When people living with motor neurone disease (MND) are refused or have difficulty accessing funding from the National Disability Insurance Scheme (NDIS) the consequences can be disastrous – for their health, and for their ability to make their own choices.
Difficulties with the NDIS in the MND community have led to reports of funding being cut1 for at home supports, long wait times for equipment2 like electric wheelchairs and even support arriving so late3 that it can no longer be used. Shockingly, some reporting suggested that support arrived after a person’s death.3
Without NDIS support, many people living with MND may feel like their voices go unheard and cannot do basic things such as move, eat, communicate with loved ones or enjoy their passions. Basics that so many other Australians might take for granted.
There are real solutions, however, to help make it easier when accessing funding for support from the NDIS.
Through education, learning from the MND community and making changes to how applications for NDIS funding are assessed, it is possible to create more choices for living with MND and disability. Choices that can help to better manage medical issues and be safer, and to have the same rights to be included in Australian society as anybody else.4
MND affects a person’s brain and nerves.5 The disease causes weakness in muscles across the body, and it gets worse over time.6 Eventually, the weakness causes paralysis of muscles used to walk and other movement, for speech and to breathe. Ongoing and timely medical support that changes to meet a person’s needs7 is critical as the disease progresses – for some, those needs may change in a matter of months.
For example, a person may need help to change the position of their body for making breathing easier as the muscles operating the lungs weaken. Or, the assistance of a speech pathologist to check swallowing ability for eating and drinking.
Without timely medical care people living with MND carry the burden of a higher risk of medical emergencies. Symptoms may worsen and reduce life expectancy when the disease has already, tragically, cut life short.
Growing paralysis from MND and its associated disability has terrible impacts beyond physical health, too. Not being able to walk means it can become very difficult to work in a job, go shopping, visit the bathroom or simply move about the house.8 Problems with typing on computers and talking on the phone may result in feeling cut off from the world, of not being able to hang out with friends.
Being unable to easily enjoy life and have hobbies, like reading books, playing games or streaming television and movies, makes it harder to relax, especially during a difficult time.
Support and assistance for choosing how to get around, communicate, use technology and other daily activities is just as important for people living with MND. Like medical care, the needs for managing disability as part of daily life change, and it can be fast.
It is the ability to make choices about daily life with MND that is a critical part of dealing with the disease, and which makes accessing support from the NDIS to have choices so important. The NDIS are obliged by the Convention on the Rights of Persons with Disabilities’ (CRPD), an international treaty, to try and "protect and prevent people with disability from experiencing harm arising from poor quality or unsafe supports or services" provided under the National Disability Insurance Scheme".9
Having choices for living with MND through the NDIS means that it is possible to have the same rights to be included in society, to be able to have medical care, see friends and be a part of the community like everyone else.
Yet, when there are problems accessing support through the NDIS, it becomes a human rights issue. The safety and dignity of people living with MND is put at risk.
For some people living with MND, the process of applying for support from the NDIS has been manageable, and often with help from others to navigate the system.10 The NDIS helped provide access to things like ramps for easier wheelchair movement and help at home with preparing meals and cleaning. Others, however, have found the process hard, and have been refused NDIS funded support.
Accessing support from the NDIS requires going through an application and planning process.11 A refusal occurs when a member or members of the NDIA perform an “eligibility assessment” of a NDIS application, and the application is found to not meet certain criteria. For example, one criteria is that an application must be for a disease or medical condition that caused permanent impairment resulting in disability.12
There are the basic requirements when applying, too. Generally, NDIS application forms are text based and in English, although verbal applications are available. Comprehensive documents are needed as evidence of medical conditions and other needs.
The process of applying and being assessed for eligibility, however, can be inaccurate, and unfair.
Evidence suggests that NDIS applicants and participants have been asked to explain their condition repeatedly and the need for increasing care due to changing needs13 , or that the process is time consuming.14 Others have had to provide more “proof” of their condition and its associated disability, or respond to queries about their applications during trying times or circumstances, such as over the phone with little time to prepare.13 Wait times for an application decision have been lengthy, and sometimes support has arrived too late.3
There is a need for the NDIS to be more culturally aware and inclusive of Aboriginal and Torres Strait Islander culture.15 The English language of NDIS information may limit awareness of support available for those from non-English speaking backgrounds.16
In turn, the barriers to the NDIS can significantly increase the risk of medical issues and emergencies for people living with MND. The barriers also limit the ability to participate in the regular activities of daily life that so many of us take for granted, to have a choice or say in how support is accessed, and to enact their human rights.
A lack of NDIS support risks worsening the burden people living with MND already experience and the sense of indignity from feeling like they don’t belong in the Australian community.
Changing how eligibility assessments are conducted is not easy. Government systems like the NDIS can be large and complex and take long periods of time to change.14 However, greater awareness, education and understanding of neurological and neuromuscular conditions like MND across the National Disability Insurance Agency (NDIA), whose staff administer the NDIS, is important.13 Better understanding can help people with the conditions to access improved support and when participating in assessments.
A key part of education is increasing understanding of the fact that people’s needs can change over time.13 Ensuring support is appropriate and ongoing for changing needs is critical for timely medical support and the ability to participate in daily life. The frustration felt by NDIS applicants and participants can be addressed by reducing the need for them to repeat information and improve decision making on assessments.
Education must also focus on recognising and addressing invisible symptoms, such as neuropathic pain, fatigue and cognitive issues. A focus on invisible symptoms is best managed by past guiding principles about MND and similar conditions used by the NDIA. The principles, however, need to be reintroduced, and better defined.
Education should also be supported by a substantial core group of staff (a Neurological Community of Practice) with expertise in progressive degenerative, neurological and neuromuscular conditions who can act as a point for referral for all NDIA staff and contractors.
Changes to NDIA communication will help participants to access information about why their access has been denied or their plans cut.13 Information provided by the NDIA is not always clear or easy to understand and access.
Clearer and more timely communications are required for participants about NDIS decision-making processes, timelines and expectations. Clearer communication includes general information provided on the NDIA website and plain language information shared with individual applicants and participants.
Working with the NDIA on education and communication can be accomplished in a constructive, co-operative way.13 The establishment of a neurological voice within the advisory and consultative structure of the NDIA would ensure fair representation and better support for the MND community and help to address many of the issues associated with eligibility assessments.
A neurological voice could be established in two ways. First, through the Industry Chief Executive Forum (ICE Forum). The ICE Forum provides an opportunity for two-way collaboration where the NDIA can test policies, practices and processes to improve the NDIS with ICE Forum members and to gather views and feedback on key issues from Forum members.
In the second instance, the creation of a Neurological Advisory Group to provide a strong voice on behalf of people who participate in the NDIS, and including experts, service providers and people with lived experience of neurological conditions. The group would be of enormous benefit to the NDIA, to provide advice and recommendations on improving the NDIS for participants living with these conditions.
The network of MND Associations located across Australia also continue to be important sources of information and support for navigating the NDIS and managing challenges with eligibility assessments for people living with MND. The MND Associations have had a lot of experience with the NDIS. MND Association Advisors and Support Coordinators, the national MND Info Line and other sources of support can help with preparing NDIS plans and working with them.
With changes to education, communication and how the voices of those with neurological conditions are heard, it is possible to reduce the suffering and burden from a lack of access to NDIS support for people living with MND.
But making changes that involve the MND community are also a step towards a fairer Australia: where more people feel safer, respected, and like they have more choices for dealing with the challenges of daily life like anybody else. A place where more people are able to participate in society, on their terms, and with greater dignity, as much as possible.
Learn more about the NDIS, MND and human rights: