The NDIS and DSP are government support for disabled Australians who meet the eligibility requirements. While people with Ehlers-Danlos Syndrome have received both these supports it is a known issue that Australian EDS communities are working on. There is inconsistency with applications acceptance that is unacceptable and puts patients at risk. There are more options for children like Carers payment etc which we will be adding in the future. This is currently mostly aimed at adults.
We have tried to put some hints based on EDS members who have managed to receive these supports. One of the biggest takeaways when applying is both of these supports are focused on DISABILITY, not about illness. Applications need to state that these are PERMANENT disabilities and that all known therapies have been tried and that there is nothing available that will improve FUNCTION. Any ambiguous wording by doctors in their letters/forms will be used to decline the applicant. These have to be written like you are on your BAD days - not your good/average day.
Mainly for the DSP but your condition needs to be FULLY diagnosed, treated and stabilised. For NDIS this is similar but not stated as such. Basically they want to know that you have a medically diagnosed condition that is causing your disability and you have tried treatments and will not likely get better (functionally) anytime soon.
Wording in these applications is very important and having a functional assessment by an Occupational Therapist who knows EDS and the NDIS can be very helpful - but is often very pricey. Often the requirements of both the NDIS and DSP are very similar is not the same so it might be helpful to look at both at once if applicable. Even having evidence like a disabled parking permit can be extra evidence of having a government approved disability need. There are support groups listed in both sections to look into and ask your questions there to get the best outcomes. This is only a quick summary sharing the biggest pitfalls noticed. Sadly we can't offer individual help or advocacy - but we are talking with people to try and see what can be done for EDS in general to help with the NDIS. We will update if/when we have information that can help. There are advocacy groups out there you can look up online if you need help applying or arguing if you have been denied.
National Disability Insurance Scheme
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.
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.
*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.
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.
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.
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.
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.
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.
The final part of the biggest and has 6 sections:
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.
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.
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.
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.
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.
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.
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!)
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
If links don't work just try searching the names - Facebook can be funny with private groups.
1800 800 110
𝐼𝑛𝑓𝑜𝑟𝑚𝑎𝑡𝑖𝑜𝑛 𝑐𝑢𝑟𝑎𝑡𝑒𝑑 𝑜𝑛 𝐷𝑒𝑐 2021 - 𝑤ℎ𝑖𝑙𝑒 𝑤𝑒 𝑑𝑜 𝑜𝑢𝑟 𝑏𝑒𝑠𝑡 𝑡𝑜 𝑢𝑝𝑑𝑎𝑡𝑒 𝑝𝑙𝑒𝑎𝑠𝑒 𝑘𝑛𝑜𝑤 𝑡ℎ𝑖𝑛𝑔𝑠 𝑐𝑎𝑛 𝑐ℎ𝑎𝑛𝑔𝑒 𝑞𝑢𝑖𝑐𝑘𝑙𝑦.
Disability Support Pension
𝐖𝐡𝐚𝐭 𝐢𝐬 𝐭𝐡𝐞 𝐃𝐢𝐬𝐚𝐛𝐢𝐥𝐢𝐭𝐲 𝐒𝐮𝐩𝐩𝐨𝐫𝐭 𝐏𝐞𝐧𝐬𝐢𝐨𝐧
The Disability Support Pension (DSP) is an Australian government financial support available for adults with 𝐩𝐞𝐫𝐦𝐚𝐧𝐞𝐧𝐭 𝐝𝐢𝐬𝐚𝐛𝐢𝐥𝐢𝐭𝐲 whether physical, intellectual and/or psychiatric. For this we will focus on physical only in Adults. If you are unable to work for a short time look at our for JobSeeker Payment. Further payments you may be eligible for if ineligible for DSP:
- Aged between 16yrs and under 66yrs and 6months (when Age Pension Kicks in)
- Australian resident for at least 10yrs in a row or 10yrs with no break for at least 5 of those years. Read more on residency rules (https://www.servicesaustralia.gov.au/residence-rules-for...)
- Meet Income and Assets Test (these vary with age and living situation see their website for details https://www.servicesaustralia.gov.au/residence-rules-for...)
Either meet Manifest of General Medical Rules. In most cases Ehlers-Danlos Syndrome wont meet Manifest rules unless you are sick enough to need nursing home level of care or meet DVA requirements.
𝙂𝙚𝙣𝙚𝙧𝙖𝙡 𝙈𝙚𝙙𝙞𝙘𝙖𝙡 𝙍𝙪𝙡𝙚𝙨
- your condition will last more than 2yrs
- your condition is fully diagnosed, treated and stabilised
- Impairment rating of 20points of more ^
- you can not work more than 15hrs per week for the next 2yrs.
- you meet program of support *
These are a group of functions that are assessed and rated between
0 = no impact and 30= severe.
Evidence through your doctor, Occupational Therapy and/or Physiotherapy is needed to corroborate levels. Self-report is insufficient.
- Activities requiring Stamina/Exertion
- Upper limb function
- Lower Limb function
- Spinal Function
- Mental Health Function *if you need assistance but can’t get it due to funds and are suffering trying put that level like you had supoort to help
- Function related to alcohol, drugs and other substances.
- Brain Function (memory, attention, problem solving, planning, decision making, comprehension - many which both conditions can impact greatly).
- intellectual Function
- Digestive and Reproduction Function
- Hearing and the ear Function
- Visual Function
- Continence Function
- Skin Function
There are 15 tables and meeting 20points or more can be covered as mild impairments across a few areas or severe impairment in one. Make sure to do this representing a your bad day.
Your condition needs to be fully diagnosed, stabilised and treated - within reason. Obviously new things may crop up but at the time of application you meet this criteria. All this information needs to be detailed in medical evidence too. When they say stabilisation they don’t mean you are better. They mean that your condition won’t improve. Whether your ability to work +15hrs a week will improve with rehab etc. Obviously if it’s the opposite in that it will decline that meets DSP.
Before starting the website has a pre-claim guide that goes through all the basic questions for eligibility which is a great place to start.
Your medical evidence needs to show you are unable to 𝐰𝐨𝐫𝐤. Anything else like NDIS might be a better choice for disability help. They want to know from your doctor:
what the condition/s is/are
past, current and planned conditions *especially if surgery is an option why haven’t you done it. List as much as possible you have done - physical therapy, rehabilitation, psychology, pain management etc..show you have tried hard to get better and tried all thats out there within reason.
how your condition impacts your day to day life and ability to work.
names and contact details of your doctors (best to ask if they are alright about this before hand and agree you should get it).
symptoms (when did they start, how often and long, how do they impact you)
prognosis (are you expected to get better? Stay the same? Get worse?)
evidence (this varies depending on disorder but can include medical imaging reports showing your condition, reports from physio/rehab, specialist medical reports, medical history etc). Use their checklist.
𝐀𝐛𝐢𝐥𝐢𝐭𝐲 𝐭𝐨 𝐰𝐨𝐫𝐤
This will be assessed with your medical evidence and 𝑱𝒐𝒃 𝑪𝒂𝒑𝒂𝒄𝒊𝒕𝒚 𝑨𝒔𝒔𝒆𝒔𝒔𝒎𝒆𝒏𝒕. You have to prove you regularly can’t work 15hrs a week. That doesn’t mean in just your job but ANY job. They will look for other professions, retraining and adaptions to your work to keep you off DSP. So keep in mind this is inability to do ANY work (within reason). The Job capacity assessment will be an interview going over your application (and any new info) about whether you can work the hours with support or not.
If you have a manifest medical condition or score more than 20 in a single table you don’t have to participate. This is a support to help people with a disability keep or find jobs.
𝐃𝐢𝐬𝐚𝐛𝐢𝐥𝐢𝐭𝐲 𝐌𝐞𝐝𝐢𝐜𝐚𝐥 𝐀𝐬𝐬𝐞𝐬𝐬𝐦𝐞𝐧𝐭
This may occur also if already on DSP as part of a review. A government-contracted doctor will assess you and your evidence. This is an hour long and free.
You can claim DSP online or get paper form from Centrelink. MyGov account and linking Centrelink is required for online applications.
This is a list of potential documents needed.
Payment rates differ due to age and circumstances
A lot of the forms/information gathering for DSP is similar to NDIS. So might be worth doing both at once.
Like NDIS they don’t care about your illness they care about 𝐩𝐞𝐫𝐦𝐚𝐧𝐞𝐧𝐭 𝐝𝐢𝐬𝐚𝐛𝐢𝐥𝐢𝐭𝐲. So applications should be framed around your functional disabilities and how they restrict you and you won’t get better.
Write your symptoms and other evidence like a bad day. Not worth being a martyr now, let them know honestly the struggle you go through.
𝐅𝐚𝐜𝐞𝐛𝐨𝐨𝐤 𝐠𝐫𝐨𝐮𝐩𝐬 𝐟𝐨𝐫 𝐡𝐞𝐥𝐩 𝐚𝐩𝐩𝐥𝐲𝐢𝐧𝐠 𝐚𝐧𝐝 𝐨𝐧𝐠𝐨𝐢𝐧𝐠 𝐬𝐮𝐩𝐩𝐨𝐫𝐭:
DSP Application Support Group -Australia
𝐈 𝐰𝐚𝐬 𝐝𝐞𝐧𝐢𝐞𝐝!
Take a breath, that’s not uncommon to not meet the criteria the first time. There is so much red tape that it’s easy to miss little things. Ask for a review
You need to report any change or circumstances.
You need to report any income earned.
-Can I work while getting the DSP?
Yes! You can work upwards of 30/hr per fortnight. If you earn over $$ your DSP will be reduced that fortnight. If you work over 30/hr or earn over $$ a fortnight your DSP will be stopped ($$ amounts differ depending on age and living situation)
-Will NDIS impact my DSP?
No! They are not related in anyway.