Joint Standing Committee on the National Disability Insurance Scheme – Independent Assessments
31 March 2021
Committee Secretariat Joint Standing Committee on the National Disability Insurance Scheme PO Box 6100 Parliament House CANBERRA Canberra ACT 2600 ndis.sen@aph.gov.au
deeply concerned that the introduction of Independent Assessments will place a greater burden on participants, add a superfluous layer of assessment, place participants with rare diseases at a greater disadvantage, and disempower participants by denying them a direct review of the assessment results when they believe the assessment fails to accurately represent their needs.
Applicants and participants of NDIS often have many regular healthcare appointments. For our son, have 1 - 2 appointments per week, sometimes as many as 4 in a week (and there are many individuals with considerably more appointments than this). Our appointments are predominantly for therapy to maintain muscle function but also include assessments and reviews to monitor for changes or complications. The healthcare professionals we see have a sound understanding of his rare disease, so they know what to look for when considering his needs and what signs to look for that may indicate potential health changes. They have also developed a strong rapport with him, ensuring he feels safe to discuss any concerns and help to maintain his dignity by avoiding highlighting or drawing attention to his limitations. Our healthcare team provides review assessments when there is concern about a change to his health, and these are conducted as part of his routine care and treatment.
The Independent Assessment process will add an additional assessment to an already heavy appointment load and in many cases is unlikely to contribute any new information to the assessments already conducted as part of routine care and treatment practices. For us, this means more time away from school for our son, and more time away from work for the parents to participate in an assessment where the information is already known.
In addition, the independent assessors are unlikely to have a sound understanding of rare diseases. This places participants with rare diseases at a significant disadvantage because they are suddenly required to be the experts in their condition and be able to clearly explain the symptoms, course and prognosis to the assessor. Many NDIS participants are among our most vulnerable citizens and placing the responsibility on them, or their advocates, to be the experts in their condition, instead of relying on the assessments from the professionals in their treating healthcare team, is neither equitable nor appropriate.
Related to this, for some individuals, discussing their disability may be highly sensitive and triggering.
Having to repeatedly disclose personal information to strangers can lead to a loss of a person’s sense of dignity, and this is especially true for individuals who are likely to be triggered by discussing their disability. For our family, when our son was first diagnosed we were left reeling in shock and development. Our treating specialist helped us to complete the NDIS application paperwork which was immensely helpful during an incredibly stressful and upsetting time. This process would have been much more difficult and unnecessarily complicated if we had then needed to discuss the diagnosis, prognosis and expected care & treatment needs for the next 12 months in detail with a stranger (who would likely have had very little understanding of this rare condition) when we barely understood the condition ourselves and were grieving our son’s current and expected losses.
If the independent assessors have limited knowledge about the participant’s condition, the participant is again left at a disadvantage because the ‘assessment toolkit’ used may not accurately reflect the participant’s function and care needs. For example, fluctuating abilities or the psychosocial components of a disability are unlikely to be adequately captured. In our case, our son has a progressive condition where the trajectory can vary significantly between individuals with the same disorder. He can currently participate well in many activities but often with modifications needed – and the ‘assessment toolkit’ is likely to overlook the conditions required for him to participate, thus giving a false indication of his functional abilities. Most of the support he currently requires relates to maintaining muscle function and slowing progression. Again, the ‘assessment toolkit’ is not going to adequately describe his care needs as it will only provide a superficial snapshot of current physical ability without describing the modifications and treatment required to maximise his independence. Additionally, the standard measures listed to be included as part of the ‘assessment toolkit’ fail to adequately capture psychosocial support needs. Psychosocial needs have a significant impact on a person’s quality of life and if not adequately supported may result in acute mental health problems and adversely impact on functional capacity.
Mandatory independent assessments with assessors who have very limited understanding of a participant’s health condition, using an ‘assessment toolkit’ that will not provide an equitable assessment across all disabilities, is likely to result in many participants wanting to appeal the independent assessment findings. However, at present there is no avenue for participants to appeal the independent assessment itself. Participants may appeal the decisions made by NDIA on the basis of the independent assessment, but they are denied their right to appeal if they believe the independent assessment is a poor reflection of their functional capacity and support needs.
If standard assessment measures are deemed necessary there should be an option for participants’ current treating team to administer these tools as part of their standard care and treatment. This would be less invasive, less confronting and less time-consuming for participants, and would also reduce the cost burden on the NDIA because an independent assessment could be avoided, much of the necessary assessment information would have already been collected as part of standard care practices, and there would be a comparatively smaller additional cost associated with the treating care providers administering a small number of additional questionnaires. The option to use an independent assessor could be made available for any participants whose treating practitioners declined to complete the additional measures, but these should only be used in conjunction with the treating practitioner’s assessment and recommendations to ensure participants are not disadvantaged either by their ability to access healthcare professionals or their ability to clearly explain their own condition and needs.
Mandatory Independent Assessments
Mandatory independent assessments risk further disadvantaging some of our most vulnerable citizens by requiring the participant, or their advocate, to suddenly become an expert in their health condition and to be able to clearly explain their condition, function, current and future needs.
These assessments would add further burden to already marginalised participants and their carers by requiring more time away from school/work, being emotionally triggering and contributing to a loss of dignity from having to disclose personal information to another stranger when the assessment information is likely already known.
The ‘assessment toolkit’ will not provide an equitable measure of functional capacity across all disabilities and will likely disadvantage anyone with fluctuating, progressive or psychosocial symptoms.
The lack of an appeal process to challenge independent assessment results is also inequitable, particularly considering the assessors are unlikely to be familiar with all conditions, particularly rare ones, and risk missing crucial elements of a participant’s functioning and care needs.
If standardised measures are deemed essential, participants should have the option of requesting their treating team administer these as part of their standard care and treatment. Where this isn’t an option and an independent assessor is needed, the ‘assessment toolkit’ results should always be considered in conjunction with the treating healthcare professional’s assessment results and recommendations, because the latter is likely to provide a far more comprehensive overview of that participant’s function and care needs than generic assessment tools.
Sincerely,
Julia Burlison