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 legislation of the NDIS 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 by the law, there is nothing preventing people with ME/CFS that significantly impacts on their day-to-day function from receiving the NDIS.
However, we know in reality that people with ME/CFS are struggling to get on to the NDIS. People are often getting rejected on the basis that their condition is not lifelong, does not impact their ability to live and/or is the responsibility of another government service (usually the federal Health Department). Other disabilities, including mental health conditions and episodic illnesses, are also facing these barriers.
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 facing disbelief. So it is important to know before you begin the process, that applying for the NDIS might take up a lot of emotional energy. You might also prepare yourself for the fact that you might have to go through a few appeals or apply a few times.
What happens if I get accepted into the 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 at 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:
- Relates to the goals you mentioned in your plan.
This is why it is important to think carefully about your goals!
- 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 their life to their full capacity, rather than forcing people to achieve impossible outcomes.
- Are considered value for money.
This does note 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.
- The support is considered good practice and beneficial.
The NDIS will not fund anything that does not have an evidence base behind it. This means that some (but not all) alternative treatments might be out.
- 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 the 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 but another government department- such as Health, Education or Human Services. For example, for a child with learning disabilities, NDIS might pay for special learning equipment, tutoring or computer programs. However, they will not pay for a classroom aid as the Education Department is responsible for paying this.
Some examples are:
- A support worker to assist you in your home.
- Equipment to assist with mobility
- Home modifications
- Access 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.
How To Apply
How you apply differs depending on whether you currently receive disability services supports or not.
If you already receive benefits from disability services
If you already receive benefits from disability services you will receive a call from the NDIA, the agency responsible for implementing the NDIS, when the Scheme rolls out in your area. 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 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 met the NDIS access requirements (see below).
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 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 a form for your doctor to fill out. You can see the Access Form here.
Who can fill out my form?
The NDIA only specifies that the form needs to be filled out by a health professional. 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, then your GP can fill it out for you. The more details your doctor provides, the better, so make sure you book a double appointment if necessary.
Advice for NDIS Applications- Exploring the Access Criteria
The section below goes through each criterion for NDIS eligibility. We discuss what this means, some stumbling blocks people with ME/CFS might face and strategies for addressing them.
Whilst we have chatted to lawyers and NDIS experts to put together this advice, it should in no way be considered legal advice.
- Age Requirements
All NDIS participants must be 65 or younger at the time of entering the Scheme.
Naturally, this may prove a stumbling block for people with ME/CFS who are over 65.
Unfortunately, there are not many ways that you can get around this requirement. If you are over 65, you might want to consider what Aged Care services can support you.
However, once you are on NDIS you have the choice of whether to stay on it or transfer to the Aged Care sector when you turn 65. So if you are approaching 65 and want to be on the NDIS, it is advisable to apply as soon as possible.
- Residence Requirements
To receive the NDIS you need to reside in Australia. This does not mean you have to be an Australian citizen- you can be a permanent resident or special visa holder.
You also have to live in an area where the NDIS has rolled out. The Scheme won’t be full rollout across all of Australia until 2019. You can find out when the NDIS will be in your area.
If you do not live in an NDIS area, you unfortunately won’t be able to become a participant yet.
Short of moving to an NDIS area, there are not many strategies that you can use to get around this requirement. Remember, full roll out will occur by 2019. In the meantime, you might want to check when your local area will become part of NDIS. It is worth getting your application ready early so that you are prepared when the time comes.
- Disability Requirements
The following are the disability requirements for entering into the scheme. Click on the links to see more detail on each point.
“A person meets the disability requirements if:
- the person has a disability that is attributable to one or more intellectual, cognitive, neurological, sensory or physical impairments or to one or more impairments attributable to a psychiatric condition; and
- the impairment or impairments are, or are likely to be, permanent; and
- the impairment or impairments result in substantially reduced functional capacity to undertake, or psychosocial functioning in undertaking, one or more of the following activities:
- social interaction;
- self-management; and
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 into the future or 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 met the early intervention criteria. Some early intervention participants go on to become mainstream NDIS participants, but it is not guaranteed.
The access criteria are the similar to the criteria for the mainstream NDIS funding program. You will still need to prove that your condition 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 symptoms;
- Prevent you needing supports in the future.
For more information, please view here.
Early intervention funding can be used for purchasing equipment.
If you disagree with outcome of your NDIS application you can appeal it within three months.
The first step 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. In the form you will need to answer questions relating to why you believe the decision was incorrect. To ensure you make a strong case, you may which to seek support from the agencies funded help people through NDIA reviews (see “Where to Get Supports” below). It might also be helpful to refer to the strategies for the access criteria listed above.
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 Administrate 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 fill out a form that can be found on their website or write them a letter.
Where to get supports for application and appeal
There are number of organisations that have been funded to help people appeal NDIS decisions. This support can either be through a skilled support person who can act as your advocate or access to funding for legal services.
A support person can help by running you through the appeals process, helping you prepare documents, attending hearing with you and providing you with advice and support so you are better able to represent yourself.
To access funding for legal support for complex matters you need to fill out an application.
There is no fee for NDIS Appeals support.
Service providers who have been funded to provide support are under Legal Services, Advocacy and protection of rights section.