Submission on the provision of hearing services
under the National Disability Insurance Scheme
The National Disability Insurance Scheme (NDIS) can significantly improve the social and economic participation of people with hearing impairment. It should provide funding to purchase interpreter services at the times when the NDIS participant needs them, improve the availability of assistive technology and strengthen early intervention, including for children with hearing loss.
While recent data on the economic impact and cost of hearing loss in Australia is not readily available, in 2006 Access Economics estimated that the real financial cost of hearing loss was $11.75B or 1.4% of Gross Domestic Product (this included the costs of providing government services and lost productivity due to hearing loss).1 A strong message from the report was that early intervention and rehabilitation of people with a hearing loss would more than re-pay the cost in the long-term through higher workforce participation and associated economic benefits. Consistent with the long-term perspective of an insurance scheme, the NDIS should be encouraging and supporting the early diagnosis, intervention and management of hearing impairment.
This inquiry is timely as not all participants with hearing impairment are receiving supports at the time or intensity that would be of most benefit.
Our submission includes general comments on the adequacy of existing NDIS supports for hearing impairment and specific comments on two areas, specialist services for children and services for people with deafblindness.
Draw on the expertise of providers of hearing services The hearing services sector has built substantial expertise over many decades. The NDIA must draw on this expertise in its design work. This is particularly important in developing appropriate packages of support for children with hearing impairment which may need to draw on a coordinated array of specialists. NDS is uncertain as to whether the NDIA has developed reference packages for eligible children with hearing loss, but they are required and should draw on the extensive knowledge of the sector and evidence from research.
1 Access Economics, The economic impact and cost of hearing loss in Australia, (February 2006).
Scheme eligibility The NDIS must be financially sustainable; however, it must not be so focused on cost restraint that opportunities for substantially increasing the social and economic participation of people with hearing impairment are lost.
NDS understands that the NDIA is working with the Office of Hearing to clarify the eligibility criteria for a hearing loss threshold for NDIS participants (particularly adults). Insurance principles— a lifetime approach, investing in people through early intervention and building capacity—highlight the value of timely access to appropriate supports (including assistive technology) for adults who develop substantial hearing impairment before the age of 65 years.
All young children developing permanent hearing loss prior to the age of 6 should be eligible for early intervention services under the NDIS. In addition, given the impact that hearing loss has on a child’s development and education, including young children with unilateral hearing loss in the NDIS Early Childhood Early Invention (ECEI) process is warranted. The NDIS should draw on the expertise of hearing specialists to devise an appropriate package of early intervention supports for this group of children.
The NDIS should investigate whether it should have a role in assisting any child aged 6 to 16 years who is developing moderate bilateral and permanent hearing loss. Without assistance, these children will have greater difficulty completing their education and training. If they do not meet eligibility for the NDIS, arrangements need to be agreed between governments about how these children will receive the assistance they need. Without access to appropriate hearing services, their education will suffer.
Better planning is needed While we understand the current pressure on the NDIA to accelerate the development and activation of plans, there is frustration with the quality of new plans. As many planners do not understand the different supports needed depending on the type and cause of the hearing impairment and age of the participant, plans are inconsistent and of variable quality.
Planning experiences reported by profoundly deaf people, include: initial contact being made by telephone which has led to significant delays in entering the scheme being denied an interpreter for a planning meeting being asked to choose in their planning session between either hearing aids or interpreters (in some cases they have been allowed both; in others they can only choose one option) needing new assessments of hearing loss even when old information is very unlikely to have changed (and it is not likely to have improved); these cost time and money being asked to provide evidence that they used interpreters for social and personal events
NDS urges the NDIA to develop hearing impairment expertise among some planners so they can provide advice to other planners and review all plans for people with hearing impairment prior to their completion.
The inconsistency and sometimes inadequacy of funding The funding made available to participants with similar types and levels of hearing impairment varies for reasons not easily understood. For example, for assistive technology some people are being granted what they have requested while others are being asked to obtain a quote from an occupational therapist. Some are being given funding for the occupational therapist assessment and others are not.
A provider reports: “We know of one person who has $750 for assistive devices in her plan and another who has $1900. Both plan to use those funds for new hearing aids. It is not clear why one has more than the other. The first person has decided that the hearing aids she needs will cost $5000. So there is a clear difference between the funds provided and what she needs”.
Additional guidance on ‘reasonable and necessary’ would help people understand what the NDIS is likely to fund for people with hearing impairment.
Allocations for Auslan interpreting can also vary substantially and occasionally fall well short of what is required.
The problems associated with the adequacy of funding for many children with hearing impairment are highlighted later in this submission.
Reducing delays in diagnosis and providing early intervention support The design of the NDIS includes a strong emphasis on early intervention for young children with disability or developmental delay and for others in areas where there is robust evidence of cost-effectiveness. Such an approach is an important part of making sure the NDIS is sustainable.
Early intervention for children with hearing impairment is essential for their speech, language and literacy development and for social inclusion. Good early intervention supports will help them keep pace with their peers and ultimately to be productive workers and members of their communities.
Many babies with hearing loss are identified through early childhood screening; this is ideal as it allows interventions to occur early. Unfortunately some children will be missed and others will develop hearing loss before starting school but will not be identified. The diagnosis and referral system for these children is unsatisfactory. Governments must work together to find ways to identify these children so they can be referred to hearing services. Not receiving services, or receiving them at an older age, will impede the learning and development of these children (and their future employment options).
Access to information People with hearing impairment and their families require information to inform their choices about hearing services. This is especially critical for selecting practitioners
with the appropriate skills and knowledge to work with particular groups such as children and people with deafblindness.
The planned NDIS e-market should enable participants to identify providers best placed to support them. It is also important that the national NDIS Quality and Safeguarding system (under development) give assurance that providers have staff with the appropriate qualifications, experience and/or skills to support people with hearing impairment.
Improved availability of hearing services Ensuring equitable access to appropriate supports, particularly for people with hearing impairment who live in rural or remote areas or are from culturally diverse backgrounds, will be difficult. The NDIA needs to consider how to improve supports for the following groups in particular:
Indigenous Australians
Indigenous Australians experience ear disease and associated hearing loss at up to ten times the rate of non-Indigenous Australians (across most age groups and across remote, rural and metropolitan areas). While state and territory governments are largely responsible for the health-related services associated with impaired hearing and its prevention, the NDIS must have a dedicated focus on how it can improve the lives of Indigenous Australians with permanent and significant hearing loss, regardless of where they live. Technology must be part of the solution.
People in rural, remote and very remote Australia Currently, the range and availability of disability supports in parts of Australia are limited. To ensure all participants have access to supports, NDIS pricing must be adequate to encourage service delivery wherever they live. Unfortunately the NDIA’s desire to have a single price list operating across the country with only loadings for remote and very remote will not deliver the service coverage that is required. This approach must be revised.
Innovative uses of technology to support people with hearing impairment in rural, remote and very remote areas (and in other thin markets) should be explored and funded.
Australians from culturally diverse backgrounds The NDIA must develop targeted information about the NDIS for people from culturally diverse backgrounds and have engagement strategies to reach them. These communities may not know the eligibility criteria for accessing the NDIS and may not be aware that supports for people with hearing impairment are available.
Clearer interface with mainstream services Mainstream service systems—such as justice, health, aged care and education— need to improve their assistance people with disability. The NDIS interface arrangements, outlined in the Applied Principles agreed among governments, will need refining as the NDIS rolls out across the country. At present the collaboration
that is required across service systems is impeded by demarcation and cost-shifting disputes.
Investment in research and innovation in hearing services Insurance models need evidence to inform decisions about appropriate supports. The NDIA should invest in research and innovation, including on hearing services. We need to better understand which interventions and at what intensity will assist people with hearing impairment (particularly children) to maximise their participation in society.
In relation to Indigenous communities, the NDIA should work with Commonwealth and state and territory governments to encourage the development of health initiatives—such as reducing the incidence of otitis media. Effective preventative measures would reduce NDIS expenditure on hearing supports within Indigenous communities.
Effective specialist services for children with hearing impairment Evidence indicates that with good early intervention programs, more than 75% of children achieve levels of speech, language and comprehension equivalent to those of normal hearing children of the same age.2 Delays in receiving hearing services puts these children at risk of permanent communication disability.
NDS is pleased that this review is occurring at a time when there is still opportunity to shape the design of the NDIS. Concerns about the provision of hearing services for children have emerged over the past three years:
significant delays in the referral and delivery of early childhood intervention providers without the skills and experience to work with children with hearing impairment some children who received services pre-NDIS not eligible under the NDIS funding often insufficient to cover the costs of the required supports: the annual funding shortfall for three organisations providing comprehensive hearing services to children aged 0–6 years has been estimated to average $8,000 per child (a combined shortfall of over $4.8M) poor quality and inconsistent plans
Children should commence early intervention as soon as possible and definitely within 6 months of diagnosis. During the NDIS trial, some children were waiting longer than this to receive supports.
2 Australian Hearing reports that there are 3,300 children aged 0-6 years fitted with hearing aids in Australia. Around 700 of these receive ECI T-D services from Australian First Voice (FV) centres who have proven speech and language outcomes published annually. Over 75% of children on these programs achieve levels of speech, language and comprehension equivalent to those of normal hearing children of the same age.
Effective services for people with deafblindness People with deafblindness remain some of the most marginalised in Australia. While the exact prevalence is not known, in 2013 there were an estimated 13,700 Australians with deafblindness under 60 years old (Dyke, 2013). We emphasise that vision and hearing impairments are frequently inadequately diagnosed and poorly addressed in people with intellectual disability.3
People with deafblindness need: adequate access to Auslan interpreters Interpreters working with people with deafblindness need skills in deafblind communication methods. They are currently in short supply. adequate funding for Auslan in NDIS support packages NDIS packages for people with deafblindness need funding for specialist deafblind communication guides (specially trained support workers) and specialist deafblind consultants (allied health professionals) over as well as funding for interpreters (at least 312 and 48 hours per annum respectively). hearing services in rural and remote areas including Auslan services Interpreters are in short supply, particularly in rural and remote parts of Australia. Addressing this is not easy but does require loadings on NDIS prices to be sufficient to encourage both supply and investment in technology. Unfortunately, accessing interpreters remotely via videoconferencing is not an option for people who use tactile communication methods. adequate access to aural rehabilitation services4 investment in workforce development The current disability workforce is inadequately equipped to meet the needs of people with deafblindness, which leads to delays in receiving services, services not being of the desired quality and limited choice. Inadequate NDIS prices are constraining the investment in staff training. There is an urgent need for information on providers that have the skills and experience required to work with people with deafblindness. NDIA planners with knowledge of deafblindness priority provision of hearing aids and cochlear implants investment in research on effective services for people with deafblindness There are insufficient services in Australia that cater for the needs of people with dual sensory impairment (specialist providers are only available in Victoria and Western Australia and, to a lesser extent, in New South Wales). This marginalised group of Australians would benefit from research and resource development, informed by the knowledge of sector specialists. February 2017
3(Kiani and Miller, 2010), the prevalence of hearing impairment is at least 40 times higher for these people compared with the general population (Carvill, 2001). The prevalence of deafblindness in adults with an intellectual disability is 5%, considerably higher than the rest of the population (MeuweseJongejeugd et al., 2008). It is important to note this figure does not include children, so the number will be higher across the whole population of individuals with a developmental or intellectual disability who are eligible to participate in the NDIS. 4 See http://www.asha.org/public/hearing/Adult-Aural-Rehabilitation/
Contact:
National Disability Services is the peak industry body for non-government disability services. It represents service providers across Australia in their work to deliver high-quality supports and life opportunities for people with disability. Its Australia-wide membership includes 1100 non-government organisations which support people with all forms of disability. Its members collectively provide the full range of disability services—from accommodation support, respite and therapy to community access and employment. NDS provides information and networking opportunities to its members and policy advice to State, Territory and Federal governments.