NDIS Independent Assessment and Planning Process Submission
The purpose of the National Disability Insurance Scheme (NDIS) is to provide reasonable and necessary funding to people with a permanent and significant disability so that they have choice and control over the supports and services they need to pursue life opportunities. The NDIS Act commits to the provision of reasonable and necessary funding, including early intervention supports, to all participants that meet the relevant criteria (NDIS Act, Section 3(1)(d)).
On 7 September 2020, the NDIA released a new NDIS Functional Capacity Assessment Framework with the stated aim to provide “the evidence base and principles to inform the introduction of best practice Independent Assessments”. As part of the implementation of this new Framework, in early 2021 independent assessments will be required as part of the access process, and, from mid-2021 independent assessments will be required as part of the plan review process (i.e. mandatory).
The NDIA states the introduction of Independent Assessments (IA) will improve equity and consistency in decision making. These have been areas of complaint from the NDIA which has led to increased official complaints, requests for review of decisions and appeals to the Administrative Appeals Tribunal (AAT). Further the NDIA state the introduction of IA are in line with the original scheme design recommendations from the Tune Review and from the original Productivity Commission report.
As a NDIS participant with a degenerative neurological condition, the implementation of this new Framework is deeply concerning. Of particular concern is the negative impact this framework will have on myself, other participants and future participants.
My concerns are set out below.
Inconsistency with Tune Review Recommendations
The new Framework seems to be at odds with the recommendations of the Tune Review, specifically, paragraph 4.37 of the Report which states:
“Therefore, this review considers that, in at least the short term, the NDIA should not implement a closed or deliberatively limited panel of providers to undertake functional capacity assessments. Rather, engagement issues need to be monitored closely and the panel of approved providers should be dynamic and evolve to ensure the new approach does not drive disengagement. Where structural or localised engagement risks are identified, the NDIA should actively engage with
Independent Assessments Submission
The first trial of 500 participants was limited to people with intellectual disability, psychosocial disability and Autism. Unfortunately, the larger scale trial was postponed due to the COVID-19 pandemic. A further trial recommended in October 2020. On social media many participants are voicing concerns and refusing to participate in the current trial. The NDis has now introduced financial incentives to take part in the trial. Financial incentives are not unheard of in research studies. However, a natural conclusion is that the trial faces difficulty attracting participants and has introduced rewards to increase participant enrolment. Will the trial have enough participants with MS and/or other degenerative neurological disorders to validate conclusions from trials and IA assessments? Validity measures how well a test assesses what it claims to measure; invalidity could lead to incorrect findings if sample sizes were small across different groups.
the diagnosis of multiple sclerosis or another condition often involves several practitioners including general physicians, specialists and allied health professionals. My own diagnosis came three years after I saw my neurologist who stated symptoms had been present for at least twenty years prior to formal identification – signs which previously went unrecognised by numerous medical experts. At each assessment interval physical capabilities as well cognitive functionings were evaluated despite professional training qualifications involved - yet mapping declining abilities towards specific diagnoses proved difficult initially (multiple sclerosis). Therefore deep concern exists regarding whether an unfamiliar healthcare provider can accurately assess functioning within limited timeframes allocated during independent evaluations especially when dealing complex conditions comorbid illnesses psychosocial disabilities exist alongside them .The NDIs state direct links between funding outcomes but lack transparency concerning outputs generated through these processes therefore ensuring validity standardised questionnaires remains essential .
The NDis proposed 3-4 hour timelines encompassing report writing periods while clinical examinations require minimum allocations amounting approximately around 20 minutes per person example requiring preparation beverages like tea some individuals may find adequate however many others experience insufficient evaluation durations impacting functional capacity.
Independent Assessments
Submission 31
environmental factors, participant needs or the participant/family dynamic. For example, those with inneurodegenerative illnesses may become physically and cognitively overloaded. For autistic inindividuals may experience sensory overload. The Occupational Therapy Association (2020) hasn’t concerns the assessment is perfunctory and not focused on a valid functional assessment. “Assessments will be perfunctory, with the focus on throughput rather than clinical decision making. By all means, facilitate the process of determining eligibility for the scheme, but not by means of a flawed tool.”
MS Australia (2020) also believe the process is flawed. The NDIA states on their webpage the assessment will take from the “1-4 hours” which is unlikely to produce an accurate report if the arrassessor has little or no knowledge and experience of MS. Without appropriate training and experience working with people with MS it’s likely that invisible symptoms are overlooked or understated, as assessors won’t understand how these impact upon function. People living with MS often present with significant cognitive deficits including limited insight, leading to inaccurate reporting.
The independent assessor lacks sufficient time assess this in detail nor have client understanding whether further assessments needed.
As MS affects areas of person’s functioning completing thorough documentation reports across domains within 1–4 hrs isn’t feasible. It’s unpredictable fluctuating condition; therefore essential individual assessed multiple sessions gain accuracy regarding impacts. Assessing capacity fixed observable fact leads incorrect outcomes successful results those experiencing MS. MS Australia (2020): A Report on Impact Introduction Functional Capacity Assessment Framework Living With.
those intellectual behavioural learning may unable respond e.g., nonverbal; rassessors rely third parties support worker Vineland assessment questionnaires. Social media participants state third parties lack reliable information being only available for 3–4hrs unaware daily issues occurring other times concerned there be party knows them well.
Harm
the process potential cause distress physical mental harm complex needs developmental delay co-morbidities,
Independent Assessments
Submission 41
The following text discusses issues with independent assessments within the National Disability Insurance Scheme.
psychosocial disabilities] the assessor would experience difficulty choosing the appropriate tick box on questionnaires. International studies have also provided evidence of the potential for harm when disability assessments are conducted by a mandated assessor using a point-in-time standardised checklist approach.” Mental Health Australia. (2020). National Disability Insurance Scheme Independent Assessments.
“The announcement of the new Framework has caused a great deal of anxiety to scheme participants. Will they continue to receive the services they require if the NDIA implements this approach and discounts the information provided by therapists that have had long-term engagement and is considered by them to have better understanding of their requirements?” MS Australia (2020) - A Report on the Impact of the Introduction of the Functional Capacity Assessment Framework on People Living with MS.
“Independent Assessors who do not have a relationship with the person with disability, whom they are assessing, may not be best placed to provide an accurate assessment of the person’s functional capacity. This was recently demonstrated in Ray and National Disability Insurance Agency [2020], in which the Administrative Appeals Tribunal found that observations made by a treating health professional who had a relationship with the person were more accurate than those of the Independent Assessor. International studies have also provided evidence of the potential for harm when disability assessments are conducted by a mandated assessor using a point-in-time standardised checklist approach.” Mental Health Australia. (2020). National Disability Insurance Scheme Independent Assessments.
The standardised questionnaires only capture some information and may not allow the assessor time to gain a good understanding of the person’s disability or functional capacity needs. These factors will all impact assessment validity. The lack of validity of a 3 hr. assessment could result in serious harm of invalid exit, lack of access or underfunding. Currently the trial is “opt-in” but there is a lack of transparency whether participation refusal will have future consequences to NDIS participant collaboration or funding. Professional organisations who previously were cooperating with developing the IA process now have grave concerns. “It remains a clinically flawed tool something we will continue to draw to the attention of the NDIA” (Occupational Therapy Association). Further the NDIA acknowledges it cannot automate decision-making and yet it is automating a process of tick boxes, comparison to a typical support package which generates a funding amount. Further Mental Health Australia (2020) notes the use of the designated assessment tools and the process for their use runs the risk of an assessment which doesn’t accurately reflect the complexity of psychosocial disability.
Independent Assessments
Submission 31
Further the NDIA hinted at its own concerns of the process. The NDIA acknowledges that decision-making cannot be automated because people are complicated multi-layered individuals and deserve to be treated as such. This is one of the reasons NDIS staff have been entrusted with connecting with people and supporting them through their individual NDIS journey. In keeping with this philosophy, it is also necessary to accept that for some people, even a suite of assessments will not provide all the details that are needed. Independent Assessment Framework August 2020.
The “sympathy bias” notion came from a survey cited by the NDIA statement (Guscia, Harrries, Kirby and Nettelbeck, 2006). There were only 29 disabled people surveyed by their support workers with a questionnaire administered two years apart. The questionnaires are currently not in proposed tools. The sample size was only twenty-nine people. Did Guscia et al (2006) discuss survey weaknesses? Have there been criticism by other researchers of this study? disability organisations and academics have concerns about the “sympathy bias” notion and its usage to justify mandatory medico-legal assessments.
the reference in the framework to the ‘sympathy bias’ of the participants’ allied health professionals undermines the professional ethics of the profession of which they are bound to by the Australian Health Practitioner Regulation Agency (AHPRA). A note:
The ndia has mistaken ‘sympathy bias’ for in depth and reflective clinical reasoning. ms Australia (2020) - A Report on the Impact of the Introduction of the Functional Capacity Assessment Framework on People Living With MS.
the ndis has not produced financial or actuarial evidence that sympathy bias has affected the scheme. Ardill and Jenkins (2020) state “It’s plausibility argument rather than a problem based on evidence or prevalence of “sympathy bias” affecting the scheme.” ardill A, jenkins B. Navigating the australian national disability insurance Scheme: A Scheme of Big Ideas and Big Challenges. journal of law and medicine. 2020 Dec;28(1):145-164.
as noted by Ardill and Jenkins (2020) and the NDIS itself there are cost barriers to some participants requesting access to the scheme by providing many medical and allied health reports. Participants in low socio-economic circumstances, those with cognitive or intellectual impairments, psychosocial disability, rural, CALD and Aboriginal populations will experience greater difficulties. However, Ardill and Jenkins (2020) note
Independent Assessments
Submission 31 The need for greater consistency of medical and allied health reporting would be better solved by fixing NDIS process and clearer documentation requirements. Mental Health Australia states “It has always been an area of frustration for allied health professionals that the NDIS does not provide clear guidance and templates for functional capacity assessments. We would therefore advocate that rather than introducing independent assessments, improved clarification and guidelines be provided to allied health professionals. This would enable participants to continue to utilise their familiar supports but improve the consistency of reports back to the NDIS, and provide the accuracy that is likely to be absent from a report completed by an independent assessor within the specified timeframe.” MS Australia - A Report on the Impact of the Introduction of the Functional Capacity Assessment Framework on People Living with MS. If the NDIS currently does not provide clear guidance and functional capacity assessment templates, then will this clarity and clear guidance suddenly occur with IA?
Aquity People with disabilities are more likely to experience financial and social disadvantages making them a highly vulnerable group. Mental Health Australia (2020) noted IA “do not address other barriers to equity of access such as language barriers, cultural barriers, stigma, homelessness, regional and remote location specific barriers, and the impact of the functional impairment itself.” Further they argue “the current process of supporting people with complex service needs to access the Scheme is influenced profoundly by the quality of the local service system for example, where local health systems are better linked and coordinated and there is more access to GPs, public psychiatry, allied health professionals and or psychosocial support services enable better access to the NDIS. This will also be the case for people accessing Independent Assessments.“ Participants in rural, regional and remote areas including Aboriginal communities have provided a multitude of feedback regarding a lack of access to allied health professionals and supports. The IA process will exacerbate the problem. “People living in rural, regional and remote areas of Australia are currently already waiting months for services such as Occupational and Physiotherapy. The introduction of independent assessments will no doubt create longer delays for people living in these areas.” Mental Health Australia - A Report on the Impact of the Introduction of the Functional Capacity Assessment Framework on People Living with MS. Using simplistic reasoning it may seem that giving every participant a set test will standardise the plans equitably. However, it may lead to those privileged with resources to advocate for themselves having greater access and support than those without. In effect the equity gap could widen. Those with resources will likely make multiple appeals ultimately arriving at the AAT.
Independent Assessments Submission
although, the NDIS has not been transparent about the appeals process. As drafted it could potentially lead to a cyclical process of IAs. In effect a road to nowhere.
For those able to appeal it will like 2 years to have a decision put right by AAT leading to a potential of critical supports and participant harm.
Summary:
The proposed mandatory Independent Assessments need much more investigation because:
- The Productivity Commission did not recommend Independent Assessments in the manner proposed.
- The detailed Tune report (at considerable expense and consultation) did not recommend Independent Assessments.
- AAT decisions have not found Independent Assessments to be accurate.
- The appeal process is unacceptably long and favours the privileged.
- Independent Assessments will lead to inequity for some participants.
- The pilot was abandoned and lacks transparency.
- The Occupational Therapy Association was not consulted and has many concerns.
- Mental Health Australia has voiced concerns about inappropriateness of current standardised assessments for psychosocial disability.
- MS Australia has voiced concern about inappropriate tests used on those with neurological and complex conditions by assessor who lack training or a complete understanding of these disabilities.
- The Disabled Community has not been consulted and overwhelmingly fears loss of supports
REFERENCES
Administrative Appeals Tribunal of Australia (2020) Ray and National Disability Insurance Agency [2020] AATA 3452 (8 September 2020), Retrieved on 12 November 2020 from https://www.austlii.edu.au/cgi-bin/viewdoc/au/cases/cth/AATA//2020/3452.html
Ardill A, Jenkins B. Navigating the Australian National Disability Insurance Scheme: A Scheme of Big Ideas and Big Challenges. Journal of law and Medicine. 2020 Dec;28(1):145-164.
Guscia, R., Harries, J., Kirby, N., & Nettelbeck, T. (2006). Rater bias and the measurement of support needs. Journal Of Intellectual & Developmental Disability, 31(3), 156–160. doi: https://doi.org/10.1080/13668250600876459
Guscia R, Harries J, Kirby N, Nettelbeck T, Taplin J. Construct and criterion validity of the service need assessment profile: a measure of support for people with disabilities. Journal of Intellectual and Developmental Disability. 2006;31:148–155. doi: 10.1080/13668250600876442.
Mental Health Australia. (2020).
National Disability Insurance Scheme Independent Assessments.
MS Australia (2020) - A Report on the Impact of the Introduction of the Functional Capacity Assessment Framework on People Living with MS.
Sparrow, S., Cicchetti, D. B., & Balla, D. A. (2005). Vineland Adaptive Behavior Scales Second Edition. Circle Pines, MN: AGS Publishing.