DBA - DEAFBLIND AUSTRALIA

Deafblind Australia DBA is a peak national organisation for the deafblind community in Australia. DBA welcomes the opportunity to comment on the inquiry into Hearing Health and Wellbeing to enable Government to engage with deafblind people needs and their supports to ensure they are provided with the care necessary to support their health and wellbeing.

ABOUT DEAFBLIND AUSTRALIA (DBA)

DBA was established in 1993 at the National Deafblind Conference in Melbourne, Victoria. This council was established to provide: security; sense of belonging; freedom of speech; and represent the Australian deafblind community and their supporting networks. At present, ADBC represents an estimated 300,000 deafblind people including those with multi disabilities, their families and organisations working the deafblind field.

SUBMISSION INTO HEARING HEALTH AND WELLBING AFFECTING DEAFBLIND PEOPLE

Throughout this submission, the terms deafblind, combined vision and hearing impairment and dual sensory impairment will be used interchangeably as all three are used to describe people with deafblindness. Deafblindness is described by Deafblind Australia as:

“a unique and isolating sensory disability resulting from the combination of both a hearing and vision loss or impairment which significantly affects communication, socialisation mobility and daily living.

People with deafblindness form a very diverse group due to the varying degrees of their vision and hearing impairments plus possible additional disabilities. This leads to a wide range of communication methods including speech, oral/aural communication, various forms of sign language including tactile, Deafblind fingerspelling, alternative and augmentative communication and print/ braille”

Please see below responses to the terms of reference of the inquiry.

1. The current causes and costs of hearing loss, and ear or balance disorder to the Australian health care system should existing arrangements remain in place;

There are a number of syndromes and other causes which result in hearing impairment combined with vision impairment (deafblindness). Usher syndrome results in the combination of a hearing impairment and retinitis pigmentosa (a vision condition causing tunnel vision and night blindness). There are multiple types of Usher syndrome and those born with Usher syndrome type 1 have associated balance problems. Kimberling et al (2010) found 11% of all children diagnosed with a hearing impairment carried a gene for Usher syndrome and estimate the prevalence may be as high as one in 6,000.

CHARGE Association also results in combined vision and hearing impairment. The true incidence of CHARGE syndrome is not known, with estimates ranging from 0.1 to 1.2 in 10,000. The highest incidence of CHARGE syndrome in Canada was estimated at 1 in 8,500 in provinces with a research interest in CHARGE syndrome, so the true incidence of CHARGE syndrome reported internationally may therefore be underestimated. (Blake and Prasad, 2006)

Incidence of dual sensory loss also increases significantly with age. Thus, the incidence of people with combined vision and hearing loss (deafblindness) will rise significantly as the population ages. Data from the Blue Mountains Eye Study found that the prevalence of hearing and vision loss is 81 per cent and 41 per cent respectively for people aged 85 years or older, and the prevalence of dual sensory impairment is over 36 per cent for this age group. It is predicted that the population with a dual sensory loss (hearing and vision) will increase, with the ageing of the population, to 1,650,100 by 2050 (Access Economics, 2010). The more reliable studies on dual sensory impairment in older adults using population based samples with participants aged 50 years or older, have reported prevalence to range from 4.6% to 9.7%. This prevalence is thought to significantly increase in the elderly, with one study reporting 3% of people with a dual sensory impairment in the 65 to 69 age group increasing to 13.6% in those aged 85 years and older. The prevalence of dual sensory impairment has also been found to be higher in those seeking aged care services and among those in nursing homes. (Dyke, 2013) There are currently insufficient services in Australia that cater for the needs of those with dual sensory impairment with direct services specifically for people with deafblindness (including skilled support from communication guides, therapy, case management, and accommodation) only available in Victoria and Western Australia, and to a much lesser extent in New South Wales.

The existing services in Victoria and Western Australia which are currently inadequate to support the full extent of needs of people with deafblindness, should be supported to continue by ensuring Australian’s with deafblindness have access to - services tailored to meet their needs by ensuring access to Deafblindness Consultants through the NDIS line item Specialist Case Coordination, and that staff skilled and experienced in deafblindness undertake this coordination. - skilled trained communication guides to provide 1:1 support to access all aspects of their lives. - Referral from aged care service providers to deafblind specific services of adults in aged care who have dual sensory loss.

2. Community awareness, information, education and promotion about hearing loss and health care; There is extremely limited understanding among service providers of the complex needs of people with combined vision and hearing loss which is equally reflected by community awareness and understanding. Two key areas which require addressing urgently are awareness of National Disability Insurance Scheme (NDIS) planners, and aged care services. People of all ages with combined vision and hearing loss in Australia are not currently having their needs adequately addressed because a. there is a lack of understanding by generic disability service providers (e.g. the NDIS), and single sensory disability service providers, about the needs of people with deafblindness, b. there is a lack of awareness of appropriate services that people with deafblindness could be referred to and c. there is a lack of trained, skilled staff able to provide appropriate services and support to people of all ages with deafblindness. 3. Access to, and cost of services, which include hearing assessments, treatment and support, Auslan language services, and new hearing aid technology;

Lack of access to Auslan interpreters for people who are deaf and in particular access to Auslan interpreters skilled in deafblind communication methods remains a major barrier to accessing services. People with deafblindness are also not able to fully access aural rehabilitation programs available to their peers with single sensory hearing impairments as a. transport is a major issue for people with deafblindness and b. many of the strategies taught in traditional aural rehabilitation programs rely on use of the residual sense of vision which are not available to people with deafblindness. This does not mean adults with deafblidnenss would not benefit from aural rehabilitation programs. In fact, they can potentially benefit significantly from such programs however few programs are available for this group and audiologists and speech pathologists are often not well resourced to provide services to this group.

At the moment upgrades for cochlear implants are limited for teenagers and there is no priority given to people who have Usher syndrome or other conditions where access to this technology may be vital (if they communicate orally / aurally). Circumstances of individuals requiring cochlear implants needs to be reviewed, and priority given to those with additional disabilities, particularly vision impairment, in which case reliance on hearing for access is greater than for those without additional disabilities.

There also needs to be more support given to access hearing aids or cochlear implants and repair and replacement parts where people have more complex disabilities and may be limited in their financial means long term to afford the upkeep or upgrades. Anecdotally, some adults have to choose between getting new hearing aids or meeting the needs of the family in other areas.

4. Current access, support and cost of hearing health care for vulnerable populations, including: culturally and linguistically diverse people, the elderly, Aboriginal and Torres Strait Islanders and people living in rural and regional areas;

People who are Deaf or deafblind often belong to culturally and linguistically different communities with Auslan as their first language. Auslan is the sign language used by the Australian Deaf Community and does not have a written form. Auslan users will often benefit from print material being converted to plain or easy English, however it is important to remember that even in this form this is still the person’s second language, and information may not be fully accessible. To make information fully accessible to people who are Deaf ALL information should be available in Auslan e.g. videos of Auslan interpreters interpreting the English information into Auslan. For people who are deafblind and receive Auslan through tactile means, interpreters skilled in tactile Auslan should be made available to meet with the person with deafblindness to interpret the written English information. People with deafblindness in general experience considerable difficulty accessing information and one of the best ways of sharing information with this community is to provide face to face forums in conjunction with organisations who provide services to people with deafblindness to ensure each individual’s communication needs are met, e.g tactile interpreters, visual frame interpreters, close range interpreters, audio loop, or chuchotage.

5. Current demand and future need for hearing checks and screening, especially for children (12 years and younger) and older Australians at key life stages;

It has been reported that in the health care management of older adults, the consequences of a combined vision and hearing impairment are often overlooked and the impact of the influence on this sensory loss on cognitive functioning and depression is neglected (Roets- Merken, Zuidema, Vernooij-Dassen & Kempen, 2014). In an Australian study, Jee et al. (2016, p. 200) state that currently, “…tests of vision and hearing function are not included in routine aged care assessments.” It is important that aged care service providers are trained to routinely screen for vision and hearing impairments and also in simple strategies which can significantly reduce the impacts of sensory loss and especially combined vision and hearing loss.

6. Access, availability and cost of required drugs, treatments and support for chronic ear and balance disorders sufferers;

People with hearing impairments and deafblindness can be affected by associated Benign Paroxismal Positional Vertigo, disequilibrium and other vestibular disorders. They can be affected by moving transport such as cars, buses, trains, and ferries prohibiting ease of access to the outside world. They can also be affected by turning their heads around too quickly, and looking up or down.

Vertigo can be exacerbated when there is a virus and this requires constant rest and sleep to heal. Medications for vertigo.

Stematil Stemzine Serc

All of the above are intended to assist with vertigo and nausea, however, these do not work for everyone.

Access

Individuals are required to visit a GP to obtain a prescription to purchase medication from a chemist

Availability

All of the above medications are readily available.

Other treatment not involving medication Vestibular Physiotherapist

Exercise routine designed to confuse the messages sent by the brain.

Availability

Rare specialist role, hard to access due to lack of availability.

Need referral from GP

Cost

Full out of pocket expense - No Medicare rebates Treatment from a vestibular specialist is not always effective in treating the symptoms of vertigo.

Anecdotally, the following strategies have been found to reduce some symptoms of vertigo and disequilibrium: ensuring head is kept in normal position as much as possible, without turning around too much or looking up or down, exercise, adequate sleep, reducing alcohol intake, particularly after 6:00 pm, valium, and cold and flu tablets.

There is a need to create education and awareness of condition among GPs and other allied health professionals, in particular audiologists, occupational therapists and physiotherapists to ensure appropriate referral and treatment. There is also the need to undertake research into the efficacy of different treatment approaches to benign paroxysmal positional vertigo and disequilibrium, as these disorders are not well understood and some people are significantly disabled by their effects.

7. BestA practice and proposed innovative models of hearing health care to improve access, quality and affordability;

Able Link, an e-communication service specifically for people with deafblindness is a best practice model aimed at developing digital literacy, including digital financial literacy skills of people with deafblindness. This service: - Builds capacity in people with deafblindness to access social networks through e communication and social media, reducing isolation and boredom - Reduces need for communication guides for shopping and banking support - Increases use of communication guides for increased participation and engagement in community based activities beyond basic requirements of shopping and banking.

8. Developments in research into hearing loss, including: prevention, causes, treatment regimes, and potential new technologies;

People with deafblindness experience considerable issues in communication resulting in isolation, anxiety, frustration and depression. While technologies can help to reduce the negative impacts of hearing impairment, there is also a need for research into the benefits of peer support, programs aimed at addressing mental health issues and aural rehabilitation programs.

9. Whether hearing health and wellbeing should be considered as the next National Health Priority for Australia; Combined vision and hearing health and wellbeing should be considered the next National Health Priority for Australia for a number of reasons: 1. The number of people with combined vision and hearing impairments is increasing as the population ages 2. People with combined vision and hearing impairments are among the most vulnerable and marginalised citizens in Australia, with major issues accessing even basic services, and rarely participating and engaging fully in their own communities and society. 3. The barriers and issues faced by people with combined vision and hearing impairment are multiple and complex to the extent that if solutions are found to enable full access and participation of this group of people, those with other disabilities and access issues will also benefit e.g. people with single sensory disabilities, people with intellectual disabilities, people with print disabilities, people with complex communication needs, people with physical disabilities.

10. Any other relevant matter.

Over the last few years the telecommunications landscape has dramatically shifted whereby people who are deafblind now have choice among different communication tools. This new technology also offers people who are deafblind the freedom and flexibility in the way they communicate in their day to day lives. However, current telecommunications legislation ensures people who are deafblind have access to a fixed land line only buy way of subsidies and this must be amended to include mobile telecommunication devices such as mobile phone plans. As technology changes the range of software, hardware, mainstream devices where they provide accessibility for a person who is deafblind, must be flexible and be able to be upgraded as the technology improves.

Given deafblindness is a dual sensory disability, many people who are deafblind are unable to work and consideration must be given to the accessibility and affordability of telecommunication technology and access to subsidies on a continuing basis to help fund these important technologies.

Due to the nature of privacy laws in this country and their design to protect customers, an interpreter or support worker is unable to make contact with call centres on behalf of a person who is deafblind. Currently, each customer must have ONE nominated person (with power of attorney) to make the call on behalf of the person with deafblindness. Given their range of support people and interpreters this is not possible and usually leaves them unable to contact a helpdesk for any assistance they require.

In June 2011, Able Australia together with ACCAN launched the release of a comprehensive research report on “Telecommunications and deafblind people” in Australia. This report details a consumer research and education project concerning the usage of telecommunications by people experiencing deafblindness in Australia

An overview of this report reveals that people who are deafblind have significant difficulty accessing telecommunication devices. Some of these reasons include:

• Insufficient funds or funding support to purchase required specialised equipment or software to enable telecommunication devices and online services to be accessed in the same ways as others can;

• Insufficient training options to learn how to use telecommunication equipment, computers and the Internet. Due to their complex communication needs, finding skilled trainers is difficult;

• Insufficient funding for support staff or Interpreters to assist people who are deafblind with learning to use telecommunication equipment, computers and the Internet;

• Support staff and Interpreters also need training to work with people who are deafblind because of their complex communication requirements.

Access Economics, Penny Taylor, Presentation National DeafBlind Conference April 2010, Making sense: A report into dual sensory loss and multiple disabilities in Australia, 2007, http://www.deafblind.org.au/content-files/Penny%20Taylor%20-

Blake, K. D. and Prasad, C (2006) CHARGE Syndrome, Orphanet J Rare Dis. 1: 34.accessed 25 November, 2016 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1586184/

Kimberling W. J., Hildebrand M. S., Shearer A. E., Jensen M. L., Halder J. A., Trzupek K., Cohn E. S., Weleber R. G., Stone E. M,. Smith R. J. (2010) Frequency of Usher syndrome in two pediatric populations: Implications for genetic screening of deaf and hard of hearing children. Genetics in Medicine 12, 512–516

Roets-Merken, L. M., Zuidema, S. U., Vernooij-Dassen, M. J. F. J., Kempen, G. I. J. M. (2014) Screening for hearing, visual and dual sensory impairment in older adults using behavioural cues: a validation study. International Journal or Nursing Studies 51(11):1434-40.