Sydney ∙ Macquarie ∙ Liverpool ∙ Wollongong Canberra ∙ Online & Telepractice Website: www.shepherdcentre.org.au
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Second supplementary submission to the Joint Standing Committee on the NDIS, concerning the provision of hearing services under the NDIS
Dr Jim Hungerford, CEO
March 2018
Submission
This submission is made subsequent to the hearing of the Committee held on 7th March 2018 in Sydney; the evidence provided by the NDIA during that hearing; and the requests of the Committee on what could be done within the requirements of the Act and the NDIA systems.
Notes from the hearing have been provided to the Committee, copied to the NDIA, as a confidential submission. This paper builds from those notes.
The following recommendations are written to address the comments from Committee members on what specifically can be done to address the issues. These recommendations are:
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Australian Hearing to be appointed the exclusive Early Childhood Partner for children with hearing loss. This solves all of the issues of speed of pathway and expertise of advice that is currently a major issue. It is completely acceptable under the Act and does not require any known changes to the NDIA systems.
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The NDIA resumes acceptance of transdisciplinary package quotes for early intervention services for children with hearing loss. These quotes would detail the activities covered (to ensure only relevant activities are paid for) and would be based on evidence of effectiveness and cost benefit that would need acceptance by the NDIA. Providers who do not provide quotes or who can’t provide evidence accepted by the NDIA would continue under the normal per hour system. This approach has previously worked well in the NDIS, is completely acceptable under the Act and does not require any known changes to the NDIA systems.
Implementation of these two recommendations can be done immediately by the NDIA and they would solve all of the immediate problems.
The only further recommendation, to be addressed over the coming 12 months, is the need to continue to contract Australian Hearing as the exclusive provider of paediatric audiology support under the NDIS.
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A separate topic that I would raise with the Committee is that the evidence of the NDIA appears to point to a number of critical misunderstandings.
The most important of these are:
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The providers are not seeking a return to the old system or any form of guaranteed income. They are seeking a system and funding that will enable children to achieve good language.
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There is no known effective alternative to the approach proposed by the providers (as above). Simply underfunding services will not work, nor will substituting a complex pathway for a simple one.
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Early intervention is based on achieving outcomes that improve functioning, which incurs increased short-term cost for longer-term improvements. The funding needs to be provided to enable services that can achieve outcomes (such as age-appropriate language by school entry). Comparisons of funding levels for early intervention with hearing loss to the support required for children with other types of disability is not helpful.
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The outcome data being collected by the Agency is not predictive of funding needs. For instance the very first communication item collected by PEDI-CAT is: “uses words, gestures or signs to ask for something”. The assessment of this is not appropriate to predict the therapy needs of a deaf baby.
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Appendix: The profound impact of early childhood hearing loss Children with early hearing loss face numerous challenges on their road to achieving full social inclusion. This document focusses on children who have a permanent hearing loss (which may be due to sensorineural, conductive, or be mixed in nature; or due to Auditory Neuropathy Spectrum Disorder; and which may affect one or both ears) diagnosed in the first 5 years of life.
Up to 1 in 500 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 (approximately 4,000 children across Australia). 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.
Children diagnosed with hearing loss in both ears (bilateral hearing loss) have been demonstrated to have the most profound deficits in speech, language, literacy and social inclusion. However children with loss in one ear only (unilateral hearing loss or single-sided deafness) also suffer significant impacts. As listening through one year alone is often sufficient when a child is in a quiet environment, these impacts often only become evident once a child is in a challenging auditory environment such as day care or school. However at that time the same impacts as with bilateral loss then often become evident – poor development of language, speech and/or literacy; and poor social inclusion.
As with children with bilateral loss, an early investment into children with unilateral loss also prevents a significantly larger future cost to the child, their family and to society.
Speech and Language
Speech and language outcomes for children born with permanent childhood hearing loss (PCHL) have historically been compromised (Allen, 1986; Holt, 1994). Late diagnosis of PCHL has been associated with 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 seven to eight 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 PCHL 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).
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
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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.
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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