Listen, Learn,
Speak.
Taralye
The oral language centre for deaf children
Submission to the Joint Standing Committee on the
National Disability Insurance Scheme
Inquiry into the provision of hearing services under the
National Disability Insurance Scheme
Therese Kelly
CEO
Taralye — the oral language centre for deaf children
February 2017
Contents
About Taralye page 3 Summary of Recommendations page 4 Responses to Terms of Reference pages 5-10
a. The eligibility criteria for determining access to, and service needs of, deaf and hearing impaired people under the NDIS
b. Delays in receiving services, with particular emphasis on early intervention services
c. The adequacy of funding for hearing services under the NDIS d. The accessibility of hearing services, including in rural and remote areas e. The principle of choice of hearing service provider f. The liaison with key stakeholders in the design of NDIS hearing services, particularly in the development of reference packages
Investment in research and innovation in hearing services
About Taralye
Vision: Children who are deaf will listen, learn and speak to their full potential
Mission: To enhance life opportunities for children who are deaf by working closely with their families to deliver evidence based programs, by participating in research, and by advocating on their behalf
Background information
Since its establishment in 1968, Taralye has been a leader in the development of services for children who are deaf and their families. Support is primarily provided for the birth to seven year age cohort and is delivered throughout Victoria.
Each year approximately 6,000 children are supported through Taralye via our audiology and otology clinic, early intervention and early childhood programs.
The Taralye audiology and otology clinic provides hearing testing for children aged from birth to 18 years of age. Each month approximately 450 children are assessed at the clinic. Referrals are received from the Victorian
Infant Hearing Screening Program (VIHSP), parents, General Practitioners, Maternal and Child Health nurses,
Ear Nose and Throat (ENT) doctors, paediatricians and teachers. Hearing tests are bulk billed via Medicare. The clinic provides a weekly ENT clinic for those children who require medical consultations.
Taralye’s philosophies are based on evidence. A family-centred approach to working with families (where parents are recognised as the primary educators of their children), a focus on the use of listening and speaking as the primary means of communication, and the right of hearing impaired children to access the same social and educational opportunities as their hearing peers are key tenets of our approach. Early detection of hearing loss, appropriate fitting of hearing aids or cochlear implants and consistent early intervention within natural play based settings are seen as essential elements in achieving the best possible outcomes for children with hearing loss. Monitoring progress and outcomes for children on a regular basis via the use of standardised assessments is embedded in the program. This evidence informs family-decision making and guides planning of individual goals.
An important feature of Taralye’s early childhood programs is that children who are deaf are supported in settings with hearing peers from local communities, in playgroups, early learning groups and kindergarten. “Inclusive settings” provide children who are deaf with access to the same educational opportunities as children with hearing. An emphasis is placed on learning that occurs through play experiences, activities and conversations. Programs are planned around the individual needs of children to ensure adaptability to the different ages and developmental. stages of each child.
Taralye works with multiple service providers and peak bodies within the sector. Our organisation is a partner of the Royal Victorian Eye and Ear Hospital, a supporting party of the HEARing Cooperative Research Centre and a founding member of First Voice.
Key Outcome for Taralye graduates
91% of children (first language English, no delay in identification of their hearing loss or in the commencement of early intervention and no disability other than deafness) exiting Taralye to enter school in 2016 had acquired speech and language skills at or above their age appropriate range.
Summary of Recommendations
| Recommendation 1: |
Accept all children into the NDIS who are at risk of communication impairment.
| Recommendation 2:
The NDIS pathway should guarantee seamless and prompt transition for children who are deaf through the process from time of diagnosis to access of NDIS funded services.
Recommendation 3:
Fund scalable early childhood intervention programs at the level required for children to achieve and maintain age-appropriate communication.
Recommendation 4:
Special service and funding arrangements are needed within the NDIS for children with hearing loss in rural and remote areas of Australia.
Recommendation 5:
Provide initial and ongoing training for NDIA staff and contractors, and information for participants, on the factors involved in choice of hearing service provider.
Recommendation 6:
Allow the NDIA’s Early Intervention (Hearing) Expert Reference Group — which includes major service providers and consumer advocacy groups - to influence the design of NDIS hearing services, and the development of the scheme’s reference packages.
[ Recommendation 7:
Provide adequate NDIS funding to enable sector wide research and the capacity of service providers to invest in research and innovation.
Responses to Terms of Reference
Term of reference a:
The eligibility criteria for determining access to, and service needs of, deaf and hearing impaired people under the NDIS
Hearing loss is one of the most common disabilities at birth, affecting almost one in 1,000 newborns. The incidence increases to about 1 in 300 by school-age due to progressive losses and acquired deafness.
In order for children to develop literacy, access their full learning potential and to ultimately develop social and economic independence, strong listening and spoken language skills are essential.
There is a range of literature documenting the adverse developmental and educational impacts arising from congenital hearing loss, including hearing Joss in one ear only (unilateral hearing loss) and hearing loss of mild degree (25-45dB). These adverse impacts can be reduced with appropriate early intervention support. With appropriate access to professional services and supports, children with even the most profound deafness can develop fluent intelligible spoken language and achieve their academic and life potential. In order for this to occur, research shows that children need to be fitted with hearing aids or cochlear implants and commence early intervention services by six months of age regardless of the degree of hearing loss (Yoshinago-itano, 1998).
Research also shows that 30-40% of children with hearing loss have at least one additional disability (Gaullaudet Research Institute, 2011). These additional disabilities may not necessarily be apparent at birth when many infants are diagnosed with deafness through Australia’s state wide neonatal hearing screening programs. lf eligibility criteria for determining access to the NDIS includes all children with permanent congenital hearing loss this may assist in the timely identification of other additional disabilities requiring professional support, as well as support the development of early communication skills.
In Victoria, children who are currently accessing State Government funded Early Childhood Intervention Services (ECIS) or waiting for an ECIS place are deemed to be eligible for the NDIS. For children with hearing loss, this covers children with mild bilateral and unilateral hearing losses. With reports of variable NDIS eligibility criteria being applied across the states, there is concern that Victorian children identified with lesser degrees of hearing loss may no longer be eligible for government funded support in the future.
| Recommendation 1:
| Accept all children into the NDIS who are at risk of communication impairment.
Term of reference b: Delays in receiving services, with particular emphasis on early intervention services
The Joint Committee on Infant Hearing (JCIH) Position Statement 2007 endorses early detection of and early intervention for infants with hearing loss. The JCIH Position states that:
“The goal of early hearing detection and intervention (EHDI) is to maximize linguistic competence and literacy development for children who are deaf or hard of hearing. Without appropriate opportunities to learn language, these children will fall behind their hearing peers in communication, cognition, reading, and social-emotional development. Such delays may result in lower educational and employment levels in adulthood (Holden & Diaz, 1998). To maximize the outcome for infants who are deaf or hard of hearing, the hearing of all infants should be screened no later than 1 month of age. Those not passing screening should have a comprehensive audiologic
evaluation no later than 3 months of age. Infants with confirmed hearing loss should receive appropriate intervention no later than 6 months of age from health care and education professionals with expertise in hearing loss and deafness in infants and young children’.
Universal Newborn Hearing Screening has been in place across Australia for more than 10 years. In line with the JCIH statement, the single goal of early detection is to ensure that children who are born with hearing loss promptly receive early intervention to prevent delays in language, speech, audition, cognition and. social emotional development.
Australia’s achievements in this regard have been world-class. In Victoria 99.4% of newborns were screened in 2015/2016, the median age for diagnosis was < 0.9 months for infants born in 2015 and the mean age for enrolment at early intervention was < 4.9 months (VIHSP Update for Early Intervention Services, October 2016).
Up until the introduction of the NDIS, no waiting period for early intervention existed in Victoria for families with children who are deaf. Victoria’s referral system has been strong and very well supported by a wide range of professionals, particularly Early Support Workers associated with the VIHSP. This referral pathway system does not exist in all states. The specialist nature of deafness and urgency of access to early intervention for children who are deaf is acknowledged by the Victorian State Government with children bypassing the state’s ECIS central enrolment system so that direct and prompt referral to the state’s specialist early intervention service providers can be facilitated.
Unfortunately since the introduction of the NDIS, there is growing concern amongst our sector that access to early intervention services for children who are deaf no longer occurs in a timely manner due to the time taken to work through the administrative process of NDIS eligibility, plan approval and release of funds following diagnosis. With the introduction of the Early Childhood Early Intervention (ECE) intake step it is likely that access to services will become even more complicated and time-consuming.
Our experience is that the time from diagnosis of deafness to NDIS plan approval varies considerably. In one instance, a family with a child with late-diagnosed severe/profound deafness experienced a wait of approximately 5-6 months for their NDIS plan to be approved. The wait would have been at least 8 weeks longer if Taralye had not highlighted the vulnerability of the situation to NDIA. Whilst NDIA staff were responsive to our advocacy, it needs to be emphasised that: Infants diagnosed with deafness cannot wait long periods for NDIS funds to be approved before comprehensive specialist early intervention support commences without risking the potential longer term benefits which can be achieved as a result of early diagnosis.
The current situation has resulted in service providers either providing support in good faith and without the ability to back claim NDIS funds for supports beyond the plan approval date, curtailing the level of support provided, offering services on a fee-for-service basis and/or seeking alternative funding in order to support the child/family from time of diagnosis until NDIS funds are released. Placed in the situation of wanting prompt access to early intervention and with lengthy delays to access NDIS funds, some families are choosing to access State Government funded early intervention service providers which do not offer NDIS funded services. This has the effect of actually limiting, rather than enhancing families’ choice of early intervention service provider.
Recommendation 2:
The NDIS pathway should guarantee seamless and prompt transition for children who are deaf through the process from time of diagnosis to access of NDIS funded services.
Term of reference c:
The adequacy of funding for hearing services under the NDIS
More than 90 per cent of infants who are deaf or hearing impaired are born to parents with normal hearing (Mitchell and Karchmer, 2004). Eighty five per cent of these parents choose for their child to participate in programs which promote listening and spoken language outcomes. Children learning to listen and speak are at risk of losing skills and falling behind their hearing peers over time if they do not continue to receive appropriate levels of services and support.
Services which promote listening and spoken language outcomes such as those provided by Taralye are typically comprehensive transdisciplinary services offering a range of individual and group programs which aim to develop children’s spoken language, social skills and independence. These services require a focus on optimising technology and this is a specialised area. Fitting and optimal use of hearing devices (hearing aids and cochlear implants) and other assistive technology needs to be followed up with education and professional support of other professionals working with the child/family in order to maximise device use, provide optimal listening environments and obtain the best outcomes for the child. This requires specialist skills and is critical, particularly at transition points in the child’s life such as entry into kindergarten and school.
In addition to the importance of adequately funding technology and its application, consideration needs to be given to the funding needs of children who have needs apart from their deafness. This cohort accounts for approximately 30-40% of children who are deaf. The additional costs of supporting these children needs to be adequately reflected in their individual NDIS funding packages.
Regular monitoring of the children’s progress is essential for informing family-decision making and planning goals. At Taralye we use standardised speech and language tests to track children’s development in communication. Our experience with NDIS to date is that funding to undertake these assessments, analyse and report on the outcomes is not necessarily covered in funding packages and that NDIS funding guidelines for this essential support service are not clear.
From an economic perspective, there is strong evidence to demonstrate that investing in the early years for children who are deaf shows a positive return on investment. An analysis undertaken by Deloitte Access Economics in 2016 showed that First Voice centres supporting children who are deaf demonstrate good value for money in terms of improving educational outcomes, employment outcomes and wellbeing outcomes for children who are deaf. Overall, for every dollar invested in a First Voice early intervention program there is $2.20 return in benefits.
—
Recommendation 3:
Fund scalable early childhood intervention programs at the level required for children to achieve and maintain age-appropriate communication.
Term of reference d: The accessibility of hearing services, including in rural and remote areas
The accessibility of early intervention hearing services in rural and remote areas is challenged by the same issues affecting the delivery of other professional services in these regions. These issues include the ongoing difficulties in recruiting and maintaining appropriate trained professionals and the insufficient numbers of children/individuals in the region to sustain traditional local models of service provision.
Evidence indicates that there is no one model capable of servicing the needs of rural and remote areas. Models of accessibility in these regions need to take into account and be responsive to specific geographical, social, economic and cultural needs (Humphreys and Wakerman). With respect to accessibility of early intervention services in rural and remote regions for children who are deaf, this can be assisted through initiatives such as the use of telepractice, periodic visits by specialist professionals to regional areas, periodic visits by families to metropolitan service providers, hub-and-spoke models, professional linkages and ongoing secondary consultation between local professionals and specialist colleagues.
These initiatives are in place to some degree in some rural and regional areas to support children who are deaf. All of these initiatives incur additional costs for both the service provider and the family accessing the service. NDIS funding arrangements need to be sufficiently flexible enough to cover these increased costs eg. travel, internet use, time for professional consultations/liaison.
During the NDIS trial in Barwon, service providers were initially able to claim travel costs to an uncapped level (albeit within the overall transdisciplinary NDIS funded package) for the purpose of travelling to support a child whose family chose to be supported in their natural environment (local community/home). Supporting children in their natural environments is identified as best-practice by the Early Childhood Intervention Association in the “National Guidelines for best-practice in early childhood intervention” (2016). Changes in the NDIS pricing now mean that travel funds to deliver supports are limited to a maximum annual limit of $1,000 per participant per annum. This change appears to be at odds with the ECIA best-practice guideline and the NDIS guideline that “Budgets will allow flexibility in service delivery by ECEI providers to reflect the changing needs of the participant” (NDIS Price Guide VIC/NSW/QLD/TAS. Effective from 1 July 2016).
Recommendation 4:
Special service and funding arrangements are needed within the NDIS for children with hearing loss in rural and remote areas of Australia.
Term of reference e: The principle of choice of hearing service provider
There are two key areas where parents are faced with making critical early decisions on behalf of their child following diagnosis of deafness: choice of hearing service provider for devices and choice of hearing service provider for early intervention. With the high percentage of children with permanent hearing loss being born to parents with hearing, it is common for parents to have little knowledge of deafness and its implications, and this can place parents in a vulnerable position at a time when critical decisions need to be made.
In regards to choice of hearing service provider for devices, Australian Hearing has been the sole provider of services/hearing aids to children with hearing loss since 1947. With the proposed transfer of the Hearing Services Program from Australian Hearing to the NDIS, the provision of hearing aids to children will become contestable. The commercial market is untested in the specialist area of paediatric hearing aid fittings and this will introduce increased risk with service providers potentially having limited experience in working with children and being unable to build up experience in this area due to the relatively small capped market. Whilst a contestable paediatric hearing aid market would introduce choice for parents for the first time, these risks would need to be carefully managed in order to uphold the high clinical standards that have been established and maintained by Australian Hearing.
In regards to choice of hearing service provider for early intervention, parents need to be able to make an informed choice of provider based on evidence. Evidence and principles of best practice service providers are outlined in two relevant documents: the “National Guidelines for best-practice in early childhood intervention”
(Early Childhood Intervention Association, 2016); and, specifically for children who are deaf, in the “Best
Practices in Family-Centred Early Intervention for Children Who are Deaf or Hard of Hearing: An International
Consensus Statement” (Moeller, 2072). In summary, these guidelines outline that children are most effectively supported by multi disciplinary professional teams working in partnership with families, that professionals need to be appropriately trained, and that children’s progress and program quality need to be monitored. These are the principles that should be used to inform parents about choosing an early intervention service provider.
Recommendation 5: |
Provide initial and ongoing training for NDIA staff and contractors, and information for participants, on the factors involved in choice of hearing service provider.
Term of reference f:
The liaison with key stakeholders in the design of NDIS hearing services, particularly in the development of reference packages
The Victorian State Government Department of Education and Training has an NDIS Implementation and Engagement Unit which has facilitated regular forums and meetings with early childhood intervention service providers since the introduction of the NDIS in 2013. These forums are held in each of Victoria’s NDIS geographical regions in line with the scheme’s rollout timetable. The forums have often included representatives from NDIA and provide an opportunity for Taralye to seek information and updates on the general design, rather than hearing service-specific design, of the NDIS.
Specific liaison regarding the NDIS design of hearing services has occurred through face-face meetings, emails and on a case-by-case advocacy basis.
Taralye also has representation on the NDIA’s Early Intervention (Hearing) Expert Reference Group. The aims of this group are to advise on the best available contemporary evidence to inform the NDIS on hearing loss policies, to assist in the development of guidance to improve the capacity of NDIS staff to understand and apply this evidence to access and planning decisions, and to build effective relationships between the NDIA and key diagnostic and early intervention service providers to ensure a nationally consistent, evidence-informed hearing loss strategy. This group has met on three occasions since March 2015. Whilst progress has been slow, the group held a productive meeting on 24 January 2016 and progressed discussion on the reference package concept.
Recommendation 6: |
Allow the NDIA’s Early Intervention (Hearing) Expert Reference Group — which includes major service providers
and consumer advocacy groups - to influence the design of NDIS hearing services, and the development of the scheme’s reference packages.
Term of reference g: Investment in research and innovation in hearing services
Access Economics (Listen Hear! The economic impact and cost of hearing loss in Australia, 2006) noted that the greatest cost to Australia of hearing loss is lost earnings of hearing impaired people. Deafness is predicted to affect one in four Australians by 2050 and currently costs the economy in excess of $11.7 bn per annum.
Taralye strongly supports the provision of appropriate funding and investment in research for hearing services as this will ultimately lead to innovations that will improve the quality of lives and the ability of hearing impaired adults to gain employment.
Australia is very well respected in its leadership of research and innovation in the deafness sector. This work is led by high profile institutions including the HEARing CRC, the National Acoustic Laboratories, the Hearing Hub, the Menzies School of Health, Ear Science Institute and universities. Within the sector, collaborative partnerships exist between these institutes and service providers to support a range of research initiatives.
In order for early childhood intervention service providers to be more involved in research collaborations and innovation, funding arrangements under the NDIS would meet the actual cost of services delivered by early intervention service providers. Under the current scenario, not-for-profit organisations like Taralye are heavily reliant on fundraising to meet recurrent expenditure and this makes it challenging to commit adequate resources towards research without compromising service delivery.
| Recommendation 7:
Provide adequate NDIS funding to enable sector wide research and the capacity of service providers to invest in research and innovation.