Committee Secretary Joint Standing Committee on the National Disability Insurance Scheme Department of the Senate PO Box 6100 Parliament House CANBERRA ACT 2600 AUSTRALIA
Dear Committee Secretary,
Re: Joint Standing Committee on the National Disability Insurance Scheme inquiry into Independent Assessments
Synapse Australia is a peak body for brain injury. Synapse’s core business is working with people, families and communities affected by brain injury, and advocating for system-level changes that reduce the social, economic, and emotional cost of brain injury. Synapse has a strong focus on advocacy for marginalised people at high risk of brain injury, including Aboriginal and Torres Strait Islander peoples and people living in urban, regional, rural, and remote areas of Australia. Synapse is committed to advocating for an NDIS that is accessible, fair and culturally appropriate for Aboriginal and Torres Strait Islander people and those of other marginalised groups, to ensure that those experiencing brain injury-related disability receive appropriate support.
This letter includes Synapse’s response to the Terms of Reference for the Committee’s inquiry into the NDIS Independent Assessments. We have focused our response on Synapse’s primary areas of work. Our service delivery, advocacy, research and engagement work with people with brain injury across Australia informs this response.
Yours Sincerely,
Adam Schickerling National Director Strategy & Engagement
D. The independence, qualifications, training, expertise and quality assurance of assessors.
According to the NDIA, Independent Assessors will be allied health professionals with a minimum of 12 months full time clinical experience. It is not clear if assessors will be required to be culturally competent or have significant knowledge or qualifications in disability or working with marginalised groups.
Given the complex and multidimensional experience of disability, particularly for Aboriginal and Torres Strait Islander people and those from culturally and linguistically diverse backgrounds, it is likely that independent assessments will require specialist and disability knowledge and/or input to be accurate and comprehensive. Specialist input is also recommended for people with acquired brain injuries who may have significant cognitive impairments that appear “invisible” without specialist knowledge or skill.
Cultural competency in this context must be defined by Aboriginal and Torres Strait Islander Peoples. Adams and colleagues note that culturally competent assessment involves a commitment by the assessor to “self-exploration, critical self-reflection and recognition of the implications of the power differentials inherent in the role of clinicians and clients.” 1 It is important to note that cultural competency alone will not ameliorate the harms of culturally inappropriate assessment tools.
The criteria for assessors set by the NDIS means that many of those assessors will have limited experience working with people with complex disabilities, Aboriginal and Torres Strait Islander people, people from culturally and linguistically diverse backgrounds, and people in rural and remote areas.
Recommendation: Independent Assessors must have depth of knowledge, experience and training across a variety of physical and psychosocial disabilities, and be culturally competent, and trauma informed.
E. The appropriateness of the assessment tools selected for use in independent assessments to determine plan funding.
There are significant criticisms of the process used to select the assessment tools for use in independent assessments. Firstly, little evidence has been provided regarding how the Framework Criteria used to select the tools was developed. Given that the Framework underpins the selection of the tools that will determine a person’s access (or not) to the NDIS and level of funding, it is critical that this framework was developed appropriately, based on evidence and consultation.
Several criticisms are obvious. Cultural validity for use with Australia’s First People is of critical importance in ensuring equity of the assessment process, and failure to account for this perpetuates and embeds
1 Adams, Y., Drew, N., & Walker, R. (2014). Principles of practice in mental health assessment with aboriginal australians. In N. Purdie, P. Dudgeon, & R. Walker (Eds.), Working together: Aboriginal and torres strait islander mental health and wellbeing principles and practice (2nd ed.).p. 278. Canberra, ACT: Dept of Health and Ageing.
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systemic discrimination into the NDIS. Cultural validity (and validity for use with other marginalised group) should have been included in one of the criteria for tool selection. The Framework Criteria states:
“The suite of assessment tools should include norm referenced tools (to quantify the magnitude of a person’s functional capacity in a comparable way across the entire population).” p.8
There is a known lack of normative data for Aboriginal and Torres Strait Islander people and other culturally and linguistically diverse groups. Given this, consultations to develop the framework should have involved Aboriginal or Torres Strait Islander people, culturally and linguistically diverse people and other minority groups. Lack of cultural validity combined with failure to consult deeply & effectively renders this framework inappropriate and harmful. The lack of transparency regarding this process needs to be rectified, and the process of the framework development made public.
Additionally, we question the inclusion of “questionnaire-based” assessment being part of the Framework Criteria. For people with brain injury there is well-established scientific evidence that people with brain injury often show lack of self-awareness into their own impairments, rendering questionnaires invalid in many cases2 An alternative process must be developed, involving engagement of advocacy, health and disability professionals known to the applicant.
- With regard to the final instruments selected, there are several issues.
- The quality of the literature on which the selections were based is questionable, with two of the systematic reviews cited as evidence being unpublished works.
- None have been validated for use with Aboriginal and Torres Strait Islander people. This renders these tools inappropriate for use and invalidates the Independent Assessment process when working with Aboriginal and Torres Strait Islander people.
- Generic instruments have been found to be particularly insensitive for assessing the impact of brain injury. 34
Recommendation. Overall, greater transparency is needed with regard to development of the Framework Criteria, testing of the tools and the pilot studies. The framework development, literature search and pilot study should be made available for review by the scientific community. In particular, factors such as potential bias in sample selection and recruitment methods are suggested by the reports issued so far. In addition, comparison of the results generated by the Independent Assessment compared to normal practice is warranted and critical to demonstrating that the Independent Assessment process is valid.
Recommendation: Re-development of the Framework Criteria to ensure the needs of Aboriginal and Torres Strait Islander people and culturally and linguistically diverse groups, for whom there are few norms and few validated tools, are not intentionally disadvantaged and discriminated against. We suggest the current Framework Criteria be scrapped and the process of Framework development be developed using a
2 Bach, L. J., & David, A. S. (2006). Self-awareness after acquired and traumatic brain injury. Neuropsychological Rehabilitation, 16(4), 397-414. 3 Tate, R. L. (2004). Assessing support needs for people with traumatic brain injury: The care and needs scale (cans). Brain injury, 18(5), 445-460. 4 von Steinbuechel, N., et al., (2020). Differences in health-related quality of life after traumatic brain injury between varying patient groups: Sensitivity of a disease-specific (QOLIBRI) and a generic (SF-36) instrument. Journal of neurotrauma, 37(10), 1242-1254.
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transparent, inclusive, independent and peer-reviewed manner. Failure to do so further embeds systemic racism and discrimination into the NDIS.
Recommendation: The NDIA should support and mandate the use of culturally valid assessments for Aboriginal and Torres Strait Islander people. We also recommend an alternate process for Independent Assessment for Aboriginal and Torres Strait Islander people and culturally and linguistically diverse groups, which must include qualitative assessment and engage advocacy, health and disability professionals known to the applicant.
F. The implications of independent assessments for access to and eligibility for the NDIS.
Aboriginal and Torres Strait Islander Australians, culturally and linguistically diverse & other marginalised groups of people with disability are at extreme risk of losing access to, or failing to engage with the NDIS, should the Independent Assessment process be implemented.
Implementing a culturally unsafe policy directly contributes to this failure to provide access, and a lack of inclusiveness in the scheme. The result will be that many of those who need it most will be unwilling or unable to access the NDIS, despite extremely high need.
Recommendation: The NDIS should mandate that culturally competent and safe policies, practices and procedures be used during the access process. The Independent Assessment process is not culturally competent or safe.
J. The appropriateness of independent assessments for particular cohorts of people with disability, including Aboriginal and Torres Strait Islander peoples, people from regional, rural and remote areas, and people from culturally and linguistically diverse backgrounds.
Several features of the proposed Independent Assessment process clearly contravene accepted protocols for working with Aboriginal and Torres Strait Islander Australians, and are likely to cause significant disadvantage. Implementing independent assessors contravenes First Nations’ principles of relationship and rapport-building, and the use of yarning, a culturally valid form of communication. When working cross- culturally, it is virtually impossible that in three hours, an assessor can adequately develop rapport, understand a person’s disability and how it impacts their life, involve relevant specialists, carers, advocates or translator, and complete assessments.
Failure to respect cultural protocols is likely to perpetuate the discrimination that Aboriginal and Torres Strait Islander people often face in mainstream health institutions, and contribute to disengagement from the NDIS access and assessment process.
Furthermore, this process may do harm. The introduction of Independent Assessment conducted by strangers with instruments that are not culturally safe, replicates the historical trauma inflicted on Aboriginal
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peoples. Much of the suspicion that Aboriginal people have regarding assessment derives from its political nature as a process of social and cultural control. 5
Recommendation: The NDIA must co-design and mandate an Independent Assessment process for Aboriginal and Torres Strait Islander people that is consistent with evidence-based and culturally safe practices and principles. This should include: longer time for assessments, multiple assessments, culturally valid methodologies and assessment tools, use of advocates, translators and professionals known to the participant. Policies, practices and processes that mandate cultural guidance and culturally safe care should be embedded.
K. The appropriateness of independent assessments for people with particular disability types, including psychosocial disability.
For people with neurocognitive disability and brain injuries, the Independent Assessment process may not yield accurate or comprehensive results. It is well-established that people with brain injury often have impaired self-awareness, including a lack of insight into their impairments and over-estimation of their level of functioning. 6 Moreover, the level of insight fluctuates over time as a function of experience , healing (a process that takes up to 10 years), and changing personal expectations.7 This is why it is important that assessments of need and function be made by practitioners known to the individual over a significant period of time. Making a one-off Independent Assessment in three hours, without the involvement of practitioners known to the application, is completely inadequate to determine capacity or functioning, as well as being harmful.
Recommendation: The Independent Assessment process is completely inappropriate for assessing function for people with brain injury. We recommend that practitioners, family members and others, who know the individual, are consulted. We also recommend using objective measures of performance (e.g. cognitive and neuropsychological tests) during the process of determining needs, since these directly relate to impairments. An alternative assessment process must be developed, involving engagement of advocacy, health and disability professionals known to the applicant.
5 Drew, N., Adams, Y., & Walker, R. (2010). Issues in mental health assessment with indigenous australians. In N. Purdie, P. Dudgeon, & R. Walker (Eds.), Working together: Aboriginal and torres strait islander mental health and wellbeing principles and practice Canberra, ACT: Dept of Health and Ageing. 6 Bach, L. J., & David, A. S. (2006). Self-awareness after acquired and traumatic brain injury. Neuropsychological Rehabilitation, 16(4), 397-414. 7 Fleming, J., & Strong, J. (1999). A longitudinal study of self-awareness: Functional deficits underestimated by persons with brain injury. The Occupational Therapy Journal of Research, 19(1), 3-17.
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