NDIA Accountability Project

Specialist assessments needed for children with hearing loss

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Submission to the Standing Committee on the NDIS inquiry into Independent Assessments

Submission from The Shepherd Centre, 26th March 2021

Dr Jim Hungerford, CEO

Summary

The vision of The Shepherd Centre is that:

Every child with hearing loss can achieve their full potential in the world through their listening, spoken language, literacy and social skills.

The Shepherd Centre strongly supports the intent of the use of independent assessments to make access and eligibility to the NDIS more equitable, however we believe that they will create major unplanned negative consequences for participants who will respond to therapy, due to the lack of predictive value of standard general assessments for the therapy required by the participant or the future response to that therapy.

Use of IA as described will be disastrous for the development of participants who should receive benefit from therapy. However, we support its value for participants in a stable situation and who require ongoing day to day support. Implementing a system of disability-specific assessments would create valuable information for the future. However, due to the specialist nature of the required assessments, it is not likely that a standardised approach to independent assessments will be possible.

Our recommendations are:

  1. Standard IA assessments are not sufficient for planning for participants where therapy can alter functioning, as they do not predict the therapy needed or the response to therapy. These participants need additional funding for therapy.
  2. To assist future planning, a specialist battery of assessments be developed for specific disabilities (such as for children with hearing loss), performed by a service provider or an independent assessor, with the assessment results collected by the NDIA for use in future planning.

Response to the inquiry into Independent Assessments

The assumption behind the Independent Assessments approach, using generalist tools, is that the level of functioning established by the assessments is proportional to the level of need and thus the results provide an equitable way to determine the appropriate funding. With appropriate assessments, this assumption is appropriate for participants in a stable situation and who require ongoing day to day support.

However, the assumption is false for children or adults where therapy can affect future functioning (such as with children that benefit from early intervention). Two participants may have similar levels of functioning, however if they have different disabilities they will need different types and intensity of therapy; they will respond very differently; and the funding that is justified will be very different. Use of IA as described will be disastrous for the development of participants who should receive benefit from therapy.

For example, a young child with profound hearing loss will only be assessed as having a mild impairment at 24 months (with few assessable effects from their deafness). With appropriate specialist therapy (whether based on signed or spoken language) this child should go on to develop the same communication and other skills as any other child; without it they are likely to never develop good communication, profoundly limiting their ability to succeed in their home, school or life.

This is an example of how generalist assessments cannot assess how a participant will respond to therapy, or provide information on the type or intensity of that therapy. These assessments are not valid for determining the support needs of participants whose functional capacity will change based on the therapy that is provided.

The Independent Assessments may still provide valuable information for day-to-day needs; however additional funding is required for the therapy required to improve future functioning.

Standard IA assessments are not sufficient for participants where therapy can alter functioning, as they do not predict the therapy needed or the response to therapy. These participants need additional funding for therapy.

In situations where therapy can affect future functioning, therapy needs are determined by combining understanding the specific aetiology of the disability, the circumstances of the individual, and diagnostic information from specialist assessments.

Obtaining this information in an independent way, to minimise the inherent conflicts, would be valuable. However, it would be very difficult to do in practice, as the degree of disability-specific expertise required normally means the only people who can do it are the specialist therapy service providers themselves.

However, it would still be valuable to establish a panel of specialised assessments for specific disabilities, to build up a bank of information that can be used to guide future decisions. Even though the information may need to be provided by the service providers themselves, it is better than no information.

For children with hearing loss, specialist Listening & Spoken Language service providers (such as The Shepherd Centre) use a combination of information (such as that below) to determine the specialist therapy required by the child, so that it can be implemented quickly to minimise what would otherwise be major life-long deficits in language, executive function & social skills.

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The standardised tools with Australian norms used to assess the needs of children with hearing loss include (among many others):

  • Hearing loss: a variety of pure tone audiometry tests
  • Listening: the Functional Listening Index – Paediatric (FLI-P)
  • Language: the Preschool Language Scales (PLS) and Clinical Evaluation of Language Fundamentals (CELF)
  • Speech: the Diagnostic Evaluation of Articulation and Phonology (DEAP)

Non-standardised tools are also used, to assess areas such as: access to sound (such as the Ling Sounds, functional access to sound is different from the ability to detect a tone in an audiometry test); executive function; and social skills.

Of the standardised assessments, critical ones to use in an independent assessment setting would be one of the language (PLS or CELF) tools. However, these tools are not valid if they are repeated within 12 months (as the child learns the test, invalidating the results). As a result they could be performed annually by an independent assessor, or by the service provider, but not by both. Because they are so critical in designing the therapeutic program required by a child, the full detailed test results must be available to the specialist service provider supporting the child. There is no channel for this to occur and complex issues of privacy and data ownership are created, meaning that use of independent assessors may be impractical.

However, the NDIA needs to collect information to assist future planning and so should establish a standard assessment battery for children with hearing loss. Because of the repeated assessments problem, these need to be provided by a service provider or by an independent assessor, but with the results reported to the NDIS in either case. We propose that the assessment battery should be all of:

  • unaided audiometry,
  • FLI-P,
  • either the PLS or CELF (as appropriate by age), and
  • DEAP

To assist future planning, a specialist battery of assessments be developed for specific disabilities (such as for children with hearing loss), performed by a service provider or an independent assessor, with the assessment results collected by the NDIA for use in future planning.

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Children with hearing loss

Children with hearing loss differ the majority of children in the NDIS, in that:

  • their disability is a predictable consequence of a specific medical diagnosis;
  • the diagnosis can be made a year or more prior to the disability being observed;
  • appropriate interventions provided in the first months of life (and continued through the EI years) can substantially prevent the development of disability; and
  • the nature of the specific diagnostics, aids and therapies required to provide excellent outcomes are known.

Congenital early childhood hearing loss affects a child from before birth, preventing a baby from detecting sound normally (including in utero) and interfering with the development of the specialised parts of the brain that are required for listening (the lack of stimulation to the auditory cortex results in restricted development through neuroplasticity). If the auditory cortex does not develop appropriately in early life the impact on listening and spoken language is normally permanent. Knowing this, hearing devices and specific therapies must be provided from a few months of age to assist subsequent development of the cortex. These interventions are very specific (whether based on Listening & Spoken Language, or based on sign language) and to be effective they must be provided by a service that specialises in them.

In addition, even the best hearing devices do not reproduce normal hearing. As a result, young children miss many language and auditory cues that are critical for the development of language, executive function and social skills. Specific therapy is required through the early intervention years to overcome the shortfalls of the hearing devices and buttress language, executive function and social skill development.

Finally, once appropriate functioning has been developed, the children still require some level of support due to either their own specific circumstances or due to the general issue of the hearing devices not reproducing normal hearing. However, this level of support is far lower than that required if the specific diagnostics, aids and therapies were not provided from the earliest months of the child’s life.

About The Shepherd Centre for deaf children

The vision of The Shepherd Centre is that:

Every child with hearing loss can achieve their full potential in the world through their listening, spoken language, literacy and social skills.

The Shepherd Centre is one of the world’s leading services providing audiological, early intervention and family support for children with hearing loss. We were established in 1970 and we are a specialist in working with these children, with a family- and person-centred approach, to enable them to achieve spoken language.

We assist over 700 children each year through both face-to-face and telepractice services. These children range from less than 1 month of age through to school-age and onwards; come from remote and metropolitan areas; all socioeconomic backgrounds; many cultural and linguistic backgrounds; and include many children with further needs and disabilities beyond hearing loss alone.

We focus on assisting these children to develop their listening, spoken language and social skills so that they can achieve their potential in life. The outcomes achieved by the program are world leading, with the children typically developing spoken language at the same level as their peers without hearing loss.

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The children in our specialised early intervention service receive a transdisciplinary/interdisciplinary program incorporating specialist Listening and Spoken Language Specialists and therapists; Paediatric Audiologists; Child and Family Counsellors; and ENT Specialists (amongst other professionals). The program includes a cochlear implant program (integrated within the early intervention program) for those children requiring this level of assistive hearing device. The early intervention children are aged up to 6 years; with hearing loss that may be bilateral or unilateral; and losses of all levels ranging from mild to profound.

Children ‘graduate’ from our early intervention program with the same level of spoken language skill as other children of the same age. More than 90% of all graduates go on to attend mainstream classes at a mainstream school. The statistics for the overall program – including the many children with additional needs, coming from a background other than English, with delayed diagnosis, etc – are outstanding, with the overall median language well within the normal range. We also provide support for children at school and ongoing support for those children who have received a cochlear implant with us.

Our whole-program early intervention outcomes are published each year. The research we conduct and the outcomes we achieve are presented at multiple national and international conferences.

Impact of childhood hearing loss

Children with early hearing loss face numerous challenges on their road to achieving full social inclusion. More than to 1 in 1,000 children born will have some degree of permanent hearing loss. Further children will develop hearing loss in the first few years of life (due to progressive loss, disease, trauma, etc) and by the time they are of school age approximately 1 in 300 children will have permanent hearing loss (more than 1,100 children across NSW). More than 90% of these children are born to parents who use a spoken language in the home and who would normally want their child to speak their home language.

Speech and Language

Speech and language outcomes for children born with permanent childhood hearing loss have historically been compromised (Allen, 1986; Holt, 1994). This includes significant delays in speech and language, which has subsequently been associated with delays in literacy development (Francis, Koch, Wyatt, & Niparko, 1999; Lin & Niparko, 2006). For instance, a review in 2008 reported that 67% of deaf children were taught outside of traditional mainstream classes; and historically the average oral and written language age of high school deaf graduates from the United States of America was at or below that of the average hearing 7-8 year-old child (Durieux-Smith, Fitzpatrick, & Whittingham, 2008).

In recent years, a positive shift in the speech and language outcomes for children with early identified hearing loss has occurred. However, international research data (not that on children graduating from The Shepherd Centre) continues to suggest that the majority of these children are unable to achieve speech and language outcomes commensurate with their typically hearing peers. (e.g., Forli et al., 2011; Niparko et al., 2010; Tait, De Raeve, & Nikolopoulos, 2007). Moreover, the limited research concerning speech development suggests that the acquisition of clear, intelligible speech for this population has been particularly challenging (e.g., Blamey, Barry, & Jacq, 2001).

The recent Australian LOCHI study (Longitudinal Outcomes of Children with Hearing Impairment, Ching et al., 2017) has demonstrated that poor language outcomes persist for Australian children with hearing loss, with a median score of children with hearing loss at just under 85 (vertical red line). This contrasts with the median score of the children completing EI at The Shepherd Centre, where the median score is typically 100 (the same as the community average of 100, peak of dashed line in LOCHI graph):

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LOCHI outcomes

TSC outcomes

Literacy

In 1979, Conrad stated that 92% of school leavers with severe-profound hearing loss were unable to achieve reading levels commensurate with their chronological age. For the children with profound PCHL, this figure increased to 99%. An editorial in the Journal of Deaf Studies and Deaf Education in 2007 suggested that 30% of school graduates with severe/profound SNHL were functionally illiterate (Marschark, Archbold, Grimes, & O’Donoghue, 2007). Given the repeated reports of close links between long term literacy outcomes with early speech and language development success (e.g., Overby, Trainin, Smit, Bernthal, & Nelson, 2012; Pennington & Bishop, 2009), these poor literacy outcomes are of significant concern.

These poor results can continue despite standard speech & language therapy. Werfel found that children with hearing loss performed more poorly than children with normal hearing on measures of oral language, phonological memory, and conceptual print knowledge (Emergent Literacy Skills in Preschool Children With Hearing Loss Who Use Spoken Language: Initial Findings From the Early Language and Literacy Acquisition (ELLA) Study. Lang Speech Hear Serv Sch. 2017 Oct 5;48(4):249-259). Although children with hearing loss generally demonstrated a positive growth in emergent literacy skills, their initial performance was lower than that of children with normal hearing, and rates of change were not sufficient to catch up to the peers

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over time. All children with hearing loss in this study were receiving speech-language services, per parent report. Thus, it appears that current practices in early intervention do not readily lead to lessening the magnitude of deficit for this population. Instead, it is possible that explicit instruction in particular skills is needed to accelerate the positive change observed in 4-year-old children with hearing loss.

Socioeconomic Issues

Socioeconomic problems are well reported for children with severe-profound hearing loss, however the extensive issues documented for people with hearing loss in Australia (Hogan, 2012) indicate the likelihood of effects on children will all levels of loss.

A logical consequence of compromised speech, language and literacy outcomes has been the persistence of substantially unacceptable long-term psychosocial problems as well as reduced employment opportunities particularly for those with congenital severe-profound PCHL (Kentish & Mance, 2009; Venail, Vieu, Artieres, Mondain, & Uziel, 2010).

Higher rates of self-reported depression are noted for these children (Theunissen et al., 2011). Parents of children with PCHL report high levels of stress (Meadow-Orlans, 1995) as well as increased marital breakdowns, particularly for those families where children have greater severities of PCHL (Henggeler, Watson, Whelan, & Malone, 1990). Significant delays in speech, language and literacy has been associated with consequent limits to educational, occupational and socio-economic options (Francis et al., 1999; Lin & Niparko, 2006).

Economic reports also identify significant financial burden. For example, according to the Access Economics Report, 2006, costs associated with hearing loss for the Australian economy were approximately $11 billion per annum. These costs include the supply of personnel and equipment associated with diagnosis of hearing loss; ongoing supply and maintenance of paediatric audiological devices (hearing aids and/or cochlear implants); supply of specialised medical personnel, audiologists, and educational facilities/clinicians. Long term lost earnings for individuals with hearing loss was listed as incurring the greatest costs, accounting for more than half (57%) of all financial costs. An analysis of the cost-benefit of early intervention for children with hearing loss in Australia demonstrated significant benefits (First Voice, 2011). Governments have thus become progressively motivated to research and access solutions for congenital PCHL, ideally in early childhood, before these expensive long-term consequences take effect.

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