NDIS access pathway issues for people with hearing loss and deafblindness | External submission

Submission to the

Joint Standing Committee on the National

Disability Insurance Scheme (NDIS)

INQUIRY INTO NDIS PLANNING

5 September 2019

JOINT STANDING COMMITTEE ON THE NATIONAL DISABILITY INSURANCE

SCHEME (NDIS)

INQUIRY INTO NDIS PLANNING AND SUPPORTED INDEPENDENT LIVING

JOINT SUBMISSION FROM DEAFNESS FORUM OF AUSTRALIA, DEAFBLIND

AUSTRALIA, AUDIOLOGY AUSTRALIA, ABLE AUSTRALIA, SENSES AUSTRALIA

AND NEUROSENSORY.

Deafness Forum of Australia and Deafblind Australia’s members with hearing loss and deafblindness have experienced issues with the NDIS Access Pathway and Planning process which will be outlined in this submission. It is anticipated that more issues will arise when existing clients of the Australian Government Hearing Services Program who meet the access criteria for the NDIS, transition to that program on 1 July 2020.

This submission was prepared by Deafness Forum of Australia in collaboration with Deafblind Australia, Audiology Australia, Neurosensory Australia, Able Australia and Senses Australia.

ACCESS TO THE NDIS FOR PEOPLE WITH HEARING LOSS a) Operational guidelines The National Disability Insurance Agency (NDIA) developed operational guidelines to help streamline access to the NDIS for people with hearing loss. The guidelines were intended to provide clarity regarding access. Unfortunately, that has not been the case. It appears the guidelines are not well understood by NDIS staff, professionals working with people with hearing loss or by potential NDIS participants. The inclusion of a degree of hearing loss to distinguish between the levels of evidence required to support the access request has been misinterpreted as the criteria for access. This is causing concern and anxiety among potential participants and hearing services providers and the confusion may be causing people to self-exclude themselves from applying to the NDIS in the mistaken belief that they are not eligible. An education program is needed to correct the misunderstanding and clarify the intent of the guidelines and the correct way to interpret them.

b) Access documentation The amount of documentation required to apply to the NDIS is substantial and overwhelming for both professionals and potential participants. The Access Request Form is a generic form to be used by all applicants regardless of their disability. It is not well designed to capture the impact of a sensory impairment. This can lead to people being unfairly excluded from the NDIS because they are unable to represent the impact of their hearing loss on the form. The NDIS Access Request Supporting Evidence Form which has to be provided along with the Access Request Form is also a generic form. Professionals have been provided with little guidance on how to complete the form for someone with a sensory loss, and they are not clear on what evidence the NDIS needs in order to determine the functional impact of the disability. Professionals find it difficult to complete the form and if the supporting evidence is not

completed appropriately it may lead to the person not being accepted into the NDIS when they should have been. The NDIA needs to provide guidance on completing the forms to both potential participants and professionals.

c) Primary disability The Access Request Form asks for the person’s primary disability. It can be difficult for people with multiple disabilities to nominate a primary disability. It implies that one condition has more impact or is somehow more important than others, whereas for the individual, the presence of more than one disability makes the impact more complex so that it may not be possible to identify a “primary disability”. The disability causing the most impact may change depending on the situation the person is in. Where a child has additional needs, families should not have to nominate a primary disability. Each condition makes the impact on the child and family more complex and the disability causing the most impact may change depending on the stage of development or the situation the child is in.

Nominating a primary disability can mean that the person’s NDIS plan is totally focussed on addressing the needs of that disability whereas the person needs a more holistic approach to be taken to address the overall impact of the multiple disabilities.

Additionally, people with deafblindness are being told that they cannot list deafblindness as the primary disability - they have to elect either hearing or vision impairment. The needs of a person who is deafblind are very different to the needs of a person with a vision or a hearing impairment, so it misrepresents the person’s situation to have to elect either hearing or vision impairment as the primary disability. It may also mean that the person does not receive all of the supports that they need in their NDIS plan if the supports are only addressing the primary disability.

d) Support for vulnerable people The access pathway is complex and confronting. The individual who is applying for the NDIS needs resilience, determination, significant self-advocacy skills and a high level of health literacy. More vulnerable people such as people from culturally and linguistically diverse backgrounds, and people with low literacy or low health literacy levels are at risk of being excluded from accessing the Government funded services and supports they need as they are unable to navigate the system. People in these circumstances need a support worker, and in some cases, a funded interpreter to help them navigate the pathway successfully.

e) Access for children and young adults 0-26 years A streamlined pathway to the NDIS has been developed for children with hearing loss to ensure there are no delays in families receiving the supports they need, such as access to early intervention programs. Hearing Australia as the sole provider of hearing services for children with hearing loss plays a major role in supporting the pathway by liaising with the family and providing the supporting evidence needed by the NDIS. It is not clear how the process will be managed from July 2020 when the in-kind arrangements between the Australian Government

Hearing Services Program and the NDIS cease and audiological services for children and young adults become contestable.

The changes that are to be implemented in July 2020 will impact on the timeliness of audiological services. These services are currently provided outside of the NDIS through in-kind

arrangements with the Australian Government Hearing Services Community Service Obligations

Program. Hearing Australia’s block funding under the Community Service Obligations Program allows it to provide audiological services to children as and when required. Once that arrangement ceases, the hearing rehabilitation program including device fitting will be delayed until the person has their NDIS plan approved which tends to be a lengthy process. Any delay in device fitting is likely to have an adverse impact on a child’s development.

Hearing Australia also has a role in providing independent, balanced advice to families on early intervention programs, technology options and other support services without being influenced by sales targets or commissions. This role is valued by families and needs to continue in some form from July 2020 when the in-kind arrangements cease.

As Hearing Australia has been the sole provider of services to children requiring device fitting for approximately 70 years, it is not clear whether the market would be able to offer the same level of service in the same locations should services become contestable. There is a risk that providers will limit services to areas which are easy to service i.e. urban areas, so that children in rural and remote areas may be left without services or have to travel considerable distances in order to access the expertise they require.

Families need clarity on how hearing services will be delivered from July 2020. This issue has been raised by consumer groups since 2015 when it became apparent that some Australian Government Hearing Services Program clients would transition to the NDIS. It is not clear why the NDIA hasn’t provided information on how hearing services will be provided from July 2020. Parent groups would prefer hearing services to remain with Hearing Australia as sole provider at least for children from birth through to the end of secondary education.

f) Access for adults Adults with a sudden hearing loss need immediate assistance to support their needs. If the hearing loss is such that they require hearing rehabilitation services, they need to be able to access these services without delay. The current waiting times for adults to access the NDIS would leave people with sudden hearing loss unable to function at work or socially. There needs to be a mechanism to give these people priority to access NDIS funded services.

The current in-kind arrangements between the NDIS and the Hearing Services Program are not working well for adults. There is a systemic and documented bias among some NDIS planners to refer all adult clients to Hearing Australia whereas NDIS participants are actually able to choose their provider. Attempts to directly resolve the incorrect information and practices among NDIS planners with the NDIA CEO and senior management team were protracted and left unresolved concerns that client choice is not available and continues to be lessened.

Clients who are aware that they have a choice of provider and who choose not to access services from Hearing Australia under the Community Service Obligations component of the Hearing Services Program may be disadvantaged under current arrangements. These clients are only able to access the services that are approved under the Voucher Program unless the provider delivers the service without appropriate reimbursement. The Voucher Program is designed to meet the needs of people with non-complex hearing rehabilitation needs whereas the needs of most NDIS participants are more complex. Under the Voucher Program, NDIS participants only have access to a limited range of services and devices and they may be seen by a practitioner who does not have the expertise required to provide the rehabilitation services they require. The changes to the in-kind arrangements that will occur in July 2020 should allow these issues to be addressed.

Once the in-kind arrangements with the Australian Government Hearing Services Program cease, current and future NDIS participants will need to have hearing rehabilitation services included in their NDIS plans as well as appropriate assistive technology. They will also need to be able to identify the practitioners with the competencies to deliver the hearing rehabilitation services they need. As this represents a significant change to current arrangements, NDIS staff, particularly planners, will require training to ensure they understand the new supports that will need to be included in plans for people with hearing loss or deafblindness. There also needs to be an assessment of market readiness to provide the services outside of the Australian Government Hearing Services Program where currently Hearing Australia plays a major role in delivering services to adults with complex hearing rehabilitation needs.

g) Increase in age to access Age Pension On 1 July 2017, the qualifying age for the Age Pension increased from 65 years to 65 years and 6 months. The qualifying age increases by 6 months every 2 years, reaching 67 years by 1 July

This change in age criteria for the Age Pension will result in a delay in people being able to access hearing services under the Australian Government Hearing Services Program. Access to the NDIS is limited to people under 65 years so there will eventually be a 2 year period where people aged 65-67 years will not be able to access Government funded hearing services due to their age. The access requirements for the NDIS need to change to allow for the change in qualifying age for the Age Pension.

NDIS PLANNING PROCESS a) Communication with NDIS participants There have been examples of people with hearing loss being told by the NDIS that communication with them must be done by telephone. While some people with hearing loss are able to communicate by telephone, many are not. When the NDIS staff have been asked to use alternative communication methods the person has been told that the contact must be by telephone. This is not acceptable.

The Access Request Form asks the individual to indicate their preferred method of communication. It may be that this information is not being accessed by the people organising the planning meeting or other contacts and consequently they are using an inappropriate method of contacting the individual. If the reason for the contact is to arrange a planning meeting, hearing impaired and Deaf people would find it easier if there was an option to arrange the appointment through an on-line booking process. Also, many hearing impaired and Deaf participants prefer to communicate via SMS. It would be helpful to have a dedicated SMS line to support this method of communication.

There have been instances of participants having planning meetings where they were not fully aware of the decisions being made to quarantine funding to a single provider or agreeing to undertake self-management of their plan. These situations result in confusion, poor or no services being delivered and ultimately a lack of choice and control as the NDIA has not communicated effectively with the participant.

NDIS staff should have a high level of deaf cultural awareness and undertake training to understand the role of the National Relay Service and captions; and training in working with interpreters in order to communicate effectively with participants with significant hearing loss.

b) Timeliness of service The NDIS access process has several steps and each of the steps currently appears to have delays leading to people waiting months if not years to access the scheme.

The time to be notified of registration to the NDIS has been reported to take several months. Similarly, the time to receive an appointment with a planner or an early childhood early intervention partner can take months.

It is unreasonable to have people with hearing loss or deafblindness waiting months to receive the supports they need. These delays leave the individual and providers in a difficult situation. Individuals are left to decide whether to try to fund their supports themselves. Providers cannot be paid retrospectively yet find it difficult to leave a person with a disability without the supports they need due to administrative delays in the NDIS so they are left with the decision of whether to provide assistance without being reimbursed.

The NDIS has performance indicators on the timeliness of service but there do not appear to be any consequences for the NDIS when these timeframes are not met.

c) Family support When a child is diagnosed with hearing loss their family needs access to independent balanced information on all intervention options available from appropriately skilled people. The information needs to be provided in a variety of formats so it is as accessible as possible. Ongoing parental support is needed for emotional wellbeing, as well as support in relation to the child’s hearing loss. The support is needed not just at diagnosis but at every transition point in the child’s life. Families also need access to mentoring and support.

Under the NDIS, it is the role of the NDIS Early Childhood Early Intervention (ECEI) partner to provide the family with unbiased information and link them to services needs to be well informed and provide a timely service. However, this is not always working well. The best practice model for this service, recommended by professionals and parents, is demonstrated by the Family Support Facilitators linked to the newborn hearing screening program in Queensland who meet with the family soon after a hearing loss is diagnosed. Families gain impartial and balanced information on the range of communication options and providers available to them from the family support facilitators. The support workers are trained psychologists or social workers who are able to provide impartial and balanced information and support from birth to 6 years of age, supporting the family on the journey to primary school. The ECEI partners do not have the skills or expertise to undertake these roles. The Family Support Facilitator role is currently State funded but in future needs to be part of the NDIS arrangements.

Families need access to unbiased, independent advice in order to make an informed choice about their child’s early intervention program. They also need advice on what should be included in their child’s NDIS plan. Most parents will not have the knowledge, particularly in the early years, to know what is available and what to ask for during the meetings with the NDIS planner. In some cases it appears that decisions are being made by the NDIS planner rather than the participant or their carer as to what therapies or assistive technology would be appropriate. A family support worker would ensure that the child and their family is well supported through the NDIS, medical, allied health and education pathways that they will need to navigate so they are able to make informed decisions and not have decisions made by others.

The system needs to improve the pathway for children with additional needs and their families and to better support families with several children with different disabilities who may have different NDIS workers for each child and need to meet with a variety of service providers.

d) NDIS Plan With the way that the NDIS planning process is structured there is a risk that participants may not receive adequate funding. The NDIS planning process is very focused on outcomes and goals and requires the participant, or their family and carers, to have a full understanding of their disability and its implications and to be able to articulate these needs to the Planner. Parents of children newly diagnosed with hearing loss are often still coming to terms with the diagnosis and are unlikely to have the knowledge to be able to list the types of supports their child will need. If their child has additional disabilities (30-40% of children with hearing loss will have an additional

disability) it can take several months or years to get a clear understanding of the level of the disability. The ability of the participant to articulate their needs and goals will influence the level of funding that they receive. NDIS participants have indicated that you need to have a clear vision of what outcome you want and be quite assertive during the planning interview. This will place a number of participants at a disadvantage if they are not able to clearly outline their needs or they do not have an advocate to help them with the process. It will be particularly difficult for people who are working through an interpreter. There need to be safeguards in place to ensure that the level of funding is appropriate for the participant’s needs. The process should not solely depend on the individual’s ability to articulate a detailed list of their requirements, particularly if they are not in a position to know what they should ask for even as a minimum. There could be some minimum funding packages that are automatically included in a participant’s plan once they are deemed to be reasonable and necessary. For example, NDIS participants who use Auslan interpreting services could automatically receive a standard level of funding and have the ability to provide evidence for higher levels of funding if needed. Currently the provision of interpreting services seems to vary widely.

It appears that the discussion of what supports to include in an individual’s plan can be heavily influenced by the planner they see. There are cases where the recommendations of the professional who provided the supporting evidence on the functional impact of the hearing loss are not being taken into account leading to the participant having inappropriate supports included in their plan. This varies across planners and locations.

It also appears that the participant does not always see the plan that is submitted for approval so there is no opportunity for them to indicate that the supports that have been included are not appropriate for them until after the plan has been approved and the funding allocated to a support they do not want. It is not uncommon for hearing impaired participants to receive a substantial allowance for Auslan services when they do not communicate in Auslan but listen and hear - their need may be for new or better hearing devices, or captions but these supports have not been funded and participants are not permitted to reallocate the funding in their plan.

Deaf participants – those whose first language is Australian Sign Language (Auslan) - should have their plan provided in both Auslan and English. The current documentation can result in Deaf people not understanding the terminology used or the supports that have been funded. If a Deaf participant requires an Auslan interpreter at their planning meeting the NDIS needs to ensure that the interpreter is arranged well before the meeting to ensure their availability. There is a significant shortage of qualified Auslan interpreters and Deafblind interpreters. Interpreter booking services need appropriate notice to ensure an interpreter can be provided. The notice period also means that meetings cannot be changed at short notice. If an interpreter cannot be made available then the meeting should not proceed.

e) Telepractice NDIS funding should also cover telepractice models of service delivery to facilitate increased and more timely access to hearing services for populations who are unable to access face-to face services due to geographical or other reasons.

e) NDIS plans post 30 June 2020 The Roadmap for Hearing Health1 has as a key priority, “There is a smooth transition for clients from the Hearing Services Program to the NDIS, with a particular focus on vulnerable clients currently receiving services through the CSO component.”

Children

Consumers, particularly parent groups, are very keen for Hearing Australia to be nominated as the sole provider of hearing services for children under the NDIS for reasons of expertise, access and equity, clinical standards and independent advice. Hearing Australia would also act as a safety net to ensure that children did not fall through the gaps. Regardless of whether Hearing Australia remains as the sole provider of hearing services to children with hearing aids, the child’s NDIS plan will in future need to include funding for hearing rehabilitation, assistive technology, repairs, device replacements and batteries. Families will need to be educated on how to advocate for these services to be included in their plans and NDIS planners will need to be educated on these new supports.

The NDIS plans for children post 30 June 2020 will need to fund a hearing and communication program that allows the child and their family to access their paediatric audiologist at regular intervals. The number of appointments needed varies according to the age of the child, the age of onset of the hearing loss and whether the child has other disabilities.

The hearing aids and other assistive technology needs to maximise the child’s residual hearing and also contain appropriate safety features particularly for very young children. The child’s family, carers, teachers and other professionals working with the child need to not only understand how the device functions, but also what to expect from the child when they are wearing their devices. Some of this support is currently provided by the audiologist visiting the child’s school.

The devices need to be replaced at regular intervals due to normal wear and tear or when new technology becomes available that provides significant clinical benefit to the child. Devices also need to be replaced due to loss or damage. This occurs quite regularly for children compared with adults and needs to be factored into the child’s NDIS plan. Funding also needs to be available for batteries and device repairs.

If services do remain with Hearing Australia it is expected that the arrangement would ensure that children are seen by an audiologist with appropriate expertise. If services become contestable then families need a mechanism to easily identify audiologists with the competencies required to provide services to children. These services should not be provided by audiometrists as it would be beyond their scope of practice.

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The funding arrangements will be more complex for children with cochlear implants as their services will be funded partly through Medicare and partly through the NDIS. The initial cochlear implant would be funded as per existing arrangements however replacement speech processors and upgrades to new technology would need to be funded under the NDIS. Cochlear implant replacement processors and upgrades including repairs and replacement parts are currently

funded under the Australian Government Hearing Services Community Services Obligations

Program and administered by Hearing Australia. Once the in-kind arrangements cease, Hearing Australia would no longer have a role in these arrangements and the funding for these items would need to be included in the child’s NDIS plan and they would access these items through their cochlear implant centre. Children with cochlear implants also need some additional assistive technology funded in the NDIS plan such as remote microphones which they would also access via their implant clinic audiologist. While the mapping of the speech processor is covered under Medicare, there would be a need for the child to have some rehabilitation services funded in their NDIS plan such as fitting and review appointments for additional assistive technology.

The hearing rehabilitation program needs to commence as soon as the family are ready and should not be delayed by the NDIS access pathway. Given the NDIS pathway has several steps including an approval process and the current arrangements do not require any approvals, it will be difficult for the new arrangements to match the current system in terms of timeliness and responsiveness. It is critical that families do not experience any delays in accessing the supports their child needs as it could have a detrimental effect on the long term outcomes for the child.

Adults

Once the in-kind arrangements with the Hearing Services Program cease, adults with hearing loss will need to have rehabilitation programs and assistive technology included in their NDIS plans.

Many NDIS participants with hearing loss will require intensive communication programs supported by an appropriate level of technology. They will need to be able to identify the audiologist with the appropriate expertise to provide the clinical services they need. The person’s plan will need to include funding for hearing rehabilitation programs, hearing aids and other assistive technology, device repairs, replacements and batteries as well as other supports required by the participant such as interpreting services, speech pathology and occupational therapy.

The range of hearing supports required by a person with complex hearing rehabilitation needs is currently provided through the Australian Government Hearing Services Community Service Obligations Program. The services and devices provided under the Community Service Obligations Program are vastly different to what is available under the Australian Government Hearing Services Voucher Program so the Voucher Program should not be used as the basis for funding an NDIS plan for a person with hearing loss. It will be critical for NDIS planners to receive advice from the participant’s audiologist and other professionals working with the person

to ensure that the participant’s plan contains sufficient funding for the person to access the clinical services, assistive technology and other supports that the person requires. NDIS participants and NDIS planners will need to be educated on the impact of the changes to NDIS plans that will occur once the in-kind arrangements with the Australian Government Hearing Services Program cease on 30 June 2020.

The hearing rehabilitation program needs to commence as soon as the individual is ready to proceed and should not be delayed by the NDIS access pathway. Improvements will need to be made to the NDIS access pathway to ensure that participants do not experience delays in accessing the services and supports they need.

f) NDIS Plan Reviews Participants who are attending plan reviews are being asked to again produce evidence of their disability as if the participant’s situation had improved since their last plan review. This is time consuming and is not contributing to an improved outcome for the participant or their families and carers. The criteria for accessing the NDIS is that the person has a permanent disability. On this basis it is unlikely to improve. However, it may deteriorate or the person’s circumstances may change such that they need different supports. This is a different conversation and currently the reviews and not being approached on this basis.

g) Knowledge and expertise Potential NDIS participants with hearing loss or deafblindness and their families and carers need information on what the NDIS can do to support their needs, and the information needs to be in a format that makes it accessible. Potential NDIS participants need to be able to include the supports they need in their plan in a streamlined way without having to explain and advocate for even very basic supports.

Participants may not always be aware of the full range of supports available and NDIS planners are not necessarily familiar with the needs of people with hearing loss or deafblindness and may not understand the range of supports that would help the participant achieve their goals. There needs to be mechanisms to ensure that participants do not miss out on supports through lack of knowledge either in themselves or in their planner.

Deafblindness

The level of knowledge of deafblindness is very limited and mostly non-existent among professionals and NDIS staff. People in very vulnerable situations are required to constantly educate and strongly advocate to gain access to the supports they need, and they are expected to do this repeatedly due to the constant changes in Local Area Coordinators (LACs) and planners. This should not be necessary. Action is needed to ensure more streamlined access to support services for people who are deafblind. This will mean educating professionals as well as NDIS staff on the functional impact of deafblindness and the range of supports that are available to assist deafblind people in various aspects of their life.

Parents of newly diagnosed children are particularly vulnerable and unlikely to be in a position to outline needs and goals to an NDIS planner. This situation is further complicated if the NDIS planner has no understanding of deafblindness. While the NDIS may have a standardised list of questions for planners to use, not all planners seem to be aware that the questions exist or understand the complexity of the disability resulting in plans that are unlikely to include all of the supports that are needed by the participant.

Given staff turnover levels in the NDIS there is a need for constant upskilling of new recruits. Even when staff have been trained, it is hard for them to retain knowledge of a disability that they will not see frequently. Therefore, it would be beneficial if people with deafblindness were immediately referred to a senior planner who understands the complexity of their needs. If deafblind participants could be seen by a senior planner with knowledge of deafblindness instead of having to be initially seen by a Local Area Coordinator and a planner with no knowledge of the particular needs of a deafblind person it would save time, money and avoid frustration for staff and participants. It would also avoid the participant having to constantly explain and justify their needs. This constant need for the participant to prove what they can’t do is confronting and disheartening especially for those whose condition is progressive. Having access to a senior planner who is going to immediately understand the needs of a deafblind participant would make the interaction more positive and less time consuming. It would also be helpful for the NDIS to engage subject matter experts, either internally or externally, to advise NDIS staff on how they can best support an NDIS participant with deafblindness.

Similarly, professionals working with people with hearing or vision impairment may not have a good understanding of deafblindness. These professionals need access to deafblind consultants to help them provide effective programs and supports for their clients who are deafblind. There is a need for professional development programs for allied health professionals working with deafblind clients and allied health discussion groups where professionals can support each other to provide the best programs for deafblind clients.

WORKFORCE ISSUES/THIN MARKETS a) Early Intervention services The NDIS promotes choice and control but the market is experiencing a reduction in the number of providers so in some cases choice has been reduced since the NDIS has been introduced. Some small early intervention providers have not been able to cope with the change from block funding to fee for service funding arrangements and have either closed or been subsumed by larger providers leaving less choice for families. If State Governments decide to discontinue their involvement in the provision of early intervention programs the market will be even more limited. Programs required by children with deafblindness including multisensory impairment are not widely available, require high level expertise and are costly to deliver. These programs could disappear completely if they are not adequately funded through the NDIS, leaving families with no appropriate early intervention options for their child.

b) Registration and Accreditation It is not clear where services will be available to NDIS participants once the in-kind arrangements with the Australian Government Hearing Services Program cease in June 2020. The availability of providers could be impacted by the NDIS registration and accreditation requirements. Providers are reporting NDIS requirements for registration and ongoing accreditation are expensive and onerous and make it difficult particularly for small businesses to register and provide services to NDIS participants. This may cause existing providers who are no longer able to continue to be registered to leave the market, and new providers may not have the resources or financial capital to enter the market. The loss of these providers to the system will impact choice and control, particularly in rural and regional areas.

c) Telepractice models of service delivery NDIS funding should also cover telepractice models of service delivery to facilitate increased and more timely access to hearing services for populations who are unable to access face-to face services due to geographical or other reasons.

d) Interpreter services The NDIS has created increased demand for interpreters and there is not the workforce available to meet the demand leaving vulnerable people underserviced, unsupported and isolated. The shortfall will increase as the NDIS continues to roll out, increasing the pressure on the workforce, creating a thin market and setting it up to fail. NDIS is promoting choice and control without ensuring the sector has the infrastructure to support it. It is leading to thin markets and the potential for market failure. Participants cannot fully utilise the funding in their packages due to the lack of interpreters which is likely to lead to less funding being made available in future years. It is difficult to access interpreters in rural and remote areas.

Due to workforce shortages, some deaf and deafblind participants are using family members as interpreters in their planning meetings. Using a person who is not a professional interpreter means they are not bound by a code of conduct on how to interpret in that setting. At times family members are putting their own advice and opinions into the discussion which can mean the participant misses out on funding for a professional interpreter.

e) Supports for deafblind people There is not a good understanding of the difference between the various supports used by people with deafblindness. There is a workforce shortage of interpreters generally, but especially interpreters for deafblind participants, and a shortage of communication guides. Consequently, interpreters are at times working outside of their role and also acting as communication guides to fill a need. Similarly, because of the shortage of interpreters, participants are using communication guides alone when they should also have an interpreter present. These workforce issues need to be addressed.

Communication guiding is a new role and deafblind people may not be aware of its existence. They need information as to how this role can assist them in daily activities and ensure it is something that is included in their NDIS plans. The role is particularly important for people in group homes or supported accommodation who can feel particularly isolated. Communication guides would play an important role in helping deafblind people to socialise which could improve their mental health and well-being as their feeling of isolation would be reduced.

Interpreters for deafblind participants require additional skills to Auslan interpreters, and communication guides need different skills to a disability support worker. The higher-level skills required by both professions need to be recognised by the NDIS and remunerated appropriately.

The pathway into the workforce supporting deafblind people needs to be strengthened. Communication guiding is a new field and requires formalised training and accreditation to be established. There is also a need for more consistent training programs and accreditation standards for deafblind interpreters.

There is a serious lack of allied health professionals and educators with the expertise needed to support children and adults with deafblindness including multisensory impairment. NDIS participants may have particular supports approved in their plans but they cannot find the providers with the appropriate expertise to deliver the service. There needs to be a strategy that helps to build expertise in the market to provide the specialist services needed by deafblind people.

In the allied health area, the professional organisations need to be made aware of the gap in knowledge and expertise in working with people with deafblindness including multisensory impairment among audiologists, optometrists, orthoptists, speech pathologists, physiotherapists, occupational therapists, counsellors, social workers, psychologists, early childhood teachers, teachers of the deaf and specialist teachers of vision impairment.

f) Service locations and expertise availability post 30 June 2020 There is no information on the ability or interest of hearing services providers other than Hearing Australia to deliver hearing services to children, or adults with more complex hearing rehabilitation needs once the in-kind arrangements cease on 30 June 2020. It cannot be assumed that all hearing services providers will broaden their service offer to include clients with more complex

hearing rehabilitation needs, so the coverage may become patchy particularly if Hearing Australia withdraws from any of their existing locations.

Hearing Australia has been the sole provider of services to children with hearing impairment for 70 years. There has been no reason for the private sector to develop skills and expertise or establish specialised facilities to deliver hearing rehabilitation services to this client group. It is a well-defined market that will not experience growth with the introduction of the NDIS, as all children in Australia with hearing loss can already access government funded hearing services. New providers entering the market to deliver hearing services to children will be competing for the relatively small population (approx. 25,000) of children and young adults aged under 26 years with hearing loss who currently receive services from Hearing Australia.

As Hearing Australia currently has responsibility as the sole provider of services to children with hearing impairment, it has established services in locations which improve access for clients but which may not be particularly profitable if viewed from a commercial perspective. Once services become contestable there is no longer an obligation for Hearing Australia to continue to deliver services to children at the number of locations where services are currently operating. Given the small number of children with hearing impairment, it may not be financially viable to try to compete for such a small clientele. Children under 3 years and those with multiple disabilities require specialised facilities and high level expertise to deliver assessment services. According to the 2018 demographic report from Hearing Australia on the number of children fitted with devices, there were 1,599 children fitted with devices aged under 3 years across Australia. It is difficult for one provider to maintain the equipment and staffing necessary to deliver services to this age cohort. It will be even more difficult in a contestable environment to justify continuing with this high cost service delivery on a commercial basis for such a small population. While the claim is made that people will have a choice of provider in the future, there is no evidence that this will be the case. Indeed, it may be that the introduction of contestability could create market failure. The NDIA will need to monitor this situation very closely to ensure that it doesn’t happen. Under the NDIS Market Approach the NDIS, as Market Steward, will play an important role in ensuring that consumers continue to have access to the expertise needed in the places where it is needed.

GOVERNMENT FUNDED HEARING SERVICES FROM 1 JULY 2020 There is no clarity post 30 June 2020 – less than a year away - as to what the arrangements for delivering hearing services under the NDIS will look like and it has not been possible to gain information as to what is causing a delay in the announcement of the new arrangements. This is causing high level concern among consumers and it leaves hundreds of providers both small and large unable to plan appropriately for delivering services to NDIS clients including business operations, employee resourcing, and training and budgeting. The NDIA has a market stewardship role to ensure a vibrant and diverse market in disability services. However, unresolved issues in the proposed rollout of the NDIS seriously threaten client choice and will, if unaddressed, lead to significant market consolidation and contraction, particularly in thinner (i.e. under-served) markets.

Similarly, there has been no information as to the services that will be available under the

Australian Government Hearing Services Community Service Obligations Program for those

clients who do not meet the access criteria for the NDIS but continue to meet the existing criteria for the Hearing Services Program. There is concern that some clients could fall through the gaps as services and client groups transition between the two programs.

Australian Government Hearing Services Program clients who meet the access requirements for the NDIS were expected to transition to that program on 1 July 2019. This was deferred until 1 July 2020. The legislative instrument for the Australian Government Hearing Services Voucher Program, which takes effect from 1 October 2019, indicates that people who meet the access requirements for the NDIS cannot access services under the Hearing Services Program from 1 July 2020. It therefore appears that the transition date will remain as 1 July 2020 but the NDIA has not given any information to allow providers and consumers to plan and prepare for the change.

There is a risk that the transition process will see some clients fall through the gaps or receive a poorer quality service under the new arrangements.

GROUP HOMES AND DAY SERVICES FOR DEAFBLIND PEOPLE People with deafblindness who are living in group homes or using day services often do not receive the supports they require as the impact of the dual disability is not well understood. There is a risk for people in these settings to become isolated. Deafblind people in group homes have the potential to engage more in the community but because they did not have someone to advocate on their behalf at the planning session their plans are not supporting them to reach their potential. For example, some people who had the ability to communicate in Auslan will lose that skill if there is no one in the home who can communicate using Auslan. There are people who would benefit from orientation and mobility training but it has not been included in their NDIS plans.

People with deafblindness in group homes often do not have family who are engaged in their lives. They need to have an advocate to work with them to ensure they are reaching their potential and have a good quality of life.

The staff in supported accommodation need to be appropriately trained and remunerated. There needs to be more than one staff member with relevant training. It may be easier to achieve this if people with similar needs can be accommodated in the same premises or close by so resources can be shared, thus reducing the load on individual staff and the likelihood of undesirable turnover of staff. The shortage of appropriately trained communication guides and interpreters is major problem for deafblind people living independently so it is also likely to be a problem for those living in supported accommodation.

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