathway Review’ April 2017 address feedback about interactions NDIS. Worked wih stakeholders from states territories identify areas improvement ensure consistent positive experience. Feedback captured ‘Improving Participant Provider Experience’ released February 2018.” (https://wwwndisgovau/news/1215-ndispathwayreform accessed .)

The Tune considered this report stating:

“Review acknowledges developed strategies improve participant experience Much generated following review pathways participants identifying improvements included: specific gateways; service streams psychosocial hearing loss targeted deliver suited specific disabilities communication engagement backgrounds regions including Aboriginal Torres Strait Islander peoples CALD communities LGBTIQA+.

Independent Assessments

Submission 278

The ‘Pathway Review’ report states:

“Since early April 2017, the NDIA has been working with individuals and in workshops with more than 300 stakeholders from all states and territories to identify what needs to improve and how that might occur. From that process, 400 specific improvement ideas and 200 solution opportunities were identified. The Pathway Review also considered Productivity Commission submissions outlining improvement opportunities, feedback from the Independent Advisory Council and views expressed at the Joint Standing Committee.” (P. 8)

The NDIA’s current proposal of a disability and cohort-neutral assessment approach is at odds with the previous NDIA position expressed in the Improving the NDIS Participant and Provider Experience report that states:

“The NDIS recognises that every participant is unique, and that a one-size-fits-all approach is not appropriate. The Agency is working to tailor the participant pathway to meet the needs of specific population groups. Tailored pathways are being designed in close collaboration with participants and other stakeholders.

The six tailored pathways to be designed or enhanced are for:

• Early Childhood Early Intervention (ECEI)
• People with complex needs
• People with psychosocial disability
• People within Aboriginal and Torres Strait Islander communities
• People within remote and very remote communities
• People within culturally and linguistically diverse communities.

Independent Assessments

Submission 278

the allocation process for NDIS funding will have impacts on supports and services that may prevent violence, abuse and neglect and exploitation of people with disability.¹

As an alternative, the NEAT model would prevent costly duplication of assessment process, as the functional assessment would include tailored, needs-specific recommendations for supports [5] (Appendix 1).

Individual support-needs assessment and funding not only reduce the costs associated with complex, compounding, unaddressed disability support needs, but also reduces the likelihood of abuse, neglect and exploitation [9]. The cost of bypassing support-needs assessment in favour of an actuarial model of automated, generic funding packages, is unevaluated and may be economically unviable; and harmful or even fatal at an individual participant level.

1.5 Impacts on the allied health disability workforce.

The viability of the IA allied health workforce is subject to significant risks. The proposed IA model has been declared clinically flawed, inaccurate in its capacity to assess functional capacity, and unfit for purpose [5]. The absence of systemic safeguards to prevent the establishment of a flawed assessment model places participants at unprecedented risk of harm; and individual therapists are also at significant risk of breaching professional Codes of Conduct, Codes of Ethics, and competency standards, all of which are reportable to the Australian Health Professional Regulation Authority (AHPRA). Therapists assessing disabilities for which they do not have sufficient skill, training or experience, are likely to not be covered by their professional indemnity insurance policy. There are existing anecdotal reports of pilot participants reporting assessors to AHPRA.

Additionally, the NDIA in its role as market steward, has not published an analysis of the impact of developing an IAP workforce, on the broader disability allied health workforce.

OTA has critiqued the IA panel model as ‘anti-competitive’. Anecdotal evidence from allied health practices highlight the impact of outsourcing assessments to panel providers, and in many instances, allied health businesses will no longer be viable. Disability specific and “niche” providers, detailed to the specific needs of groups of people with particularly disabilities, are likely to be most strongly impacted. Without these providers, the diversity and speciality of service offerings, are diminished. This impacts participant choice and control -as the provider pool is reduced. The panel assessor teams contribute to further generalization (and possibly, deskilling) of the allied health workforce, as allied health assessors will not be required to use professional judgement or clinical reasoning. According to the original IAP tender documents (June 2020), therapists employed by IAP contractors will not provide recommendations on the support needs of Participants or Prospective Participants, or provide any clinical or other professional advice to Participants or Prospective Participants.”,

1.6 The cost of reduced capacity building opportunity.

The NDIS Corporate Plan [3] states:

By building the capacity of people with disabilities, we empower them to assist in furthering a more inclusive and prosperous Australia.

However, the NDIS reforms Consultation papers [10] mention capacity building only on two occasions. Firstly, to point out that capacity building can trigger a re-eligibility assessment. Secondly, to explain that

Capacity Building in the National Disability Insurance Scheme

anyone wanting to do a Capacity Building program should “swap” their usual supports to make it happen. This reflects a substantially reduced focus on capacity building, under the NDIS reforms. Indeed, the proposed reforms provide a disincentive for people with disability to build their skills and capacity, as these activities may trigger a re-eligibility assessment or an IA that risks them losing access to essential NDIS supports.

Reduced focused on capacity building, combined with removal of participant goals-based funding, shifts the NDIS from a social model of disability to a model of passive coping with disability. There is not sufficient scaffolding in the proposed NDIS reforms, to enable people with disabilities to reach their potential. In an underfunded or tight budget that has not been tailored to individual support needs, the participant may be pushed into a position where they need to use available funds to sustain basic daily ‘core’ supports, to cope and survive. Capacity-building and skill-building, become a luxury, rather than a fundamental element of the participants support structure.

Return-to-work goals for both participants and carers, will be impacted. This will have substantial economic impact on the person, the carer, and broader economic impact at a population and GDP level.

Hence, the NDIS becomes a model of passively coping. Effectively, participants are at risk of becoming trapped in a cycle of passively coping rather than actively participating, in their own lives, and society. When you consider this in the context of a policy and proposed legislation that no longer values participant goals or potential, or indeed social and economic participation, red flags abound. THIS is the essence of the departure from a social model of disability.

The Royal Commission into violence, abuse, neglect and exploitation of people with disabilities Issues Paper on Safeguards and Quality highlights the necessity for systemic safeguards to protect the safety of people with disabilities. As the primary governing body overseeing reasonable, necessary, and safe access to disability supports in Australia, the National Disability Insurance Agency has an obligation to provide exemplary practice in this regard. This Submission explores the limitations of current systemic safeguarding by examining two major developments in NDIS policy and practice. Firstly, policy reform in determining access to reasonable and necessary disability supports. Secondly, the engagement of NDIS participants in the Independent Assessment pilot.

2.0 Systemic safeguarding of access to reasonable, necessary,

safe and equitable disability supports.

Significant reforms to the way in which the NDIS will allocate funding to people with disability are planned [10]. These reforms will change the resources people with disability will be eligible for under the NDIS. The Submission queries whether there has been critical examination, both internal and external to the National Disability Insurance Agency (NDIA) of these reforms to understand their impact, prior to confirmation of intention to implement. Without economic modelling, comparison to alternatives, and a trial of the reforms enabling comparison to current routine resource allocation, have participants right to reasonable, safe and necessary disability supports, been safeguarded? And most pertinently, what are the risks of neglect and exploitation, if these safeguards have not been robust?

The resources available to people with disability via the NDIS, and the corresponding supports that people have access to, are critical to help to prevent violence, abuse, neglect and exploitation of people with disability. Adequate funding to ensure access to safe and quality, is preventative of harm [9]. Changes to the allocation process for NDIS funding will have impacts on supports and services that may prevent violence, abuse and neglect and exploitation of people with disability.

Independent Assessments

Submission 278

While legislative changes are required to enact the proposed reforms, a draft version of the legislation is yet to be made available for public review. It is likely that Section 34 of NDIS Act 2013, which relates to thefunding of reasonable and necessary supports, will need to be amended, as the proposed changes to fundingallocation are not possible under the current NDIS Act 2013. Public review, and disability sectorand participant scrutiny and feedback, form an important step in maintaining transparency andsafeguarding the rights of people with disability. The United Nations Convention on the Rights ofthe Person with Disability (UNCRPD), which Australia signed in 2007, and the NationalDisability Strategy 2010–2020 (2010), emphasise the inclusion of people with disabilities indecision-making and discourse, and in ensuring system design is fit for purpose [11] [12].

The NDIS reform plans have been confirmed via policy documents {10], and significant elements of thereforms are being implemented via a pilot of the independent assessment process, prior to therelease of draft legislation, with the assumption that legislation change will pass. Developing,“communicating” and confirming the implementation of a national policy reform determining accessto essential disability support, based on an assumed and ‘hoped-for’ legislation change,is not consistent with a robust, planned, and quality-assured approach to systemic safeguarding.

2.1 What Safeguards protect participants during the transition from reasonable and necessarysupport funding, to proposed standard funding packages based on an Independent Assessment?

A lack of transparent information exists about the “heart” of the proposed NDIS reforms to enablemeaningful discussion. What is being proposed is a significant change to how the NDISwill allocate funding[10]. It will have a significant impact on what supportspeople with disability can access.

Current allocation of disability funding is based on identification of reasonable and necessar ysupports needs,not a standard funding package tied to a predetermined dollar value,based on an IndependentAssessment (IA). That is, the NDIS must fund supports that meet thereasonableandnecessary criteria as outlined in the NDISA ct 2013. Currentfunding levelsin NDI S plans are made upofan individualised, tailoredpackageofs specificsupp orts ,each meetingthe reasonabl eandnecess arycriteria .

What isproposedist hatth eN DIAw illfundstandarddollar -valuepackages, rather than specificsneeds - based support(Please referto Table 1 ).Essentially, thismeansthat th eNDI Swilldeterminea standar ddo ll ar-valu eb ase donanIndependentAssessmen t( IA),ratherthanfu ndingspecificneed s- basedsupportsthat suppor tp eo plewithdisabilitytosustainandbuildfunctionalcapacityandworktowardstheirgoals .Itisimportantt omentiontha tt hepro posedreform sb reakthel inkbetweengoalsandf unding, and propos est hatt goalsrelateonlytoh owth efu n dingiss penti .e.,th ep articularicanthouseh eg enericfun dingpackag et o worktowards theirgo als.

As outlines inTable 1,thereisanabsenceoftransparencyonhowthedollar-amountcontainedwithin thes tand ard funding packages will be calculated – and how the NDIA can support the assumption that standard packageswill meet disability support needs. Also, the avenue for participants to appeal afunding package that does notmeettheir needshasnotbeendisclosed. Currently ,ifaperson withadis abilityisfunded aspec ificsupport (includingthe frequencyorthe intensityofaparticularsupp ort) apers oncanseekareview ofthe decisionbasedont hereasonableandt hen ec essarycriteriaoutlinedinthe NDISAct2013 .

Under then ewpolicy,itappear st her outet oa ppealmayb ev iaanot hered IA,repeating th efl aw edprocess–potentiallytrappingth aparticipantinacy cleo f inadequate suppor t,andan escalatingrisko fh arm,a ndneglect ofdisabilityneeds.

Itisunclearhowto challen gedecisionifa mountoff undingallocatedt ot hepersonisnotsufficienttopurchaseessentialdisabilitiesupports .Howcana standar ddollar -amoun tb eau tomatic allydeemed‘reasonableandnecessary’ifi tisdivorcedfromindividualparticipantssuportneed? Therisko f 8

Independent Assessments

Submission 278 unmet support needs is high, which sets the scene for neglect of individual support needs, and of individuals failing to reach their full potential. The transition from individually designed packages to standardised funding amounts represents a fundamental structural alteration within the National Disability Insurance Scheme (NDIS). This significant shift lacks clarity and openness as detailed in the consultation papers ([10]) and accessible resources intended for people living with disability. another area requiring more visibility concerns how the consultations have connected flexible spending options under the scheme’s guidelines to these planned adjustments; it suggests introducing independent assessments will increase adaptability—however, it seems like this could be achieved through smaller modifications without needing new legislation nor implementing them at all.

Independent Assessments Submission 278

Current NDIS Funding | Proposed NDIS Funding Based On Reforms: |––––––––––| |Funding in NDIS plans is based on specific supports–based on individual goals support.|Funding is based on a dollar value linked to Independent Assessment, not individual support needs, and not linked to goals. |For example, a $54 360.30 total NDIS plan value based on a collection of support funding including assistance with self-care activities, assistance to access the community, allied health service and home modifications ($11 000).| For example, $50 000 total NDIS plan.

The Criteria for determining funding:

• Reasonable and necessary funding criteria as outlines in the NDIS Act: (a) The support will assist the participant to pursue the goals, objectives and aspirations included in the participant’s statement of goals and aspirations; (b) The support will assist the participant to undertake activities, so as to facilitate the participant’s social and economic participation;
  (c) The support represents value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support;
  (d) The support will be, or is likely to be effective and beneficial for the participant, having regard to current good practice;
  (e) The funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide;
  (f) The support is most appropriately funded or provided through the National Disability Insurance Scheme, and is not more appropriately funded or provided through other general systems of service delivery or support services offered by a person, agency or body, or systems of service delivery or support services offered:
  (i) As part of a universal service obligation; or
  (ii) In accordance with reasonable adjustments required under a law dealing with discrimination on the basis of disability. | Not disclosed. |Flexibility (Ability to choose which supports to purchase)| Three categories of funds- Core, Capacity Building and Capital (Funding can be used flexibly within in Core, less flexibility in Capacity Building and Capital.) For example, $39 000 in ‘flexible’ category and $11 000 in fixedcategory for home modifications.| Two Categories of Funds - ‘Fixed’ Or ‘Flexible’. The process of challenging Funding decisions:| A Person With A Disability Can Challenge A Funding Decision If They Have Not Received Support Based On Reasonable And Necessary Criteria. For Example, A Person May Require Additional Four Hours Of Personal Care Per Week Currently they will know how many hours personal care per week are funded in their plan & challenge this decision. If NDIS legislation changed so that criteria funding primarily based independent assessment inputs it may become very difficult people disabilities challenges funding decisions The impact reviewing processes concerning element proposed reforms. | Not Disclosed. As specific Supports Are not Funded person Disabilities Will Need Challenges Total Plan Amount It unclear How This Would Occur . A person requires additional four hour personal cares however is unclear how would challenged as was not based Specific Needs Rather Dollar Value Functional capacity Inputs Standardised Assessment Tools

Independent Assessments Submission 278

2.2 What Safeguards underpinned the development and pilot of Independent Assessments (IA)?

What criteria will be used to determine the standard dollar amount described above, given current reasonable and necessary criteria are applicable to individual support needs, not a standard, ‘fixed dollar amount’ funding package?

The proposed IA process offers a potential answer to this question. The features of the IA process, including the selected assessment tools, has confused many and has raised a number of concerns (See Appendix 3). It appears the purpose of the IA is to determine a numerical input to match the participant to a standard dollar-amount of NDIS funding.

It appears that the design of the IA process with the use of standardised assessments will provide a set of consistent inputs that will enable the NDIA to determine dollar values for NDIS plans based on actuarial modelling. This need for a consistent set of inputs is why the same assessment toolkit are used across all disability types.

However, allied health professional groups have raised concerns that the IA process results in an “inaccurate” assessment of functional capacity, and that the IA does not have a supporting evidence base (Occupational Therapy Australia (OTA), OTA Virtual Exchange 2020, September 7th). These concerns have not yet been addressed. In addition, allied health professional groups have stated that their input to developing specific aspects of the IA, has been taken out-of-context and generalised for use with people with disabilities, in ways it was not intended to be (Speech Pathology Australia, 2020) [13].

The proposed introduction of IA caused much concern (See Appendix 3). For example, people with psychosocial disability have raised concerns that their functional capacity will be assessed using assessment tools that are not valid for psychosocial disability. IA assessors will not have access to previous disability, health and medical information to tailor the assessment process to individual circumstances. Critically, IA assessors will not have all relevant information to ensure a trauma-informed approach to assessment creating a significant risk of re-traumatisation of people with disability.

The NDIA has indicated that the use of the same assessment across all disability types is supported by the World Health Organization International Classification of Functioning, Health and Disability (ICF). This not the case. While the ICF does encourage disability-neutral conceptualisation of function, it does not support a disability neutral approach to assessing and measuring functioning and disability. Rather, it supports recognition of the variance of disability across a range of disability-types. This is most evident in the ICF Core Sets which are a set of assessments developed by the WHO that facilitate the description of functioning by providing lists of categories on specific conditions, including health conditions and specific disability types. (https://www.icf-core-sets.org/en/page0.php)

The NDIA does not mention the ICF Core Sets in its policy documents relating to the proposed reforms [10], including the IA process. This is not surprising given the ICF Core Sets are disability type-specific assessments and would not be suitable for the proposed process that requires consistent numerical inputs to enable increased automation of funding decisions.

Independent Assessments

Submission 278

A lack of transparent information around the important details of the proposed reforms that will have the most significant impact people with disability, their families and carers (see table 2). There are limited details provided on how IA tools and their results can be used to determine access to the NDIS and how they will populate the amount of funds in a plan. What is of particular concern for existing participants is how IA results will be used to revoke access to the NDIS [10, p.22]

Figure 1: Proposed planning process for new and exiting participants aged 7 to 65 (from late-2021)

Step 1
Applicant undergoes an independent assessment, incorporating 
an assessment of functional capacity, including any environmental factors, and other individual circumstances.

Step 2 Missing details
An NOIS delegate considers a budget informed by the outcomes of  /-lowwill t he results of a number of standardised assessments me nt and a,n o bse rvation create a bu dget that will be co nsidered by the delegate?What is the rationale and evide nce for the proposed methodology?

Step J For example: do all individual assessment scores has equal value or are t hey we ighed ·differe ntly? Are the s.corescombined?Docertain scores or aicombinatiJn of scores correspond to a specific budget.
Participant receives a draft plan, including a draft :plan budget

Step 4 Planning conversation about the participant’s goals and how their community or moir stream supports and NDIS funds can be used to pursue these and meet their disability related support needs.

Step S A pion.~~ pe;sonolis~ b~dge!. is f,n_o~is~ by _the ~el~ote: i_?CIU,~ing

Figure 1: Proposed Access and eligibility process for people aged 7-65 (from late- 2021)

 Step 1 Submitting Assessment Form 
and NDIA requirements

 Step 2 Referral to Independent assessor

 Step 3 Assessing the independent

 Step 4 Decision made by NDA Delegate

 Step 5 Applicant informed of outcome

Missing details: How will the results of the proposed standardised assessments inform a delegate? For example, will the scores be compared to a normative population sample to inform access decisions?

Table 2 – Two examples of critical information missing form NDIA’s consultation papers on Access and Planning reforms. Without this information it is not possible for people with disability to engage meaningfully in the consultation process.

Independent Assessments

Submission 278

3.0 Risks due to the absence of an NDIS ethical framework.

Currently, there are no ethical frameworks specified within the NDIS legislation or governance frameworks. There is no ethics committee encompassed within the NDIA board or governance structure. This poses the question: how are decisions related to NDIS policy and practice examined from an ethical perspective? Ethical oversight is key to safeguarding NDIS applicants and participants. This Submission (section 3.1- 3.5 below) draws on the example of the Independent Assessment Pilot, as an example to illustrate risks associated with absence of ethical oversight.

3.1 About the Independent Assessment pilot.

According to NDIA communications, the pilot IA process is required to trial formal, standardised assessment tools, to explore the feasibility of including these in routine NDIS processes in future, for both access eligibility and participant planning purposes [14]. These tools are trialled with people with disabilities current NDIS participants who are approached and given the choice to ‘opt in’ to the pilot IA and offered payment to complete it.

The NDIA aim to run two pilots to test how they would implement independent assessments. To date, the NDIA has trialled 6 assessment tools in the independent assessment toolkit aiming to assess functional capacity. From November 2018 to April 2019, the NDIA ran the first independent assessment pilot. The pilot was held in nine metropolitan areas in NSW, with independent assessments offered on a voluntary opt-in basis to people applying for the NDIS as well as existing participants aged between 7 and 64 years [14, 15]. The pilot participants had a primary disability of Autism Spectrum Disorder (ASD), Intellectual Disability or Psychosocial Disability (PSD). These were chosen for the first pilot because they represent 63% of all NDIS participants [14,15]. The second pilot was postponed in March 2020 due to the coronavirus (COVID-19) pandemic, and recommenced in October 2020, with the stated aim of recruiting 4,000 existing NDIS participants across all disability types [15] .

Participation involves completion of standardised assessment instruments delivered by interview. The second pilot includes an observational assessment of participant [16] .

The pilot IA process then involves an interview delivering suite of assessment tools typically used in clinical practice by allied health professionals. It also requires the NDIS participant undergo an observational assessment task, chosen assessor. The assessor, contracted third party employee will have access to participant’s contact details as delivered them from NDIA. Process around informed consent, extent which NDIS participant information shared with third party has not been made publicly available.

In Australia internationally human research ethics principles guidelines ensure research safe ethical necessary that benefits outweigh potential risks National Statement on Ethical Conduct Human Research (2007 Updated 2018 ) outlines responsibilities researchers Australian context [17]. It sets down broad principles responsible accountable research practice identifies responsibilities institutions researchers areas such data record management publication findings authorship conflict interest handling allegations research misconduct Includes specific reference additional considerations required when conducting research groups people disabilities including people cognitive impairment intellectual disability mental illness States that for these cohorts,

Independent Assessments

Submission 278 vulnerabilities as research participants must be considered, as the capacity of a person with any of these conditions to consent to research, and the ability to participate in it, can vary for many reasons, including the nature of the condition; the person’s vulnerability to discomfort or distress; fluctuations in their condition; and the complexity of the research.

According to NMHRC (2018), human research is defined as research conducted with or about people, including:

• taking part in surveys, interviews or focus groups;
• undergoing psychological, physiological or medical assessment or treatment;
• being observed by researchers;
• researchers having access to their personal documents or other materials;
• access to their information (in individually identifiable, re-identifiable or non- developable form) as part of an existing published or unpublished source or database.

The National Statement on Ethical Conduct in Human Research (2007, Updated 2018), [17] National Health and Medical Research Council (NMHRC)

the IA pilot process meets all the human research criteria listed above, as per the national statement on ethical conduct in human research (nmhrc, 2018). the independent Assessment Pilot Evaluation, a document published on the ndis website, s \summarises the findings of the first NDIS IA pilot [14]. alongside publication of pilot findings, it delivers detailed description of the characteristics of the research sample (see document, a ppendix B ) [14]. The language throughout this document pertains to research, for e xample:

• This document states “The aim of pilot is to understand how the person’s disability affects function in daily life”. This is reflective of a research question.
• This document states the first ia pilot

Independent Assessments

Submission 278

disability. This process is not routine care or process for an NDIS participant and can be viewed as an invasive process.

Should an external body seek to complete a study using the same methodology as outlined in the IA pilot, researching NDIS participants, they would be required to adhere to the National Statement on Ethical Conduct in Human Research (NMHRC, 2018), and the study would be overseen by an independent Human Research Ethics Committee (HREC) [17]. Human Research Ethics Committees oversee ethical conduct in research practice, including, but not limited to: ethical research process; evaluation of risk of participants; informed consent; data and record management; publication of findings; conflict of interest; and the handling of allegations of research misconduct [17]. Why do these research standards not apply to research undertaken by the NDIA?

3.2 Ethical concerns regarding the Independent Assessment pilot.

A number of ethical concerns have been raised, by participants in the pilot [16], and other stakeholders [5]. These pertain to the IA assessment process itself, in particular, issues caused by an organisation holding the dual role of investigator and funder of essential disability supports e.g., the lack of boundary between the pilot process, and the participants regular NDIS planning and funding decisions; lack of transparency around how pilot findings will be used in future; and potential conflict of interest. All four of these ethical concerns are described below, all contribute to the potential for confusion, distress and harm to pilot participants.

• IA pilot participants and those requested to participate, and their families and carers, are raising concerns regarding the potential for confusion, stress, inconvenience and harm. Anecdotally, many report receiving calls, phone calls and emails, or a combination of these, requesting their participation. Some report receiving requests by various media, having already declined participation. As described below, many feel unsure about if and how their participation in the pilot, or refusal to participate, may impact on their future NDIS plan. While the IA pilot is ‘opt-in’, there appears to be confusion around whether this choice will have future consequences for the participant, and their NDIS funding. The pilot IA process itself involves a lengthy interview (up to 3 hours) and observation, and the disclosure of extremely sensitive information around functional capacity to an unknown assessor has the potential to be traumatic and stressful for vulnerable individuals. There has not been any published information on how these risks are mitigated; what external supports are offered; and if there is an external complaints avenue offered to participants, which would be standard practice for research studies overseen by a HREC. There is anecdotal evidence that the pilot IA results in distress, and embarrassment [16].

• Professional groups have raised concerns that the IA process results in an ‘inaccurate’ assessment of functional capacity (Occupational Therapy Australia (OTA), OTA Virtual Exchange 2020, September 7th). The proposed IA may not be fit for purpose to determine substantially reduced functional capacity, a requirement under the NDIS Act 2013, to determine eligibility for the NDIS. There is an absence of evidence supporting the assumption that functional capacity can be measured in a ‘disability neutral’ manner, in Australia or internationally. Research highlights the global absence of a single assessment tool or suite of tools, proven to have the ability to do this [23]. WHO ICF research branch developed the ICF Core Sets in acknowledgement of the functional variability between disability groups, further indicating the disability-neutral approach is not valid [22].

Independent Assessments

Submission 278

The use of a disability-neutral approach in the IA pilot is contrary to the National Statement on Ethical Conduct in Human Research (NMHRC, 2018) which highlights the need for additional considerations when conducting research with groups of people with disabilities, including those with cognitive impairments, intellectual disabilities, mental illnesses; and culturally and linguistically diverse backgrounds, and ATSI groups. [17] [19].

Two of the three IA tools proposed for psychosocial disability—the CHIEF and Vineland-3—have not been researched or validated for use with individuals experiencing psychosocial disability and were designed for other populations and purposes [24][25]. The invalidity of Vineland-3 regarding psychosocial disability where impairment stems from mental health issues aligns with findings within the NDIS Quality and Safeguard Commission’s Compendium of Resources for Positive Behaviour Support (p182)[26].

Construct validity refers to an assessment tool’s ability accurately measure what it intends to assess. Issues exist concerning construct validity within this IA pilot: For example, assessments using both Vineland 3 and CHIEF focus primarily upon adaptive behaviour and environmental factors rather than functional capacity.

A lengthy assessment process that may be flawed, inaccurate, or otherwise compromised raises concerns about integrity surrounding the implementation of the IA Pilot as well as whether benefits outweigh potential harm/inconvenience experienced by participants. The current approach is likely a breach of the NDIS Code of Conduct[28](which applies to all NDIS providers). An instance would include if an NDIS service provider utilized similar processes involving potentially unreliable instruments in order evaluate function; such actions constitute breaches under existing code requirements including those pertaining towards providing supports & services safely alongside competent care skills.

The presence inherent ethical considerations coupled possible conflicts interest arise when one organization simultaneously functions investigator while also funding essential support systems related disabilities—a situation creating uncertainty fear amongst individuals participating due its lack boundary between operational procedures participant planning /funding cycles impacting future access resources should they decline involvement during trial phase . Ambiguity surrounds how individual agency-assessment results will ultimately stored incorporated into pre-existing records –or combined novel ways utilizing information already contained therein now later on [14][15]. This document states “not used for any agency decisions at access or planning” yet concurrently claims pilot includes ‘estimates impact’ budget.[participant] plan

a Provider organisation highlighted clarity deficits regarding impacts routine NDIS procedure affecting prospective members invited participate within this program - describing questions raised:

o How do you guarantee assessment outcomes won’t shared without consent?

o Will there be negative repercussions associated declining participation?

Submission 278

o Will the assessment results be provided in an accessible format (including easy English), and explained to me? o How will the NDIA get feedback about the process, and how will they use it to make things better? o Will people who are trying to get into the NDIS still have to use the NDIS’ Independent Assessment process, or can they just submit their own reports if they have them and want to? The Growing Space [21]

3.3 Lack of transparency around how pilot findings will be used in future.

Alongside the lack of clarity on how IA pilot findings may be used in future for individual participants, there is a lack of transparency around how pilot findings may inform future NDIS processes and policy developments. As the IA pilot utilises a self-selecting ‘opt in’ recruitment process, the pilot cohort who have been paid for their contribution, will not be representative of the broader group of NDIS participants, many of whom do not have the capacity to engage in an IA. Therefore, IA pilot findings may not be generalisable to the broader group of NDIS participants, and not an appropriate foundation upon which to build a national policy. It is also unclear how or if participants will be informed if their data will be used to create models that will enable increased automation of funding decisions, or non-individualised funding packages. There are also concerns about data storage as IA consent information states that the IA pilot data is stored outside of Australia, where Australian privacy laws do not apply. This appears to be a possible breach of NDIA policy that states: “When we use third parties, such as community partners and other contractors, to perform certain functions, the third parties are contractually required to work in accordance with the Privacy Act and the NDIS Act, and to access and store all personal information using our IT systems, not their own.” [27]

Recommendations

Stop the implementation of the Independent Assessment Panel (IAP) model and broader proposed NDIS reforms, and conduct:

• 4. Independent and rigorous economic evaluation of the multi-faceted cost-risks associated with the proposed National Disability Insurance Scheme (NDIS) reforms (See Section 1).
• 5. Review of the IAP model and NDIS reforms to ensure systemic safeguarding of access to reasonable, necessary, safe and equitable support, with a specific focus on the impacts of the proposed process to increase automation of NDIS funding decisions (See Section 2).
• 6. The establishment of an ethical framework governing NDIS decision making at governance and policy levels (See Section 3).

Muriel Cummins, Master of Public Health AHPRA-registered Mental Health Occupational Therapist

References

1. Productivity Commission 2017 National Disability Insurance Scheme (NDIS) Costs - Productivity Commission (pc.gov.au)
2. Productivity Commission 2011. Inquiry report - Disability Care and Support Productivity Commission (pc.gov.au)
3. NDIA Corporate Plan 2020–2024. Corporate Plan | NDIS. Retrived 30/03/2021.
4. Ensuring the financial sustainability of the NDIS – Ensuring the financial sustainability of the NDIS | Actuaries Digital . (2017). Retrived 30/03/2021.
5. Occupational Therapy Australia Submission to the NDIS Consultation Paper: Access and Eligibility Policy with independent assessments OTA submission to NDIA - Access Policy.otaus.com.au. Retrieved 20 March 2021.
6. 2019 Review of the NDIS Act (Tune Review) NDIS Legislative Reforms | Department of Social Services, Australian Government(dss.gov.au). Retrieved 30/03/2021
7. Barr, B; Taylor-Robinson, D; Stuckler, D; Loopstra, R; Reeves, A. (2015). ‘First, do noharm’: are disability assessments associated with adverse trends in mental health? A longitudinal ecological study. Journal of Epidemiology and Community Health Vol 70 (4). BMJ Publishing Group Ltd..
8. Carey, G. et al (2019). Personalisation schemes in social care and inequality: reviewof the evidence and early theorising. Personalisation schemes in social care andinequality review of the evidence and early theorising | InternationalJournal for EquityinHealth| Full Text (biomedcentral.com) Retrived 30/03/2021
9. Royal Commission into violence, abuse, neglect and exploitation of people withdiseabilities. Interim report. disability.royalcommission.gov.au. Retrieved 31/1/2021
10. NDIS Access and eligibility Consultation Paper; NDIS Planningand Personalised budget Consultation Paper.ndis.gov.au . Retrieved 31/1/2021
11. United Nations General Assembly(2007) Convention on the Rights of Personswith Disabilities. Geneva, 2007. Retrieved 16 September 2019.
12. Department of Social Services (2010). National Disability Strategy 2010–2020.
13. NDIS Update: Independent Assessor’s Project | speechpathologyaustralia.org.au. Retrieved 31/1/2021
14. https://www.ndis.gov.au/participants/independent-assessments/second-independent- aassessment-pilot. Retrived 05/01/2021
15. [https://www.ndis.gov.au/participants/independent- assessments/independent- asessment-pilot#why](https://www.ndis.gov.au/participants/independent-assessments/independent- assessment-pilot#why) Retrived 05/01/2021
16. NDIS autism assessment pilot leaves young man ‘embarrassed’. Breakfast - ABC Radio abc.net.au.retried 10/01/2021
17. National Statement on Ethical Conduct in Human Research (2007, Updated 2018)nhmrc.gov.au. Retrieved 10/01/2021.
18. Independent Assessment: Pilot Learnings and Ongoing Evaluation Plan. September2020. Independentassessment pilot learningsand ongoing evaluation plan(DOCX377KB) Retrived 13/01/21
19. Ethical considerationsin quality assuranceandevaluation activities.( NMHRC, 2014)biomedcentral.com Retrieved 13/01/2021

Independent Assessments

Submission 278

• 20. [The NDIS Public Data Sharing Policy](Public data sharing | NDIS) Retrieved 13/01/2021
• 21. [https://www.facebook.com/TheGrowingSpaceAustralia/posts/important-news-ndis- patients-to-access-free-assessments-as-part-of-pilotsam-/2820858934792643/] Retrieved 05/01/2021
• 22. ICF Core Sets. https://www.icf-core-sets.org. World Health Organization. International Classification of Functioning, Disability and Health. Geneva, Switzerland. Retrieved November 23rd, 2020.
• 23. Madden et al (2015) In search of an integrative measure of functioning. https://pubmed.ncbi.nlm.nih.gov/26016438/. Retrieved November 23rd, 2020.
• 24. Crain Hospital Inventory of Environmental Factors. https://craighospital.org/programs/research/research-instruments. Retrieved November 23rd, 2020.
• 25. Pepperdine CR, McCrimmon AW. Test Review: Vineland Adaptive Behavior Scales, (Vineland-3) by Sparrow, SS, Cicchetti, DV & Saulnier, CA: SAGE Publications Sage CA: Los Angeles, CA; 2018.
• 26. The NDIS Quality and Safeguard Commission’s Compendium of Resources for Positive Behaviour Support (p182). [https://www.ndiscommission.gov.au/document/1456] Retrieved November 23rd, 2020.
• 27. NDIS Privacy Policy https://www.ndis.gov.au/about-us/policies/privacy) Retrieved 31/1/2021
• 28. NDIS Code of Conduct (NDIS Providers) | NDIS Quality and Safeguards Commission [ndiscommission.gov.au] (https://www.ndiscommission.gov.au/providers/ndis-code- conduct) Retrived 31/1/2021

Appendix 1

NEAT model under development by Occupational Therapy Australia, draft document not yet endorsed, included for model comparative purposes only.

FUNCTIONAL AND SUPPORT NEEDS ASSESSMENT: ALTERNATIVE MODELS

Rationale

The Australians with disability have a right to best-practice assessment of their functional capacity and individual needs. The most suitable model of NDIS assessment optimally upholds principles of:

• Choice and control
• Participant co-design
• Trauma-informed care

Practically, it must also:

• Create access to experienced professionals
• Be cost effective
• and have demonstrable ‘reach’ to Australia’s most vulnerable people with disabilities; and most remote communities.

To uphold the integrity of the original intent of the NDIS, the model must include participant support-need identification. The Productivity Commission (2011) strongly recommended support needs identification as an essential step in budget determination. Without this, plans and budgets cannot meet the individual needs of participants.

The Disability Royal Commission into violence, abuse and neglect and exploitation of people with disability (Interim report 2020), highlighted that access to suitably tailored supports and access to adequate funds are preventative of harm to people with disability. Removing support-needs assessment places NDIS participants at risk of preventable harm.

Once a new program is rolled out universally across the country, the opportunity to carry out methodologically rigorous research with appropriate controls is lost. Previous changes to the NDIS have been substantially trialled within distinct geographical areas enabling sound test-and-refine model development. This has not occurred with independent assessment which has undergone limited piloting. Ethical concerns have been extensively documented regarding the pilot program (Ref), which has trialled the assessment process only, not the substantial changes to participant plan budgets.

Pereis merit in further exploring alternative allied health models which are consistent with the principles identified above, and that may hold practical advantage such as cost effectiveness, and importantly superior ‘reach’ to our most vulnerable people and communities.

Examining Medicare models of allied health service provision that strive for universal access demonstrate the value of skill endorsement programs enabling access to skilled and experience allied health professionals while retaining choice of provider. For example let us examine access to skilled mental health professionals for people with psychosocial disability Better Access to Mental Health is an example of a program which has proven capacity to deliver equitable access to mental health professionals in rural and socioeconomically disadvantaged areas A 2011 study found remarkably similar rates of service use for capital cities other metropolitan areas and rural centres When socioeconomic disadvantage was examined rates were around 10% lower in the most disadvantaged areas compared to the least disadvantaged Despite these remaining

                                   20

Considering a National Endorsed Assessor Team (NEAT) to deliver functional assessment.

The National Endorsed Assessor Team (NEAT) OTA asks that the NDIA consider the National Endorsed Assessor Team (NEAT) as an alternative model for assessing eligibility for the NDIS. The NDIA, in consultation with stakeholders, could develop a functional assessor endorsement program, which appropriately skilled and experienced allied health professionals could choose to undertake in order to qualify to assess eligibility for the NDIS. The model would not require costly establishment of a new national service infrastructure, as it would use the existing provider base. This would ensure functional assessments are completed by experienced allied health professionals, including mental health professionals for people with psychosocial disability.

an assessor endorsement program would meet the NDIS requirements of a more consistent approach to assessment, while enabling participants and applicants to retain choice and control of provider. Assessors would be empowered to utilise their professional judgement and clinical reasoning skills. This model would prevent costly duplication of assessment process, as the functional assessment would include tailored, needs-specific recommendations for supports. This is particularly important if the NDIA expects data obtained from IAs to inform plan funding. Refer to OTA’s submission to the Planning Consultation Paper for further discussion around plan funding. Conflict of interest concerns could be mitigated by the assessor being prohibited from therapeutic support or services in the proceeding term of the NDIS participant support plan. The NEAT model would benefit from further development through co-design with NDIS participants, families and carers. Comparative economic evaluation to the Independent Assessment model, is also required. The World Federation of Occupational Therapy (WFOT) developed the Quality Evaluation Strategy Tool (QUEST) (2020) to guide the evaluation of quality in therapy services. A conceptual framework described by QUEST identifies seven core quality indicators that serve as a basis for defining the measures. A preliminary comparison of core quality indicators for IAP and NEAT functional assessment models is included in Fig 1 below.

FIG 1 A preliminary comparison of core quality indicators for IAP and NEAT functional

assessment models

QUEST Quality Independent Assessment National Endorsed Assessor Indicator Panel (IAP) Model Team (NEAT) Model

Appropriateness Generic workforce, no minimum Skilled workforce, with defined experience or disability specific standards of skills and experience experience required. required e.g., minimum 3 years disability-specific experience.

Sustainability Disrupts and erodes emerging Builds the emerging allied health NDIS allied health provider NDIS workforce – esp. important in base (‘anti-competitive’) areas of ‘thin markets.

Accessibility Limited choice of panel Choice and control of provider providers preserved

Efficiency Requires establishment of a Existing provider base and a ready- new, national service made infrastructure. infrastructure which will take time to create and embed. Experienced clinicians bring Clinicians in early years of efficiency to assessment process practice are still learning and honing skills requiring additional time

Effectiveness Functional screen only – no One functional capacity support need identification, assessment, including support meaning support needs will needs identification. To offset require an additional conflict-of-interest, assessors assessment (issues = costly, cannot provide further service to duplication, less person- the participant for the term of future centred) NDIS plan.

Safety Generic, disability ‘neutral’, People with disability can access approach to function/eligibility assessors with disability-specific screen expertise and ability to accurately determine support needs

Person- Creates a compliance/eligibility- An integrated community model centredness focused institution with an with a focus on quality assessment emphasis on being “disabled and expert needs identification. enough” = stigmatizing. The NEAT model can be further developed through co-design

Appendix 2

The Productivity Commission Disability Care and Support Inquiry report 2011

the Government and the NDIA often report that the proposed IA process is endorsed by the Productivity Commission Disability Care and Support Inquiry report 2011. This is not acurate as described by the content below from Chapter 7of the Productivity Commission (PC) Report.

The key difference between the process described in the PC report and the proposed IA process is that the PC recommends an in-depth assessment that identify actual support eeds of participants, not a functional capacity screener that will be used to automate a draft plan.

The purpose of the assessment proposed by the PC is to “assess the nature, frequency and sintensity of an individual’s support needs, regardless of how these might be met” (P. 305.) The proposed IA process does not assess the nature, frequency and intensity of support needs.

“At the most general level, the assessment process will be about identifying the supports that would allow a person to fulfil a range of functions, such as participate in their community in keeping with personal goals and aspirations.” (P.306) “While the assessment process would primarily be about assessing an individual’s needs, it should not disregard their aspirations.(p.308).“ the proposed IA process does consider goals and aspirations when determining level of funding.

“The assessment process can provide an opportunity for individuals to articulate their care and support needs, identify issues that need to be addressed in any personal plan, and be used to collect data. Indeed, in the context of a NDIS, the assessment process will fulfill a number of functions:”(P.311).

The purpose of the assessments as described in the report is outlined below (taken from pages 311 to 315). It describes a significantly different purpose and process than the one proposed by current reforms.

Notably, on the point related to how a budget is determined, the PC recommends a ‘bottom-up’ approach when individual supports are identified and linked to individual goals and circumstances. The proposed NDIS reforms are fundamentally different to this approach where a total package of funds will be derived from a functional capacity screener and with increased automation of decisions rather than made up of individual supports that make up a total budget linked to individual goals and aspirations.

• “Determining the service offering.“
  • Determining the service offering A comprehensive component would consider the supports that would allow a person to fulfil a range of functions, such as participate in their community. This component would be supports driven, and so would not solely focus on an individual’s diagnosis or what they cannot do. Assessments would be person centred, taking account of people’s unique circumstances. Consistent with the ICF framework, the assessment process would identify support needs across a range of life activities and would

Independent Assessments

Submission 278 take into account the interactive effects of an individual’s health condition (and impairment), our desired activity and their context (including environmental and personal factors). The assessment process would identify the type, intensity and frequency of support needed, egardless of how these needs might be met. Moreover, assessments would provide a dynamic account of an individual’s support needs, including having regard to fluctuating needs and anticipating changes that can be expected to occur. (For example, as the result of skills development, ageing, or a health condition that is progressive.)

• Determining what reasonably and willingly could be provided by unpaid carers and the community.

• Determining an individual’s budget The assessment process will need to identify a budget associated with meeting the assessed needs of individuals (after taking account of any reasonable natural supports). Crucially, there would be an obligation for the system to deliver the funding determined by the independent assessment. This feature is an essential element of avoiding the chronic underfunding that has beset past allocation systems. An individual’s budget could be derived, through a ‘bottoms-up’ approach, by costing all of the support needs identified by the assessment process (after taking account of natural supports). A simple example: were a person assessed as needing 10 hours of attendant care per week, but their partner was happy to provide two hours, and the cost of attendant care was $30 per hour, their budget would be $240 per week (8 hours x $30 per hour). As budgets will be attached to assessments, it will be important for the scheme to monitor patterns in assessments to test whether these reveal any unwarranted cost pressures (for example, those arising from defects in the assessment tool or permissive use of the instruments). (The need for, and benefits of, systematic checks are discussed further in section 7.11.)

• Determining suitability for self-directed funding The assessment phase would substantiate the capacity of the person or carer to selfdirect funds. This would not be a feature of the assessment tool per se, which would be about identifying needs, but would be part of the interaction with the person with a disability during the assessment phase.

• Providing a referral to other schemes

• Providing data for program planning and cost management” the PC report makes number recommendations regarding the assessment process including the two listed below (p.339). The proposed IA process fundamentally differ from most elements of what is recommended. Of particular importance is that under the proposed reforms the assessor will not have access to and will not review previous reports and information relevant to the assessment. This not only is contradictory to the PC report recommendations, but it is also likely to not meet practice standards for allied health professional, including trauma-informed standards and may put people with disability at risk of harm.

Recommendation 7.2

The assessment process should be a valuable intervention in its own right, rather than just an entry point to supports. The process should:

• draw on multiple sources of information, including: – information provided by the individual with a disability, including their aspirations and requirements for supports – information provided by an individual’s circle of support, including family members, carers and direct support professionals – information on the current support provided both formally and informally – current medical information on the person with a disability

• assess the nature, frequency and intensity of an individual’s support needs. The process should be person-centred and forward looking and consider the supports that would cost- effectively promote people’s social and economic participation, rather than only respond to what an individual cannot do • determine what supports outside the NDIS people should be referred to, including referrals to Job Services Australia providers

• consider what reasonably and willingly could be provided by unpaid family carers and the community (‘natural supports’)

• translate the reasonable needs determined by the assessment process into a person’s individualised support package funded by the NDIS, after taking account of natural supports

• provide efficiently collected data for program planning, high level reporting, monitoring and judging the efficacy of interventions.”

Appendix 3

The impact of proposed IA on people with psychosocial disability March 2021

Conceptual issue	Analysis of independent assessment (IA) process	Impact on people with psychosocial disability, their families and carers
1. Australians with a disability, including psychosocial disability, have a right to expect an evidence-based, robust and safe process for assessment of functional capacity to determine access to, and reasonable and necessary supports from, the NDS.	Robust independent empirical assessment research processes is needed are to fit ensure for that Indemonstratingthe absence theof aneffectivenessevidence baseand safety of	There is potential for causing harm.
There is conflict of interest when organisations conducting the research and piloting the process have vested interests, including financial interest, in outcome of pilot. International studies evidence potential harmful outcomes when disability assessment conducted via point-in-time standardised checklist mandated assessor. Harmful outcomes include increased rates suicide, mental health impacts and reliance prescribed medication.
Of pilot scheme completed date only small number (7%, 35-40 people had psychosocial disability [1]. Volunteers self-selected therefore not representative sample many whom reduced functional capacity may impacted self advocacy. These issues likely persist second pilot as selection methodology unchanged.
2. Absence of evidence supporting assumption that functional capacity can be measured ‘disability neutral’ manner, in ‘disability neutral’ manner, in ‘disability neutral’ manner, in ‘disability neutral’ manner, in ‘disability neutral’ manner, in ‘disability neutral’ manner, in ‘disability neutral’ manner, in ‘disability neutral’ manner, in ‘disability neutral’ manner, in ‘disability neutral’ manner, in ‘disability neutral’ manner, in ‘disability neutral’ manner, in ‘disability neutral’ manner, in ‘disability neutral’ manner	It based appear on constraints combination imposed tools by NDIA selected [6]. There are significant issue assessing functional capacity using assessment tool not researched reliable or validated for purpose, for person with psychosocial disability.	Impact insufficient Independent Assessment
Assessment substantially reduce functional capacity forming restrictive barrier accessing NDIS inappropriate funded support package.

Australia or internationally.

These concerns are exacerbated when such tools are Research highlights the global used in combination and in a novel context, such as Neither the Vineland-3 nor CHIEF is absence of a single assessment tool the NDIS in Australia. validated for psychosocial disability and the or suite of tools, proven to have the WHODAS-2 has limitations e.g. does not ability to do this [3]. Two of the three IA tools proposed for psychosocial comprehensively assess functional capacity disability, the CHIEF and the Vineland-3, have not for self-care because it does not assess the capacity to do this [3]. been researched or validated for use with people with capacity or barriers to consistently wash; have not been researched or psychosocial disability, and were designed for other get dressed; plan, organise and prepare a validated for use with people populations and purposes [7] [8]. Vineland-3 invalidity meal; manage medication; implement with psychosocial disability, for psychosocial disability where the impairment is daily routine. and were designed for other due to mental health issues is also confirmed by the populations and purposes [7] [8]. NDIS Quality and Safeguard Commission’s The WHODAS-2 only considers the past 30 Vineland-3 invalidity Compendium of Resources for Positive Behaviour days, not sufficient to capture the for psychosocial disability where Support (p182) [9]. fluctuating capacity experienced by many the impairment is due to
mental health issues is also people with psychosocial disability [10]. confirmed by the Construct validity is the ability of the tool to actually NDIS Quality and Safeguard measure what it is intended to measure. There are The WHODAS-2 does not consider capacity Commission’s issues with construct validity in the Independent for work and study, when the person is not Compendium of Resources Assessment toolkit - the construct being measured currently engaged in these activities. The for Positive Behaviour with Vineland 3 and CHIEF are adaptive behaviour WHODAS-2 does not provide insight into the Support (p182) [9]. and environmental factors respectively, not functional person with psychosocial disability’s capacity. Interestingly, the inclusion of the Lower capacity for economic participation. Extremity Function Scale (LEFS) administered “where applicable” appears to contradict the disability neutral approach outlined by the NDIA.

                                                        27

Page 28

3. A fundamental principle of The proposed Independent assessment does Funding and support packages that do not include needs assessment, or a process not address the, often invisible, individual

the NDIS Act (2013) is the to identify reasonable and necessary reasonable and necessary support needs, may lead to negative outcomes and harm for people with psychosocial disability.

The subordinate rules under the assessment tools must NDIS Act 2013 Supports for ensure fair assessment of Participants Rules (Australian reasonable and necessary Government, 2013a) - state that supports, and it should the assessment tools must reference activity, social, and ensure fair assessment of economic participation, as reasonable and necessary identified in the WHO ICF (Part 4, supports, and it should point 4.6 a and b) (Australian reference activity, social, and Government 2013a)[11]. These economic participation, as rules were confirmed in the NDIS identified in the WHO ICF (Part 4, Becoming a Participant Rules point 4.6 a and b) (Australian (2016) under Part 7 (Australian Government 2013a)[11]. These Government, 2016)[12]. rules were confirmed in the NDIS Becoming a Participant Rules (2016) under Part 7 (Australian Government, 2016)[12].

Aspects of the assessment tools are contrary to The proposed Independent assessment does Funding and support packages that do not include needs assessment, or a process not address the, often invisible, individual the NDIS Act 2013 concept of enabling social to identify reasonable and necessary reasonable and necessary support participation. E.g. The CHIEF explicitly states needs, may lead to negative outcomes social supports cannot be addressed through and harm for people with psychosocial funded supports. Direct quote - “Social barriers disability. can only be remedied by attitude change in
others. Extra funding is not likely to solve these increased reliance on the acute mental particular problems.” (See P3 CHIEF User health system through mental health Manual version 3.0)[13]. decline; unnecessary, costly and distressing hospitalisations or crisis These include, but are not limited to, service engagement; further reduced increased reliance on the acute mental capacity for social and economic health system through mental health participation; social isolation; difficulty decline; unnecessary, costly and completing personal care and daily living distressing hospitalisations or crisis tasks.

Nothing About Us Without

Due to the inclusion of the Vineland 3, the IA

The proposed IA approach is contrary to toolkit for psychosocial disability is weighted current mental health standards of Us’

Choice and control for people towards a carer or other support person rating service which emphasise trauma- with disabilities are informed care and recovery-oriented practice [17]. The expectation that a cornerstone principles of the person with a disability meet with a NDIS Act (2013)[14]. mandated assessor, a stranger, to complete a series of standardised tools The Vineland-3 is fully rated by a carer or to assess the impact of disability, for the The United Nations Convention support person, not the NDIS applicant or purpose of making decisions around on the Rights of the Person with participant. It includes an extensive interview access to essential supports, has the Disability (UNCRPD), which with, and scoring by, the carer or support potential to be a highly stressful Australia signed in 2007, and the person [8]. It is unclear what the alternative experience. Many people with National Disability Strategy 2010- process will be if person does not have a carer or psychosocial disability have histories of 2020 (2010), emphasise the mandatory treatment and involuntary inclusion of people with hospitalisation, or experiences with assessments delivered by unknown disabilities in decision-making, professionals that have resulted in loss of freedom or self-determination. and active participation in NDIS Act 2013, Section 4 (3), states that designing systems that people with disability and their families support them [15][16]. There and carers should have certainty that they will receive the care and support has been limited consultation with they need over their lifetime [14]. IA at people with disabilities and other multiple points in the NDIS journey introduces uncertainty, loss of sense of control, and fear. stakeholders, in the development
of independent assessments. It is unclear what the alternative process to gather environmental information will be if person
does not have the capacity to respond to the CHIEF.
CHIEF. Inclusion of Vineland 3 is likely to cause distress to people with psychosocial disability who may have complex relationships with their family and carers(e.g.family violence situations).

The Social Model of Disability

The WHODAS-2 can be used to screen for People with psychosocial disability substantially reduced capacity in the domains of currently represent approximately 12 per cent of participants accessing the NDIS [18]. These numbers continue to be lower than expected, at this stage of the Scheme development. Great care needs to be taken to ensure access pathways are accessible to people with psychosocial disability.

To minimise risk of the IA becoming a barrier, asessors are required to be mental health professionals who are very clear on the understanding of functional capacity as outlined in the NDIS Act 2013. Choice of provider to complete an IA must be preserved. Skilled, known providers, who are mental health professionals, minimize and offset the risk of non-standardised assessment tools through clinical reasoning and trianguation of information sources to build a clear picture of functioning for each individual.

Independent Assessments

Submission 278

The proposed IA process is wholly contradictory to recovery-oriented practice principles outlined in the national framework for recovery-oriented mental health services agreed by Australian government ministers, including recovery conceptualised as a unique, individual and personal journey (not ‘norm-referenced’); a non-linear journey interspersed with achievement and setback; and personal autonomy [17].

The NDIA has committed to the development of an NDIS Recovery Framework for people with psychosocial disability [19]. However, this approach will be contradictory to the disability neutral approach proposed by the NDIA regarding IAs.

A People with psychosocial disability will question the NDIA’s stated commitment to develop an NDIS Recovery Framework, as it coincides with the introduction of an IA process that is not recovery-oriented and has potential to cause harm, as described above. The conceptual contradiction between IA process and the NDIS Recovery Framework is substantial and requires addressing, with the reasonable and necessary support needs and the goals and aspirations of people with psychosocial disability central to this conversation.

REFERENCES

1. NDIS (2020) The Independent Assessment Pilot. Retrieved September 18th, 2020. https://www.ndis.gov.au/participants/reviewing-your- splan-and-goals/preparing-your-planreview/independent-assessment-pilot-iap
2. Barr, B; Taylor-Robinson, D; Stuckler, D; Loopstra, R; Reeves, A. (2015). ‘First, do no harm’: are disability assessments associated with adverse trends in mental health? A longitudinal ecological study. Journal of Epidemiology and Community Health Vol 70 (4). BMJ Publishing Group Ltd.
3. Madden et al (2015) In search of an integrative measure of functioning. https://pubmed.ncbi.nlm.nih.gov/26016438. Retrieved November 23rd, 2020.
4. ICF Core Sets. https://www.icf-core-sets.org. World Health Organization. International Classification of Functioning, Disability and Health. Geneva, Switzerland. Retrieved November 23rd, 2020.
5. Australian Government. National Disability Insurance Scheme (Supports for Participants Rules) 2013 (2013a).
6. National Disability Insurance Scheme. (2020). NDIS Independent Assessment Framework – Selection of Tools.
7. Crain Hospital Inventory of Environmental Factors. https://craighospital.org/programs/research/research-instruments. Retrieved November 23rd, 2020.
8. Pepperdine CR, McCrimmon AW. Test Review: Vineland Adaptive Behavior Scales, (Vineland-3) by Sparrow, SS, Cicchetti, DV, sSaulnier, CA: SAGE Publications Sage CA: Los Angeles, CA; 2018.

References

9. The NDIS Quality and Safeguard Commission’s Compendium of Resources for Positive Behaviour Support (p182). https://www.ndiscommission.gov.au/document/1456. Retrieved November 23^rd, 2020.
10. World Health Organisation Disability Assessment Scale https://www.who.int/classifications/icf/whodasii/en/. Retrieved November 23^rd,
12. Australian Government. National Disability Insurance Scheme (Supports for Participants Rules) 2013 (2013a).
13. Australian Government. National Disability Insurance Scheme (Becoming a Participant) Rules 2016, (2016).
14. CHIEF User Manual. https://craighospital.org/uploads/CraigHospital.ChiefManual.pdf. Retrieved November 23^rd, 2020
15. Commonwealth of Australia. (2013). National Disability Insurance Scheme Act 2013. Canberra.
16. United Nations General Assembly (2007) Convention on the Rights of Persons with Disabilities. Geneva, 2007. Retrieved 16 September
18. Department of Social Services (2010) National Disability Strategy 2010-2020.
19. A National Framework for Recovery Oriented Mental Health Services. https://www1.health.gov.au/internet/publications/publishing.nsf/Content/mental-pubs-n-recovgde-toc. Retrieved November 23^rd, 2020.
20. NDIS Quarterly Report, July 2020. https://www.ndis.gov.au/news/5226-latest-quarterly-report-now-available. Retrieved November 23^rd,
22. NDIS Recovery Framework for psychosocial disability. https://www.ndis.gov.au/understanding/how-ndis-works/mental-health-and- nfis#what-is-recovery. Retrieved November 23^rd, 2020.