Joint Standing Committee on the National Disability Insurance Scheme PO Box 6100 Parliament House Canberra ACT 2600
31 March 2021
Dear the Hon Kevin Andrews MP (Chair)
Thank you for the opportunity to provide a comment on the National Disability Insurance Scheme (NDIS) shift to independent assessments, as part of the Joint Standing Committee on the NDIS inquiry and ongoing monitoring of the NDIS.
Hearing Matters Australia Inc (HMA) is an incorporated association whose members are living with hearing loss or are closely associated with those living with hearing loss. We are a volunteer- based organization who share our lived experienced to offer support, advocacy, and information.
Our members have difficulty commenting on the Independent assessments to be adopted by the NDIS at present, as the system has not yet been implemented, and few people living with hearing loss have participated in the current trials. Although our members have limited experience with independent assessments (IA) in association with the NDIS, many are NDIS participants, or potential participants and will be facing IA when applying to the NOIA, and when plans are reviewed. Our lived experience enables us to anticipate challenges that those living with hearing loss are likely to experience when undergoing independent assessments, as described on the NDIS website.
Our comments are as follows:
HMA supports assessment of functional (in)capacity
We welcome the use of assessment tools that extend beyond traditional measures of impairment. The audiogram, traditionally the cornerstone of most audiology/ audiometry reports, is not a functional measure and we strongly support the use of assessment tools that reliably identify functional (in) capacities.
The International Classification of Functioning, Disability and Health, commonly known as the ICF, is widely adopted and is, we understand, the basis of independent assessments and the tools to be used by independent assessors, such as the WHO DAS 2.0.
The ICF Checklist and the WHO-DAS 2.0 are recognised by the ICF research team themselves as not being beneficial for specialist groups. Whilst understanding that there is sometimes a need to compare across a range of health conditions and interventions, that may result in a loss of details related to a specific group of people. As a result, the ICF team has developed Core Sets for a range of conditions, including a core set for hearing loss.
(02) 9878 6089 f admin@hearingmattersaustralia.org HEARING MATTERS I Ground Floor, Suite 600, The Australian Hearing Hub
HMA questions if self report will adequately uncover functional (in)capacity for those living with hearing loss
We are concerned that the use of generic and general tools like the WHO DAS 2.0, if applied by assessors who have little experience with those living with hearing loss, could miss out on the depth and range of effects of living with hearing loss, and the necessary and reasonable supports an individual may require, could be overlooked. As far as we can anticipate, other assessment tools that form the toolkit for independent assessments (Vineland, CHIEF and CANS) are unlikely to uncover the functional capacity of those living with hearing loss.
Extreme fatigue, miscommunication, misunderstanding in social situations, avoidance of social and work situations due to listening fatigue are common reasons for functional incapacity amongst those living with hearing loss. Yet, it is typical that it is only after taking steps to manage hearing loss, and gaining, through contact with others living with hearing loss, that most people become aware that their hearing loss itself that was a major contributor to their functional incapacity.
Further instructions to NDIS assessors when using the WHO DAS 2.0 is to question twice - once with an answer about function without the support of a person, and the second time to answer about function with the support of a person. Those living with hearing loss are often reliant on technology as well as other people. We are concerned that this form of questioning will not uncover potential NDIS participants’ reliance on a range of supports that have an evidence base of being beneficial, albeit dependent on individual and environmental factors.
HMA questions reliance on self report and interview in the absence of supplementary
information
Tools to be used for independent assessments rely on self reporting and participating in an interview. Those with hearing loss will be required to participate in the type of activity that is the very reason for their application to the NDIS. We do question whether those with limited mobility would, for example, be expected to attempt to walk to or during an independent assessment? The NDIS is expecting applicants and participants to effectively use the channel of functional incapacity to undertake the assessment. Self report modes of assessment are challenging for all those with communication difficulties, whether related to hearing loss or not. Communication difficulties are thus a disadvantage, as the reporting to the assessor could be compromised by the condition itself.
Arguably, communication difficulties may be observed by assessors because of the very nature of the condition, but we know from lived experience that when placed in a challenging communication situation, learned adaptation, usually acquired over many years, will mean that the NDIS participant may, to an uninformed assessor, appear to be functioning.
Feedback from our members who have had NDIS independent assessment trial experience is that the assessors have had little or no knowledge of hearing loss.
(02) 9878 6089 f admin@hearingmattersaustralia.org HEARING MATTERS I Ground Floor, Suite 600, The Australian Hearing Hub
Summary
To recap, we are concerned that those with gradual onset hearing loss who are typically not acutely aware of the impact of the loss due to a long period of (mal) adjustment to living with hearing loss, usually for years before assistance is sought, may have difficulty explaining their difficulties to an assessor who is relying on the self-report tools in the NDIS independent assessment toolkit - such as the WHO DAS 2.0.
The impact of hearing loss is experienced during interaction, within families, workplaces and communities, and at a societal level. Whilst we agree that a clinical assessment of hearing impairment (i.e. an audiogram) is inadequate to identify the challenges of living with hearing loss, we are also concerned that a tool that focuses too generally on function, and is focused only on the individual (as is the case with WHO DAS 2.0) may not go far enough or be adequate. In this case, if an assessor did not have knowledge of the d/Deaf and Hard of Hearing communities, the challenges and functional incapacity of those who have had to gradually adapt to a condition that is typically progressive, invisible, discriminated against, and hence denied by many until the effects are unavoidable and devastating, could be overlooked.
Addressing our concerns
We hope to see that the NDIS provides adequate training for independent assessors, not all of whom may be experienced in the field of hearing loss. As the agency responsible for contracting the eight businesses who will be conducting these assessments, we do hope that you will have input into the training of the assessors. As a consumer- based organization, we would be pleased to contribute to that training, to ensure appropriate communication strategies during the interview, and to provide insight into living with hearing loss for an accurate understanding of responses, so that further probing and objective investigations can be undertaken, in fairness to all applicants and participants in the NDIS.
Further, HMA would be pleased to participate in any further inquiries, meetings, or hearings in relation to the ongoing evolution of the NDIS, and other matters that directly impact those living with hearing loss.
Thank you once again for the opportunity to contribute to this inquiry.
Yours sincerely
Christine Hunter (HMA President) Rebecca Stewart (HMA Board Member)
Louise Collingridge (HMA Board Member / Secretary)
(02) 9878 6089 f admin@hearingmattersaustralia.org HEARING MATTERS I Ground Floor, Suite 600, The Australian Hearing Hub