𝐖𝐡𝐚𝐭 𝐢𝐬 𝐭𝐡𝐞 𝐍𝐚𝐭𝐢𝐨𝐧𝐚𝐥 𝐃𝐢𝐬𝐚𝐛𝐢𝐥𝐢𝐭𝐲 𝐈𝐧𝐬𝐮𝐫𝐚𝐧𝐜𝐞 𝐒𝐜𝐡𝐞𝐦𝐞 (𝐍𝐃𝐈𝐒)

The NDIS is an Australian government insurance scheme to provide support for people with disabilities, their families and carers with the reasonable and necessary supports they need to live an ordinary life.

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𝐄𝐥𝐢𝐠𝐢𝐛𝐢𝐥𝐢𝐭𝐲

The NDIS is for Australians with a permanent and significant disability, aged between 7*- 65. These are key words the NDIS live by and applications need to show you meet this criteria and that you are unlikely to have a significant change in your functional abilities anytime soon or with any current treatment options. Check full eligibility requirements here. 

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*For children under 7 they have the Early Childhood Approach: This is similar, but the focus is far more family centred and on not just getting supports but helping the child learn and setting up early intervention supports.

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Ehlers-Danlos 𝐨𝐧 𝐍𝐃𝐈𝐒

Yes - people with EDS have become participants in the NDIS. There has been some difficulty as EDS doesn’t seem to easily fit into a perfect slot.

You will need to show permanent disabilities in functional capacity via reports from your health professional. We have highlighted and underlined this wording as its VERY important that this is what they are looking for and any deviation from it will mean they will aim to decline your application.

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𝐈𝐧𝐟𝐨 𝐨𝐧 𝐚𝐩𝐩𝐥𝐢𝐜𝐚𝐭𝐢𝐨𝐧𝐬

This is a scheme for people with 𝐃𝐢𝐬𝐚𝐛𝐢𝐥𝐢𝐭𝐢𝐞𝐬 not for illness. Applications need to focus on functional impairments. Language needs to specifically spell out that you have a permanent substantial disability that won’t improve with any treatments.

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You will need at least one of your doctors to fill in the application. It is best to ask your doctors if they are willing to and what sort of appointment to book as these can be time consuming. It is also suggested to sit down ahead of the appointment and makes notes for all the sections - as the appointment is not only long but can be taxing on emotions and memory.

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The applications has a section for basic personal info for you to fill in (name, address etc) and then a page where your primary doctor (can be GPs or specialists) to fill in the medical details of your impairments. There is also a section for them with a list of potential tests they can use for the application. Whether you use them or not will depend on your needs and doctor etc. They are not mandatory.

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If you have multiple disability disorders it’s best to pick the one needing the most support/diverse needs and then adding the others as additional impairments. This can be decided with the help of your doctor/health professional.

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The final part of the biggest and has 6 sections:

• Mobility

• Communication

• Social Interaction

• Learning

• Self-Care

• Self-Management

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This is where you list if and what functional issues you have in each category. You don’t need to have problems in all areas - you may find you have no issue with communication or learning. This is the functional assessment and some doctors will do it but others require an Occupational Therapist and/or Physical Therapist assessment which can be costly. You may find places nearby that can do these for free (waiting lists may be long) or use the Chronic Disease GP Management (5 visits with 2 or more different allied health professional types for people with chronic conditions) this may not be enough to get an assessment but may help reduce the costs. 

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Additionally you may ask your specialist/s to write a letter supporting your diagnosis. As these conditions need to be significant and permanently disabling. All treatment options must be explored (and at least briefly documented in the application) and there is no expectations your current functional level will improve with current available treatments. You also need to have it highlighted that this condition is PERMANENT! Many people get tripped here with wording that implied it was temporary or that function could improve some how.

Once you have completed these you can submit your application and cross your fingers. It’s best if planning for NDIS to speak to all your doctors ahead of time so you know who is available.

𝐏𝐥𝐚𝐧𝐬

Ok you got accepted now what? You will get an appointment booked with a plan coordinator for a meeting. This is where you will discuss the help you need. They will then submit that with the evidence and come back with a plan. Which can range greatly depending on the disability. This may include money for support workers, cleaning, Assistive Technology items, physio, Occupational Therapy etc. This is where joining an NDIS support group and speaking to others can help figure what supports are out there for people with similar issues and what they have had and work from there. I highly recommend joining an NDIS Facebook group!

You may also as part of your functional assessment already discussed these and submitted specific items and evidence of there need. Many PT's and OT's who do functional assessments are very well acquainted with this.

You will also have to decide who looks after the money.

• You can be plan managed (where a coordinator looks after all the bookings and payments).

• NDIA managed sometimes called agency managed where the NDIS manages your funding. Like with plan managed you are restricted to NDIS registered providers only.

• You can also self manage the plan and have more flexibility. You need to book, pay and keep all your own records.

Your plan meeting can discuss this and you can always change later - especially if you are changing from self to plan managed if you are finding it too difficult.

You will then be informed of your plan. Hopefully it’s good, but if not you can ask for a reassessment within 3months. Plans can last from 6months to 3 years. Initially it might get good to do a yearly plan if unsure. If you are confident and want to avoid getting all the documentation every year for each new plan you can opt for a longer one. If on a long one and something happens there are requests that can be made for change of circumstances/reviews so you aren’t stuck.

𝐄𝐚𝐫𝐥𝐲 𝐈𝐧𝐭𝐞𝐫𝐯𝐞𝐧𝐭𝐢𝐨𝐧

This is available for both adults and children who meet the requirements. This is to help young children or participants who are early in the course of the disorder. They provide specialists intervention and supports to help reduce/delay the cost of future needs and longer-term supports. More info here

𝐈 𝐰𝐚𝐬 𝐝𝐞𝐜𝐥𝐢𝐧𝐞𝐝!

Applications can be funny and depends on who reads them. If you don’t get in first time don’t lose heart.

You may be asked for additional supporting evidence from your specialist. Again make sure they highlight the permanent nature of your functional disability and treatments attempted. 

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Support groups for NDIS can also offer a lot of help here which are listed below. They can help look at wording which i frequenrly where people have tripped up. Too many times has a doctors letter been slightly ambiguous and any chance of interpretation leaves them open to decline.

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Obviously if the doctor doesn't agree that is one thing, but if they do agree you meet the requirements for the NDIS and support helping you to get on it they will be happy to be directed on a sentence or two. Some would even appreciate a well done template for them to follow highlighting what they need to include. Discuss this with your doctor what they would like from you to help them complete the form/support letter.

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𝐄𝐱𝐩𝐞𝐫𝐢𝐞𝐧𝐜𝐞 𝐰𝐢𝐭𝐡 𝐍𝐃𝐈𝐒

There has been varied experiences with NDIS with some finding it so helpful it changes things and others finding the process dehumanising. Wording on applications is KEY and honestly less is more, applications with hundreds of pages and multiple tests can be hard for non-medical NDIS  people to follow. State specifically the functional issues/disability. Keep it short and succinct so even a tired government employee who doesn’t know the cerebellum from the cerebrum can understand. People with 100 pages of evidence have been rejected and others with just the application and an additional page of support have got in. Words like safety and independence are important.

An example might be you need some stuff like shower chairs for bath.

Bad example "needs shower chair for fatigue"

Good Example "difficulty independently meeting your hygiene needs and for your safety you required these items to allow you to bathe independently otherwise you would need a support worker at a greater cost" (pointing out how helping you know will cost less in the future is great!)

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Also make sure you are writing about your worst days not your best. Don’t try and play the hero if you need help write about it even if it’s hard to admit to yourself.

Dealing with NDIS can be long and tedious! It also may allow you can accomplish things and get supports you really need. Just be aware it’s not seamless!

𝐎𝐧𝐥𝐢𝐧𝐞 𝐠𝐫𝐨𝐮𝐩𝐬 𝐟𝐨𝐫 𝐡𝐞𝐥𝐩 𝐚𝐩𝐩𝐥𝐲𝐢𝐧𝐠 𝐚𝐧𝐝 𝐨𝐧𝐠𝐨𝐢𝐧𝐠 𝐬𝐮𝐩𝐩𝐨𝐫𝐭:

NDIS for HSD, EDS and Dysautonomia

NDIS Participant Group for Those with EDS, HSD & Dysautonomia

NDIS Grassroots Discussion

If links don't work just try searching the names - Facebook can be funny with private groups. 

𝐂𝐨𝐧𝐭𝐚𝐜𝐭 𝐃𝐞𝐭𝐚𝐢𝐥𝐬

https://www.ndis.gov.au

1800 800 110

𝐼𝑛𝑓𝑜𝑟𝑚𝑎𝑡𝑖𝑜𝑛 𝑐𝑢𝑟𝑎𝑡𝑒𝑑 𝑜𝑛 𝐷𝑒𝑐 2021 - 𝑤ℎ𝑖𝑙𝑒 𝑤𝑒 𝑑𝑜 𝑜𝑢𝑟 𝑏𝑒𝑠𝑡 𝑡𝑜 𝑢𝑝𝑑𝑎𝑡𝑒 𝑝𝑙𝑒𝑎𝑠𝑒 𝑘𝑛𝑜𝑤 𝑡ℎ𝑖𝑛𝑔𝑠 𝑐𝑎𝑛 𝑐ℎ𝑎𝑛𝑔𝑒 𝑞𝑢𝑖𝑐𝑘𝑙𝑦.