National Disability Insurance Scheme (NDIS)

What is the NDIS?

The National Disability Insurance Scheme is designed to give people with disabilities the support they need to live independent, ordinary lives. It provides disability related supports and allows people with disabilities to choose whom they purchase these services from.

Can people with ME/CFS get support from the NDIS?
The NDIS legislation set 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. Thus, in theory and as set out in law, there is nothing preventing people with ME/CFS that significantly impacts on their day-to-day function from successfully applying for and receiving the NDIS.

However, we know that in reality people with ME/CFS are struggling to get on to the NDIS. People are being rejected on the basis that their condition is not lifelong (the need for a disability to be ‘permanent’) or that their functional capacities are not significantly impaired. We’re also hearing about problems with the fluctuating nature of the condition and / or that it has not been fully treated. Finally we have a number of people being told the issue is the responsibility of another government service (usually the Federal Health Department) 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. ‘List B’ is a list of conditions which are considered to be permanent but further assessment of capacity is required. It is true that ME/CFS is ‘not on the list’ but the list is not a prescriptive or exhaustive list – it is the assessment of an individual’s functional capacity that should be the determining factor for eligibility.

Rejections on these bases can be very disheartening, especially as people with ME/CFS often have a bad history with their illness being 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. You may need to prepare yourself for the fact that you might have to go through an appeal process.

What happens if I get accepted into NDIS?
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. Make sure you 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.

Your next step will be to meet with a planner. In some states they will be called a Local Area Coordinator.  The planner 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.

What supports can the NDIS give me?
Supports given by the NDIS must be deemed “reasonable and necessary.” This means a support:

  1. Relates to the goals you mentioned in your plan.

This is why it is important to think carefully about your goals!

  1. Will support your social and economic participation in society.

Please note that this does not mean that you have to work to receive NDIS. This criterion is more about enabling people to live life to their full capacity, rather than forcing people to achieve impossible outcomes.

  1. Are considered value for money.

This does not mean that it has to be the cheapest option available. It means that it has to be considered good value for the service it offers compared to other alternatives.

  1. The support is 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.

  1. Considers 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.

  1. 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.

Some examples of things that NDIS might support are:

  • A support worker to assist you in your home
  • Equipment to assist with mobility
  • Home modifications
  • Access to allied health workers to help prevent your condition from deteriorating

Will the NDIS interfere with my disability pension or other benefits I receive?
The NDIS will not replace the disability pension. However, other disability supports you receive, particular those funded by state services, might be affected.

If you already receive benefits from disability services

People who are already in certain State and Territory programs will receive a call from the NDIA, the Agency responsible for rolling out the NDIS, when the Scheme becomes available. You will only receive this call 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 them.

You can see List C of defined programs here. These are schemes where, if you are already a client, you will generally be considered to satisfy the disability requirements without further evidence being required.

If you are in one of these programs, make sure you are answering calls from private numbers, as they may not call more than three times. This call is called an “access request”. Prior to receiving this call you will get a letter telling you that they will call you soon. If you would rather not do the access request over the phone then you can let them know this when they call you and they will send you an access request form. The access request form asks questions to:

  • Confirm your identity or the identity of the person authorised to act of your behalf.
  • Receive your consent to access the scheme and for them to seek information from third parties (such as the State Government currently providing you with disability benefits).
  • Questions about whether you meet the NDIS access requirements.

Following this call you might be asked to provide more information about your disability and how it affects your daily life. If this is the case then NDIA will provide a form for your doctor to fill out. You can see the Access Form here.

If you do not currently receive disability benefits
If you do not receive disability benefits you will have to contact the NDIA when the Scheme becomes available in your area. You can call them on this number 1800 800 110. After this you will have to provide information on your disability and how it affects your daily life. NDIA will provide you with a form for your doctor to fill out. You can see the Access Form here.

How to apply & Who can fill out my form?
How you apply differs depending on whether you currently receive support from disability services.

The NDIA only specifies that the form needs to be filled out by a health professional. However, there have been audits that suggest that they are putting more emphasis on reports from specialists, and sometimes only accepting GP reports if the person is from a rural area. The health professional should work in an area related to your condition. If you have a specialist that 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 make sure you book a double appointment if necessary.

Advice for NDIS Application

Early Intervention NDIS Application
Early Intervention is an NDIS program 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 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

For more information, please view here.

Early intervention funding can be used for purchasing equipment.

What to do if you are rejected

  1. Find an advocate (Disability Advocacy Finder).
  2. Appeal (more details below).
  3. Consider applying for aged care for under 65s. In order to get an aged care assessment you must have a letter of exhaustion (second rejection letter suffices) from the NDIA. It may be worthwhile getting an aged care assessment even if you plan on appealing to the AAT as there are 12-18 month waiting lists for an aged care package.
  4. Know that you are not alone. There is a Facebook group called ME/CFS & the NDIS which can offer support and knowledge from others who are in the same position.

If you disagree with the outcome of your NDIS application you can appeal the decision within three months. 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 a 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 relating to why you believe the decision was incorrect. To ensure you make a strong case, you may wish to seek support from one the agencies funded to help people through NDIA reviews (see “Where to Get Support” below).

The first stage is an internal review within the NDIA. If you are not happy with the outcome of the internal review then 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 the NDIA’s final decision. Your first step will be to fill out a form that can be found on their website or write them a letter.

Useful documents

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 through here.

We particularly recommend their NDIS request for supporting documents template which you can download directly from the RIAC site here.




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