NDIA Accountability Project

Submission to the Joint Standing Committee on the NDIS inquiry into the provision of assistive technology.

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MS AUSTRALIA

MS

Submission to the Joint Standing Committee on the NDIS inquiry into the provision of assistive technology.

14 September 2018

Deidre Mackechnie Sandra Walker Chief Executive Officer Acting Chief Executive Officer

MS Australia MS

                                                        MS Australia
                                                                   Level 19 Northpoint Building,
                                                                      100 Miller St
                                            NORTH SYDNEY NSW 2060
                                                                                             T: 02 8413 7977
                                                                                               F: 02 8413 7988

Multiple Sclerosis Australia www.msaustralia.org.auABN 51 008 515 508

Introduction

MS Australia (the national peak body for people living with multiple sclerosis in Australia) and MS (the entity which is the pre-eminent source of information, advice and services for people living with multiple sclerosis in the ACT, NSW, Victoria and Tasmania) are pleased to provide a joint submission to the Joint Standing Committee on the NDIS inquiry into the provision of Assistive Technology.

The focus of the comments, suggestions and recommendations provided in this submission is on key areas that will impact on people affected by multiple sclerosis.

Multiple Sclerosis (MS) is a debilitating disease of the central nervous system that affects more than 25,600 people throughout Australia. It is the most common chronic neurological condition affecting young adults. The average age of diagnosis is between 20 and 40, and 75% of people diagnosed are women.

MS varies significantly from person to person. For some people, it is a disease that fluctuates in severity with periods of unpredictable relapse and remission. For others, it is a progressive decline over time. For all, it is life changing.

Symptoms can include debilitating fatigue, severe pain, walking difficulties, partial blindness or thinking and memory problems.

There is no known cause or cure.

An Economic Impact study of MS conducted by A. Palmer in 2011 stated that, ‘the typical course of MS is initially relapsing-remitting, with symptoms partially or completely disappearing during remissions. However, after about 10 years, the majority of people enter a secondary progressive phase and disability gradually accumulates. For a smaller group, the disease course is primary progressive, with ongoing worsening of the initial presentation. Many of these people with MS develop other chronic conditions in the course of the disease.’¹

We are keen to ensure that the NDIS is successfully implemented. The issues raised and examples set out in this submission are provided as constructive suggestions and to highlight areas where improvements need to be made to the provision of assistive technology under the Scheme.

Difficulties With Planning Process; Lack Of Understanding By Ndia Staff

Participants who are more able to speak up for themselves and negotiate better outcomes. Those who are vulnerable, confused and isolated tend not to fare so well.

The application and administration of the scheme has not been friendly nor consistent and has challenged and frustrated many participants, families, and the MS workforce. Negative experiences range from planning through to the application and review process, with adverse practices and processes hindering the successful introduction and acceptance of the scheme.

The major challenges with scheme implementation overall could be summarised as:

  • Difficulties with the planning process; lack of understanding of progressive neurological conditions by NDIA staff
  • Difficulties with plan approval and plan implementation; poor communication with participants and Support Co-ordinators by Local Area Co-ordinators (LACs)
  • Difficulties with the planning review process; high volume of plans needing review; poor communication by NDIA staff regarding complaints and appeals

The major challenges in relation to the provision of assistive technology could be summarised as:

  • Poor communication from agency staff, including lack of follow up and lack of progress reports
  • Significant delays in providing approvals and making arrangements
  • Errors and confusion regarding exactly what is needed and by when

This poor communication, confusion and delays has a significant impact on applicants and participants leading to extreme anxiety and frustration.

These challenges are set out in more detail below.

  1. Difficulties with the planning process; lack of understanding of progressive neurological conditions by NDIA staff

MS has received considerable feedback from participants, their carers and other members of a participant’s support network regarding the planning process and MS staff have supported a number of participants in their planning meetings with LACs. The overwhelming theme of the feedback relates to the apparent lack of understanding of the impact of disability within most of the LAC workforce, the absence of any specific understanding of multiple sclerosis or other progressive neurological conditions, the lack of experience in conducting planning assessments and the nature of these assessments.

Whilst we are aware of a number of LACs who have sound skills and knowledge when it comes to disability and sometimes progressive neurological conditions and the benefits that forms of assistive technology provides, it is not the norm. Conditions such as multiple sclerosis are characterised by many hidden symptoms which are often not being explored during the planning assessment. Standing out amongst these often hidden symptoms such as fatigue, continence and heat intolerance, is the changes that multiple sclerosis can have on a person’s cognition.

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Cognitive changes or deficits are difficult to identify unless given ample time and exposure to someone with these symptoms. But when assessments do not explore such a possibility, assessors are not skilled or given scope to drill down and discover the extent of these symptoms, then the likelihood that they are given due attention is unlikely.

MS can and does affect a person’s ability to pay attention, retain short term memory, process information at normal speed and undertake executive functioning tasks such as planning, problem solving and flexibility of thought or insight. Not realising that these deficits could be affecting the answers being provided is, we believe, a major contributor to plans being developed which do not provide the necessary supports, including assistive technology, which can combat or help manage cognitive change.

Whilst we are very pleased to have recently been invited by the NDIA to provide material for a “Snapshot on Multiple Sclerosis”, we have not yet been advised as to how this material will be used or if, and how, the Snapshot will be promulgated throughout the Agency.

We believe that Support Coordination should be mandatory in plans for people with a progressive neurological condition such as MS so that a plan can be implemented appropriately, in a timely fashion and without the potential risk that funds will be used inappropriately. Allied health support is also integral to managing some of the visible and hidden symptoms of MS and other neurological conditions, including recommendations for the use of appropriate forms of assistive technology. Funding is essential to allow people to continue treatment by trained professionals such as a physiotherapist or exercise physiologist, to manage pain, maintain mobility, reduce fatigue, reduce falls and improve a person’s ability to remain in, or re-enter, the workforce. This includes support for recommending and implementing appropriate forms of assistive technology. Often the need for these supports is not understood by planners and LACs.

  1. Difficulties with plan approval and plan implementation; poor communication with Support Co-ordinators and participants by Local Area Co-ordinators (LACs)

The NDIA announced early on that written plans sent out to participants are often incorrect and that they should not be seen as an accurate record of the supports in a person’s plan. In addition, supports identified in the participants ‘myplace’ portal are also often incorrect. This leaves participants unsure of what exactly they are funded for.

The language used in some plans is laced with poorly understood jargon and/or just copied and pasted from one plan to the next.

Those participants who have not received funded support coordination are often told that they will receive ‘support connection’ from the LAC who was involved in their planning process. Unfortunately, the nature of the support connection delivered by the Local Coordinator agencies to allow a person to activate a plan, engage providers, develop service agreements, budget their funds and deal with issues is sparse, inadequate and often ineffectual. This can lead to plans without funds for equipment, including mobility aids and continence equipment, and services such as domestic assistance, yard maintenance, transport funds.

Support Connection Challenges

Support connection from agencies sometimes seems to entail giving someone a printed handout on what the ‘mygov’ system is, what the ‘myplace’ portal is, definitions of a support agreement and a list of recommended providers which the participant can contact to seek supports or, slightly better, providing a single face-to-face meeting.

LACs have told participants that they do not have the time to provide support due to other commitments in planning and plan reviews but that “they are available if there is a problem”. Unfortunately, LACs can be difficult to contact, sometimes leave the position and are not replaced or report that they still have no time available to support a person. This can lead to unacceptable long delays in the provision of assistive technology including aids and equipment and home modifications.

Other LACs have told participants to ring the MS organisation to provide this assistance, which we do, but this assistance is unfunded. Staff at MS spend a considerable amount of time chasing LACs to implore them to provide the ‘support connection’ services they are contracted to provide. MS staff are assisting participants to submit plan reviews because LACs do not have time or no LAC is currently allocated.

Coordinators of Support in the MS organisation provide considerable support to NDIS participants whose plans were inadequate or who have had reviews delayed which has seen their funds exhausted. In addition, our NDIS Advisors, speak to people on a weekly basis who have their access to the scheme denied or who need assistance with submitting reviews - all of this support is unfunded. We also field calls from participants who call up with no idea what to do with an NDIS plan they have had for months, do not know who their LAC is or have tried contacting them and received no reply. We also spend considerable time trying to track down LACs or if they have left the role, which is common, advocating for a replacement to be allocated or a plan to be reviewed to include support coordination.

3. Difficulties with the planning review process; high volume of plans needing review;

poor communication by NDIA staff regarding complaints and appeals

The number of people which the MS organisation is aware of that have submitted, or are planning to submit a plan review, is substantial.

Of those participants which MS is providing support coordination to, over 80% have required a review due to: errors in plans, underfunding of supports previously provided under the State model, including assistive technology, or they have unmet needs that were not understood or addressed at plan design.

The process for submitting and waiting for a response from the NDIA is just another cause of stress for those people that are most vulnerable. The fact that a total plan reset is required to change a single item in a plan or to amend an error by the Agency is causing a strain on the resources within the Agency which is then transferring to participants and the MS support staff involved.

Once reviewed, changes to those support areas which were not included in the plan review leads to reductions in funding for core supports. These reductions then lead to yet another review and the cycle begins anew.

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A major concern is the lack of communication from the NDIA to participants regarding the progress of a review. This is especially frustrating for participants waiting for aids and equipment or home modifications. Complaints will see a response from the NDIA that the issue has been escalated but not to where and how the matter will be resolved. Staff at the NDIA will often state that they are understaffed and can do no more than escalate the issue. Again, MS is approached by increasing numbers of people seeking assistance in formulating and submitting plan reviews or appeals, something which again is unfunded and we understand should be delivered by LACs.

We are encouraged by the NDIA’s introduction of a ‘participant pathway’, currently being trialled in Victoria, which we hope will address some of the concerns outlined above. The NDIS advise that this will allow amendments to plans without a total rebuild, and that plans will not be activated until signed off by the participant, hopefully reducing the number of reviews in the first three months, though we are concerned that this may prolong the time before a participant receives a workable plan, if the education of planners and LACs remains constant. The Agency has already indicated that they do not have the resources or the systems to roll out the full participant pathway as planned (e.g. a planner and a LAC involved in all planning meetings, participants provided with their LAC’s direct phone number), however we remain cautiously optimistic for the pathway’s national implementation.

Case studies

The challenges set out above are further illustrated by the following case studies that refer particularly to issues regarding assistive technology. (These case studies have been de-identified; the names used are not the participant’s real names.)

Case Study 1:

Significant delays in implementing home modifications; lack of communication by NDIA planner; led to participant’s deterioration; home modifications still not finalised!

Participant in Western Sydney

Chris commenced with the NDIS in January 2017. Chris’s primary disability was directly related to MS. Chris is in a manual wheelchair in own home that is carpeted and currently has a bath in the bathroom. The initial Plan supported every aspect of Chris’s life including an extensive budget for home modifications to replace the flooring in the home and modify the bathroom so CD can shower.

Chris engaged an occupational therapist (OT) to start the process of the Home Modifications. The OT had to source a recognised NDIA OT who has a specific skill for assessing home modifications. This process took six months before plans were drawn up and builders were involved.

The builder’s plans and quotes for home modifications were sent to the NDIA for approval. The main goal in Chris’s plan was to access the bathroom and shower at home, but after nine months nothing had changed and Chris’s condition was deteriorating.

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There was no news from the NDIA regarding the home modifications until Chris and his Support Co-Ordinator (SC) attended a planning meeting with the NDIA, by phone, in December 2017.

The issue of the lack of progress on home modifications was raised at the meeting, as Chris by this stage was extremely distressed and upset. The Planner assured Chris that she (the Planner) would approve the home modifications, as the Planner could see all of the details had been placed on the NDIA system. Chris was relieved and somewhat placated by the words of the Planner and felt it was only a matter of weeks until work on the home modifications would commence.

By the end of January 2018, Chris had not heard any news from the NDIA regarding the home modifications nor a start date. The SC followed up and spoke to a Planner at the NDIA regarding the home modifications querying as to why there had been a hold up; the Planner was not sure and explained a senior delegate would get back to Chris.

A Planner then followed up within a few days and explained that due to changes at the NDIA, builders needed to be registered with the NDIS to roll out home modifications. The Planner explained that the participant would need to source new builders to again get plans and quotes together.

At the beginning of February 2018, Chris asked the OT to set the process of getting new building plans and quotes together in motion as Chris was again extremely depressed due to the rule changes, lack of communication from the NDIA and still nearly 18 months later no access to his own shower.

NDIS-approved builders provided plans and quotes for the work required and all details were submitted to the NDIA again in May 2018.

Currently, Chris is still awaiting an NDIA delegate to approve the home modifications.

Case study 2: Dissatisfaction with planning meeting, significant and unnecessary delay in providing essential communication device, participant experiencing extreme anxiety and frustration.

Participant in Lake Macquarie

In December 2017, Sue, her husband and a Support Co-ordinator (SC) attended a plan review meeting with an NDIS planner.

During the 2-hour meeting, it was felt that the planner was extremely dismissive of Sue and her MS-related disability, even more dismissive of her husband and any input from the SC.

For example, a discussion was held regarding a request from Sue’s husband to provide a cup holder on Sue’s wheelchair. The planner responded with the question, “why would a cup holder be needed, when redacted?”. Sue’s husband was quick to explain that Sue enjoys other drinks besides the water in her “Camelback”

Case Study: Sue’s Experience

water holder and that the simple use of a cup holder and straw would allow her to feel somewhat “normal” in social settings. The planner did not respond.

Once Sue’s plan commenced, an allocation for a communication device was built into the plan, pending a trial and quote. The device was approved relatively quickly; however, the funds were not released by the planner for another six months following numerous emails and phone calls.

The device was then ordered by the NDIA from the manufacturer without any details attached, such as Sue’s name, address or NDIS number. It was only after several complaints from Sue and her SC that the device was located. Once the manufacturer was made aware of who the device was for, the process for delivery was relatively quick.

The NDIA planner was copied into all relevant correspondence and not once did she reply or at the very least apologise for the long delay, which could have easily been avoided.

Sue has been unable to participate in her community safely without this device and the six months of anxiety and anger that she experienced could have easily been avoided if some understanding of SC’s disability being brought about by MS was understood.

The SC and other allied health involvement provided by MS have continued to provide the ongoing assistance required to implement the device and other aspects of Sue’s plan, despite the delay causing the hours in the Core Budget Daily and Support Co-ordination aspect of Sue’s plan being exhausted.

Case study 3:

Multiple plan errors; incorrect advice given by NDIA staff; need for Support Coordinator to provide unfunded support

Barry is a 55 year old man diagnosed with motor neurone disease (MND) in 2016.

His Support Coordinator, on two separate occasions, was informed by NDIA staff, that he had funding in his plan for an assistive technology (AT) budget in addition to the sum of $6,600 for FlexEquip which could be used for other equipment items.

FlexEquip is a service of the Motor Neurone Disease Association of NSW (MND NSW), a registered NDIS provider, which assists adults with rapidly progressive neurological conditions to obtain AT to meet short to medium term needs.

His AT funds were withdrawn and it is now apparent that the budget information provided by the Agency was incorrect and his FlexEquip budget has been drawn down on, leaving him without funds for the hire equipment he desperately needs.

There have been a number of issues since his Plan approval, with a Change of Circumstances form submitted on 3 August 2017 to address the need for additional funding for equipment. This still remains pending with the NDIA for action. MND NSW are now providing equipment to Barry in “good faith”.

Case Study 4: Errors With Essential Home Modifications Leading To Safety Concerns

His Support Coordinator has had multiple contacts with the NDIA who acknowledged an error had occurred, that the matter would be escalated and the SC would receive a return call within 48 hours; this was on the 29 November 2017. The SC is still waiting for the call.

Senior staff from the MS organisation engaged in advocacy with NDIA on this matter in December 2017. As a result Barry’s plan was amended in January 2018 in relation to the FlexEquip, which has allowed the issue to be resolved. This however was the only aspect of the plan considered, despite a Change Of Circumstances request being submitted in August 2017; as this client lives this with MND, time is of the essence! Neither Barry nor his Support Coordinator were contacted.

The Support Coordinator has used considerable hours, needing to rectify errors and with poor communication from the Agency, trying to support a participant who has MND.

In addition, Barry’s family have experienced considerable struggles to receive reimbursement from the NDIA for low risk equipment. His Support Coordination budget is now exhausted. Once again, our senior staff are attempting to advocate with the Agency for additional hours, as the plan is not due for review until May 2018.

The NDIA have advised that a considerable Support Coordination budget was allocated. Barry and his wife are legal guardians to his neurologically impaired adult sister, and combined with his MND diagnosis this adds considerable stress and anxiety to his day-to-day life.

Unfortunately as an organisation we find ourselves in a position where we need to continue to provide unfunded assistance to participants, even though this is not sustainable and could have been avoided if the change of circumstances form was actioned by the Agency.

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to Chris’s required home modifications. These documents were acknowledged as received by the LAC and provided to the NDIA delegate. During the face-to-face review, the documents were again provided in hard copy to the LAC, who assured Chris that the funding requested would be reviewed and included in the new plan as readily available.

Upon approval of the new plan, it was clear that the home modifications information provided by the LAC was not reviewed adequately by the NDIA worker. Chris’s new plan included a budget for an external ramp – no reports were ever submitted for this modification (the reports submitted pertained to bathroom and kitchen modifications). The line item in Chris’s plan was strictly for an external ramp modification, therefore Chris has been unable to organise the bathroom modifications as required.

Upon following up by the SC with the Agency, it was clear that an error was made in building the plan, as Chris was informed by the Agency to appeal the decision. Since doing so, no further progress has been made and Chris is still unable to safely attend to personal care or use her bathroom.

Recommendations

MS Australia and MS recommend that the NDIA take action to ensure that:

  • The NDIA Snapshot on Multiple Sclerosis is promulgated throughout the Agency so that people with MS can have the expectation that Agency staff will have improved knowledge of the needs of people with complex, progressive, degenerative neurological conditions such as multiple sclerosis, including assistive technology needs.
  • Support Coordination be mandatory in plans for people with a progressive neurological condition such as MS so that a plan can be implemented appropriately, that items of assistive technology can be arranged in a timely fashion and without the potential risk that funds will be used inappropriately.
  • Support Coordination hours are consistent and adequate to address the complexity of a participant’s needs. There is an urgent requirement to eliminate the need for unfunded SC – this is not sustainable!
  • There is improved communication from Agency staff to participants especially from the LACs who can be difficult to contact, sometimes leave the position and are not replaced or report that they still have no time available to support a person, especially regarding the provision of assistive technology so that people can have informed expectations regarding waiting times.
  • Requests for plan reviews are addressed in a timely fashion, especially those that include equipment requests for participants faced with rapidly progressive neurological conditions such as Primary Progressive MS and improve communication from the NDIA to participants regarding the progress of a review.
  • Plans have contingency funding built in to minimise or preferably avoid the need to frequently review plans.
  • That the level of unfunded support provided to applicants through the pre-planning phase and to participants during the planning, review and appeals phases provided by the MS service organisation is recognised and acknowledged and that discussion commence on how this level of ongoing support can be properly funded in the future.

KEY FACTS ABOUT MULTIPLE SCLEROSIS

  • Multiple sclerosis (MS) is a neurological condition affecting the central nervous system (brain and spinal cord) that affects more than 25,600 people throughout Australia
  • It is the most common chronic neurological condition diagnosed in young adults.
  • MS is most commonly diagnosed between the ages of 20 and 40
  • 75% of people diagnosed are women.
  • MS varies significantly from person to person. For some people, it is a disease that comes and goes in severity with periods of unpredictable relapse and remission. For others it means a progressive decline over time. For all, it is life changing.
  • Symptoms vary between people and can come and go; they can include severe pain, walking difficulties, debilitating fatigue, partial blindness and thinking and memory problems.
  • There is no known cause or cure.