Response to the NDIS Planning Review
Joint Standing Committee on the National
Disability Insurance Scheme (NDIS)
Submitted by:
MND and Me Foundation
On: 6 September 2019
Background
The MND and Me Foundation
The MND and Me Foundation Limited (the Foundation) was established by Scott Sullivan, a husband and father of two children. Scott was diagnosed with Motor Neurone Disease in 2010 at the age of 38, and he sadly passed away in April 2014.
The Foundation is a not-for-profit organisation that Scott formed to raise awareness of MND and its impact in the community. Scott saw a desperate need to assist people living with MND, as well as their families, to maintain their independence and quality of life for as long as possible.
The MND and Me Foundation Board – formed in 2011 – has assumed responsibility for governance and strategy of the Foundation to ensure the changing needs of people living with MND are met. The Board is united in the Foundation’s mission To Care and To Cure. Until a cure is found, it will continue to work together to help fund MND research and treatment initiatives to improve the lives of people diagnosed with MND.
The Foundation works closely with corporate entities and other Australian MND and PND (progressive neurological disease) associations in a financial and operational capacity to provide care and services to people living with a PND. This deliberate collaborative approach will ensure that no one faces MND alone.
All Queenslanders with MND (approximately 350 people) deserve equitable access to support services when and where they need them. While there are government funded support programs available, the huge variables associated with MND often mean these systems are too slow to react and struggle to keep up with the progressive nature of the disease.
Ensuring a family impacted by Motor Neurone Disease in Queensland receives the necessary support services required to maintain quality of life is extremely complex.
Disease Complexities
Unknown reason as to how Motor Neurone Disease starts Complicated and often prolonged diagnosis Multiple disease origin points Wide-ranging ages of onset Massive variations in time from diagnosis to death (months to 25 years)
Health/Disability System Complexities
Convoluted access rules and regulations Multiple geographical health districts with different service offerings and focuses Numerous State and Federal programs Aged based services – National Disability Insurance Scheme (NDIS) and My Aged
Care
Lack of MND aware/proficient service providers No state-wide register of people with MND
Queensland Complexities
Massive geographical spread Small and rapidly changing MND populations in regional and remote areas
The Foundation’s mission critical NDIS service is Support Coordination.
Our Support Coordination service operates under the name of “Spark NeuroCare” and is run in partnership with MS Queensland. Spark NeuroCare has 163 MND clients.
The collaboration with MS Queensland has allowed us to effectively develop a service that now reaches approximately 84.8% of the Queensland population.
Support Coordinators work out in the community. They are on the ground and in the homes of people living with MND – assisting with:
Advice, information and resources Links to local service providers and suppliers of aids and equipment Referral to wellness and educational programs and events Referral to allied health services such as physiotherapy, occupational therapy, speech therapy and dieticians Ways to manage everyday life
Accessing National Disability Insurance Scheme (NDIS) or My Aged Care (MAC)
NDIS support coordination.
We currently have 25 Support Coordinators assisting people with MND in the below regions:
Brisbane Cairns
Sunshine Coast Ipswich
Bundaberg Toowoomba
Rockhampton Gold Coast
Mackay Townsville
Wide Bay
Motor Neurone Disease
Motor Neurone Disease is the name given to a group of terminal diseases in which the nerve cells (neurones) in the brain and spinal cord that control the way we walk, talk, eat, swallow, and breathe progressively die.
In some countries, MND is known as Amyotrophic Lateral Sclerosis (ALS), and in the US, it is also called Lou Gehrig’s disease.
When the neurones begin to die, the muscles that they control can no longer receive messages from the brain. The muscles become weaker and weaker, and eventually stop working, leaving people motionless, unable to talk, and trapped in their bodies. In most cases the mind is left intact, but some patients with MND have a form of dementia known as Frontotemporal Dementia.
In MND, no two people are the same – where the weakness first starts, how the weakness progresses, and the rate at which the weakness progresses are different from person to person. Although some people can live a long time with MND, the average life expectancy is 27 months following diagnosis.
MND Fast Facts
MND is a progressive, terminal neurological disease MND can strike anyone There is no known cure and no effective treatment for MND Each day in Australia two people die from MND Each day in Australia two people are diagnosed with MND People with MND progressively lose the use of their limbs and ability to speak, swallow and breathe, whilst their mind and senses usually remain intact Average life expectancy is 2.5 years* More than 2,000 people have MND in Australia of whom 60% are male and 40% are female* Mean time from onset to confirmation of diagnosis is 10 to 18 months* Prevalence of MND in 2015 was 8.7 per 100,000 people or 1 per 11,434
Australians*
Approximately 58% of people with MND are under the age of 65* The total cost of MND in Australia was $2.37 billion in 2015. This equates to $1.1 million per person* For every person diagnosed with MND it is estimated that a further 14 members of their family and their friends will live with the effect of MND forever
*Source: Deloitte Access Economics report Economic Analysis of MND in Australia.
It is important to note that prior to receiving a diagnosis of Motor Neurone Disease, the vast majority of our members have lead full, active healthy lives. They have many valued roles within their families and the wider community as well as achieving successful careers free from disability. Most have not even heard about MND, let alone the NDIS or Service Providers. With this in mind, it is also extremely important to acknowledge that at the time of their initial interactions with NDIS, many of our members are very newly diagnosed and are still actively grieving in response to the news that they have a terminal illness that currently has no treatment, no cure and a life expectancy of 2-3 years following onset of symptoms. It is extremely confronting and often overwhelming when they are immediately asked to look forward into a very uncertain future and make informed predictions about what life may have in store for them over a 6 to 12 month plan period.
As a member focused Charitable Foundation, we aim to support families to feel that they have a voice and that they are listened to in the NDIS space. The following feedback is compiled from direct informal feedback from NDIS participants who are currently living with Motor Neurone Disease (MND).
NDIS planning and people living with motor neurone disease (MND)
Submission
Terms of Reference - The experience, expertise and qualifications of planners
This issue creates extreme stress and anxiety for new NDIS participants with Motor Neurone Disease (MND).
Families have stated that it is very disheartening and distressing during their initial interactions with their assigned planner when they ask their planner if they have any direct knowledge or experience with MND and their response is:
“No not directly, But I have had a quick look online”. Unfortunately, this appears to be quite a common response as several families have provided this same feedback. They have also stated that they found this response to be extremely concerning and disrespectful. (Regional offices where this response has been received Robina, Oxley,
Logan)
It is our experience that many participants view the role of a Planner to be a position of power and control. Participants have expressed great concern that if the planner has no knowledge or direct experience with MND, that this could potentially mean the difference between a very positive plan outcome and a very poor outcome.
As described by participants, a positive plan outcome is considered to be one where the plan is robust and flexible enough to meet increasing support needs at the same pace as the participants’ best projected functional decline within the plan period. Whilst a poor planning experience may result in a plan that will require a number of light touch or full reviews as it contains many gaps due to the lack of insight into the unpredictable nature of MND and potentially other progressive Neurological conditions.
One participant who attended their initial planning meeting in Logan discussed their extreme concerns in relation to their Planner’s level of experience when during the development of their participant statement, the planner began to cry and stated “Oh you poor thing, that’s so sad I don’t know a lot about MND but I will look at all the fact sheets you have provided with your pre-planning notes, that will be so helpful!” This kind of interaction does not instill confidence in participants.
Although the NDIS access team advise that all NDIS plan meetings for participants with an MND diagnosis will be facilitated by a Senior NDIS Planner, this is not always implemented. Local Area Coordinators (LAC) have facilitated many planning meetings. We have been present at planning meetings where the Local Area Coordinator has introduced themselves to the participant and then proceeded to open the meeting with the following statement “due to the significant back log and wait list for plan meetings, I will be facilitating your meeting today. I will gather information and then I will provide a draft plan to one of our Senior Planners for final sign off”. This process
increases the potential risk of vital supports being missed out of plans as LAC’s are not required to have the higher level skills and knowledge that a Senior Planner brings to this role. It also extend the timeframe from planning meeting to plan implementation. This is time participants living with MND don’t have. (Regional offices where LAC’s have facilitated planning meetings include Robina, Oxley, Mt Gravatt)
Recommendations:
All planners that will be facilitating meetings with participants living with MND should undergo mandatory training in MND prior to facilitating any meetings. This training is very accessible via the MND NSW MND Aware online training modules that can be accessed at https://www.mndnsw.asn.au/education/573-mnd-aware-free-online training.html All planning meeting should be facilitated by Senior Planners or Special Subject Matter experts in each regional office. All plan meetings should take place in the participants’ home environment so that Planners are able to gain valuable insight into the likelihood that Major Home Modifications will be required for participants to achieve their stated goals of remaining in their own home.
Terms of Reference - The ability of planners to understand and address complex needs
The ability of planners to understand and address complex needs should be assessed and addressed on an individual basis. Whilst many planners clearly demonstrate high level skills and knowledge in this area, sadly, there are also many who display much lower levels of competency.
Each planner’s level of competency to understand and address complex need is clearly reflected during discussions throughout the planning meetings, as well as in the resulting plans.
The continued high levels of inconsistency in decision making across NDIS regions is a direct reflection of the individual planners understanding of complex needs and their ability to apply strategies that are flexible and practical whilst remaining within operational guidelines.
Two examples of note that clearly reflect a skills deficit in the planners understanding complex needs include:
A planning meeting held at the Logan NDIS office, the planner offered the following solution to a participant who had just discussed the need for a platform lift to be considered as part of a Major Home Modification due to their high set home with the only internal and external access being via 13 or more stairs:
“Unfortunately, NDIS will not fund a platform lift or any Major home Mods really for someone with MND sorry. It just doesn’t fit within Reasonable and Necessary, or the
Value for money guidelines due to the uncertainty of how long you would be able to use it for. We have to be careful with how we spend the community’s money. What I can do is to make sure you have enough funding in your core support budget so that you can hire two support workers at a time to carry you up and down the stairs”
This response was not only considered offensive to the participant and his family, it is also in stark contrast to that in appendix A (see attached) which is an example of a platform lift that was approved without any hesitation via Robina office where the Occupational Therapist stated that the application clearly does not appear to meet the Major Home Modification criteria as the home was purchased in 2019.
A Planner informed the participant’s Occupational Therapist “Your participant can just purchase their mobile shower commode from consumables” This directive contradicts the operational guidelines for this budget category.
We have also received feedback from community stakeholders, such as Allied Health Professionals who have stated that they have experienced conversations with planners where the following questions and statements have been made: “how long will xxxxxx actually live for”, “it’s not value for money for the NDIS to fund XXXXX as they are likely to pass away soon”; “The agency won’t consider funding complex home modifications as the client can still walk, try applying again when they require a wheelchair” These Allied Health professionals have described this language as disrespectful and offensive.
Further evidence of deficit in planner skills and knowledge of complex needs is observed with the inconsistencies across regional sites as to the message delivered around whether participants can purchase level 3 or 4 equipment or rental only.
When planners are instructing allied health providers and support coordinators that all assistive technology equipment required for participants living with MND must be rented as a purchase will not be approved, it needs to be made very clear to planners that in Queensland the rental funding allocation does not cover rental of necessary equipment over 6 month plan period (~$7000 allocated). If the person requires the hire of an eye gaze device to stay connected to the community for example, their rental budget is fully utilised straight away. If they require hire of a power wheelchair, commode, bed, mattress, hoist, sling and pressure cushion this budget will not suffice.
Further inconsistencies in decision making by planners based on skills and knowledge is observed in plan outcomes whereby participants on the Gold Coast have been approved for Complex Home Modifications (example attached appendix A) although this does not meet the home mods guidelines as they purchased the house in 2019, and Participants in Redland Bay and Logan have had their complex home modifications declined even though they meet the criteria (see appendix B).
Whilst Brisbane participants/ therapists have been advised that purchase of complex equipment will not be funded so do not bother submitting an AT request for purchase. Gold Coast participants have had differing advice and have had power wheelchairs approved for purchase.
Recommendations:
The NDIA consider implementing independent service quality auditing with a focus on a random samples across all NDIS regions, Assistive Technology requests, approval rates and declines. Special focus should be on the decision making measures used by individual planners / assessors to reach these outcomes. The NDIA to work closely with service providers to fully understand the costs of what is available in the market – especially in the rental space. The NDIA to involve all Queensland regions and relevant community stakeholders to review current MND Guidelines and ensure consistent implementation of updated Guidelines.
Paul Olds
CEO, MND and Me Foundation