MHCC ACT Response to inquiry on Independent Assessments to Joint Standing Committee

March 2021

Mental Health Community Coalition ACT

Peak Body in the ACT for the Community Mental Health Sector

Room 1.06, Level 1, Griffin Centre

20 Genge Street, Canberra City, ACT 2601

t: (02) 6249 7756 e: admin@mhccact.org.au

w: www.mhccact.org.au abn: 22 510 998 138

About MHCC ACT

The Mental Health Community Coalition of the ACT (MHCC ACT) is a membership-based organisation which was established in 2004 as a peak agency. It provides vital advocacy, representational and capacity building roles for the Not for Profit (NFP) community-managed mental health sector in the ACT. This sector covers the range of non-government organisations (NGO) that offer recovery, early intervention, prevention, health promotion and community support services for people with a mental illness.

The MHCC ACT vision is to be the voice for quality mental health services shaped by lived experience. Our purpose is to foster the capacity of the ACT community managed mental health services to support people to live a meaningful and dignified life.

Our strategic goals are:

To support providers to deliver quality, sustainable, recovery-oriented services
To represent our members and provide advice that is valued and respected
To showcase the role of community-managed services in supporting peoples’ recovery

To ensure MHCC ACT is well-governed, ethical and has good employment practices.

Preamble

The Mental Health Community Coalition of the ACT (MHCC ACT) welcomes the opportunity to respond to the inquiry on the Independent Assessment (IA). MHCC ACT has contributed extensively to the consultation on the proposed changes to the access procedures of the NDIS, especially around the IA. MHCC ACT has also contributed to the Community Mental Health Australia (CMHA) submission to the NDIA in August 2020, the Mental Health Australia (MHA) recommendation paper, and various online sessions with NIDA representatives and service providers, participants and carers commenting on the consultation paper’s questions. This submission is complementary to that work.

MHCC ACT’s overarching concern is that the structure of IA’s and the mandatory nature will negatively impact people with psychosocial disabilities. The needs and capacity of people with psychosocial disability can fluctuate depending on the cyclical nature of mental illness and where they are in their recovery journey. The proposed design of IA does not seem to reflect an understanding of this which leaves people with psychosocial disability in danger of not receiving the support they need to reach their goals and live a meaningful life.

Executive summary

MHCC ACT agrees with the objective to improve the NDIS intake process to make it simpler and more equitable. It sees merit in moving away from diagnosis to a functional assessment consistent with the initial objectives of the NDIS.

However, MHCC ACT has many concerns regarding the way the NDIA is shaping the IA. Our concerns are around the following aspects of the IA:

independence and impartiality
mandatory nature
speed and scale of the rollout
lack of evidence regarding how it works for participants
nature and quality of assessments
qualification, capability and appropriateness of the assessors

MHCC ACT’s overarching recommendation is that the IA as currently proposed should be abandoned. A review needs to be undertaken to ensure the revised IA is genuinely independent and will be implemented in a way that gives participants choice and control is consistent with their human rights and produces better outcomes for participants, including a ‘do no harm’ test as evidence suggests. These must be the guiding principles to change the system to give equity of access.

MHCC ACT’s view on Independent Assessment

Where we agree

MHCC ACT accepts the premise of the need to ensure everyone has the same opportunity to enter the NDIS regardless of socioeconomic background. We understand and support the NDIA’s desire to address the inequality created by the appropriateness of the plan of NDIS participants depending more on affluence, the level of education/administration skills of the participants and/or their support network than their actual need.

It is well known that the complicated access process of the NDIS is deterring people from entering the Scheme because it is “too hard and expensive”. It’s is especially an issue for people with severe psychosocial disabilities (PSD) who are often socially isolated and have negative experiences with institutions and administrations. MHCC ACT understands the desire to make sure vulnerable people are not disadvantaged and support this wholeheartedly.

MHCC ACT supports the NDIA’s attempt to move away from the diagnostic approach and focus on a participant’s functional capacity. People with lived experience have been advocating for this for a long time.

Concerns

Independent nature of IA

MHCC ACT has concerns regarding the implementation and effectiveness of the IA. One of the most significant issues is the premise that the assessments are independent. MHCC ACT strongly objects to that notion; these assessments cannot be seen as “independent” when the assessors are on the NDIA payroll. Independent means no vested interest or received benefits.

To quote the meaning of independence from the Oxford dictionary¹:

free from outside control; not subject to another’s authority.

not depending on another for livelihood or subsistence.

Quality assurance frameworks or professional body standards will not provide adequate mechanisms for independence when the agency that employs the assessors to determine whether a person will have access to the Scheme is also the authority that decides on a person’s right to access to the Scheme. This model is fraught, causing a major conflict of interest for the assessors and the agency and can lead to undue hardship for the participant.

MHCC ACT is not insinuating that the NIDA will purposely abuse the system, but this model is well known for perverse outcomes. There are many stories of people being traumatised by so-called independent assessors in areas like compensation and insurance claims and worse, “doctor shopping” by the ruling authority. A recent investigation by the ABC showed how Comcare engaged independent assessors for a favourable outcome² but only caused

1 Definition from Oxford languages 2 Federal Government workers compensation authority Comcare accused of unethical behaviour, 5 February 2021

trauma. MHCC ACT is unsure why the NDIA would pursue such a process, given many participants are already some of the most vulnerable in our society.

Additionally, MHCC ACT is concerned that even before the IA process has begun, concerns regarding conflict of interest from assessors working for organisations with a service delivery arm are coming to the surface.³

In their current form, these assessments are not independent. MHCC ACT recommends that the design of the IA be revised to ensure true independence for all assessments. One example to make IA more effective and independent would be to introduce a Medicare item number to guarantee assessors do not have a direct relationship with the NDIA.

Why mandatory?

MHCC ACT does not agree that the IA be mandatory. It is understood the NDIA is now considering exceptions to this rule. However, MHCC ACT is concerned about the long-term effects on the participants when the onus is on them to prove the assessment will cause undue damage and/or trauma. In keeping with the NDIS objectives, MHCC ACT believes that IA’s should be optional to ensure people have choice and control.

MHCC ACT also has concerns about the IA being made mandatory for people already part of the Scheme and that access is to a limited number of assessors. This is not the approach recommended by the Tune review⁴ despite claims by the Government and the NDIA to the contrary.

The Tune Review recommended the NDIS Act be amended to require prospective participants to undergo assessments using NDIA-approved providers (recommendation 7, p 67). This is contrary to what is being undertaken by the NDIA; on page 67 of the Tune Review, it explicitly states:

“NDIA should not implement a closed or deliberatively limited panel of providers to undertake functional capacity assessments.”

MHCC ACT recommends that if the IA is introduced, it meets the following:

a) be optional;
b) assessors are independent to the NDIA, accessible to all; and
c) IA is structured to ensure it meets the recommendations of the Tune review.

3 McGrath et al, As the NDIS moves to independent assessments, these companies stand to profit from the change, ABC investigations, March 2021 4 Tune, D., Review of the National Disability Insurance Scheme Act 2013: Removing red rape and implementing the NDIS participants service guarantee, 2019

Where is the evidence?

MHCC ACT has concerns about the rush to roll out this contentious process, particularly at such a large scale. During Senate Estimates⁵ in December 2020, it was established that the introduction of IA is based on a meagre 145 respondents to a survey, of which only 35 were participants. The number of people with PSD who responded to this pilot is even lower; a rough calculation brings us to about 26.⁶ Hardly enough data to roll out a new high impact process at such a large scale and making it mandatory.

MHCC ACT is confused as to why the NDIA is rushing to implement the IA and make them mandatory, given the perceived lack of evidence. MHCC ACT’s further concerns are how the IA would work and meet the ‘Do No Harm’ test. It is important for the NDIA to listen to people with a disability and ensure their experience with the NDIS is positive and empowering. MHCC ACT urges the NDIA to acknowledge and respond to the loud voices of protest being directed at the NDIA from people with disability⁷, questioning the NDIA’s motives and the appropriateness of the IA.

The Commonwealth Ombudsman, in his submission to this Committee, also cautions for a quick mass rollout of the IA:

“The breadth of changes being introduced in a relatively short timeframe may present a challenge for the NDIA, its partners and for participants, carers, advocates and service providers.

From our work with participants, carers and disability stakeholder groups, we know that poor or inconsistent information, unclear processes and delays in decision making are among the most frequent causes of complaints. These are the kinds of issues that may arise with the introduction of a number of changes to policy, processes and timeframes within a short period.“⁸

MHCC ACT is not convinced that so-called ‘sympathy-bias’, as raised in the NDIA consultation paper, corrupts decision-making as to participant eligibility and plan outcomes. Even if it does exist, it is no reason to introduce a system with another type of bias – that being toward the NDIA as the employer of assessors.

One approach MHCC ACT would recommend to improve equity of access and ensure independence could be to use Medicare. There have long been calls for a Medicare item number to be introduced associated with the entry costs to the NDIS.

There needs to be more transparency from the NDIA around its processes and the evidence being used as the basis for the decisions around the IA. One example could be to use a

5 https://everyaustraliancounts.com.au/tag/independent-assessments/ and https://www.smh.com.au/politics/federal/just-not-ok-only-6-per-cent-of-ndis-trial-participants-completed-survey-20201221-p56pbc.html#comments

6 NDIA data on first pilot, shows 7% people with PSD 7 https://probonoaustralia.com.au/news/2020/09/fight-against-ndis-independent-assessments-ramps-up/, https://probonoaustralia.com.au/news/2020/09/new-ndis-independent-assessments-slammed-by-disability-activists/, Funding concerns as more Aussies join NDIS | The Canberra Times | Canberra, ACT 8 Manthorpe, M, Commonwealth Ombudsman, submission 4 to inquiry on IA, February 2021

system whereby evidence is made public, much like submissions to government inquiries available for public consumption.

MHCC ACT recommends that the NDIA slow down the rollout of the IA and instead build a more robust, considered, transparent and trusting partnership with stakeholders – consumers, carers and providers - to ensure it produces outcomes appropriate to participants’ needs and the objectives of the NDIS.

Human rights framework

This brings us to how the mandatory IA sits within the Human rights of people with disability. As clearly stated in the Convention on the Right of People with Disability, people with disabilities have the same rights to self-determination as everyone else. Already, participants of the Scheme are under immense scrutiny; often very intimate and private details are used to assess their eligibility.

MHCC ACT understands the need for assessment, but we believe there needs to be a balance and if in doubt, the participant’s rights and wellbeing must take priority. Within that framework making anything mandatory needs to be approached with caution to ensure a person’s right to choice and control is not affected. This is not only a violation of the Human Rights Act but also contradictory to the NDIS Act. Additionally, NDIA appointed assessors further limit the choice and control of participants.

MHCC ACT understands that the NDIA has been consulting widely to ensure the IA is done safely and appropriately. We sincerely hope that the feedback from the various stakeholders is taken into account. It is very important if the NDIA goes ahead with an IA that no harm is done to the participant as a result of the process.

MHCC ACT recommends that procedures are put into place to ensure that people going through an IA process will not be inadvertently harmed or made worse off. These must be:

a) made clear to all stakeholders and publicly reported against; and
b) clear, accessible, and appropriately resourced avenues for raising and promptly addressing issues for all stakeholders.

Quality of the assessment

MHCC ACT, together with many others, have raised concerns regarding the quality of the assessment. One of the issues that continue to be raised is how people with disability are assured that the assessment is fit for purpose and can capture the idiosyncrasies of each participant. A recent Administrative Appeal Tribunal decision (AAT) ⁹ seems to justify these concerns.

The AAT compared the evidence of the independent assessor and Mrs Ray’s treating psychologist, Teana Barry, stating:

“The Tribunal considers the observations made by Ms Barry are more reliable than those made by (the independent assessor), as Ms Barry has seen Mrs Ray on approximately 50 to 60 occasions, including out of the comfort and familiarity of her home environment,

9 Ray and National Disability Insurance Agency [2020] AATA 3452 (8 September 2020)

whereas (the Independent Assessor) had only seen Mrs Ray once for a period of three hours in her home environment.“

The Tribunal noted that the opinions of the Independent Assessor were at odds with those allied health professionals who knew Mrs Ray and had carried out multiple assessments over an extended period, concluding that the Tribunal had:

“(lost) confidence that (the Independent Assessor’s) opinions were based on an accurate understanding of Mrs Ray’s background, past achievements and her current state”.

It raises concerns about how an independent assessor can come to conclusions and make recommendations that will produce optimal outcomes for the participants based on one relatively short meeting with a participant. If the above AAT ruling is indicative of the outcomes of the IA, it suggests very little weight be given to the IA in the overall process of eligibility and planning/plan review outcomes. This again raises concerns as to the reasons behind having as IA.

Some other things to consider:

The IA must be culturally appropriate to ensure CALD and Aboriginal and Torres Strait Island people are not disadvantaged.
The IA must be relevant, including the use of an assessment tool(s), for people with PSD. The IA must place great weight on the existing evidence and history of the participant.
The IA must allow adequate time for an assessment and processing - three hours is not enough to assess the often complex needs of people with PSD and other severe disabilities.
The place where the IA will be conducted must take int account where is the best place for the participant.
Skilled assessors must be made available in all parts of Australia, including in remote and rural areas.
Procedures need to be in place to ensure the pressure and significance of the IA do not trigger the participant and leads to an inability to engage.

MHCC ACT recommends the NDIA investigate a different approach to achieving equity in access to the NDIS and optimising outcomes for participants. This new process must respect a participants’ choice and control and take account of the points in this section – particularly the evidence provided by health professionals and the participant’s life history. Any disregard by the NDIA of such evidence must be able to be justified by qualified independent experts.

Ability for appeal

MHCC ACT is concerned that participants will not have any ability to appeal the outcome of an IA. Currently, participants can only appeal an NDIS decision informed by an IA but not the IA itself. To appeal an NDIS decision, a person must go to the AAT, which is costly and timely and will delay urgently needed supports. Fears have been raised in the past about

the disadvantaged position of participants against the NDIA in the AAT¹⁰. MHCC ACT refers to Prof Bonyhady’s submission for further comments on the ability for appeal¹¹.

Quality Of The Assessor

A lot of concerns have been raised regarding the quality of the assessors. Rightfully, there are concerns about how a stranger can assess often very complex cases, compared to years of assessment by accredited professionals. MHCC ACT refers to the AAT decision mentioned earlier that identifies these issues.

Given the significant impact assessors will have on a participant’s future, all assessors must, as a basic requirement, be highly skilled and experienced professionals with relevant (tertiary) qualifications. Due to the prevalence of trauma in people with PSD and the nature of psychosocial disability, trust is a big thing. It can take a monumental amount of time before a trust relationship is established. Without it, people with PSD might be hesitant to disclose and, more worrying, it will increase the risk of triggering distress and trauma.

There have been many issues raised around the quality of the IA assessor during the consultations; MHCC ACT has identified a few things to consider, especially in relation to people with PSD:

All assessors need to be trauma-informed, recognise signs of distress and be able to keep a person safe until other support is available.
All assessors need to have relevant experience in recovery-focused principles of care.
The assessor must establish a trust relationship before doing an IA.
Assessors must be well-versed in cultural awareness to ensure people with minority backgrounds are not disadvantaged.
All assessors must be trained in unconscious bias to prevent stereotyping and assumptions.

MHCC ACT recommends that all assessors are experienced professionals, in line with the points made in this section.

Exemptions

MHCC ACT was pleased to see that the NDIA is considering exemptions to the mandatory rule, indicating it realises that IA is not an appropriate tool for everyone. While we continue to argue the case to remove IA’s mandatory aspect completely, we want the Agency to consider including all people with PSD on the exemption list.

Forcing people who already have a higher prevalence of anxiety, emotional distress, and trauma to undergo an IA with someone they don’t know/hardly know is inviting complications. There is a high risk that people will become unwell, just contemplating an IA, thus negatively impacting their recovery. Furthermore, it can also cause people to withdraw from the NDIS or never engage with it, potentially missing out on life-changing supports.

10 Southwell, G., The Admisntitrative appeals Tribunal confirms less than 2% NDIS decisions appealded by participants, Pro Bono, 2019 11 Prof Bonyhady, B., Independent-Functional-Assessment-An-Analysis-of-the-Proposed-Approach-by-the-NDIA-Final-22-February-2021

MHCC ACT recommends that IA’s be non-mandatory and that people with PSD are exempt from compulsory IA.

Continuing participants

MHCC ACT raises concerns in regards to existing participants undertaking a mandatory IA. When an IA is mandatory, it causes additional stress and anxiety. Participants with PSD have already had to go through a rigorous and stressful lot of additional assessments to be accepted into the NDIS. It is unreasonable to expect them to do so again. MHCC ACT has concerns the evidence is not forthcoming to show that this is necessary and will improve outcomes. Forcing existing participants to undertake an IA further erodes their self-determination and agency and is a cause for stress and anxiety.

As raised earlier, submitting existing participants to IA is not part of the Tune Review recommendation and takes away the participant’s choice and control.

MHCC ACT recommends that existing NDIS participants not be required to undertake another eligibility process in the form of IA unless there is strong evidence that this will improve outcomes for individuals, and it is their choice to do so.

Conclusion

MHCC ACT understands the NDIA’s need to reform and simplify processes to ensure no one is excluded. However, we do not believe that the proposed IA is the solution to that problem. The evidence has not been forthcoming, and therefore MHCC ACT is not convinced that the IA, as planned, will reduce inequality and improve outcomes for participants as is predicted by NDIA.

MHCC ACT is concerned about the scale and speed of implementing the IA based on such a small sample and without robust evidence on the impact of participants. Our primary concern is regarding participants’ wellbeing and outcomes. We are especially concerned for people with trauma and PSD having to undergo an AI without real choice or control on who will perform it, how the assessment will happen, and the weight given to existing evidence provided by professionals with a long history of working with an individual.

MHCC ACT does not agree with the so-called sympathy-bias argument to introduce strangers to assess people. There is a lack of evidence to support this. Furthermore, treating professionals are better placed to assess the needs and functionality of their patients. It can take months before a person with PSD feels comfortable enough to disclose, which will make the proposed IA process untenable. Furthermore, if assessors are employed by the NDIA they cannot be considered independent.

We urge the NDIA to reconsider the mass rollout and the mandatory nature of the IA. The structure of the proposed IA needs to be completely overhauled. Robust evidence must be gathered to show that any sort of IA is consistent with the intent of the NDIS, in keeping with people’s human rights and produces better outcomes for participants. Until this evidence is available and transparent, the mass rollout of IA should not be contemplated.

In conclusion, MHCC ACT will use Prof Bonyhady’s, one of the architects of the NDIS, final words in his submission to this Committee about IA:

“My strong recommendation is therefore that the NDIA must go back to the drawing board. There is an opportunity to use the data that has been and could be collected through the NDIS to realise its vision of becoming the best disability system in the world, based on individual needs, control and choice and which is equitable and sustainable. This is how the data should be used, not to establish automated “robo-planning”. There is therefore a pressing need to establish much more inclusive and evidence-based processes to design a valid, equitable, consistent and sustainable way forward for the NDIS which aligns with its original vision…“¹²

12 Ibid Prof Bonyhady submission