Lifestart Co-operative Ltd

Submission to the Parliament of Australia

Joint Standing Committee on the National Disability Insurance Scheme – Inquiry into the provision of Assistive Technology

September 2018

Introduction

Lifestart welcomes the opportunity to provide a submission to the Joint Parliamentary Committee on the National Disability Insurance Scheme (NDIS) Inquiry into Assistive Technology.

Lifestart’s vision is that all children and young people are able to participate inclusively and meaningfully in their community.

Lifestart tailors its services and support around the individual priorities and goals of the children and young people with whom we work. Our highly skilled multidisciplinary teams work collaboratively with children, young people and their families, supporting them to achieve positive outcomes.

Lifestart places the person with a disability at the centre of all decision making and planning to support the achievement of their goals. Since 1996 our family/person centred approach has been a partnership with children, young people, and their families and carers, to assist and empower them to participate meaningfully and inclusively in the community.

Our service delivery teams offer therapy, behaviour, group programs and other supports to:

• Children and young people aged 0-24 years living in Western Sydney, Northern Sydney, Northern Beaches and parts of South Western Sydney
• Children and young people aged 7-24 years living in the City of Sydney, Inner West, and South Eastern Sydney.

As an Early Childhood Partner, we deliver the National Disability Insurance Agency’s Early Childhood Early Intervention (ECEI) Approach in the following areas:

• Central Coast
• Illawarra Shoalhaven
• Nepean Blue Mountains
• South East Sydney
• Sydney.

Lifestart has been operating some services under the NDIS since July 2015 and has now transitioned all its previously State funded services into the NDIS. Lifestart has supported individuals and their families to make the transition from block funded services to individualised funding packages.

In October 2015 the National Disability Insurance Agency (NDIA) contracted Lifestart as one of the initial four partners to pilot the ECEI Approach in the Nepean Blue Mountains Region of New South Wales (NSW).

The NDIA contracted Lifestart in 2017/18 to take on the role of Transition Advisor, along with one other provider, to support NSW Transition Providers to undertake the ECEI Approach during the NDIS transitional period. The Transition Advisor role included provision of advice and guidance on the NDIS legislation and business rules.

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The specialist work of this team was well received by NSW ECEI Transition Providers and this has been well documented. This opportunity provided Lifestart with excellent insight into the issues facing Transition Providers as they navigated the NDIS environment, including matters to do with assistive technology.

Lifestart was one of the successful grant recipients from the most recent Partner in the Community grant round in NSW to provide ECEI services. Lifestart has commenced as the Early Childhood Partner in five service areas, Sydney, South East Sydney, Nepean Blue Mountains, Central Coast and Illawarra Shoalhaven from 1 July 2018.

Under Information, Linkages and Capacity Building (ILC) funding Lifestart is delivering Belong INC. This project aims to empower children and young people, 12 to 18 years of age to belong in their community. Belong INC will address the unique needs of children and young people with disability in achieving positive outcomes for participation in their community.

Lifestart employs a highly skilled team of allied health professionals with specialist skills who are able to clearly identify when a child or young person would benefit by access to appropriate assistive technology.

Lifestart has assisted approximately 4,500 children, young people and their families / carers during the period 1 July 2017 – 30 June 2018. This is prior to the rollout of the ECEI Approach from 1 July 2018. Our occupational therapists (OTs), physiotherapists (PTs) and speech pathologists (SPs) have, and continue to be closely involved in assessment, prescription and implementation of essential assistive technology (AT) for our participants. Our extensive experience in this area allows us to describe several concerns related to AT in the transition to NDIS.

We refer to the following reference points as per the Joint Standing Committee terms of reference.

Lifestart Submission to Parliament of Australia Joint Standing Committee September 2018 3

The transition to the NDIS and how this has impacted on speed of

equipment provision

Prior to receiving an NDIS package, most people with permanent disabilities requiring AT have had access to Enable NSW. Enable NSW is a NSW health funded program coordinating the provision of aids and equipment ranging from continence aids, home enteral nutrition to assistive technology such as wheelchairs and communication device. Enable NSW has well established systems and guidelines which allow for clear and consistent decision making. Our therapists find that this system is superior to the NDIA systems in many ways. Our comparisons are summarised in the table below.

Prior to participant	After participant receives NDIS
receiving NDIS
	package
Funding Body	Enable NSW
Clear guidelines	Yes- available at
outlining what AT	http://www.enable.health.nsw.gov.au/prescribers/forms
features will and
will not be
approved and in
what circumstances.
Applications can	Yes
be made at any time so urgent needs able to be addressed quickly
Waiting times for funding of custom AT	Varied depending on equipment priority assigned. Waiting times consistent between pieces of equipment with the same priority AT items deemed ‘complex’ by the NDIA planner are automatically sent to review panel. Planners have stated they are complex due to the monetary

Lifestart Submission to Parliament of Australia Joint Standing Committee September 2018 4

Funding

Yes No. Planners refer to these benchmarks for AT benchmarks but will not make them open and public to prescribers. Some planners have verbally stated monetary benchmarks, which in our experience have varied significantly.

Timeframe for assessment of request Four weeks from receipt Equipment that is stated in the participant’s plan are in some instances funded immediately by some Local Area Coordinators (LACs) and planners. Equipment not stated in plan is almost never funded sooner than 12 weeks, even if urgent. More commonly participant must wait for review (scheduled or early). Some participants have waited 12 months or longer.

Applications assessed by Equipment Advisors, skilled and experienced clinicians who make

Yes Only after approval by LAC and planner. This creates a three-phase approval process which can take up to 12 months.

There is no way for prescribers to direct enquiries with contact the skilled equipment advisors the prescriber when further clarification is necessary

Written confirmation of the outcome of the application (approved or declined) and the priority assigned, and estimated timeframe for waiting sent to both the prescriber and the participant.

Yes No Sometimes declined requests are communicated to the prescriber via phone or email, but they do not state the word “declined”. Reasons for decline are not always able to be obtained. Some reasons for declining equipment sit within the scope of practice of an Allied Health Professional yet planners are declining outside their professional scope.

Wait times for Yes - depending Not for approved AT. Wait times are funding of AT on priority associated with three phase approval process and backlog in review of AT assessments.

Written confirmation Yes - formally by This has not been our experience. of funding becoming hardcopy letter available sent to and email both prescriber and participant, prior to the order being made

Availability of skilled Yes - equipment No. NDIS 1800 line is often the only clinicians within advisors’ phone or option for making enquiries. One staff funding body to email. Enquiries member asked the same question clarify rules and were generally regarding AT approval three times and guidelines answered within 3 received three different answers. working days

Requests for standard equipment through Enable NSW (known as stock equipment) is covered in point five below.

Our staff have had highly varied experiences with AT applications they have submitted to the NDIA on an individual’s behalf. Staff have reported several very concerning incidents highlighting a range of problems within the AT process at NDIA. Some examples are as follows: - LAC email to Lifestart Occupational Therapist (OT) apologising that the AT requests were lost in their system for several months. - NDIA staff manning 1800 number stating that applications have not been received, despite previous conversations with 1800 number staff stating that application was received and has been forwarded for processing. - Urgently required equipment was unable to be prioritised despite multiple attempts from Lifestart OT. This wastes the funding in the participant’s plan and places the participant at risk associated with not having this urgently required equipment. - Difficulty contacting LACs, planners refusing to supply their names or contact details and failing to return calls or emails following up equipment applications. - AT repairs not being completed in a timely manner due to funding not being allocated by LAC or ECEI in participant’s plan, so plan review required. - Planners allocating AT budget to a participant’s plan when the participant has not yet had an assessment and trial of equipment. The allocated money varies greatly between participants for the same type of equipment. Families also left feeling confused and trying to find equipment that sits within the allocated

Lifestart Submission to Parliament of Australia Joint Standing Committee September 2018 6

• budget rather than exploring equipment that meets the long-term, individualised needs of the participant.
• Planners allocating AT budget to a participant’s plan when the participant and/or family members have not identified assistive technology in relation to their goals. Families have reported that they have been told to use the AT funds because if they do not use them, they may not be able to access AT funding in the future (as it wasn’t needed in the first instance).
• NDIA managed participants have had AT budget allocated, with specific Augmentative and Alternative Communication (AAC) equipment approved (AAC app and iPad as dedicated communication device) however have been unable to access the equipment due to limited availability of NDIA registered suppliers of iPads and AAC apps that are purchased through iTunes. In these instances, LAC and planners have told families to self-manage the AT portion of the budget. Doing this triggers a review of the whole plan which is inefficient provided there is on average a 9 month wait for a plan review. It also presumes that families have disposal income to purchase the equipment (to then be reimbursed) which is not the case for many families living with children with additional needs. This system effectively diminishes ‘choice and control’ for participants and families who have chosen to be NDIA managed.

2. Whether the estimated demand for equipment to be sourced through the assistive technology process in each roll out area was accurate NDIA has reported to providers that its officers underestimated the demand for equipment. This is demonstrated through the long wait times and inconsistencies noted in AT approvals and management of NDIA processes. We would suggest that the NDIA may not have considered the impact of the following factors when attempting to forecast demand for AT:

• Underestimation of the cost of standard, customised and specialised equipment in NSW.
• Underestimation of the number of participants who require multiple types of equipment and have progressive changes in their body and functioning (due to their disability) or growing as a child, therefore requiring updated, safe equipment to meet their needs.

3. Whether market-based issues impact the timeliness of provision of equipment Based on current experience it is the opinion of Lifestart that market-based issues are not significantly impacting the provision of AT, except for hire equipment. Equipment suppliers should be consulted for further exploration of this point. The main concerns regarding market supply are: a. Hire of AT: It is difficult to source customised AT for hire, even in metropolitan areas such as Sydney. For example, paediatric sized slings are not generally available for hire. Wheelchairs with supportive seating are not available in paediatric sizes.

b.

In some instances, the NDIA requests multiple quotes for the same piece of equipment. Some planners or LACs are insisting on this, which has the following effects: - Delays in process due to time taken to setup and attend trials - Additional use of funding for a therapist to complete additional trials and time waiting for equipment to be assessed and/or accessed again - if quotes are provided based on another organisation’s quote and without a trial, equipment may not be correctly setup for the individual.

Approximate timeframes involved in each step in the AT prescription process are summarised below. Often the delays are due to difficulty coordinating appointment availability between therapist, supplier, equipment, participant and carer.

Step in process Time taken

Trials Suppliers often booked out for 2-5 weeks in the Sydney area. Semi-rural areas wait times are longer than this. Often two trials are required so 4-10 weeks should be allowed the complete trials. Augmentative and Alternative Communication (AAC) equipment trials have a 6-8 week waiting list (due to high demand) before trial can commence. Often two trials of different AAC devices are required so a 12-week period should be allowed.

Quotes Generally arrive within 2 weeks of trial.

Remeasure Often required if funding approval takes longer than 6 months. 2-3 weeks wait for appointment time.

Equipment arrival at Most custom equipment comes from overseas so supplier generally takes 6-12 weeks to arrive.

Delivery appointment Generally within 2- 4 weeks of arrival at supplier.

Total time for equipment IF equipment approved and funded immediately prescription process 16-30 weeks

This process is largely unchanged since the implementation of the NDIS. Providing the participant has sufficient funds in their plan under Improved Daily Living funding category, Lifestart participants are generally only waiting for therapist allocation if after school appointment times are requested by the family. Therapist availability is generally better than prior to NDIS, as families have a choice of provider.

4. The role of the NDIA in approving equipment requests

The process for AT request approval by NDIA is not transparent. It appears to involve a six-step process, with multiple opportunities for delays due to breakdown in communication between parties or high workload of particular parties. Lifestart staff have had their clinical reasoning questioned on several occasions by NDIA staff who appear to have little to no knowledge of AT. Some examples of difficulties encountered with approvals are as follows: - LACs and planners making inappropriate suggestions for AT e.g. stating that they found a wheelchair on the internet for a cheaper price (the wheelchair suggested did not meet the clinical needs of the participant); planner declining AAC stating that “speech therapy” has not been proven to be an effective therapy. - LAC contacting Lifestart OT at the request of the planner to clarify information that was clearly outlined in the AT request. LAC then admitting that they had not read the AT request. Lifestart OT requested to speak to the planner directly but this was declined. - Inconsistencies in what will and will not be approved e.g. standing frame approved for one participant but not another participant in an almost identical situation; AAC app with iPad funded (as dedicated communication device) for one participant and others being funded only for the AAC app. - LACs and planners not approving iPads as dedicated AAC devices, even when the AT form has clinically justified the iPad to act as their main mode of communication. It has also been brought to the attention of Lifestart, through Speech Pathology Australia, that iPads (as dedicated AAC devices) are being approved in other regions throughout Australia. - LACs and planners only funding part of the recommended and trialled equipment, for example AAC software but not the dedicated communication device (that the software needs to sit on); keyguards for access to communication devices not funded. - LACs and planners approving funding of AAC devices and additional equipment for access needs however the equipment has been approved at different times. This has left families with only parts of the equipment, waiting for the remaining to arrive, sometimes months apart. One family was told by a planner that the equipment needed to be dispersed across the 12-month period of the plan rather than being approved all at once. Please refer to appendix A for a case study highlighting many of the concerns Lifestart has with the current process and liaison.

• Enable NSW currently has a working arrangement with NDIA to consult and advise on AT applications on request. It is not clear how often this consultation occurs and in what circumstances Enable NSW are consulted versus the specialised equipment team within NDIA.
• Standard or stock equipment: Prior to the participant receiving an NDIS package, requests for standard equipment (known as stock equipment) could be made to Enable using a simple two-page form. Equipment trial is not necessary, and equipment is generally delivered to the participant within three months. Examples of equipment provided through stock equipment include beds and mattresses, community access wheelchairs and shower chairs. After a person with a disability receives their NDIS package, they are still eligible to access AT under Enable NSW for stock equipment only. However, The process for accessing stock equipment becomes much longer and more complicated. This can add an additional two to twelve weeks to the process. NDIA has announced that a simpler process for access to stock equipment is in pilot, however it has not been possible to access details of this pilot or planned changes in this area.

6. Any other related matters NDIA AT form The NDIA AT form is not simple to use, time consuming to complete and has multiple sections that are asking for the same information. Upcoming changes to NDIA AT process NDIA has announced a plan for significant changes to the AT process, involving AT assessment being completed at pre planning phase by a specialist provider, then implemented by a different provider. We understand that this process is in trial phase however further information on the process has not been located.

Lifestart has the following concerns regarding this significant process change:

• High possibility of deskilling the allied health workforce in the area of equipment assessment and prescription.
• Currently therapists learn and develop specialist skills in all types of equipment by carrying out the assessment, trial, prescription and implementation through on the job training and supervised by experienced equipment therapists. Cutting out the assessment, trial and prescription of equipment will naturally leave a gap in skill set and deskill the future allied health professional workforce providing support within the disability sector. Skilled AT assessors
• No clear information about what the criteria and experience will be of the NDIA skilled assessors, nor the tendering process for providers.
• Due to the nature of the work, allied health professionals who carry out equipment prescription have highly specialised skills and are usually employed in senior positions. In some areas such as AAC, there is a very limited number of speech pathologists with this skill set. The NDIA have not indicated they have

Medico-legal issues

• There has been no disclosure of the process for participants, families or therapists to contest the prescribed AT if the NDIA is of the opinion it is not reasonable and necessary in meeting the current and future needs of the participant.

• It also raises questions about the different skill sets of the assessor and therapist, and if there was disagreement about suitability of the AT being prescribed.

• There is no clarity around which therapist is held responsible in the event of participant being injured by prescribed equipment that is inappropriate.

Recommendations:

1. That the following information to be readily available on NDIA website: a. Detailed written process for AT requests and approvals including a flowchart identifying key steps and responsibilities b. Email address contacts for AT requests in each region with a response receipt as standard practice c. Comprehensive complexity level classification guide outlining which specific pieces of AT require an AT request form and a quote/s from prescribing professionals d. Guidelines stating clearly which AT and features will and will not be funded by NDIA (similar to Enable NSW guidelines) e. Simplified NDIA AT form to match Reasonable and Necessary criteria. f. Benchmark pricing for different types of AT: i. Benchmarks to be set so timeframes for review of AT requests becomes predictable ii. Basic AT requests to be processed by clerical staff iii. Complex AT requests to be sent immediately to an experienced clinician within NDIA for approval. Clinician to liaise directly with prescriber regarding queries and outcome of the application.

2. NDIA to work with Enable NSW in their recently announced loan pool integration initiative. This will allow participants to access urgently required equipment quickly and result in a cost saving due to the use of contract, stock and refurbished equipment.

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3. NDIA to consult with stakeholders including peak bodies and prescribers

around their plans for allocating “skilled assessors” to the new complex AT process.

Lifestart is willing to provide additional information by way of evidence or further written submissions if the Committee so requires.

Lifestart Co-operative Ltd

Encl (1) Appendix A: Case study illustrating concerns re: AT approval

Lifestart Submission to Parliament of Australia Joint Standing Committee September 2018 12

Appendix A: Case study illustrating concerns re: AT approval

4 Jan 2018: Participant’s OT submitted AT request for Power Wheelchair (PWC) for a boy with Duchenne Muscular Dystrophy.

OT subsequently made several attempts to follow up progress of same (LAC - at original application and then twice after that. NDIS directly - original application and then 3 times after that) without success.

22 May: Participant’s loan PWC broke down and he was without a working PWC for nearly 2 weeks whilst repairs were being organised. OT held a discussion with Enable re: Exceptional Circumstances. Enable informed OT that this program is not for NDIS participants.

22 May: OT rang the NDIS again. OT states “the person on the phone said that the request had been declined and that this is likely due to the fact that they have a scheduled review in July. I asked about funding for loan equipment and she said there is nothing they can do. She sent off an email to get more information.”

23 May: The LAC emailed OT stating, “the review for the wheelchair was declined as it was processed within the 3 months prior to his scheduled review date which is 17.07.18 and it is a standard practice for the NDIS to decline the review and expect the participant to include it in their Scheduled Review.”

The LAC’s solution was to offer an early review and contacted the parent about doing the review the same week. OT felt that an early review would disadvantage the participant as this parent needed more time to prepare for the review. The LAC went ahead with the review despite the OT’s requests to delay it a few weeks.

11 July: Participant’s new plan was sent to participant and OT, with PWC as a stated item, however the LAC states “The power wheelchair request in AT still has not been finally approved but you have funds for repair and maintenance. You do not need to resend the review and report for the wheelchair for it to be considered. This review has been escalated to a specialised team who need to be the ones to give final approval as it is a costly item. I cannot give you a timeframe on when the decision will be made but I will keep you updated.”

12 July: OT spoke with the LAC who said that it could take a number of months before the equipment request is looked at, despite it being a stated item and having already been waiting for 7 months.

25 July: Email request sent to senior planner outlining above and asking questions: “As the review has occurred, why does participant’s PWC AT request have to wait again for the specialised team? Is it just because it is a costly item? The cost of the PWC has been known to the LAC and NDIA for 7 months. Is there anything that can be done to speed up this process?” No response was received.