Hon Kevin Andrews MP

Chair NNDIS Joint Standing Committee PO Box 6100 Parliament House CANBERRA ACT 2600

                                                         07 March 2019

Dear Minister,

RE: ADDITIONAL INFORMATION RELATING TO THE JOINT STANDING COMMITTEE ON THE NATIONAL DISABILITY INSURANCE SCHEME: INQUIRY INTO GENERAL ISSUES AROUND THE IMPLEMENTATION AND PERFORMANCE OF THE NDIS

As directed during our presentation to the Committee at the Melbourne hearing on Tuesday 26th February 2019 Multiple Sclerosis Limited is forwarding the following additional information regarding our interaction and view of the National Disability Insurance Scheme rollout to date, the issues we are aware of and what we see as the necessary steps to take to overcome them. Multiple Sclerosis Limited appreciates and thanks the Committee for the opportunity to have the voices of people affected by Multiple Sclerosis heard.

Yours Faithfully

Rob McClay Senior Manager, NDIS Services Studdy MS Centre PO Box 210 Lidcombe NSW 1825

SUPPORTING DOCUMENTATION TO THE JOINT STANDING COMMITTEE ON THE

NDIS – WESTERN SYDNEY HEARING.

Multiple Sclerosis Limited (MS) remains a staunch supporter of the need for the National Disability Insurance Scheme (NDIS) and we maintain the belief that it can be a scheme which will enrich the lives of people diagnosed with Multiple Sclerosis as well as many other disabilities. The flow on effect of a scheme which is working well regarding the economic, social and community benefits are well documented, and MS recognises these and will continue to do its part to make them a reality. For these reasons and the role MS plays in being a strong voice for people living with Multiple Sclerosis, who are either entering or are already participants of the scheme, MS is submitting this document.

Multiple Sclerosis Limited has been involved in the implementation of the NDIS since the trials began and provided input into the design of the scheme at every opportunity. We continue, where allowed, to engage with the Agency to advocate and educate them on the experiences that people living with Multiple Sclerosis deal with on any given day as well as their experiences in navigating the NDIS.

Since the National roll out began in 2016 MS has provided evidence to several committees at both a Federal and State level. We were involved in the Independent Pricing Review in 2017, this Committee’s Inquiry into Assistive Technology and State Government Inquiries into the roll out of the NDIS in New South Wales, Victoria and the Australian Capital Territory. In addition, MS has provided information and data to our peak National Advocacy body MS Australia for their various submissions to Government.

Looking back at our submissions to Government, the NDIS and other inquiries there is a clear consistency of issues that people with Multiple Sclerosis have encountered as part of their journey with the NDIS. A number of these issues have been raised by the Productivity Commission, National Disability Services reports and indeed the National Disability Insurance Agency themselves, but they continue to be a common occurrence that our staff are hearing about and assisting people with Multiple Sclerosis understand and overcome.

The issues at the forefront of our engagement with people who are dealing with the NDIS can be grouped together as follows:

• Access and eligibility – Access Request Form submission, rejection, reviews and support
• Planning processes – assessment and understanding of progressive neurological conditions.
• Post plan support – plan activation and support to implement
• Assistive Technology and home modifications – wait times and underfunding of associated supports
• Communication – inconsistent information
• Transactional Friction
• Unfunded Support

Access Issues

Following are pertinent examples of the above issues brought to us by people attempting to access the scheme or those who may already be participants. These examples represent many such instances that MS comes across on a weekly basis and are an indication where we feel the NDIS still has a good distance to travel before they can realistically say the scheme is supporting people with Multiple Sclerosis as intended in the design.

1. Access and Eligibility

Accessing the NDIS using the Access Request Form (ARF) is not always effective, even for those who meet the eligibility criteria. It appears that often those reviewing the forms have limited disability or health background. There seems to be a definite focus on mobility as being the core indicator of disability for someone with Multiple Sclerosis which indicates a significant gap in the knowledge regarding the many other symptoms which affect function daily. Upon rewording after assistance from MS these applications are accepted. Some examples are:

• Upper limb amputee rejected due to confusion about how this would affect their daily life and be classed as a disability.

• Applications rejected due to no information providing evidence that Multiple Sclerosis is permanent because the applicant was undertaking a level of rehabilitation for a relapse at the time.

• Hidden symptoms such as cognition and fatigue not adequately investigated or understood seeing an applicant rejected even though they are unable to get out of bed before midday without support.

• Applicant rejected initially and again on review who had significant impairment as detailed by neurologists and allied health professionals. Reapplied later and was accepted as ‘early intervention’ which the subsequent planner could not explain the reasoning for.

• Applicant told that the NDIS had to ‘tighten up’ and if she could cook and shop and was able to walk she is ineligible. On bad days this applicant can not leave the house, shower or do other daily tasks but because she can walk she was deemed ineligible.

2. Planning and Review Processes

MS has received considerable feedback from participants, their carers and other members of a participant’s support network regarding the planning process. Whilst the NDIS has released their Participant Pathway they are often shown to be not following it. It has been the long-standing position at MS that the use of Local Area Coordinators (LACs) to be the initial assessors has failed due to the severe lack of understanding that the LACs possess regarding Multiple Sclerosis and disability in general and the strict time constraints via workload that the agency has imposed upon them. The same can be said for many of the planners that are employed by the NDIS. Those participants who can advocate for themselves tend to receive better plans with greater support creating an inequity in plan design with those who do not have the ability or supports to express their reasonable and necessary requests.

• Participant with cognitive impairment, non-English speaking with a partner working full time and three young children. No supports provided to implement first plan seeing subsequent plan cut by 75% due to underspend in first plan.

• A participant answering the door to a planner and LAC being told that they couldn’t possibly have Multiple Sclerosis as they were expecting someone in a wheelchair. Supports were offered based on mobility whilst hidden symptoms such as fatigue and continence were not adequately addressed.

• LAC not understanding the significance of fatigue in a participant’s life denying the need for assistive technology to allow them to move about in the community. The participant was having a good day and ‘looked well’.

• Several participants being told at the start of the planning conversation, before the assessment had begun, that they would not receive support coordination.

3. Post Plan Support

An analogy from one of our staff that best describes the experience that many people living with Multiple Sclerosis go through upon receiving their plan is:

“It’s like giving a brand-new Ferrari to someone who has never driven before, throwing them the keys, mentioning where the accelerator and brakes are located and wishing them all the best.”

• Multiple participants informed by a LAC that they could not offer support as they were too busy, but that MS could.

• Participant informed that even though they did not have support coordination in their plan they could use core support money and pay for one that way.

• A participant’s funding in second plan was cut by 50 percent due to not utilising funds in first plan. Participant is confined to a wheelchair and is now unable to receive personal care on all but three days of the week.

• Nil support from LACs for people needing to submit unscheduled reviews, reviews of reviewable decisions or change of circumstance documents. Participants told to seek assistance from MS as the LAC does not have capacity.

4. Assistive technology and Home Modification

As previously mentioned MS has submitted a response to the Committee’s Inquiry into the Provision of Assistive Technology with MS Australia, and the concerns detailed within that document remain the same. Time lines for approval remain unacceptable for people who are dealing with a progressive condition and whose needs can change by the time approvals are provided. The understanding during the planning process of the amount of time it may take to script, source and quote for home mods and equipment is lacking which sees participants having to choose what supports to receive and hope for funding in future plans to cover the rest. Some of the things we see occurring are:

• Participant waiting for three (3) years to receive a ramp which would allow her to access the community or exit the house safely in an emergency. Application was submitted initially under the Victorian block funded model and transferred to the NDIS. Requests resubmitted and no information forthcoming on time frames, a standard response is “…we will escalate your request” but to where exactly? New application now required as quotes have again expired.

• Home modifications approved in participant’s plan. Carer currently manually lifting participant which has now caused a need for back surgery. Without home modifications participant will need to go into residential care.

• In Victoria confusion reigns as to the interaction between SWEP and the NDIS. Applications submitted to SWEP are returned with information that they should go to the NDIS and the NDIS will not accept them unless they are processed through SWEP.

5. Communication

Communication with the agency and its partners remains a frustrating task. The information obtained by participants, family members, other providers and our own MS staff could lead anyone to believe that the scheme is a national one in name only. The frequency of conflicting information or incorrect information which is disseminated by the 1800 number, local area coordinators, planners, business support officers has remained consistent and hampers a participant’s ability to make the most of the scheme and for providers like MS to work within it. The website is confusing and certainly not intuitive. Some evidence of this poor communication can be found below:

• Participants told that they cannot receive funding for exercise physiology as part of their plan, even though it is listed in the price guide.

• Participant asked about funding for myotherapy and was told yes and no by different people, firstly by a plan manager, then a LAC and finally a senior planner

• Participant told she could use ‘core support’ funding in her plan to pay for specialist neurologist appointments, which she did, only to be told later that this was not permitted.

• Consent for providers to speak to the NDIS regarding participants plan – multiple processes depending who is asked – a phone call will suffice, a conference call with participant is needed, provider must attend an NDIS office in person to fill out paperwork, provider must attend office each time they require to speak to the NDIS about a participant.

6. Transactional Friction

In CY18, MSL submitted 46,201 ($5.577m) claims through PRODA (Provider Digital Access) and 2,501 ($448,791) of these were rejected. – 5.4% rejected 8% of value

94.6% of claims were successful at first attempt. However, this only represented 92% of the claimed amount.

48% of the rejected claims were due to actions of the Agency.

72% ($323,129) of the value of the claims rejected were due to actions by the Agency.

These include

• Arbitrarily closing service bookings without allowing MSL to accrue for the unclaimed amount. A facility which exists in PRODA but for some reason, officials of the Agency do not allow us to utilise. (48% of claims)
• Indexation for FY19, where the Agency formularised the split in available funding between FY18 & FY19. (44%)

The status (as of March 2019) of the 2018 rejected claims is as follows.

                                                                   Error Source                       Grand Total

Status NDIA MSL Unresolved 16% 0% 16% Paid 41% 37% 81% INVOICE 0% 3% 3% Grand Total 57% 43% 100%

16% ($19,066) rejected by the Agency due to their own actions, remain outstanding. MSL has resolved all issues relating to internal causes of rejection.

Unfunded Support

Whilst the NDIS has been rolling out Nationally since 2016 and many people with Multiple Sclerosis are benefitting from their inclusion in the scheme many are seeking support from MS because their plans or supports are inadequate. There are phone calls every day from participants who need help to navigate the system, help to prepare for reviews or somebody to explain their plan. Staff at MS are kept very busy helping people to resubmit access request forms, fill out review documents, speak to the NDIS on their behalf and try to track down who should be providing all this support within the local area coordinator agency.

Often MS will attend end of plan review meetings to assist those people who have no informal supports and the local area coordinator was not involved. All the above and many other acts of assistance MS currently performs unfunded, it is who we are, it is what we do, but our values in this regard do not help in highlighting the supports that are lacking when people get handed a complex and overwhelming plan which is governed by equally complex rules and regulations which are hard to find let alone understand.

In addition, the levels of support coordination provided to participants with Multiple Sclerosis are not consistent with their disability, their capacity to navigate the scheme independently or their level of informal supports. Support coordinators at MS are frequently providing unfunded support coordination to participants who were provided incredibly low support coordination hours in plans, for example 10 or 15 hours, and who are without informal supports and due to cognitive function without the capacity to manage their plan once a support coordinator is no longer available. There is no consistency across the areas that MS provide supports (ACT, NSW, Tas, Vic) in the determination of the amount of support coordination a participant receives. The correlation to disability complexity, level of informal supports, cognitive function and engagement with mainstream supports is thin

• 3. That the NDIA addresses the lack of support provided to participants from their partnered LAC agencies and that recruitment of unskilled and inexperienced staff to perform planning conversations, plan reviews and plan construction cease.
• 4. 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.
• 5. The assistive technology wait times are addressed as a matter of priority with a clear understanding that delays in approvals can cause a significant need for further supports due to the progressive nature of Multiple Sclerosis.
• 6. That the NDIA commits to continue working with Multiple Sclerosis Limited and MS Australia to facilitate a better understanding of Multiple Sclerosis across its own staff and partner agencies. That the NDIA uses the expertise, knowledge and passion within MS organisations to engineer better outcomes for people living with the most common neurological condition diagnosed in young adults.