Submission 60 — Deaf Services — NDIS Planning | External submission

Joint Standing Committee on the National Disability

Insurance Scheme: Planning

Deaf Services Ltd

September 2019

915 Ipswich Rd

Moorooka Queensland, 4105

Background

Deaf Services

Deaf Services is a not for profit organisation working with the community to enhance services and programs that benefit Deaf or hard-of-hearing adults and children. Supports and services cover the entire lifespan:

 Early intervention  Lifestyle support service (in people’s homes and communities)  Community Engagement and Development  Education service - accredited as an RTO provider and unaccredited community courses and leading provider of Auslan at home a family and person centred approach to Auslan acquisition.  Language services including Auslan interpreting (online and onsite), CALD interpreting and Translating, and  Ageing well service.

Deaf Services is a prominent end-to-end service provider, advocate and leader for Deaf or hard-of hearing community members across all ages with a vision of our cohort of participants being empowered, connecting and achieving their goals.

We are a provider of NDIS services and also deliver State virtual information and referral services. We have received feedback and questions that have assisted us in deepening our understanding of planning issues for participants and their families through all of our service delivery areas.

Terminology

Deaf Australia operates a terminology policy that was adopted by members in 20101. For the purposes of this paper Deaf Services adopts these definitions also:

 deaf: all Deaf and hard of hearing groups at once  Deaf: culturally Deaf people who use Auslan and identify with the Deaf community  hard of hearing: people whose primary communication mode is speech

An additional concept discussed in this paper is deafhood which is the process of actualising deaf identity.2 Auslan is Australian Sign Language which is the language of the Deaf community in Australia1.

The following response to the Joint Standing Committee on NDIS Planning, responds to the terms of reference with a focus on Deaf and hard of hearing adults and children.

1 Deaf Australia Inc. (2016). Terminology. Accessed from: http://www.deafau.org.au/info/terminology.php 2 Ladd, P. (2003). Understanding deaf culture: In search of deafhood. Multilingual Matters.

Understanding Deaf Culture

People who are Deaf identify as part of a community of Auslan users across Australia. Deaf communities have a distinct culture embedded in language in similar ways people from non-English speaking (NES) backgrounds have their own cultural identity. Interpreting is a Deaf person’s ramp, Auslan is the wheelchair.

Information Access and Deafness

Literacy levels can be highly variable amongst Deaf people. It should never be assumed that written English is a reliable method of sharing information. Much of the information available in the community is given in English (orally or print) this is not always accessible. For Deaf people using Auslan, access to information through a qualified interpreter or direct Auslan communication is preferred. Typically, hearing-Deaf interactions will require more questioning and probing than expected from a hearing-hearing interaction. Deaf people do not have access to ‘incidental learning’ that hearing people do (i.e. passive exposure like overhearing conversations and media broadcasts) and so do not have the same exposure to both content and terminology that hearing people have.

Deafness and the NDIS Many deaf people may not see the relevance of a disability insurance scheme as they do not use ‘disability’ to describe their deafness, instead identify as a cultural linguistic minority. The relevance of the NDIS to their lives can be overlooked and they may miss the opportunities to ask for the support they need or those who access the NDIS. The primary issues are interpreting, language acquisition and for many, access to coordination and service system navigation. A level of Assistive technology may also be required. Additionally, people may not ask for interpreting as this has previously been funded elsewhere (e.g. NABS for medical appointments)

Language Acquisition and Early Intervention

 Children need access to individualised learning to match their growing needs and changes  Deaf people who are not provided with a sign language early in their development are at risk of linguistic deprivation; they may never be fluent in any language, and they may have deficits in cognitive activities that rely on a firm foundation in a first language and are often socially and emotionally isolated.  Language acquisition for deaf children needs to consider ALL of the pathways including aural and Auslan. Sound is not a language. The same brain areas for processing meaning are activated if a person speaks English or signs.  95% of Deaf children are born to hearing families. Most hearing families with Deaf members do not sign. Not hearing spoken language and not being able to sound out words makes it more difficult to learn written English. Additionally as Deaf people are not hearing the language being spoken on a day to day basis the grammar of English is not constantly being reinforced in the way it is for hearing people. The grammar and syntax of Auslan is vastly different, Auslan is a 3 dimensional, spacial language.

Response to Terms of Reference

A. the experience, expertise and qualifications of planners Deaf Services, through feedback and direct involvement with clients has seen a range of issues relating to the expertise, quality and subsequent skill gaps of the NDIS planners.

Although we have noticed some improvements in areas where we have been able to provide Deafness Awareness Training, the following are examples of where we see inexperienced planners making assumptions about the needs of people who identify as culturally Deaf. This is not about qualifications of planners, rather more about understanding what the needs of a Deaf person may be. Section B explains these complexities a little more and the impact on Deaf participants.

In brief some issues Deaf Services Limited encountered with the planning experience include but are not limited to:

 Interpreters are not booked for planning conversations.  Even when an interpreter is booked not enough time is provided to allow the translation and unpacking of complex NDIS information.  Deaf people have reported that at the beginning of the planning meeting the first comment is “I have never met a Hearing Impaired person before”. Hearing Impaired is considered offensive to most Deaf people, implying a deficit or lack of. This causes instant concern for Deaf participants, highlighting the Planner, LAC or ECEI Access Partner know nothing of Deaf people as they have never meet a Deaf person and have referred to them by a label that does not honour the positives of being a Deaf person and that which they are proud of.  Many planning questions are not culturally appropriate and that many Deaf people struggle to understand the subtlety of the questions even via an Auslan interpreter.  Planners believing hearing aids will allow a Deaf person to hear and understand the spoken word. Hearing aids only amplifying what is already distorted sound, not make speech sound clearer. In the same way turning up the volume of a radio slightly off the station does not make the dialogue clearer.  Planners unaware that the removal of the processor for a cochlear means the person is still profoundly Deaf.  Planners do not always understand the “Hearing pathway” and inadequately support navigation particularly for children through it.  Some planners, when supporting a child has cochlear implants, do not see the need for speech therapy or Auslan.

B. The ability of planners to understand and address complex needs;

Deafness is a complex area of support in the NDIS and the following section explore some of the issues we have noticed since the NDIS commenced.

Avoiding Linguistic neglect of Deaf Children

Many ECEI access partners are not aware that there are a whole range of pathways of early intervention for deaf children and that opting for only an oral pathway, can be risky. Questions arise as to if the child is delayed in an oral pathway how long do we wait before introducing Auslan? Lip reading is difficult and requires lots of guess work, at best in the most optimal setting and reading the clearest speaker only 30% can be read on the lips by even the most fluent lip reader. Missed early language acquisition is difficult to catch up on. Delayed language or no common/shared language results in a direct reduction in capacity and correlates with mental health challenges such as isolation, depression and anxiety. A holistic transdisciplinary approach ensures language acquisition occurs at the same rate it does for hearing children whether this be in Auslan or spoken English. Auslan can be accessed before speech and therefore provides a foundation. Some hearing families are learning Auslan to communicate with their hearing infants. Using one language to support the learning of another provides context for the Deaf child. Deaf Tutors and immersion programs provide Deaf children with positive role models and reduce a sense of isolation.

For the Deaf child using Auslan as the mode of language acquisition, their parents also need to know and use Auslan in order that the Deaf child learns language at the rate of their hearing peers. The parents’ knowledge of Auslan needs to be at the same rate or ahead of their Auslan-using child’s in order to informally educate their children and develop holistic relationships. Auslan in the home provides both parents the opportunity to learn vocabulary and grammar in a setting at time that suits them. It also affords the family an environment where they are comfortable and have the opportunity to ask lots of questions.

A hearing child accesses so much more language informally, listening to the TV, radio, walking down the street, overhearing family conversations; the Deaf child is disadvantaged by not accessing this information. Auslan may be required by extended family, sporting team mates and friends, this helps the Deaf child deepen relationships, improve language acquisition (vocabulary) in a variety of settings, gives the child a sense of access and normalises their deafness. This also assists the Deaf child to increases access to informal language and to understand social cues.

Learning Auslan: Language Acquisition

Auslan at home is a flexible program of teaching Auslan (and Deaf Culture Awareness) to participants and their key supporters, friends and family. It provides necessary early access to language ensuring language acquisition occurs at the same rate as it does for hearing children. It

provides communication in context of the home environment on a fee for service basis at a reasonable cost. It reduces social isolation and increases connection, social skills, and mental wellbeing.

Learning individualised Auslan can only be funded under consumables in Core supports and is often missing from plans or at an inadequate level even where the goal is communication with family and friends. Here are links to two stories on our website outlining benefits of Auslan at home for unique needs of the participant - Oliver’s Story and Eva’s Story

“NDIS has funded me to have an Auslan Tutor which has helped connect my family and I with understanding my language and my culture.”

Many adults due to language deprivation early in their life (e.g. valuable education hours being consumed by a push to learn spoken English) have sought to learn and develop their Auslan skills later in the life and the NDIS has provided an excellent mechanism for that. NDIS planners do not always understand the importance of Auslan skill acquisition through an individualised program for children or adults.

Another learning and practice modality is Auslan immersion programs. Many families like to participate in the Auslan Immersion Programs and Family Auslan only weekend. It is for families to come together and network and for the kids to do activities with each other and with the family with voice off, full Auslan all weekend. Immersion style weekend-long residential experience starting on a Friday evening and concluding at lunch time on the Sunday. Participants use the language throughout the weekend to participate in activities, communicate at meal times and to interact socially with other campers, AOW staff and volunteers. Planners are not always aware of the importance of these opportunities to come together with peers, practise, and be part of a community (parent to parent, sibling to sibling and Deaf child to Deaf child).

We have had planners suggest to clients of Deaf Services that language acquisition for Auslan could be attained via You Tube. YouTube cannot teach the grammar, all the nuances of the language or particularly the cultural aspects. A Deaf tutor provides positive role modelling, allowing the Deaf child to see that Deaf people can grow up to be successful people. Without a Deaf tutor or immersion camps there is potential for the Deaf child to never see a deaf adult. There have been cases of Deaf children believing they would die once reaching puberty due to having never seen a Deaf adult.

Interpreting

Interpreting is generally accepted and applied to contemporary plans. Sometimes plans have inadequate levels of interpreting as planners hold an assumption that interpreters may only be needed for occasional meetings such as with a GP appointment, when in fact Deaf Participants require interpreters in many settings such as Private Medical (Previously NABS), Real Estates, Banks,

child’s GP appointments. Sons soccer match, Science Expo, International Airport check in. Bunnings,

Telstra. In fact in all aspect of life a deaf person may be required to communicate with another who is unable to use Auslan.

There are also many cases where interpreting has not been offered to the Deaf child, with Planners stating the parents can interpret for them.

Why a child benefits from access to interpreter A child benefits from having access to interpreters as it provides incidental learning, familiarises the child with the role of an interpreter, provides access to additional vocabulary and educates the child on how to articulate and conduct interactions with hearing people.

Interpreting requires a time lag and may mean the parent misses the opportunity to participate in conversation due to time lags. Additionally a parent who interprets may not remember all the content of the conversation due to focusing on interpreting the information not retaining it.

A parent who is learning Auslan does not have the speed and vocabulary required to interpret, children may not want their parents to interpret for them. Parents may have a hidden agenda and may filter certain information when interpreting.

Deaf or HoH children can feel very isolated, for example a 12 year old Deaf child believing they would die once reaching puberty, due do not meeting Deaf adults. Accessing an interpreter normalises Deafness in adulthood.

Whilst a young Deaf child may not understand all that is interpreted at a GP appointment, it gives the child more exposure to vocabulary, allows the child to learn how to use an interpreter and reinforces how to conduct such professional interactions by “hearing” how their parents question and respond in such settings (another example of access to incidental learning that hearing children experience constantly throughout the day).

The use of and access to Auslan interpreters at an early age  Emancipates and empowers the Deaf child  Gives the Deaf child an understanding of how to use interpreters and the code of ethics associated  Increases language development  Develops interaction skills  Accelerates incidental learning  Provides the child with an understanding of how to conduct conversations, the nuances of language, cultural ques such as questions can be asked, clarification can be sort  Allows Deaf children to believe they are able to succeed, if they can do it, so can I

Additionally

 Hearing family members may not have the fluency in Auslan to interpret  May not wish to interpret  May have a hidden agenda  The child may not want their parent to interpret for them  If the family member commences to interpret, due to time lags they are no long an active member of the conversation  If family members do interpret they will not remember all of the details of the conversation due to the working memory working hard to interpret the information not remember the information.

Hearing Aids and Cochlear Implants

There are several examples where participants have been advised to keep or get hearing aids or cochlear’s. This is not as easy as it sounds and services the needs of hearing people and not the Deaf person. Some things to note about hearing aids:

 Hearing Aids do not allow a profoundly Deaf person to hear speech but rather only identify environmental sounds  Many Planners do not know that Hearing Aids do not make speech audible for severe and profoundly Deaf people and insist on this or a cochlear as a way forward, or in one case even accusing the person of double dipping if they do have a hearing aid and also require Auslan interpreters (hearing aids are not suitable for many environments).  A cochlear implant to an adult Deaf person does not mean they will be able to hear, process and respond in spoken English overnight. In the same way taking a hearing adult from a sound proof box in China at aged thirty would not make them fluent in Mandarin.  Some children with Cochlear Implants have been denied Auslan at Home altogether. Cochlear implants do not “cure” Deafness, without the processor the person is profoundly Deaf. Having an implant destroys all residual hearing.  If a Deaf person has not worn hearing aids for many years then the neuropathways are no longer there to assist with making out spoken words.  That the cochlear implant to a profoundly deaf person who is pre lingual deaf would not make English accessible as it requires the person to learn the sound of each word and then what the word actually means. To learn the sounds of thousands of individual words, identify and interpret them is incredibly difficult and would require extensive if not excessive speech and auditory training. It potentially leaves the person still not fluent in spoken English or able to understand it. Any person who is implanted loses all residual hearing and without the device is then profoundly deaf.  Many adult profoundly Deaf people who have been implanted as adults often still use Auslan and interpreters as a means of communication which is augmented by the cochlear.

C. the ongoing training and professional development of planners;

Despite many planners receiving Deafness Awareness Training (DAT) in Queensland this training is not national and is not mandatory for planners or Access Partners. An initiative of NDIA Queensland’s State Manager and Deaf Services has been the roll out of Deafness Awareness Training to reduce the need for unscheduled reviews and ensure planners have a clear understanding of what is reasonable and necessary for Deaf Participants.

Comments from attendees including Directors, Assistance Directors, Team Leaders and Planners highlight the validity of Deafness Awareness Training and the need for it to be mandatory nationally and ongoing.

 “the realisation of how important interpreter hours are and that they probably aren’t funding these sufficiently”  “the difference between Auslan and English”  “that not all deaf people are literate”  “a better understanding of the need for 4g communication devices and data for deaf participants in areas were Auslan interpreters do not reside”  “practical examples”… “ well presented”  “the feedback from the training was 100% positive and staff rated it as some of the best training that they have experienced”  “…we are very appreciative of your time and the significant and positive impact this training had on service delivery staff within the agency” - Director, Service Delivery and

Performance

 “the feedback from my staff has been so positive and they have reported now having such an increase in awareness” -Assistant Director, Service Delivery  “undoubtedly the most inspiring, educational training I have received to date. Thank you for investing in our planners” - Team Leader

D. the overall number of planners relative to the demand for plans; The issue for Deaf participants is less about access to planners and more about access to planners who understand Deafness.

E. participant involvement in planning processes and the efficacy of introducing draft plans; Deaf people are often confused about what to do after they get a plan due to the aforementioned issues with literacy. Parents frequently experience inadequacy in plans that need to be updated and reviewed. We support the need for plans not to be made live until going over the final draft plan with the participant so as to reduce unscheduled reviews and ensure participants are satisfied beforehand.

Families in complex situations, for example, separated households with shared care, multiple children at varying ages are under incredible strain to have their planning meetings and then implement their plans. ONE planner for all their children should be offered to alleviate this strain. Navigating so many systems and different pathways is confusing and time consuming. Creating more burden on family systems that are already under incredible pressure.

F. G. H. and I. terms of reference response  f. the incidence, severity and impact of plan gaps;  g. the reassessment process, including the incidence and impact of funding changes;  h. the review process and means to streamline it;  the incidence of appeals to the AAT and possible measures to reduce the number;

What we also know is that reviews are taking many months longer than needed, leaving participants uncertain and stressed. Appeals are lengthy and exhausting for participants, draft plans presented to participants prior to making the plan live would alleviate the need for many tribunal cases.

Additionally many reports are required to support the participant’s claims of Reasonable and Necessary in Tribunal, often funds are not in the current plan to pay for clinical reports.

J. the circumstances in which plans could be automatically rolled-over; Deaf adults who have stable needs regarding interpreting, particularly after technology needs are met, could easily have plan automatically rolled over as long as change of circumstance information is clearly communicated and altered during the life of the plan.

K. the circumstances in which longer plans could be introduced; Deaf adults who have stable needs regarding interpreting, particularly after technology needs are met, could easily have plans that run over a longer period of time as long as change of circumstance information is clearly communicated and altered during the life of the plan.

L. the adequacy of the planning process for rural and regional participants; and A lack of awareness by Planners and Access Partners that communication device’s with 4G capacity including Data in plans is essential for Deaf participant, so as to access interpreters through Video Remote Interpreting (VRI) is problematic. There are cases where some participants reside almost 900km from the nearest interpreter making VRI the only option.

Recommendations

Standardised consistent centralised Deafness Awareness Training be offered nationally to all Planners, LAC’s and Access Partners to increase their competence and skills in understanding the needs of Deaf participants.
The Deaf pathway (Hearing pathway) makes it clear to planners that both an oral/aural and Auslan pathway are valid and viable for a participant in terms of language acquisition (e.g. English and Auslan) and also access to interpreter and hearing aids in the same plan. This should not be communicated as double dipping to a participant.
Consumables for Auslan or signed English training (03_089_0121_1_1) is a standard offering for all children, rather than having to advocate for it.
Consumables for Interpreting (03_090_0121_1_1) is a standard offering for Auslan communicating children, rather than individually advocating for it.
Plans are not made live until going over the final draft plan with the participant so as to reduce unscheduled reviews.
Funding to support participants obtain necessary evidence of need from relevant qualified professionals to support reviews and appeals process.
Awareness by Planners and Access Partners that communication device’s with 4G/5G capacity including Data in plans is essential for Deaf participant who live remotely and need to access interpreters via video conferencing facilities.
Families be offered ONE planner for all their children. Navigating so many systems and different pathways is confusing and time consuming. Creating more burden on family systems.