Can:Do Group submission to the Joint Standing Committee on the National Disability Insurance Scheme

September 2018

Contents

About the Can:Do Group………………………………………………………………………………………………………………..2 About this submission……………………………………………………………………………………………………………………2 Terms of Reference Part D – NDIA Approvals……………………………………………………………………………………3 Terms of Reference Part G – Related matters …………………………………………………………………………………..6 Conclusion……………………………………………………………………………………………………………………………………8

About the Can:Do Group

The Can:Do Group encompasses South Australia’s two oldest charitable service providers, Can:Do 4Kids, Townsend House and Deaf Can:Do, The Royal South Australian Deaf Society.

The Can:Do Group also incorporates Can:Do Hearing, an audiology business whose profits directly contribute to Can:Do 4Kids and Deaf Can:Do services.

With over 140 years of experience, we are the leading experts in specialist services for people with hearing and vision impairments in South Australia, - and each year we touch the lives of over 20,000 people.

Can:Do 4Kids, Townsend House, is South Australia’s oldest charitable service provider, offering vital therapy and support to children and young people who are blind, deaf or have vision, hearing or sensory impairments and their families.

Established in 1874 by William Townsend as a school and accommodation for deaf and blind children, Townsend House has provided family-centred support for over 140 years.

Deaf Can:Do, The Royal South Australian Deaf Society, delivers vital services and support to Deaf and Hard of Hearing South Australians.

Established in 1891 by Townsend House Superintendent Samuel Johnson as the Deaf and Dumb Mission, Deaf Can:Do is South Australia’s second oldest registered charitable service provider. Throughout the years, our services have evolved to meet the ever-changing needs of the South Australian Deaf community.

Our work aims to alleviate isolation and equip people who are Deaf and hard of hearing with the assistance, knowledge and confidence to live independently and contribute to the community.

About this submission

The Can:Do Group, and in particular Can:Do 4Kids, Townsend House, have been delivering services under NDIS since the inception of the children’s services trial site in South Australia in July 2013.

In our implementation of these services we have developed significant experience and expertise in NDIS service delivery and have provided NDIS claimable services to over 500 children over the last five years.

We have also consulted broadly with our client cohorts to gather their feedback in order to ensure this submission is representative of their experiences.

We would value the opportunity to present further to the committee in order to share our experiences, and help shape a robust system for the future of our services and the improvement of outcomes for all Australians living with a disability.

Terms of Reference Part D – NDIA Approvals

The role of the NDIA in approving equipment requests. NDIA approvals are the biggest issue with Assistive Technology (AT) access for our clients, and as Assistive Technology is key to the outcomes achievable for many of our clients, and especially so for the blind and low-vision children we support, we see this as needing urgent attention and resolution. The lack of specialist knowledge of planners regarding AT needs for participants is highly concerning, as they are allocating funding and making decisions regarding appropriate devices, often without ATS assessments or in direct contravention of expert advice. This is resulting in insufficient funding to provide equipment required, or rejection of recommended equipment required by the client. There is also a lack of appreciation for specialised AT knowledge – which is evident across NDIA.

• Recommendations are often over ruled or over looked.
• Requests are made for multiple letters of support and justification (most of which is unfunded support by providers).
• Many requests are sent to an assessment team which have resulted in significant delays.
• When recommendations are declined no alternatives are given or guides as to what would be funded.

Often there is blatant disregard for the significant benefits of using mainstream products, such as iPads, to achieve better outcomes (often at a lower financial cost) than having to purchase and manage multiple products to meet different needs. There needs to be an acknowledgement that reasonable and necessary assessments cannot mean a blanket rule against specific equipment.

Following on from this, delays in equipment provision due to the length of time taken to assess (and often repeatedly reassess and prove) need are frequently resulting in poor plan usage and therefore poor goal attainment and outcomes for clients. In many of these cases this has meant that the child has gone without having access to assistive technologies for over a year. The examples listed below are all children aged around 6 to 7 years old

• critical times for development and learning. They have not been able to access the visual information that their typically sighted peers are able to naturally. Whilst NDIS has not only declined requests, they haven’t provided alternative options or a guide as to what they would fund.

Successful outcomes are most likely to be achieved when assistive technology specialists and/or occupational therapists with assistive technology knowledge conduct the AT assessment in preparation for the planning meeting.

When planners have provided assistive technology funding without a pre-assessment by the existing assistive technology specialist who is already working with the family, funding amounts provided have often not been able to fund the minimal reasonable and necessary.

The specialist conducting the assessment should be familiar with the family and their circumstances and therefore can make the most suitable recommendations for that family and child’s unique needs.

There are no expectations set with families around the time or process taken for internal review to take place within NDIA is leading to much frustration and confusion for families

• Clients are also reporting that this has negative impacts when attending review meetings as clients have had their plans reduced as they didn’t use their funding, and many are still awaiting funding decisions on ATS when they come to their next plan review.

Parent Case Study

“My daughter has been on an NDIS plan since 23 May 2016. In July 2016 she underwent intensive assessment for Assistive Technology requirements done by an Assistive Technology Officer - as per her plan requirements in order to have equipment funded by NDIS. A very detailed Prescriber Justification Report was submitted by the service provider on 5 November 2016. Another equipment recommendation report was submitted in February of this year by another service provider for low budget, simple low vision daily living aids.

Despite enquiring, in person, SEVERAL times, regarding these 2 recommendation reports - they STILL have not been looked at for approval. Nearly 7 months since being submitted!

Enacting most of my daughter’s plan was reliant on these pieces of equipment being supplied - she is severely visually impaired and without these items she cannot perform personal care tasks, learn to be independent around the home and community and has no access to technology which would allow her to use social media and engage with peers.

Today, my friend in the same situation attended the same office I have enquired at, and her equipment recommendations were looked at on-the-spot and approval given for nearly every item

• and she was told to use whatever funds she had left in her current budget (days left in it) to purchase that equipment and, as it was recommended under the old plan she can purchase items under those rules.

Less than an hour later, I attended the SAME office, spoke to the SAME person and was told because I am self-managing, ‘the rules are different’ and my equipment recommendations will be looked at in my daughter’s NEXT plan. I was told I cannot have anyone look at it, approve anything or purchase anything no matter how much money is unspent in the current plan, nor how long it’s been waiting to be considered.

In the current plan, few budget lines were able to be utilised - either because of lack of equipment for her to be trained with, having to jump through numerous hoops to wait for service providers to have time to meet with us, then sign service agreements, then have assessments done, THEN once the service providers have had time to fill out lengthy justification reports, submit Plan Review paperwork + reports just to have to wait for MONTHS for them to be looked at and then commence training! As a consequence of all of the complications - only a small percentage of her budget has been used and the Review Planner tells me that it “won’t look good for getting funding in the next plan as we didn’t use much of this one’.

I’m also told that equipment that my daughter NEEDS - nothing replaces iPads in terms of accessibility, functionality and absolute preference for vision impaired children - is no longer an item that is going to be funded. With NO justification as to why and no reasonable discussion to be had as to just WHY this vital piece of equipment cannot be justified no matter what the need or logic. However, my friend can go buy one as if it was approved under her current plan and I cannot

due to self-managing. WHY is my child disadvantaged compared to another just because I chose to self-manage and cut costs for the NDIS?

My child desperately needs the equipment that was recommended for her LAST YEAR. As she is in a very important transitional stage she cannot afford to have effectively wasted the whole last year by waiting for services and equipment she now has lost without the opportunity to even start with them. She also cannot afford to be denied sufficient training, support and services that she NEEDS just because funding is now less favourably looked upon than it was only a short time ago.

My daughter still has not received a new plan. It has been 3 months since she had her review meeting and she has hear nothing about the iPad Pro or the new plan.” 3 September 2018

Client examples

• Client 1 is totally blind (no light perception) was not backed on a vital piece of equipment (the BraillenNote Touch). The technical team said that they would only fund a braille display because it is the minimum requirement - even if it is not an appropriate device. AT Specialist submitted a reviewable decision on this date with an additional four hours of assessment to explain why the minimum is not acceptable for the client. Family is yet to hear anything.

• Client 2 had an NDIS assessment and justification report submitted in which a 12.9 iPad Pro was assessed and recommended over another 10 individual specialist devices. The “minimum reasonable” was assessed and found not to be of any benefit or meet the needs of access to print material along with the other specialised magnifiers. Event though requirements were documented and articulated well in the justification report and the iPad achieved the goals and outcomes it was knocked back and no alternative was offered. The consequence of this is that currently a VI child had no access to a magnifier.

• Client 4 had an assessment, justification report and appendix with photo evidence for an iPad Pro to be used to access small print material in the community setting but still knocked back by the NDIS planner saying the client has access to small print. The only access the client has is a desktop magnifier for the home. Subsequently the client has no access to small print material in the community.

• Client 5 was knocked back on two vital pieces of technology, with NDIS stating that a portable and desktop magnifier do the same thing. The local area coordinators want to push through the plan without any technology. The client has severe vision impairment and has no access to small print material.

• Client 6 applied for a portable magnification device in September 2017. Still waiting for a response. Therapists have emailed NDIS frequently following up with only confirmation that it is being processed.

• Clients 7&8 are twins with a visual acuity of 6/60 (considered legally blind) and applied for magnification devices in August 2017. Therapists emailed NDIS to follow up, receiving confirmation that it is ‘being processed’, and then that it needed to wait until the next planning meeting for this to be taken into consideration. The participants successfully received devices, however went over a year without having access to assistive technologies in the home. This significantly impacted their ability to engage in reading, play, drawing and other developmental learning opportunities.

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• Client 9 has visual acuity 6/90. The family applied for CCTV in July 2017. NDIS declined the request and sent reviewable decision form. Re-forwarded reviewable decision form in January 2018 with more information provided; still no response. Re-submitted request with even more information as a part of their new plan in April 2018. Still no response. The plan has been extended and family is still waiting for response from NDIS regarding assistive technologies.

• Client 10 has visual acuity of 6/130. Application for CCTV which was declined. Reviewable decision sent in. In this case the family ended up being successful after 7 months of back and forth with NDIS. The family required a therapist to advocate for them as they felt unable to communicate their needs clearly. In the planning meeting the planner suggested a Perspex magnification sheet – this definitely would not suffice considering the profound vision impairment the child has. Similar things have been said in other meetings; with a general consensus that vision impairment is not very well understood by planners.

• Client 11 has a visual acuity of R) counting fingers and L) 6/60 (legally blind). He received assistive technology funding for $900 for a portable electronic magnification device. This amount is vastly insufficient and the assistive technology specialist working with the client is unable to source a device suitable for his needs for this amount.

• Client 12’s planner would not accept the first letter of recommendation, which had to be amended twice. The planner called asking why the client needs the equipment and asked “wouldn’t glasses fix him”, even after reading the letter of recommendation. There is limited clarity around specialised Assistive Technology supports and what is considered ‘reasonable and necessary’ in the context of NDIS.

In summary:

• NDIA approvals for AT are inconsistent and often take over 12 months
• Clients can be severely disadvantaged by these delays
• There are extremely high costs to NDIA and service providers due to the multiple assessments required.
• NDIA planners are disallowing AT recommendations from trained professionals

Terms of Reference Part G – Related matters

Any other related matters. Can:Do 4Kids’ paediatric hearing aid program. Since April 2017 Can:Do 4 Kids have been offering a Paediatric Hearing Service alternative to the Australian Hearing program. We initiated this service as a direct result of feedback from our Can:Do 4Kids families who were keen to receive both their hearing aids and therapy in one location. Our service allows families to have choice and control as per NDIS principles, and we are passionate about this choice being available to all children and families. Approximately 30-40% of all children with hearing loss having one or more additional disabilities, such as intellectual disability, Autism Spectrum Disorder, Cerebral Palsy or Vision Impairment. Hearing loss is also related to a number of syndromes. Family needs are well addressed with the Can:Do 4Kids service that specialises in children with a diagnosis of sensory impairment which includes hearing, vision or sensory processing difficulties commonly associated with an ASD diagnosis.

The aim of this service

The aim of this service is to provide a true multi-disciplinary approach for our families where our audiologists fitting hearing devices work alongside the other members of the Can:Do 4Kids client services team. This team consists of early childhood specialists, speech pathologists, occupational therapists and psychologist as well as assistive technology specialists.

Our service supports children aged 0-18 years with a diagnosed aidable permanent hearing loss. This service is available to current hearing aid users and newly diagnosed children.

Our experienced team of Paediatric Audiologists have training and specialised skills to help support children, young people and their families in regard to assessment and management of their hearing loss and supporting the child’s communication development.

Consultations may include diagnostic hearing assessment, hearing aid recommendations and fitting, fitting of assistive listening devices and habilitation including strategies to assist in overcoming communication difficulties.

We aim to help support parents, caregivers and the child in understanding their individual hearing loss and to be able to use their hearing aids or assistive technology to reach their full potential.

Client examples

• Family A

The parents of a young child diagnosed with a hearing loss via the universal newborn hearing screening (UNHS) program contacted Can:Do 4Kids for early intervention support. At the time of diagnosis the parents were overwhelmed and chose to delay intervention by way of amplification and engaging in early intervention support. It was not until the child was over two years of age that they felt ready to seek further assessment to confirm the diagnosis and felt ready to engage in Early Intervention (EI) support via our service. They still felt apprehensive about amplification for the hearing loss and declined services from Australian Hearing at that time. After working closely with their key worker (speech pathologist) it was noted their child was making slow progress with their speech and language development. As a result of the supportive relationship and trust that developed between the family and key worker the subject of intervention with amplification was again broached. At this time the parents felt more ready to accept this and were open to meeting with the Audiologist on team. The parents then went on to have their child fitted with hearing aids when they felt ready and supported and have since engaged in other services offered at Can:Do 4 Kids.

• Family B Child was diagnosed at 4 years of age by Can:Do Hearing as part of a routine hearing assessment. At the time of diagnosis the parents were disappointed they were required to be referred elsewhere for advice and provision of amplification at Australian Hearing. Child received hearing aids from Australian Hearing and engaged with early intervention services through Can:Do 4Kids. After the Paediatric Aided Service was established the family were delighted to transfer to our new program and receive all services from the one local provider specialised in supporting children with sensory impairment.

• Family C Child was diagnosed under the universal newborn hearing screening program. Family became aware of our Paediatric Aided Service via “word of mouth” in their parent network and elected to be referred to Can:Do 4Kids program to receive all their EI and Audiology services with the one provider. Family made direct choice not to be streamed down the traditional referral pathway where the device is fitted at another service provider to where the EI supports occur.

Some barriers we have come across with assistive devices is compatibility with technology with Australian Hearing providing Remote Microphone systems and other providers fitting classroom soundfield systems. It has also been reported that educators can feel overwhelmed with technology, lack consultation in use of both systems. Our team have been able to attend child care settings, kindergartens and schools directly on-site to provide timely support and advice around the use of the various assistive technologies. We have also provided advice on understanding the implications of hearing impairment in the child’s learning environment , upskilling of staff regarding appropriate device use and troubleshooting and ensure communication between the family, staff and involved therapists.

In summary:

• Under the key NDIS principle of Choice and Control we believe that access to assistive device, in the form of hearing aids, should not be restricted to one provider in order to allow families to choose a provider that best suits their unique needs and circumstances.

Conclusion

Whilst we acknowledge that the NDIA are working to resolve issues with a large and complex system, there significant inconsistencies and issues with provision of Assistive Technology supports, and these are causing considerable distress and disadvantage to many of our clients - and our staff also struggle to support families to navigate the system.

The unwillingness of planners to endorse professional advice from Assistive Technology specialists with a specialised experience, training and understanding of client need, passing this over in favour of seemingly over-simplified bureaucratic rules, is placing children at risk of even greater developmental delays.

We welcome the opportunity to provide feedback to the Joint Standing Committee and would welcome any further questions, to provide more examples or clarification, or to present directly to the committee.