Submission to the Joint Standing Committee on the National
Disability Insurance Scheme
On Changes to the Guidelines for
The provision of Hearing Services under the National Disability Insurance Scheme
On behalf of
Taralye
The Advisory Council for Children with Impaired Hearing
(Victoria)
Helen Harrington-Johnson
Early Intervention
137 Blackburn Rd
P.O.Box 113
Blackburn
Victoria 3130 Tel: 03.9877 1300
Views on the impact the delay on the issuing of the reference packages has on access and provision of adequate supports and services for deaf and hard of hearing children, their families and carers.
Taralye would urge the continued development of reference packages for the management of hearing impairment in children (0 – 25 years).
Once clear guidelines for the management of hearing loss are finalised, the processing of plans should become more consistent, more equitable and meet the needs of children and their families in a timely manner. This requires streamlined referral pathways and urgent attention. Impacts of the delay of the release of reference packages include:
Relative inconsistency in the packages accessed by children and their families. The
reassurance from the National Disability Insurance Agency (NDIA) that the transfer from service delivered through Early Childhood Intervention Service (ECIS) providers to service delivered under the NDIA was not going to disadvantage families will be refuted where families are not able to receive:
-
The same timeliness of service or the same level of service they received under ECIS in their new plan under the National Disability Insurance Scheme (NDIS). There is inequity in the timeliness of plan implementation. Taralye has children living in NDIS rollout areas, who following enrolment in our service, have waited up to 13 months for their plan and so have had NO INDIVIDUAL SERVICE and some who have exceeded 13 months and are still waiting (Appendix 1).
-
The same level of service (in terms of recommended frequency) they were receiving under ECIS.
Previously (through ECIS) levels of service were discerned through specialist advice following individual client annual assessments and in negotiations with families and their needs (specified through annual Individual family support service plans) and in accordance with guidelines through the Supplement to the JCIH 2007 Principles and Guidelines for Early Intervention after confirmation That a Child is Deaf or Hard of Hearing. Now levels of service (NDIA) currently relate to a plan which depends on the amount decided upon by the planner without transparent reference to an expertly discerned package guiding a level of service. The parent of a newly diagnosed child and the planner are generally unqualified to discern the minimum (reasonable and necessary) level of service required to develop the best outcomes for the child.
Untenable waiting periods for diagnosed children before Early Intervention can commence, the long term effects on the communication development for these children, and the parents stress levels, are yet to be seen. It is recognised that the accumulative effects of not treating functional disabilities related to hearing loss will be long term. “Timing is critical in the management of childhood hearing loss. Failure to deliver an adequately funded and seamless process from screening to completion of early intervention will leave children with hearing loss at a substantial disadvantage. Research overwhelmingly shows that any delays in diagnosis, aiding/implanting of hearing devices and commencement of early intervention therapy are detrimental to communication, brain development and life outcomes” (First Voice submission to the Joint Standing Committee, March 2017).
Taralye’s experience is that there is currently wide variation in the time for children with hearing impairment to access the NDIS and to receive their plans (Appendix 1). In Victoria families previously entered the specialist intervention system very soon after diagnosis (streamlining the referral pathway in recognition of the diagnosis of the hearing impairment and so bypassing generalist providers waiting lists kept within a central enrolment system managed by the Department of Education and Training, (DET)). Taralye has families who have waited 8 months for a plan and are still waiting, and families who have still not received their planning meeting date. Taralye has offered these families some unfunded service in recognition of their need to access expert knowledge. Nevertheless this has resulted in reduced therapeutic support for the children and has caused untold stress to those families. The outcomes for the children are compromised as a result of waiting for clear guidelines.
Australia is currently a world leader in the management of hearing loss in children comprising:
Newborn Hearing screening (at birth). Diagnosis soon after screening – diagnostic testing starting within two weeks of screening referrals. In Victoria, Independent Specialist Support through the Early Support Service of the Royal Children’s Hospital into Early Intervention enabling families to attend Early intervention as soon as they feel ready. Early Intervention from diagnosis – usually within weeks of referral within time frames shown in research (the Longitudinal Outcomes for Children with Hearing Impairment study – LOCHI) to improve outcomes for children who are deaf or hard of hearing. In Victoria transition support from Early Intervention centres for children and families into schools – ensuring child and school readiness.
Hearing impairment is a disability around which qualitative data (audiological measurement) can assist in the development of guidelines for intervention and the functional effects of hearing loss are well researched because of this. It is reasonable to reflect on the evidence amongst research in longitudinal population-based research to inform development of intervention packages for support and mitigate the risk of developmental delays compounding disability due to a lack of supportive intervention (as differentiated from assistive technology).
The LOCHI study by the National Acoustic Laboratories provides Australian population-based evidence of functional disability resulting from hearing impairment in spite of timely amplification fitting.
Views on changes for the guidance for determining access to the NDIS and reasonable and necessary supports for hearing impairment.
“9.5.2 Early intervention for hearing impairment for people aged 0-25
Taralye supports the inclusion in the guidelines for Early Intervention for hearing impairment for people aged 0-25. It is suggested that a differentiation is made in the guidelines between:
The timely prescription of necessary amplification devices (assistive technology) and the implementation of therapeutic supports required to support the adequate use of the technology. Early fitting of amplification and ongoing monitoring of the benefit of amplification are critical in guiding spoken language development and developing communication strategies for children who are deaf or hard of hearing. And:
The early intervention individual scaffolding and family support (therapies) required to develop communication skills to the full potential of the participant’s cognitive ability.
Recognition of both interventions (device fittings and early intervention therapies) as discrete and necessary pathways for the management of hearing loss is advised. It is currently unclear whether these changes will affect the Early Childhood Early Intervention (ECEI) entry into the NDIS.
Views on changes made by the Additional section: “8.3.3.Additional guidance for hearing impairments…
With relation to the exclusion of the text from List D, Section 4:
- “Deafness/hearing loss – a 45 decibels or greater hearing impairment in the better ear, based on a 4 frequency pure tone average (using 500, 1000, 2000 and 4000Hz)” and the inclusion of the guide for hearing impairments of ≥ 65 decibels in the better ear (pure tone average of 500Hz, 1000Hz, 2000Hz and 4000Hz) result in substantially reduced functional capacity to perform one or more activities… and…hearing impairments < 65dB decibels in the better ear (pure tone average of 500Hz, 1000Hz, 2000Hz and 4000Hz) and an additional diagnosis affecting functional capacity:
Taralye’s views on this change is one of extreme concern; that the removal from the guidelines of the pure tone average range, for a moderate hearing loss to be replaced with audiometric readings consistent with a severe or worse hearing loss do not take cognisance of the impaired functional capacity of clients with unilateral, mild and moderate hearing losses in spite of this being well documented in research.
Concern is across a lack of recognition of reduced functional capacity for children with normal cognitive functioning who have hearing impairment in the mild and moderate ranges.
Development of functional capacity:
Reference packages need to be considered with both pure tone averages and functional levels of ability in dissemination of plans.
As reflected in the literature: the degree of hearing loss as measured by pure tone averages is not related to academic success or social outcomes - Functional hearing is related to academic and social outcomes (Antia & Jones ,2010).
For various social, economic and geographical reasons, children who are deaf or hard of hearing represent a highly heterogeneous demographic in Australia and the educational effects of deafness are profound with consistently poorer results for children who have hearing loss of all levels. It is well documented in research that children (born with normal cognitive skills) with all levels of hearing loss are vulnerable to delayed language and speech development and poor social skill development which will transfer to poor academic outcomes and lead to possible exclusion from social and workforce mainstreams. In order for children with hearing loss to meet their potential – taking their cognitive ability into account, the effect of their functional capacity must be considered in the decision to provide support.
Language is fundamental in the development of social interaction, personal development and abstract thinking, and is usually acquired incidentally. Dialogue is intrinsic in knowledge and skill development thus children who do not access language development may be at risk of cognitive impoverishment over time. Young deaf children are frequently unable to access language by the very nature of their condition. The impoverished pattern of language exposure affects learning, abstract thinking and
problem solving skills and as a result the development of their oral or sign language may be delayed and with slow progress even with amplification devices, as such therapeutic intervention should be available to mitigate the risk of delay developing. It is recommended that the guidelines reflect access to support the planning and provision of appropriate education and family support services for all children with a hearing loss.
Impact of Mild – Moderate and unilateral hearing loss: The Aim of the NDIS is to “optimise the social and economic independence of people with disabilities”.
A growing and extensive body of research indicates the linguistic, social and educational impact of a mild or moderate or unilateral hearing loss. These effects are mitigated with Early Intervention. Multiple studies reviewed in the literature indicate: “Children with these hearing losses (mild) may not be immediately apparent, but they are likely to have delayed language development and to be disadvantaged in the classroom” (Knoors & Marschark, 2015; Wake, Hughes, Poulakis, Collins & Rickards 2004)
Given that many deaf children are born with intact cognitive skills, with the potential for typical development with adequate support for the hearing impairment, the early management of their hearing loss coupled with intervention has been shown in research to support the integration of these children into the mainstream with near normal language levels. Regular monitoring will indicate the necessity for ongoing intervention.
In terms of the Insurance model on which the NDIS is based, the cost benefit of adequate early therapeutic intervention for this group is well researched and supports the intention of the NDIS to ensure that children with a disability are able to integrate capably into mainstream school and later into the workplace as contributing members of society. (First Voice submission 2017; Wake et al 2004).
The mental health problems in children who have a hearing impairment are also well documented in literature (Theunissen et al., 2014b, First Voice Submission 2017), and it is recommended that the NDIS funding system anticipates the management of these issues, putting in place preventative intervention measures to address social and emotional issues prior to them developing.
Children with any degree of hearing loss from birth clearly meet the definition of reduced functional capacity.
Left untreated, the impact of the loss (the reduction in functional capacity) is proportional to the level of loss, with children having mild or unilateral loss having more slowly developing and less severe consequences that children with bilateral profound loss.
However, even children born with a mild hearing loss, or a loss affecting only one ear, are at high risk of developing communication, educational and social delays once they enter school. Once these deficits are apparent the children would then be eligible under the NDIS. However, it would be a false economy to not provide expert early support to these children, only for them to fall behind and then having to subsequently receive much greater support to try and help them catch up. Unfortunately this is the current situation – some children with unilateral loss or with mild bilateral loss are being denied NDIS access, not due to their functional need but solely due to an arbitrary audiological measure (The Shepherd Centre).
Additional disabilities
Additional disabilities further complicate the learning pathways of deaf children, and their education options are often limited to specialized schools that already cater to a wide range of deaf and hearing children with additional disabilities of varying degrees of severity.
Children from Aboriginal and Torres Strait Islander backgrounds are susceptible to ongoing conductive hearing losses which severely impede communication development and have significant effect on academic outcomes in a vulnerable group (First Voice Submission 2017).
Another challenge to be managed is the inclusion of costs for interpreters in guidelines for packages for children who do not have English as a home language. In Victoria, the DET supports families requiring this service currently, however there is no clarity yet as to whether this will continue in the future. In Early Intervention good communication is imperative between the parents, child and the provider for effective intervention to occur. Omitting this cost exposes the children to risks of not receiving best practice intervention by providers who do not wish, or are unable to, incur the interpreter costs.
Recommendations for Reference Packages
It is recommended that a proactive graded approach to funding be taken – reflecting Audiometric Assessment (pure tone averages) and Functional Capacity (reflected through assessment) rather than a reactive approach – waiting for an additional diagnosis to be made or severe functional capacity to develop before providing therapies to supplement technologies.
Audiometric No associated Mild associated Moderate Severe Additional
Levels functional functional associated associated diagnosis
(Pure-tone) delay delay functional functional affecting
delay delay learning
Mild hearing impairment Graded funding allowing:
Moderate regular monitoring for speech, language, cognitive emotional and social
hearing development
impairment appropriate specialist intervention at a frequency relating to functional
Severe ability
hearing access to appropriate technologies
impairment increased support around key life stages involving transition
Profound access to interpreters for intervention to support work with parents
hearing impairment
The Disability Discrimination Act and the National Standards for Disability services were enacted to promote fairness and equity for students with disability. To ensure that all children with hearing impairment are provided with the means to succeed and achieve their full potential, the access to all appropriate interventions should be implemented as soon after diagnosis as possible as is indicated in research.
APPENDIX 1
As at 24th August 2017:
De-identified list of children enrolled in Taralye services since the roll-out of NDIS in their residential area.
These children do not have state government funded ECIS places as they are resident in the North Eastern Metropolitan Area of Victoria and do not have NDIS plans yet.
Under the ECIS system these children would not have incurred a wait time to start their intervention. The long term effects of these wait-times are yet to be seen.
NDIS Waiting Period
Date
DOB AGE Plan/Package until receiving
enrolled
received NDIS Plan
#-Nov-13 03-10 05-Aug-16 03-Apr-17 8 months
#-May-14 03-03 17-Aug-16 No plan Waiting
#-Mar-16 01-06 26-Sep-16 03-Feb-17 5 months
#-Feb-14 03-07 26-Oct-16 02-May-17 7 months
#-May-16 01-04 07-Nov-16 26-May-17 6 months
#-Jun-16 01-03 01-Dec-16 No plan Waiting
#-Jan-16 01-08 16-Jan-17 No plan Waiting
#-Oct-16 00-11 28-Mar-17 No plan Waiting
#-Oct-16 00-11 28-Mar-17 No plan Waiting
#-Feb-17 00-06 01-May-17 11-May-17 2 Weeks
#-Apr-17 00-05 25-May-17 No plan Waiting
#-Apr-17 00-05 02-Jun-17 No plan Waiting
#-Dec-14 02-09 23-Jun-17 No plan Waiting
Advised 1/8/17
#-May-16 01-04 20-Jun-17 waiting on Waiting
NDIS
#-Dec-13 03-09 28-Jul-17 No plan Waiting
#-Jul-08 09-02 07-Aug-17 09-Nov-16 New enrolment
#-Sep-16 00-12 08-Aug-17 No plan Waiting
References
Antia, S.D., (2010) Risk and resilience factors influencing academic and social outcomes. Paper presented at the National Technical Institute for the Deaf, Rochester, NY.
Ching, T.Y.C (June, 2014) Longitudinal outcomes of children with hearing impairment (LOCHI): 5-year outcomes. Paper presented at HEAL 2014 – HEaring Across the Lifespan Conference, Cernobbio, Italy.
Ching, T.Y.C., & Dillon, H. (2013) Introduction to the Longitudinal Outcomes of Children with Hearing Impairment (LOCHI) study International Journal of Audiology, 52.
Deloitte Access Economics 2017a, Social and economic costs of hearing loss in New Zealand, report for the National Foundation for the Deaf, Available at: using age-gender demographic changes and population growth. 2017b, Cost-benefit analysis of First Voice’s early intervention program, report for First Voice.
Joint Committee on Infant Hearing (2007). Year 2007 position statement: Principles and guidelines for
early hearing detection and intervention programs. Pediatrics, 120(4), 898-921. doi:
0.1542/peds.2007-2333
Joint Committee on Infant Hearing (2013). Supplement to the JCIH 2007 Position statement: Principles and guidelines for early intervention after confirmation that a child is deaf or hard of hearing. Pediatrics, 131(4). Doi:10.1542/peds.2013-0008.
Knoors, H & Marschark, M (2015) Educating Deaf Learners Creating a Global Evidence Base.
Submission to the National Disability Insurance Agency Childhood Deafness & Hearing Impairment: Best practice guidelines for children (birth to 18 years) with hearing loss to achieve their full life potential under a NDIS service and funding framework, (Sept 2014), First Voice.
Submission to the Joint standing Committee on the National Disability Insurance Scheme inquiry into the provision of hearing services under the NDIS, (January 2017), First Voice.
Submission to the Joint standing Committee on the National Disability Insurance Scheme inquiry into the provision of hearing services under the NDIS, (January 2017), The Shepherd Centre.
Theunissen, S.P.M., Rieffe, C., Netten, A.P. Briare, J.J., Soede, W. Kouwenberg, M Frijns, J.H.M., (April
- Self-Esteem in Hearing-Impaired Children: The Influence of Communication, Education, and Audiological Characteristics. PLoS ONE 9(4): e94521. https://doi.org/10.1371/journal.pone.0094521
Wake, M. Hughes, E.K. Poulakis, Z. Collins, C. Rickards, F.W. (Feb 2004) Outcomes of children with mild-profound congenital hearing loss at 7 to 8 years: a population study Ear and Hearing Vol 25, (1):1-8.