Response to the NDIS Planning Review
Joint Standing Committee on the National
Disability Insurance Scheme (NDIS)
Submitted by:
MND Australia
On: 6 September 2019
Background
MND Australia is the national peak advocate for motor neurone disease (MND). Together with state MND Association members and our research arm, the MND Research Institute of Australia (MNDRIA) we advance, promote and influence MND care and research with a vision to achieving a world without MND.
The six state MND associations provide direct support and services to people living with MND in all states and territories.
ABOUT MND
MND is the name given to a group of neurological diseases in which motor neurones, the nerve cells that control the movement of voluntary muscles, progressively weaken and die. With no nerves to activate them, the muscles of movement, speech, swallowing and breathing gradually weaken and waste, and paralysis ensues.
MND affects each person differently with respect to initial symptoms, rate and pattern of progression, and survival time.
Average life expectancy is 2 to 3 years from diagnosis.
There is no known cause for MND (except in a very small number of genetic cases), no effective treatments and no cure. There are no remissions and progression of MND is usually rapid and relentless creating high levels of disability and a consequent need for a wide range of progressively changing supports.
THE CHALLENGES
The social and emotional impact of MND is amplified by its complex nature, the speed of its progression and the spiraling series of losses that pose:
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huge problems of adjustment for people who have MND;
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an escalating and stressful burden on carers and families
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a challenge to health professionals, disability services, community care, and aged care providers involved in meeting the variable, progressing and complex care needs, particularly in regional, rural and remote areas; and
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the need for a coordinated response that addresses the person’s disability Timely early intervention and access to expert multidisciplinary care, assistive technology (aids and equipment), specialist planning and assessment and coordination of support, including a proactive framework for decision-making, play vital roles in maintaining quality of life and independence. It also helps people to plan ahead to prevent crisis and avoidable hospital/residential aged care admissions.
Although early intervention will not slow down the disease process in MND, it will strengthen the informal supports available to the person, including supporting the primary carer to maintain the caring role and their own health and wellbeing.
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NDIS planning and people living with motor neurone
disease (MND)
Submission
MND Associations across Australia have worked to support people with MND eligible for the NDIS since its inception, offering pre-planning support and information and, where requested attendance at Planning meetings. For the past six years MND Advisors have witnessed the broad spectrum of quality of NDIA Plans. For the year to January 2017, in NSW, 100% of all Plans for people with MND were inadequate and were referred for Plan Review.
The NDIA and MND Associations have worked together at a national level to develop an MND specific Practice Guide to support planners to take into account the progressing needs of people living with MND when developing plans. The Planning process has consequently improved dramatically over the last 12 months. Now, however, with an increased imperative for the NDIA to make significant changes to the Scheme the process is at risk of, once again becoming a box ticking exercise, with differing plan processes and plan quality being experienced in each state or even in each region within each state. The NDIA and MND Associations are currently working together to update the Practice Guide and the NDIA has undertaken to more effectively disseminate and promote this resource.
In most states and territories 80 to 100% of all people with MND become members of the MND Association. People with MND turn to the Associations for expert advice and education which places MND Associations in an ideal position to become pre planners/specialty agency planners. The projected numbers of people with MND eligible for the NDIS (900) make this target group an ideal pilot cohort for expert pre planning intervention.
In this submission MND Australia will address the key points to be reviewed by the Senate Committee as part of its inquiry into NDIS Planning as they relate to people living with MND. MND Australia will also include recommendations regarding the use of the specialist skills and knowledge of MND Associations to undertake planning for this small and unique disability group as recommended by the Productivity Commission in their review of planning.
a. the experience, expertise and qualifications of planners; Experience has shown that when NDIS planners lack knowledge of MND, poor plans and multiple plan reviews are generally the outcomes, with some proceeding to judicial review.
Since the introduction of the NDIS MND Associations covering each jurisdiction have worked to support people living with MND and their carers throughout the planning process. MND Association Advisors work to provide pre-planning support and information and attend planning meetings when invited to do so.
At the national level MND Australia has worked with the NDIA to effect systemic change to ensure people living with MND have access to planners with some experience of MND or progressive neurological conditions whenever possible.
Over the last few months overall the planning process has improved for people living with MND. Most people are now referred directly to a planner rather than an LAC which has generally had a positive impact and minimized the need for multiple plan reviews.
However, the large turnover of NDIA staff, including planners impacts on building experience and expertise. The NDIA has committed to identifying key lead planners in each region, but this remains sporadic
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b. the ability of planners to understand and address complex needs; MND is a complex and progressing life limiting neurological condition with an average life expectancy of just three to five years. Time, as well as an understanding of the complex needs of people with a diagnosis of MND is, therefore of the essence in initiating effective services and supports as rapid paralysis and increasing disability are hallmarks of MND.
Most planners have little experience or understanding of progressive neurological conditions such as MND and the wide ranging disabilities that these conditions create. MND Associations have worked with the NDIA to develop an MND specific Practice Guide which highlights needs that may arise in the immediate or near future. When used, these guides have had a positive impact, however, not all planners in all States and Territories are aware of the document or choose not to refer to the guide at planning meetings. As this is an internal NDIA document MND Association staff can only inform planners and participants that the guide exists.
It had been hoped that the introduction of the Complex Care Pathway would provide a mechanism for people with complex conditions such as MND to be referred to specialist planners from the outset. However, we now understand that a diagnosis of MND alone is insufficient to be allocated to this pathway – the person is required to have additional complex issues, e.g. be involved with the justice system, have significant mental health condition or be homeless.
c. the ongoing training and professional development of planners; In our experience most planners have had little, if any experience or education with MND. MND Associations have worked with the NDIA to develop MND specific fact sheets and resources and MND Associations offer information and education for NDIA staff. However, the high staff turnover and rapid roll out of the NDIS has precluded access to these resources for many existing planners.
d. the overall number of planners relative to the demand for plans; For a person with a rapidly progressing, life limiting disease delays impact not only the person with MND but also their carer, family and the broader community and dramatically increases the cost of supports. To date many people with MND have experienced waiting times and delays in getting plans approved.
In South Australia an MND specific planner has been employed who works closely with the MND Association Advisor to effectively meet demand. However, this model is not available across the country. It is hoped that the introduction of the neuromuscular community of practice will improve access to sufficient planners with an understanding of MND to meet demand.
e. participant involvement in planning processes and the efficacy of introducing draft plans;
Person centered planning is vital to enable the best plans to be produced. This inevitably involves including the participant in the planning process.
With the roll out of the full scheme and the need to bring hundreds of thousands of people into the scheme in a relatively short time, it could be prudent to think again about the possibility of introducing draft plans. This would greatly benefit people with MND as it would enable conversations to occur pre the approval of a plan and reduce the need for time consuming reviews.
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f. the incidence, severity and impact of plan gaps; The time gaps between plan reviews and initial plan implementation places a huge burden on families and carers.
Up until fairly recently almost every plan prepared for a person with MND by NDIA planners was referred for an unscheduled plan review with a number being referred to the tribunal. This is improving but specialist planning for people with progressing complex neurological conditions would drastically reduce the need for plan reviews and thereby cost to the NDIS.
g. the reassessment process, including the incidence and impact of funding changes; The reassessment process and funding changes negatively impacts people living with MND who have limited time and progressing loss of function.
Information regarding reassessments is at times, not communicated to Coordinators of Support. This leads to significant time and effort for the Coordinators of Support in chasing up a new plan, resetting milestone dates and redoing administration tasks A reduction in budget, often a consequence of a new plan, and the lack of communication impacts on the providers ability to plan and claim outstanding invoices.
h. the review process and means to streamline it; We believe that a model whereby pre-planning by experts to be endorsed by NDIS Planners would work well for people with complex, progressing and life limiting conditions such as MND and reduce the level of re-planning and reviews as well as help avoid legal challenges.
Expertise often lies outside the NDIA and is often ignored. A greater degree of trust is needed to provide more timely supports to people with disability. Expert organisations such as MND Associations providing pre-planning and planning would greatly reduce the burden on the NDIS, decrease wait times and significantly decrease the cost of implementing a Plan. This would also reduce the number of appeals.
MND Australia estimates that of the 2000 people diagnosed with MND nationally approximately 900 are currently eligible to be NDIS participants. In 2018/19 MND Associations registered 718 people newly diagnosed with MND, of whom it is estimated that 50%, or 359, became eligible to be participants of the NDIS.
i. the incidence of appeals to the AAT and possible measures to reduce the number; MND NSW reports approximately one appeal per year. There have not been any in Victoria in recent times.
Measures outlined above regarding greater involvement of expert organisations such as MND Associations would be a positive measure to reduce and prevent appeals to the AAT.
j. the circumstances in which plans could be automatically rolled-over; It is unlikely that many MND participants would be able to have plans that could be rolled over as their needs generally change so rapidly.
k. the circumstances in which longer plans could be introduced; Longer plans are not appropriate for the MND cohort. Many have shorter plans e.g. 6 months.
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l. the adequacy of the planning process for rural and regional participants The relatively low incidence of MND leads to the requirement of specialist knowledge and expertise in planning, supporting and delivering services to people with the disease. This low incidence also means that MND has a ‘thin’ population distribution generally, which is magnified in rural and remote areas. To have planners knowledgeable about MND in all regional/rural areas is hard to achieve. Hence participants in these localities are disadvantaged.
Once again measures outlined above regarding greater involvement of expert organisations such as MND Associations would be a positive measure to improve the planning process for rural and regional participants.
m. any other related matters. The Productivity Commission review of planning indicated that the NDIS should consider the use of specialist skills and knowledge of disability agencies to undertake planning for small and unique disability groups:
Specialist planning and people living with motor neurone disease
Motor Neurone Disease Associations across Australia are professional organisations that have been in business for over 35 years. Each Association employs professionals with a background in health and/or disability as MND Advisors who are expert and experienced in MND and its trajectory and who work closely with neurologists, MND clinics and broader health, disability and aged care services.
Recommendation
MND Australia recommends that:
Stage 1: A pilot program of specialty agency planning be conducted using people with MND who are participants MND Australia and its State Association members undertake preplanning for participants living with MND and develop a draft plan for submission to delegate Planners for approval The location of the pilot to be agreed.
Stage 2: On successful completion of the pilot, the engagement of State MND Associations as pre-planners and planners for participants living with MND be confirmed, and NDIS planners remain the final authority for the approval of participant plans
The benefit of a single pre planning and planning referral resource such as the MND Associations would:
Improve the experience for people with MND Deliver better realistic plans for people with MND Dramatically streamline the Planning process Reduce times for plan approval Maintain NDIA’s legislated role to sign off as the delegate Reduce the time and cost of planning Reduce the incidence of re-planning requests in the first 12 months Reduce use of the appeal process Retain NDIA oversight and audit.
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MND Australia thanks the Joint Standing Committee on the National Disability Insurance
Scheme for the opportunity to respond to the NDIS Planning Review. We would be pleased to
provide further information or meet with the committee if required.
Carol Birks
CEO, MND Australia
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