NDIA Accountability Project

Concerns about Independent Assessments for Children who are Deaf or Hard of Hearing

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Submission to the Joint Standing Committee on the

National Disability Insurance Scheme Inquiry into Independent Assessments

March 2021

Aussie Deaf Kids

Thank you for this opportunity to provide input into the decision by the National Disability Insurance Agency (NDIA) to implement mandatory Independent Assessments from 1 July 2021.

Background Aussie Deaf Kids provides online support and information for parents of children who are deaf or hard of hearing. We have considerable concerns about the introduction of independent assessments, particularly in relation to the appropriateness of the selected assessments, the qualifications of the assessors and the effect this will have on both the eligibility and supports that children and young people will receive under the National Disability Insurance Scheme (NDIS).

Aussie Deaf Kids firmly supports the decision to leave the audiological care of children and young people below the age of 26 under the Hearing Services Program. This decision has removed a significant concern expressed by parents and providers about hearing services moving to the NDIS. This has meant that all children with permanent hearing loss receive timely and equitable audiological services from audiologists at Hearing Australia who are experts in childhood hearing loss.

Children with congenital hearing loss often have a complicated start to life as a result of prematurity and other medical emergencies, while others have syndromes that impact on multiple body systems. Approximately 40 percent of children with congenital hearing loss have additional needs including autism, cerebral palsy, intellectual disability, and global developmental delay.

“Hearing loss, when unaddressed, impacts many aspects of life: communication is challenging; language and speech development in children is hampered; and cognition, education, employment, mental health, and interpersonal relationships can all be negatively affected… Across the life course, people with hearing loss commonly have higher rates of depression and report lower quality of life compared with their hearing peers… Hearing loss among children, adolescents and adults is frequently linked with feelings of inadequacy and low self-esteem. People with hearing loss, even when it is addressed, may commonly reflect the stigma that is associated with hearing loss and the use of hearing devices…”1

Children and young people with hearing loss are a highly heterogenous population with specialised assessment and support needs. While hearing aids, cochlear implants, and other assistive listening devices provide improved access to communication for people with hearing loss, they do not ‘fix’ the hearing loss. Other supports, such as early intervention for spoken or signed language acquisition, and social and emotional support are needed for the child to participate fully at home, school and in their community.

1 World Report on Hearing. Geneva: World Health Organization; 2021.

With this background in mind, we address some of the Terms of Reference for this Inquiry

into independent assessments.

1. The development, modelling, reasons and justifications for the introduction of

independent assessments into the NDIS: Aussie Deaf Kids believes the modelling used to justify the implementation of independent assessments is flawed. The analysis is done on a pure financial basis (i.e., to model based on the benefits and costs of the NDIS to the government) and not an economic analysis where the benefits and costs to the economy as a whole are considered. The available modelling appears to be a cost-saving exercise for government justified as changes to assist participants, their families and carers. The available modelling and justification for independent assessments provides us with no confidence that the NDIS will be “simpler, faster or fairer” for children and young people with hearing loss.

2. The human and financial resources needed to effectively implement independent

assessments: The inequalities already experienced by participants in rural and regional areas and people requiring Auslan interpreters or other translation services will be further exacerbated unless workforce capacity and availability is urgently addressed.

  • There is already a shortage of allied health professionals to meet the needs of NDIS participants. Using allied health professionals as independent assessors will further increase waiting times for services such as speech pathology. Has this been considered when looking at workforce capacity?

3. The independence, qualifications, training, expertise and quality assurance of

assessors The Cambridge English Dictionary defines “Independent” as “not influenced or controlled in any way by other people, events or things”. The assessments cannot be seen as independent when the assessor is employed by an organisation chosen and funded by the NDIA to undertake independent assessments. Presumably there will be considerable pressure on output and costs in the contracts of the eight organisations on the Independent Assessment Panel and the assessors they employ.

  • Independent would also indicate that the assessor is free to use assessments that will effectively evaluate the functional capacity of the individual. The “disability neutral” nomenclature embedded within the Independent Assessment reform is far from being person-centred. People with disability have individual needs that cannot be merged into a “neutral” category. The unique needs of children and young people with hearing loss have been demonstrated for over 150 years with the establishment of august institutions to meet their specific needs because they could not be met in other disability settings.

Using a medical analogy, a resident in Accident & Emergency will assess a patient for a suspected stroke. The resident will always call for the expertise of the neurology team to determine the diagnostic and treatment needs of the patient. The resident would not

call for an orthopaedics consult

It is difficult to understand why professionals with the appropriate expertise are considered inappropriate in the context of people with disability who have unique and complex issues. A physiotherapist assessing the functional capacity of the child with hearing loss is equivalent to the orthopaedics team evaluating the needs of the person with a suspected stroke. At best, it is not appropriate; at worst, a flawed assessment can have lifelong consequences for the child.

There is no opportunity for people to challenge the results of the Independent Assessment, so the expertise of the assessor is crucial for the effective evaluation of the person’s functional capacity. From a review of the eight organisations on theIndependent Assessment Panel, experience with children is limited and experience with children with hearing loss appears to be non-existent. People in rural and regional areasand people whose first language is Auslan will once again be compromised and offered little choice or control.

Aussie Deaf Kids believes that the qualifications and expertise of the proposed assessorsare not appropriate for children and young people who are deaf or hard of hearing.

  1. The appropriateness of the assessment tools selected for use in independent assessments to determine plan funding: There is no transparency in how the assessments were evaluated and decided to be fit-for-purpose. For participants to have confidence in the Independent Assessment process, a transparent and rigorous evaluation of the assessment tools is needed - carried out by academics with expertise in evaluating the efficacy and specificity of the assessments tools for the purpose they are intended. This is a reform that will have profound impact on the lives of the 500,000 people anticipated to become NDISparticipants over the next few years. The Independent Assessments Framework doesnot provide evidence of the necessary rigour needed to provide confidence that the changes are indeed in the interest of the participants, as purported by the NDIA.

Aussie Deak Kids has several concerns regarding the ability of the proposed assessmenttools to adequately determine the functional capacity of children and young people withhearing loss and the implications this has for the plan funding.

  • No children/people with hearing loss were included in Pilot 1. The data for participants in Pilot 2 are not available. People with hearing loss account for approximately five percent of the NDIS participants. While the percentages are low, the implications of inaccurate functional assessments for participants are not inconsequential. The pilot program failed to consider the needs of people who are deaf or hard of hearing in the selection of assessment tools.
  • The NDIA reports on the satisfaction of people involved in the Pilot 1 but not on whether the assessments adequately assessed the functional capacity of the people involved. A test can have good reliability and validity but only for the population for which it was developed.
  • What is the threshold that the assessments will deem to be a significant disability? For example, a child who is deaf or hard of hearing might score above the norm in activities of daily living and gross and fine motor skills but score well
  • below the norm on communication and interpersonal skills. How will this affect their perceived level of functioning and how has this threshold been determined?
  • Will children be assessed on how they function with or without their listening device and what consideration has been given to this situation? A child who uses cochlear implants might communicate effectively in quiet situations but have considerable challenges in noisy environments which will have major implications for their functional capacity.
  • How will the functional capacity of children who use Auslan to communicate be assessed? Have the assessment tools been evaluated on their validity when using interpreters?

Aussie Deaf Kids does not support the introduction of independent assessments as proposed by the NDIS Independent Assessments Framework. The evidence for the selection of assessment tools is insufficient to provide any confidence that the assessments will be valid or equitable for children and young people who are deaf or hard of hearing. The results of flawed assessments can have lifelong adverse consequences for children who are deaf or hard of hearing as timeliness is critical in achieving positive outcomes.

We are disturbed that the Government intends to introduce the Bill to Parliament for passage by 1 July 2021 with little regard for the voices of people with the lived experience of people with disability and their families, the professionals who support them or, apparently, any recommendations from this Inquiry.

About Aussie Deaf Kids Aussie Deaf Kids is committed to improving the lives of children who are deaf or hard of hearing by empowering their families through the provision of online support and information.

Aussie Deaf Kids is a registered charity with the Australian Charities and Not-for-profits Commission (ACNC).

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