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