30 March 2021
Joint Standing Committee on the National Disability Insurance Scheme – Inquiry in to Independent Assessments
The Peninsula Carer Council Inc. (PCC), presents the following submission.
The PCC represents Carers of people with a mental illness and as such are informal ‘experts’ about mental illness and the impact of mental illness on their loved ones. They well understand what supports and resources are required from the NDIS.
Background on the PCC
The PCC is a a charitable community organisation which has been run by volunteers for 16 years. It provides support, information and advocacy to Carers (family and friends) on the Mornington Peninsula. In fulfilling this mission on the Mornington Peninsula Victoria, the PCC is currently represented on committees of Peninsula Mental Health and Community Services. We have a membership of 150 people and provide monthly support group meetings, morning coffees, carer events, a website (peninsulacarercouncil.org.au) and a 1300 telephone service to carers.
Submission
As dedicated carers of family members and friends with severe mental illness, we seek to provide feedback to the Joint Standing Committee on the NDIS, on proposed Independent Assessments.
As carers who have worked incredibly hard to advocate for access to NDIS and for better plans and support in packages for loved ones, we write to express our concerns with the introduction of Independent Assessments. From our experience we do not believe that the proposed independent assessments with the tools listed can create a complete picture of how a person with severe, enduring chronic mental illness, or episodic mental illness, manages everyday tasks and activities. Valid, accurate assessments of complex persons come from multidisciplinary teams of clinical and allied health professionals who are known and trusted by the carer and care recipient, and, who observe the person over time with essential information from carers who can provide answers to assessment questions that can’t be “Yes or No” but describe the nuanced contextual information needed.
The deep knowledge of carers is valued by the many professionals in the multidisciplinary teams providing assessment, treatment and care for their loved ones. Carers provide the long-term daily care of family members with severe psychosocial disability and have an onerous workload advocating for their family members. The NDIA needs to be cognisant of the stress this discussion on Independent Assessments is causing to carers like us. The NDIA needs to listen to carers and the disability groups who are voicing objections to this poorly conceived change to what will fundamentally change the existing purpose of the NDIS.
As carers, we want to see comprehensive, integrated and holistic care with reasonable and necessary supports for participants in NDIS who have choice and control, and, lifetime support in the decisions about their life and needs.
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The Peninsula Carer Council’s Response to certain Terms of Reference.
The implications of independent assessments for access to and eligibility for the NDIS;
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The PCC supports the NDIA’s goal of improving the consistency of assessments and planning for people with a disability.
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However, p12 of the Consultation paper: Access and Eligibility Policy with independent assessments document states “For participants over 7years of age, access decisions will be informed by the results of independent assessments conducted by an NDIA appointed assessor from the middle of 2021”. The assessment process uses tools which are questionnaire based.
This is of great concern to the PCC because:
- The assessment is solely based on assessment tools
- The assessment and the decision for NDIS access should not be based solely on the proposed assessment process and should include reports from the person’s associated health professionals who have known the person for sometime
- The outcome of the assessment Is not reviewable
- Psychosocial disabilities can often be extremely complex but the independent assessment does not allow for this. It is not uncommon for people to suffer from more than one disability. E.g. someone with autism and a mental health condition like anxiety or schizophrenia, people with intellectual disability and a mental health diagnosis.
The PCC considers that the proposed independent assessments do not adequately address the complexity of psychiatric conditions.
Konecky, et al (2014, P818) in their American Journal of Psychiatry article, discuss a number of issues with the WHODAS 2.0 tool. They point out that as it is intended to measure many disabilities and that many of the items are not related to mental illness e.g. the domain of mobility.
Some of the items may not capture the extent of the person’s disability. For example in the Life Activities Domain, there are a number of questions that relate to difficulties at school or work. If the person is not doing either, the instruction to the assessor (WHODAS 2.0 WHO Disability Assessment Schedule) is to skip these questions, thereby missing out on the crucial information that the person is not able to work due to their disability. If these questions are skipped, this will also affect their overall score on this tool.
A further example in a different domain, could occur when assessing a person who is socially withdrawn (as is the case with many people who have mental illness). The respondent may say that they have little or no difficulty in social functioning, simply because they never participate in social situations. This vital information would also be missing.
A person who has episodic and crippling depression may be asked whether they have had difficulty in the last 30 days “Washing their whole body”, “Getting Dressed” or “Eating”. If the person was functioning at the assessment, then they could report that they can do all of
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these things. However, when depressed they may not bother to wash, eat or could dress inappropriately but may not want to mention it or may lack insight.
To provide a complete and accurate of a disability, the PCC believes that more detailed information from the person’s health professional should be included in this process or else the decisions will be unfair and inadequately informed.
As the person’s contact with their health professionals including their GP, has been developed over time, reports from them should be included as a component of the assessment process.
The PCC does not understand how such an important decision can be made about a complex disability without such qualitative information.
In addition, the environment will not be conducive to a person feeling comfortable about revealing often quite personal information. This will be particularly challenging for people who suffer from PTSD, anxiety or paranoia.
The development, modelling, reasons and justifications for the introduction of
independent assessments into the NDIS;
- Lack of consultation. The PCC acknowledges that some consultation has taken place. However, there has not been adequate consultation with stakeholders in the mental health sector – consumers, carers and health professionals about the proposed independent assessments, or how they will be implemented.
The Selection of Assessment Tools was released Sept 2020 and the Consultation paper: Access and Eligibility Policy with independent assessments was only published in November 2020. Feedback was sought by the NDIA by February 23rd which allows little time to understand the tools, consider the implications and provide comprehensive feedback.
The PCC Endorses feedback from the Mental Health Australia Policy Paper
“The Mental Health Australia Policy Paper states that the NDIA should undertake genuine consultation with psychosocial disability sector stakeholders, and most importantly people with psychosocial disability, their families and carers, on the implementation and design of Independent Assessments.
“The NDIA should engage with people with psychosocial disability, carers and other key mental health sector stakeholders to build flexibility, choice and control into the Independent Assessment process”.
- Has the feedback to date been taken on board ? Given the media reports about tendering for independent Assessments, it would seem that the government is intent on proceeding with the proposed changes without taking the feedback it has received to date in to account.
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- Lack of transparency. With regard to the assessment process, the PCC believes that there is a lack of transparency and accountability regarding the participants and how the decisions are made. There has been little information available about how the assessment decisions will be made and the key factors driving the decision-making process.
The independence, qualifications, training, expertise and quality assurance of assessors;
- Carers lack of confidence that independent assessors will have the appropriate skills or knowledge. Having a qualification is one thing but to have experience and knowledge of this complex area of disability is crucial.
- Lack of understanding of the complexities and variability of mental illness is a constant source of frustration for carers. The PCC is concerned that assessors will not have adequate skills and training to fairly conduct the assessments.
- In independent assessor may not have the expertise to gauge the impact of experiencing any or all of the following features of their psychosocial disability: cognitive impairment, paranoia, hallucinations, delusions, lack of insight and reclusiveness. Yet when asked questions by an independent assessor this person will say “I’m fine”. How does an assessor grasp the severity of the impairment and functional impact? How does the assessor interpret responses to the participant’s questions as a stranger, a person unknown to them or their carer?
- A further example is a person suffering from a mental illness such as debilitating and enduring anxiety, who could be articulate, polite and well presented at an interview, but have a life that has been crippled by anxiety to the extent that they can’t work, don’t have friends or any community participation. Their presentation can be quite misleading to a person who has no experience and little knowledge of this type of disability and will only interact with the person for an approximate 3 hour assessment.
- Psychologists were listed as one health professional. Many psychologists do not have a significant depth or breadth of knowledge about mental illness.
The appropriateness of the assessment tools selected for use in independent assessments
to determine plan funding.
- The PCC is pleased to see that funding will be more flexible.
- But according to the documentation, Independent Assessments will be used to determine the level of funding. The PCC questions the adequacy of these assessments to determine the supports that a person will require. Individual supports and services are central to the Person Centered approach which underpins the intention and philosophy of the NDIS.
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The Minister for the NDIS Stuart Robert recently claimed March 2021) that the independent assessments were strongly recommended by the Productivity Commission when it built the scheme in 2011.
However former NDIA chief executive David Bowen, qualified this, saying that
“the Productivity Commission recommended independent assessments as part of a range of assessment tools to measure a participant’s disabilities and support needs. This was never a one-size-fits-all model. This was about personalised plans, recognising the individual circumstances of people. Now they’re introducing an assessment where you see someone who has no knowledge of your history [and] no personal relationship with you.“
Opportunities to review or challenge the outcomes of independent assessments;
- Review Process. The documentation states that “The access decision remains a reviewable decision and the applicant can request an internal review and then appeal the decision at the Administrative Appeals Tribunal (AAT).” (Consultation paper: Access and Eligibility Policy with independent assessments, November 2020, p 23).
- However, the Consultation paper goes on to say that “Independent assessment results themselves will not be directly reviewable by the AAT” and “Disagreeing with the results of an otherwise sound and robust independent assessment is not sufficient for the NDIA to fund another assessment”. (p23)
- Given that the independent Assessment is based on the assessor’s interpretation and understanding of the respondent’s answers to the tool questionnaires, the PCC challenges the statement that it is ‘sound and robust’. And as such the PCC finds this most unsatisfactory and recommends that the assessment outcome be reviewable by the AAT.
- The PCC finds this most unsatisfactory given our carers’ experiences even with health professionals of the difficulty in understanding the nuances and complexities of this type of disability. For some it will be straight forward but for many it will not.
- In regards to the independent assessment, the documentation simply states that there will be a complaints process for those that “are dissatisfied with an independent assessment, their assessor, or the assessor organisation” but there is no detail about the process, under what circumstances it can be used and the possible outcomes.
The appropriateness of independent assessments for people with particular disability
types, including psychosocial disability
Rather than asking: “what do you need”; these assessors will ask “where do you fit”? People with severe, chronic, enduring psychotic illnesses like schizophrenia do not deserve this proposed humiliating, simplistic and inaccurate assessment delivered by a physiotherapist, psychologist or occupational therapist that does not know them and will never see them again but assesses them at
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one point only without the specialist training required. How could you do that to people with a severe psychosocial disability?
Our family members in the NDIS have received psychiatric and medical assessments, some for decades, presenting a consistent, clinical picture of this most damaging illness that takes away potential, health and reduces life expectancy. Our family members are clients of mental health services with psychiatrists and specialist multidisciplinary teams including GPs who know the person and care for them throughout all the complex stages of their psychosocial disability. This illness also takes a toll on the carers and families who do their utmost to care for their family member in the most difficult of circumstances in a broken mental health system.
On the Mornington Peninsula, the Mental Health service currently includes valuable assessments of clients which include neuropsychological assessments with detailed reports available from the neuropsychologist in the multidisciplinary team.
This submission refers to the following: -
- WHODAS 2.0 World health Organisation Disability Assessment Schedule, 36-item version Interviewer-administered
- Improving the national Disability Insurance Scheme – DSS information paper (Nov 2020)
- Consultation paper: Access and Eligibility Policy with independent assessments. November 2020. Version 1.0.
- Using the WHODAS 2.0 to assess functional disability associated with mental disorders. Am J Psychiatry. 2014 Aug; 171(8): 818–820.
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