Can I be eligible if I do not currently receive disability benefits? Expand If you do not receive disability benefits, you may still be eligible for the NDIS. You can call them on 1800 800 110 and ask to make an Access Request at any time. After this, you will have to provide information on your disability and how it affects your daily life. You can view an example of the Access Form from the Summer Foundation here.
Can people with ME/CFS get support from the NDIS? Expand The NDIS legislation sets out access criteria that are not diagnosis based. Instead, people are able to access the NDIS if they have a lifelong condition that significantly reduces their capacity to live an ordinary life. In theory, and as set out in law, there is nothing preventing people who have ME/CFS that significantly impacts their day-to-day function from successfully applying for and receiving the NDIS. It can be difficult to balance hope for improvement with the requirement to use the language of disability and permanence when applying for the NDIS. It is important to note that patients are only eligible for the NDIS if they, and their doctor, believe their condition to be permanent. Despite the fact that there is no reason that people with ME/CFS should be excluded from the scheme, we know that, in reality, many people with ME/CFS do experience some difficulty accessing the NDIS. People may be rejected on the basis that their condition is not lifelong (the need for a disability to be 'permanent'), or that their functional capacities do not meet the minimum criteria of significant impairment. There are also sometimes issues due to the fluctuating nature of the condition that some people experience and, on occasion, assessors have rejected people on the basis that the condition has not been fully treated. Finally, we know that a number of people with ME/CFS have been told that ‘chronic fatigue syndrome’ is a health issue and not a disability, or that ME/CFS is 'not on the list'. Other disabilities, including mental health conditions and episodic illnesses, are also facing these challenges. None of these things should be grounds for outright refusal, and we are seeing a number of positive changes as the scheme moves out of its initial set-up phase. Rejections can be disheartening, especially as people with ME/CFS have often had previous negative experiences where their illness has been belittled or disbelieved. It is important to know before you begin the process that applying for the NDIS might take up a lot of emotional energy. However, as long as you meet the ‘significant functional impairment criteria’, you have had the disease for a significant period of time, and you can be well organised about your application, people with ME/CFS absolutely can (and do) successfully access the scheme.
Do you have any other resources? Expand We have developed a fact sheet and a webinar about how to access the NDIS for people with ME/CFS. We are not currently planning any more live webinars, but you can access a recording of one of our recent webinars via vimeo. You can find out more on our Financial literacy resources page. We have developed a document called 'ME/CFS and the NDIS: A guide for GPs completing an Access Request Form', which we recommend you take to your doctor when beginning the process of applying for NDIS. You can download the document here. There are also heaps of resources on the RIAC (Rights, Information and Advocacy Centre) website under 'Our services - NDIS appeals'. Click here to access RIAC resources.
How can I get support for applications and appeals? Expand There are number of organisations that have been funded to help people appeal NDIS decisions. This support can be through a skilled support person who can act as your advocate, or it can help you to access funding for legal services. A support person can assist by explaining the appeals process, helping you to prepare documents, attending hearings with you, and providing you with advice and support, so you are better able to represent yourself. Further information about Legal Aid is available here.
How do I appeal? Expand If you disagree with the outcome of your NDIS application, you can appeal the decision within three months of receiving the rejection. There are a number of agencies who are funded to assist with NDIS appeals. You can access a list of agencies local to you using the Disability Advocacy Finder. The first step in an appeal is to request an internal review. A copy of the form you will need to fill out will be included in your rejection letter. You can also find it here. You will need to answer a number of questions about why you believe the decision was incorrect. To ensure you make a strong case, you may wish to seek support from one of the agencies funded to help people through NDIA reviews (see 'Where to get support' below). If your internal appeal is rejected (most are), you can request a review by the Administrative Appeals Tribunal (AAT). The AAT exists outside of the NDIA. You have 28 days to request an AAT review after you receive notification of the NDIA’s final decision. Your first step will be to fill out a form that can be found on the AAT website or write them a letter. You can access more information here. The AAT’s first step will be to see if an agreement can be reached between you and the NDIA. If it cannot, then the AAT will hold a hearing to determine an outcome. All relevant documents need to be submitted 14 days before the hearing. It is important not to miss that date. If you are unhappy with the results of a AAT appeal, you can choose to go to the High Court. However, this option is only available if you believe that the AAT has made a mistake in interpreting the law.
How does the NDIS work if I already receive benefits from disability services? Expand People who are already in certain state and territory programs will receive or will have received a call from the NDIA, the agency responsible for rolling out the NDIS, when the scheme becomes available. You will only receive this call (or only have received this call if your area has already transitioned onto the NDIS), if the program you receive support from is on the list of programs considered to have similar eligibility criteria to the NDIS. Otherwise, you will have to apply by contacting the NDIA directly. You can also make a new application at any time (providing three months have passed since any formal rejection from the scheme), even if you were told at rollout that you were not eligible.
How to apply and who can fill out my form? Expand You can contact the NDIA directly on 1800 800 110 and ask to complete an access request form. We highly recommend that you use the language of disability throughout your interaction with the NDIA – and refer to ME/CFS as myalgic encephalomyelitis if possible. For example, 'I am disabled with myalgic encephalomyelitis and I would like to complete an access request form'. You should allow up to 30 minutes for this call. You should be able to fill out most of the form yourself, but you can also nominate someone to do this on your behalf (although you must be present when they do this). There are also some advocacy organisations who may be able to help you to do this, although this will vary by state. It is extremely important to be able to supply a coherent medical history, including when you were diagnosed, treatments that have been tried, tests that have been done, etc. Our telehealth nurse can help with this. You will also need to submit a supporting evidence form, which should be filled out by a health professional referring to the NDIS domains. You can download our NDIS and ME/CFS for GPs guide here. If you have a specialist who knows your circumstances well, then you can ask them to fill it out, if not, your GP can fill it out for you. The more detail your doctor can provide, the better, so be sure to let them know beforehand that you would like them to complete the supporting evidence form for the NDIS, and make sure you book a double appointment if necessary. As well as specifying your level of impairment in the supporting evidence form, we also strongly advise you to ask your doctor for a letter specifying that they now consider your condition to be permanent. It should say something like, 'XXX has been a patient of mine since [yr]. At this point, I consider that their level of impairment is unlikely to show significant improvement and I consider their condition to be permanent.’ You can print an example letter which can be taken to your doctor here: Access the letter here. Reports from specialists are extremely helpful. We recommend getting an occupational therapist report that focuses on functional impairment if possible (for example, WHODAS or AMPS functional assessment tests). The NDIS will not pay for this if you are not yet accepted onto the scheme (supports cannot be backdated), but an occupational therapist may be accessible through a chronic disease management plan which should be available through your GP. You can view an example of an access form through the Summer Foundation here.
What do I do if I am rejected? Expand First of all, you should consider the grounds on which you were rejected. If you believe that the rejection is incorrect, we recommend finding an advocate to help you to appeal. The Disability Advocacy Finder is a good resource for doing this. You can also submit a new application after three months have elapsed since the previous rejection, if you feel that you are in a position to make a better application. This may be faster than working through the appeals process. You may also consider applying for aged care for under 65s. In order to get an aged care assessment, you must have a letter of exhaustion (a second rejection letter suffices) from the NDIA. It may be worthwhile getting an aged care assessment, even if you plan on appealing your rejection.
What happens if I get accepted into the NDIS? Expand Once you are accepted into the NDIS, you will receive a planning workbook. This will ask you questions about your life, your current supports and your goals for the future. You should make sure to take particular care on the goals sections, as this will impact your future funding. A good tip for goals is to keep them as broad as possible. If you are too specific, you might find you only get funding for very specific supports. Most plans have a number of goals – some short term and some longer term. Short-term goals may often lead towards a longer-term goal, for example, 'I would like to be able to look after myself within my parents' home, so they can go away occasionally' could link towards an ultimate goal of being able to live completely independently. Your next step will be to meet with a planner or local area coordinator (LAC), who will develop an NDIS plan for you. This will detail the supports you can receive, timelines and a budget for you. Your plan will be reviewed after a year. Click here for an example of a NDIS planning workbook.
What is an Early Intervention NDIS application? Expand Early Intervention is an NDIS program that is designed to provide support for a person as early as possible, in order to prevent them from needing more support in the future, or to help prevent their condition from deteriorating. Unlike other NDIS funding, early intervention supports are not offered for the person’s entire life. Every 12 months, a review is held to determine if you still meet the early intervention criteria. Some early intervention participants go on to become mainstream NDIS participants, but it is not guaranteed. The access criteria are similar to the criteria for the mainstream NDIS funding program. You will still need to prove that your condition (or that of your child) is permanent. However, the threshold for significantly reduced ability to function is lower. You will have to make the case that receiving supports will: alleviate your/their symptoms prevent you/them from needing further support in the future
What is the NDIS? Expand The National Disability Insurance Scheme is designed to give people with disabilities the support they need to live independent, ordinary lives. It is not means tested – anyone with any level of income or assets can apply, as long as they meet the criteria of having a significant functional impairment. The insurance-based scheme provides disability-related supports and allows people with disabilities to choose whom they purchase these services from.
What supports can be accessed through the NDIS? Expand The NDIS gives participants an individualised ‘plan’ that is designed to help them to achieve, as far as possible, a ‘normal’ life. The plan includes amounts of money specified for certain things that the participant has identified as important to them. This money can only be spent towards meeting the specific personalised ‘goals’, and for the services identified, but the participant has choice and control about who will provide that service. Some examples of things that NDIS might support are: support workers to assist in the home (cleaning, food preparation, etc) equipment to assist with mobility (for example, electric wheelchairs) home modifications (adapted shower/bathroom, etc) access to allied health workers to help prevent deterioration over time There is also a housing scheme called Specialist Disability Accommodation (SDA), which can be accessed by people who are deemed eligible. If you may wish to be housed through the scheme in the future, it is important to include this as a goal, and to request SDA eligibility testing sooner rather than later. Most people in Specialist Disability Accommodation are also accessing Supported Independent Living (SIL). Again, it is important to put this as a goal in your plan - the correct terminology is that you would like to be considered for suitability for supported independent living. 95% of people who are in specialist disability accommodation are also suitable (and accessing) supported independent living. About 65% of people who access supported independent living reside in supported disability accommodation. Supports given by the NDIS must be deemed 'reasonable and necessary'. There are also a number of other criteria. For example, supports must: relate to the goals mentioned in your plan support your social and economic participation in society be considered value for money - supports do not have to be the cheapest in the marketplace, but they do not meet the threshold criteria of being considered to be value for money be considered good practice and beneficial – the NDIS will not fund anything that is not evidence based. This means that some (but not all) alternative therapies might be out consider what supports could reasonably be expected to be provided by parents or the community – for example, if the person with a disability is a child, it is reasonable to expect their parents to cook for them. However, if the person with a disability is an adult, then it is not reasonable to expect their parents to cook every meal. In this case, the person may receive funding for meals and cooking support. This criterion would not expect a parent or the community to do beyond what they are expected to do for a person without a disability is most appropriately funded by the NDIS – NDIS will not fund anything that should be funded by another government department, such as Health, Education or Human Services. For example, the NDIS will not pay for the treatment of a condition or hospital stays. However, they will pay supports to help that person live an ordinary life within their condition
Will the NDIS interfere with my disability pension or other benefits I receive? Expand The NDIS will not replace the disability pension and is not means-tested (they will not exclude people on the basis of income or assets). However, other disability supports you receive, particular those funded by state services, might be affected.