Submission 36 — Senses Australia — The provision of hearing services under the National Disability Insurance Scheme (NDIS) | External submission

Submission to the inquiry into the provision of hearing services under

the National Disability Insurance

Scheme (NDIS)

Joint Standing Committee on the NDIS – Hearing Services

January 2017

RECOMMENDATIONS ………………………………………………………………………………………………………. 4 Recommendation 1. …………………………………………………………………………………………………. 4 Recommendation 2. …………………………………………………………………………………………………. 4 Recommendation 3. …………………………………………………………………………………………………. 4 Recommendation 4. …………………………………………………………………………………………………. 4 Recommendation 5. …………………………………………………………………………………………………. 4 Recommendation 6. …………………………………………………………………………………………………. 5 Recommendation 7. …………………………………………………………………………………………………. 5 Recommendation 8. …………………………………………………………………………………………………. 5 Recommendation 9. …………………………………………………………………………………………………. 5 Recommendation 10. ……………………………………………………………………………………………….. 5 Recommendation 11. ……………………………………………………………………………………………….. 5 Recommendation 12. ……………………………………………………………………………………………….. 6 Recommendation 13. ……………………………………………………………………………………………….. 6 Recommendation 14. ……………………………………………………………………………………………….. 6 Recommendation 15. ……………………………………………………………………………………………….. 6 Recommendation 16. ……………………………………………………………………………………………….. 6 EXECUTIVE SUMMARY …………………………………………………………………………………………………….. 7 BACKGROUND ………………………………………………………………………………………………………………….. 9 Introduction to deafblindness …………………………………………………………………………………….. 9 Causes of deafblindness and prevalence …………………………………………………………………. 9 Availability of and access to Auslan interpreters ………………………………………………….. 10 What is interpreting? …………………………………………………………………………………………………. 12 RESPONSE TO TERMS OF REFERENCE……………………………………………………………………….. 13 The eligibility criteria for determining access to, and service needs of, deaf and hearing impaired people under the NDIS ………………………………………………………………. 13 Recommendation 1. ……………………………………………………………………………………………….. 13 Delays in receiving services, with particular emphasis on early intervention services ………………………………………………………………………………………………………………………… 13 Timely access to appropriate intervention services ………………………………………….. 13 Recommendation 2. ……………………………………………………………………………………………….. 14 Recommendation 3. ……………………………………………………………………………………………….. 14

Provision of hearing aids and cochlear implants …………………………………………………… 14 Recommendation 4. ……………………………………………………………………………………………….. 14 The adequacy of funding for hearing services under the NDIS …………………………. 14 Auslan interpreting …………………………………………………………………………………………………. 15 Recommendation 5. ……………………………………………………………………………………………….. 15 Recommendation 6. ……………………………………………………………………………………………….. 15 Need for 1:1 support from specialist deafblind communication guides ………… 16 Recommendation 7. ……………………………………………………………………………………………….. 17 Recommendation 8. ……………………………………………………………………………………………….. 18 Recommendation 9. ……………………………………………………………………………………………….. 18 Access to specialist Deafblind Consultant Services …………………………………………… 18 Recommendation 9 …………………………………………………………………………………………………. 19 Access to e-communication and development of digital literacy and digital financial literacy of people with deafblindness ………………………………………………….. 19 Recommendation 10. ……………………………………………………………………………………………… 20 Mental health services ……………………………………………………………………………………………….. 20 Recommendation 11. ……………………………………………………………………………………………… 20 Access to aural rehabilitation services ………………………………………………………………… 20 Recommendation 12. ……………………………………………………………………………………………… 21 The accessibility of hearing services, including in rural and remote areas ……… 21 Recognition of some people with deafblindness as belonging to a culturally and linguistically different community, and implications for access to information ………………………………………………………………………………………………………………. 21 Recommendation 13. ……………………………………………………………………………………………… 21 The principle of choice of hearing service provider ……………………………………………… 22 Workforce development …………………………………………………………………………………………. 22 Recommendation 14. ……………………………………………………………………………………………… 22 That a two pronged approach is utilised to address the gross lack of trained skilled staff to provide services to people with deafblindness. ………………………. 22

Specific training in deafblindness must be made available for service providers to develop workforce capacity and improve the current quantity and quality of services for people with deafblindness. …………………………………….. 22
Inclusion of consultation from a skilled experienced deafblind consultant in the NDIS plans of people with deafblindness is imperative to ensure improved access to and benefit from other services such as therapy, education and employment. This will ultimately ensure a considerably more

cost effective service as time and effort will not be wasted in working out how to meet the needs of the person with deafblindness. ……………………………… 22 The liaison with key stakeholders in the design of NDIS hearing services, particularly in the development of reference packages ………………………………………. 22 Recommendation 15. ……………………………………………………………………………………………… 22 Investment in research and innovation in hearing services ……………………………….. 23 Recommendation 16. ……………………………………………………………………………………………… 23 REFERENCES …………………………………………………………………………………………………………………… 24

RECOMMENDATIONS

Recommendation 1. That any person under the age of 65 with combined permanent impairment (after correction by glasses)of both vision and hearing, regardless of severity, including all those with diagnoses of Usher syndrome or CHARGE syndrome, be deemed eligible for services under the National Disability Insurance Scheme.

Recommendation 2. That the National Disability Insurance Agency keep a register of service providers with skills and experience in deafblindness to provide to families in order to increase timeliness of appropriate and holistic intervention services

Recommendation 3. That the National Disability Insurance Agency recognise and address the need for staff development and capacity building to increase the quality and efficacy of intervention services delivered, by supporting the delivery of evidence based training in service delivery to people with deafblindness.

Recommendation 4. That people with deafblindness are prioritised for receipt of hearing aids and cochlear implants as the impact of these devices on the recipient’s communication access is considerably greater than those with a single sensory impairment.

plan of any person with deafblindness whose primary communication method is sign language. It is imperative that people with deafblindness who require Auslan interpreters receive more interpreting hours than those without vision impairments, as communication is generally slower and more communication break downs occur when information is received through the tactile mode, or through visual grame or close-range signing.

Recommendation 6. That the National Disability Insurance Agency needs to address the need for workforce development required to increase the numbers of trained skilled Auslan interpreters who can provide communication access to people with deafblindness.

Recommendation 7. That NDIS planners are alerted that any NDIS participant who is identified as deafblind will necessarily require a level of support from a specialist deafblind communication guide to provide appropriate support to ensure full participation and access to the built and social environments, over and above access to interpreter support. A minimum of 312 hours per year support from a skilled deafblind communication guide is recommended.

Recommendation 8. That workforce development and capacity building in the area of 1:1 support for people with deafblindness is undertaken by the NDIA.

Recommendation 9. That people with an intellectual disability, receive annual support to attend vision and hearing assessments.

Recommendation 10. That access to specialist e-communication training be accepted in an NDIS participant with deafblindness’ NDIS plan if their goals include increasing digital literacy, increasing financial digital literacy, increasing social networks, increased access to information (as many people with deafblindness cannot easily access radio, television, and other mainstream print media).

Recommendation 11. That supports required to maintain good mental health be included in the plans of people with deafblindness which would include access to a qualified health professional with experience in deafblindness and the issues related to this disability, access to an Auslan interpreter if required, and access to communication guide support to attend the session where necessary.

Recommendation 12. That people with deafblindness not be excluded from participation in aural rehabilitation programs by developing capacity of service providers who provide aural rehabilitation services to those with hearing impairments through evidence based training in addressing aural rehabilitation needs of those with deafblindness.

Recommendation 13. That the National Disability Insurance Agency ensures all information to participants is provided in their preferred format including via tactile Auslan, and that all NDIS service providers have access to information on how to make information accessible to people with deafblindness.

Recommendation 14. That a two pronged approach is utilised to address the gross lack of trained skilled staff to provide services to people with deafblindness.

Specific training in deafblindness must be made available for service providers to develop workforce capacity and improve the current quantity and quality of services for people with deafblindness.
Inclusion of consultation from a skilled experienced deafblind consultant in the NDIS plans of people with deafblindness is imperative to ensure improved access to and benefit from other services such as therapy, education and employment. This will ultimately ensure a considerably more cost effective service as time and effort will not be wasted in working out how to meet the needs of the person with deafblindness.

Recommendation 15. That the National Disability Insurance Agency make funding available to Deafblind Australia through the tier two funding under Information, Linkages and Capacity building to ensure the sustainability of this representative group in order to ensure people with deafblindness are represented in the process of NDIS design.

Recommendation 16. That the existing services in Victoria and Western Australia which are currently inadequate to support the full extent of needs of people with deafblindness be supported to continue by ensuring Australian’s with deafblindness have access to:

services tailored to meet their needs by ensuring access to deafblind 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.

and that these services are funded in addition to develop resources to upskill other providers.

EXECUTIVE SUMMARY

People with deafblindness remain some of the most marginalised in Australia, with their complex needs being poorly understood and inadequately addressed. While it is envisaged that the National Disability Insurance Scheme will to some extent address current issues experienced by people with deafblindness, unless systemic changes are made to approaches to service delivery to this group, it is likely their needs will not only not be fully addressed, but in some instances current services may diminish.

People with deafblindness require some specific supports to meet even basic daily needs which differ considerably from other disability groups. These supports include use of Auslan interpreters with an understanding of the communication needs of people with deafblindness, including tactile sign language, use of communication guides trained specifically to work with people with deafblindness, and deafblindness consultants to provide input to service providers and community facilities to ensure the access needs of the person with deafblindness are fully understood and addressed. Without these supports people with deafblindness often cannot access medical and therapy services and education and employment settings as well as community services and facilities.

The current disability workforce is poorly equipped to meet the needs of people with deafblindness Even if funding is available, there are inadequate numbers of qualified experienced and trained staff to meet the demands. Workforce development needs to be addressed by the National Disability Insurance Agency if the needs of people with deafblindness are to be addressed effectively.

Access to information and services remains problematic for people with deafblindness due to issues accessing standard print and audiovisual media. These barriers to accessing information go both ways, as it is currently extremely difficult for people with deafblindness to have their needs and perspectives understood by service providers and government agencies due to the complexity of communication needs.

Finally, while innovation, research and development in the area of service provision for people with deafblindness are much needed, unless the current services specifically for people with deafblindness are funded to undertake research and development, it is likely that not only will further research and development be undertaken, but existing best practice models, frameworks and resources will be eroded.

BACKGROUND

Introduction to deafblindness 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”

People with deafblindness will ALL require the provision of hearing services at some stage in their lives, though services for those with the single sensory impairment often do not fully address the needs of, or remain inaccessible to people with deafblindness.

Causes of deafblindness and prevalence The below background information is given regarding prevalence and causes of deafblindness to support recommendations made throughout this submission. While exact prevalence of deafblindness is not known, it was estimated that in 2013, there were 13,700 Australian’s with deafblindness under 60 years old (Dyke, 2013).

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. All individuals with Usher syndrome will fulfil the criteria for acceptance into the National Disability Insurance Scheme given they are born with a hearing impairment and have a progressive vision condition which will significantly impact on their functioning well before the age of 65 years.

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)

Research has shown that prevalence of deafblindness in adults with an intellectual disability is 5% which is 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 National Disability Insurance Scheme. The prevalence of hearing impairment is at least 40 times higher in people with intellectual disability compared with the general population (Carvill, 2001). However, vision and hearing impairments are frequently inadequately diagnosed and poorly addressed in people with intellectual disabilities (Kiani and Miller, 2010).

The prevalence of deaf-blindness is about 1 in 10000 school-age children in the UK (Kiana and Miller, 2010).

Availability of and access to Auslan interpreters Sign language is seen as the main feature that defines any Deaf community. The use of sign language covers a wide range of areas in the everyday life of the Deaf person. It impacts areas where language is an essential tool in the life of a person, ranging from family life through to media and telecommunications, entertainment and including education, employment, community access and inclusion. Auslan is the recognised language of the Australian Deaf Community, it is a visual spatial language represented through hand movements known as “signs”, facial expression and body language. Auslan has its own syntax, grammatical structure and word order which is different to that of English and fulfils all the criteria of natural language, Auslan is not a universal language. It is unique to Australia, though it does share similarities to some other signed languages around the world.

Auslan was recognised by the Australian Government as a ‘community language other than English” and as the preferred language of the Deaf community over 20 years ago. The Australian Government has also recognised that access to interpreters is a fundamental need for Deaf people to be able to participate in society and avoid the negative impacts and costs of isolation from community life (Access Economics Report, 2008). Access to Auslan interpreting is fundamental to the ongoing

participation and inclusion in community for users of this language. Without access to a NAATI (National Accreditation Authority for Translators and Interpreters Ltd) accredited, professional interpreting services Deaf people will experience isolation and marginalisation as they are unable to take part or benefit from opportunities that are routinely afforded to other members of the community. Without access to interpreters the experiences of Deaf people are commensurate with the wheelchair user who faces a flight of stairs and no ramp.

“Deaf people should not be limited to the settings that they can access interpreting services for. They should be able to watch their son’s soccer presentation and have access to the information being spoken, or see their daughter in a play and understand what the audience is laughing about….” Victorian Council of Deaf People Report Pg. 7, 2008.

Deaf people’s right to use Auslan in their everyday lives is reflected in a range of national and international laws and conventions. This includes the Australian ratified Convention on the Rights of People with Disabilities (United Nations 2008). The UN convention affirms the right for Deaf people to access Auslan interpreting under the following general principles: non-discrimination; full and effective participation and inclusion in society; respect for difference; equal opportunity; and accessibility. The Convention also requires that all parties “take appropriate measures to ensure that persons with disabilities can exercise the right to freedom of expression and opinion…..on an equal; basis with others through all forms of communication of their choice…..including by……accepting and facilitating the use of sign languages (United Nations, 2008). The Disability Discrimination Act states that providing an interpreting service to a Deaf person is not the only consideration but also that the provision of an inappropriately qualified interpreter can ultimately inhibit the communication process and decrease the level of participation

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Access to provision of interpreting services in Australia is historically limited to workplace, education and health. But there are significant changes in this area currently with the introduction by the Federal Government of the NDIS. All medical interpreting costs need to be included in an individual’s NDIS plan. Medical Interpreting will no longer be funded under NABS the National Auslan Interpreter Booking Payment Service. These costs (medical and therapy appointments) will need to be predicted and included in each individuals NDIS plan. The lack of provisions of medical/community interpreting is identified as a barrier, a major hurdle which does not enable Auslan users’ access to everyday needs nor allow them to play significant, socially valued roles in

community participation. Without access to qualified interpreters Deaf/Deafblind people will not be able to fully access medical, therapy and community services putting their own health and goal attainment at risk.

What is interpreting? Interpreting is the act of transferring a message from one language to another, in this case from Auslan to English and vice versa utilizing ones linguistic and cultural knowledge in both languages.

However, simply knowing both Auslan and English does not qualify a person as an interpreter. Interpreters are professional qualified in a highly specialized field. Interpreters work in a variety of settings and situations, many of whom have additional skills and qualifications in specialized areas (i.e. Deafblind interpreting)

Auslan Interpreters accredited by the National Accreditation Authority for Translators and Interpreters (NAATI), as are all language interpreters in

Australia. The West Australian Health Language Services Policy, 2008

defines competent translators and interpreters as: those who adhere to a professional Code of Ethics for Practitioners incorporating the principles of impartiality and confidentiality and performance that is accurate and faithful and who meet at least one of the following criteria:

National Accreditation Authority for Translators and Interpreters (NAATI) accredited, which can be achieved by passing a NAATI test; or by successfully completing a course of studies at an Australian Institution approved by NAATI; or by providing evidence of specialised qualification in translating and or interpreting obtained from a recognised training institution outside Australia.
Obtained a formal qualification in interpreting or translating from an accredited tertiary institution

The role of the interpreter is to: facilitate communication between two parties who do not share the same language. The interpreter will sign what is spoken and speak what is signed conveying meaning and intent. The interpreter will not add, embellish or delete information. The only time the interpreter should be involved in the discussion is when a word or phrase needs to be clarified from either the Deaf or hearing persons. Interpreters are bound by a code of ethics that, among other things, stipulates that all content of an assignment is confidential.

RESPONSE TO TERMS OF REFERENCE

The eligibility criteria for determining access to, and service needs of, deaf and hearing impaired people under the NDIS Due to the heterogeneity of people with deafblindness, service providers commonly do not recognise the complexity of the challenges posed by a combined vision and hearing loss, and typically will focus on one aspect of the disability e.g vision OR hearing, or if there are additional disabilities (which is common) these may take priority over addressing the needs of a combined vision and hearing loss. For this reason people with deafblindness often receive inappropriate, inadequate or complete lack of services. This is particularly common when there is no additional cognitive or physical disability and in a familiar or well regulated or structured environment, people appear to function without limitation. E.g. meeting a person in a quiet office for a planning meeting gives no clear indication of the challenges the individual would face in navigating a new environment, the fatigue experienced from extra concentration required to manage very basic day to day tasks, and isolation and frustration experienced on a daily basis due to communication breakdowns. Even those people with mild impairments of both vision and hearing, will experience significantly more challenges than a person with a single sensory disability.

Delays in receiving services, with particular emphasis on early intervention services Timely access to appropriate intervention services Early intervention is imperative for children with dual sensory impairments, as all aspects of development are affected by combined vision and hearing loss. While there may not be major delays in receiving services, there are often delays in finding suitably skilled and experienced staff who understand the complexity of dual sensory loss. A two pronged approach is suggested to address this issue being 1. that families have access to information about where to find practitioners with skills and knowledge in working with children with deafblindness, and also that training is made available to develop skills of allied health professionals

and other service providers in meeting the needs of children with deafblindness. It is important to note that many families will not use the term “deafblindness” but are more likely to use dual sensory impairment or combined vision and hearing impairment.

Provision of hearing aids and cochlear implants Currently 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.

The adequacy of funding for hearing services under the NDIS A number of highly specialised services are required for people with deafblindness to access the most basic aspects of daily life. It is imperative that these are included in the plans of people with

deafblindness in order for them to achieve the outcomes of their sighted and hearing peers.

Auslan interpreting 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 for Australians with deafblindness. There are currently inadequate numbers of Auslan interpreters trained and skilled in deafblind communication methods and this is more pronounced in regional, rural and remote areas. Accessing interpreters remotely via videoconferencing facilities is not an option for those who use tactile communication methods.

With the changes to the National Auslan Booking Service (NABS) funding and the provision of medical/therapy interpreting services it is even more important for Auslan users to have appropriate access to medical and therapy interpreting to facilitate communication and understanding and ensure that they are safe, well and able to access their human right to good medical care.

It is important to note that interpreting for a person with deafblindness is often slower than for a person who is Deaf due to the need to either receive the signs visually, but a little slower to adjust for the vision impairment or tactually which requires regular interpreter swaps as well as breaks.

Recommendation 5. That adequate levels of interpreting need to be included in NDIS plans of participants with deafblindness who require interpreters to access medical, therapy, and employment services, education, employment (paid and voluntary), and access to community forums and meetings. A minimum of 200 hours of interpreting per year should be included in the plan of any person with deafblindness whose primary communication method is sign language. It is imperative that people with deafblindness who require Auslan interpreters receive more interpreting hours than those without vision impairments, as communication is generally slower and more communication break downs occur when information is received through the tactile mode, or through visual grame or close-range signing.

Need for 1:1 support from specialist deafblind communication guides Studies have demonstrated the use of services by those who are Deafblind differ significantly from those of the general population (Olson, 2004). The role of the communication guide is to be the eyes and the ears for people who are both blind and deaf (George Brown College, n.d.; Hammer & Carlson, 1996; Sense, 2012a). This support is to be the link to the world for a person with deafblindness and provide one-to-one communication, environmental information, and sighted guide. They provide practical help with everyday tasks and access to community services such as shopping, attending recreational activities, attending appointments, writing letters, and reading mail. Support can also be provided from communication guides to enable Deafblind people to make their own decisions and choices by providing information in a format they can understand. The role of this specialised support is very complex. They must constantly observe and interpret the behaviour of individuals whom they support to determine what information is needed, the best way to convey it, and if it has been clearly received (Olson, 2004). They work with the person with deafblindness in informal settings (Royal National Institute for the Deaf UK, n.d.) and they are not a replacement for interpreter services (Hammer & Carlson, 1996).

Communication guides are support workers trained to work specifically with Deafblind clients their role includes:

Facilitating communication in the preferred communication mode
Sighted guide
Facilitating access to information
Facilitating inclusion/access to recreational/social/community activities
Facilitating access to public transport
Providing visual and auditory information
Providing environmental information
Assistance with shopping
Attending appointments
Assisting with environmental modifications in the home
Practical help with everyday tasks A Communication guide/support worker does NOT:
Provide personal care
Run errands without the deafblind person
Teach
Provide formal interpreting 16

Ask personal questions/give an opinion if not asked
Make decisions for the deafblind person
Provide counselling for the deafblind person It is also important to note that even if someone knows some sign language or is in fact fluent in Auslan, this does not mean they are capable of accurately and appropriately interpreting from Auslan to English and vice versa. Interpreting from one language into another is a specialized skill that is not automatically acquired just because one knows two languages. It is also important to note that family, friends and others providing informal supports to a person with a disability should not be relied on to replace the support services that are required by the person with a disability to interact with the world. To do so has the potential to impact negatively on relationships, confidence, independence and access.

If a signing Deafblind participant’s goals include maintaining independence, linking in with peer support, joining a club or participating in a local community activity, keeping fit, health and well-being or having more opportunities to socialise, it is “reasonable and necessary” to have support facilitating communication in their first language.

Research into the mental health and well-being of Deaf/Deafblind people indicates prevalence of mental illness four times that of non-Deaf (i.e. hearing) counterparts. Denial of language and access is a significant contributor that ensures that the cycles of mental illness and marginalisation are never broken (AFDS 2005; Tass, 2010). Measures that improve communication, inclusion and minimize isolation can not only improve the quality of life for the Deafblind person but also have savings systemically to health and social care funding.

Currently there is extremely limited training for people in this specialised role with the only training program specifically for deafblind communication guides being conducted in Perth, WA. In other States, people with a reasonable level of Auslan skill tend to learn the other components of the job while on the job without prior training. Other countries such as the United States, Canada and the United Kingdom recognise the need for training for deafblind communication guides and ensure these staff receive adequate training in different deafblind specific communication methods, sighted guide and providing visual and auditory information.

Recommendation 7. That NDIS planners are alerted that any NDIS participant who is identified as deafblind will necessarily require a level of support from a specialist

deafblind communication guide to provide appropriate support to ensure full participation and access to the built and social environments, over and above access to interpreter support. A minimum for 312 hrs per year support from a skilled deafblind communication guide is recommended.

Recommendation 8. That workforce development and capacity building in the area of 1:1 support for people with deafblindness is undertaken by the NDIA.

Recommendation 9. That people with an intellectual disability, receive annual support to attend vision and hearing assessments.

Access to specialist Deafblind Consultant Services

Deafblind Consultants are experienced allied health professionals with specific training and expertise relating to people living with deafblindness (congenital and acquired). Deafblind Consultants assess, plan and develop programs relevant to the needs and aspirations of the person that is deafblind. In the UK and Denmark it is recommended that as soon as an initial assessment identifies that a person is deafblind, Local Government Authorities should arrange a specialist assessment to identify their communication abilities, requirements for accessing one to one human contact, level of social interaction, any support required with mobility, assistive technology that may be beneficial and the need for any rehabilitation services. They also recommend that the assessment be conducted by a Deafblind Specialist/Consultant and the assessment should take into account the current and future needs of that person as it is easier for a person to learn alternative forms of communication before their deafblindness has deteriorated to the point where they are no longer able to use their preferred method of communication.

Deafblind Consultants act as specialist advisors to other health professionals, support staff, caregivers, external agencies and local community as required, to ensure the communication, behavioural, psychosocial, equipment and mobility needs are meet for clients who are deafblind. Deafblind Consultants facilitate informal and formal groups where appropriate to better meet client outcomes; this is frequently in a group/peer situation and may include peer support, mentoring and information exchange. Deafblind Consultants participate in client individual service plans, case conferences and therapy meetings. They also develop resources necessary to meet the client specific communication needs, along with providing individually tailored training to family and support workers in these communication needs/modes to deliver the plans. Deafblind Consultants also provide specialised training to family, direct care workers, teaching staff and to therapy staff working

with people who are deafblind. The team and the service they provide play an integral part in the lives of people living with deafblindness.

Ensuring Deafblind Consultants are included in the plans of NDIS participants with deafblindness, will ultimately save considerable time, money and frustration as communication breakdowns with other service providers are minimised and capacity of service providers to effectively work with people with deafblindness is built by the Deafblind Consultant.

Deafblind consultants provide consultative, systemic information, advice and resources while deafblind communication guides provide practical 1:1 support in order to mediate the day to day or week to week access to the built and social environment.

Recommendation 9 That NDIS planners are alerted that any NDIS participant who is identified as deafblind will necessarily require a level of support from a specialist deafblind consultant to provide consultation to those service providers, education and employment settings, community facilities, and social networks to ensure systems and strategies are in place to ensure maximum engagement and participation of the person with deafblindness. A minimum of 48 hour per year should be included in the plans of people with deafblindness.

Access to e-communication and development of digital literacy and digital financial literacy of people with deafblindness People with deafblindness can benefit significantly from training in access to e-communication technology. Able Link, an e-communication service specifically for people with deafblindness based in Melbourne, 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.

People with deafblindness are not able to easily access mainstream training in e-communication technology, largely because of a lack of understanding by mainstream service providers about adaptive technology such as the use of voice over and other screen reading

applications, braille output devices and screen enlarging software. This results in people with deafblindness not fully accessing e-communication technology as widely as the rest of the population and compounds their isolation, frustration and dependence on human support for communication banking and shopping.

Mental health services People with deafblindness experience considerable issues in communication resulting in isolation, anxiety, frustration and depression (Miner, 96, and Australian Deafblind Council, 2010). While technologies can help to reduce the negative impacts of hearing impairment, there is also a need for people with deafblindness to be able to access timely support from skilled counsellors (ideally who have an understanding of some of the implications of deafblindness), peer support, programs aimed at addressing mental health issues and aural rehabilitation programs. Many of the mental health issues experienced by people with deafblindness are a direct result of their disability and so addressing these issues must be seen as within the role of the NDIS to address rather than being within the jurisdiction of government health departments.

Access to aural rehabilitation 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 deafblindness 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.

The accessibility of hearing services, including in rural and remote areas Recognition of some people with deafblindness as belonging to a culturally and linguistically different community, and implications for access to information 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.

The principle of choice of hearing service provider Workforce development One of the greatest issues facing NDIS participants with deafblindness is the lack of staff and services with a knowledge and understanding of the complex issues experienced by people with deafblindness and how best to address these. Thus they have extremely limited choice. This includes staff and service providers across all areas including but not limited to support workers, therapists, case coordinators, NDIS planners, Local Area Coordinators, education and employment services, advocacy and legal services.

Recommendation 14. That a two pronged approach is utilised to address the gross lack of trained skilled staff to provide services to people with deafblindness.

Specific training in deafblindness must be made available for service providers to develop workforce capacity and improve the current quantity and quality of services for people with deafblindness.
Inclusion of consultation from a skilled experienced deafblind consultant in the NDIS plans of people with deafblindness is imperative to ensure improved access to and benefit from other services such as therapy, education and employment. This will ultimately ensure a considerably more cost effective service as time and effort will not be wasted in working out how to meet the needs of the person with deafblindness.

The liaison with key stakeholders in the design of NDIS hearing services, particularly in the development of reference packages There is currently only one national body which represents the needs of people with deafblindness in Australia; Deafblind Australia. Deafblind Australia currently receives no government funding, and it dependent on funding from the service organisation Able Australia to fund the executive officer’s position. The voice of people with deafblindness is largely unheard there remains a need for increased representation of people with deafblindness regarding the design of NDIS services.

Investment in research and innovation in hearing services There is currently significant need for research and innovation in the provision of high quality effective services to people with deafblindness.

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 coordination, and accommodation) only available in Victoria and Western Australia, and to a much lesser extent in New South Wales.

It is only after service providers develop experience over time that they develop deeper understanding of key issues and areas requiring further research and development, as is evident by the research and development of resources by Senses Australia and Able Australia. Funding is required in addition to provision of services in order to undertake research and resource development, and it is those working in the area of deafblindness who are best placed to undertake these innovations.

Recommendation 16. The existing services in Victoria and Western Australia which are currently inadequate to support the full extent of needs of people with deafblindness be supported to continue by ensuring Australian’s with deafblindness have access to

services tailored to meet their needs by ensuring access to deafblind 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.

and that these services are funded in addition to develop resources to upskill other providers.

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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

ASLIA (Australian Sign Language Interpreters Association) Victoria: Access for Deaf People in Victoria: Why Auslan interpreting matters http://www.asliavic.com.au/

Australian Deafblind Council (ADBC), (2010) Submission: Submission:

Productivity Commission Inquiry into Long Term Disability Care and

Support Scheme

Australian Federation of Deaf Societies (AFDS), (2005) Response to inquiry into the provision of mental health in Australia

Australian Government (2011): National Disability Strategy 2010- 2020

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www.deafau.org.au/info/policy_auslan.php

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