My experience with National Disability Insurance Scheme (NDIS) Access Request with ME has been confusing, frustrating, distressing, upsetting, depressing, and… You get the idea it has been a nightmare.
I am going to share what I learnt from the process. I hope it will help people with ME (pwME) prepare the Access Request. This is only one person’s experience and will not guarantee this strategy can work for everyone with ME.
Confirmed diagnosis with ME-ICC
This is the subject many medical practitioners and pwME get nervous. It can be challenging, but it is possible.
When you apply for Disability Support Pension (DSP) or NDIS, your GP needs to have the “confirmed” diagnosis to put the name in the application form.
If you don’t have it, obtaining the confirmed diagnosis of ME-ICC is the first step. According to my GP, any specialist can confirm the diagnosis as long as your symptoms fit the ME-ICC definition. (Having them treat ME-ICC is a different story.)
Prepare your diagnosis journey with ME International Consensus Primer for Medical Practitioners (ICP). Your specialist probably needs to do some tests to make sure your symptoms are not from other condition.
It is also recommended to have the assessment of the severity level with the confirmation of ME-ICC diagnosis.
- Mild (meet criteria, significantly reduced activity level)
- Moderate (an approximate 50% reduction in pre-illness activity level)
- Severe (mostly housebound)
- Very severe (mostly bedridden and needs help with basic functions)
Applying to access the NDIS
Check your NDIS eligibility, first.
NDIS Access Request Form (ARF) has updated from the one I used. The concept for the ARF is the same and the Supporting Evidence Form is now included in the ARF.
I have noticed a couple of tricky questions in the updated form in Section 2: Completed by the Treating Professional.
In Part B: Evidence of Disability, Q4. Is the impairment time limited and/or degenerative in nature?
The answer for this question for ME-ICC is “No”. ME-ICC is not “time limited” nor “degenerative”. *1
ME-ICC does not have known, available and appropriate evidence-based treatments that would be likely to cure or substantially relieve the impairment. Therefore, it is likely to be permanent according to rule 5.4 of the National Disability Insurance Scheme (Becoming a Participant) Rules 2016.
Q5. Is the impairment currently being treated? and Q6. Are there any available, evidence based treatments/interventions that are likely to substantially relieve the applicant’s impairment?
When answering, your treating health professional needs to consider that ME-ICC does not have known, available and appropriate evidence based treatments that would be likely to cure or substantially relieve the impairment.
The goal for the management/treatment in ICP is a palliative care nature in the absence of evidence based safe and effective treatment.
Who can provide evidence of your disability?
In the NDIS page “Types of disability evidence“, NDIS has listed the most appropriate treating health professionals to provide the standardised assessments for Primary disability – Other.
They are;
- Occupational Therapist
- Speech Therapist
- Physiotherapist
- Social Worker
Caution is required when your treating GP is filling the Section 2.
You need to explain why your treating GP is the most appropriate to provide the “best practice” in evidence for your complex disease than the above listed healthcare professionals.
Make sure your assessor knows your ARF is for Primary disability – Other. Otherwise, your assessor will automatically assume your disability category is Primary disability – Psychosocial disability. If your disability is recognised as Psychosocial, your NDIS plan will not meet your support needs.
Report from Occupational Therapist, such as WHODAS 2.0 (17 years and over) and PEDI-CAT (16 years and under) to attach to the ARF will be helpful to provide a strong evidence for your substantially reduced functional capacity.
Regardless of which healthcare professional is filling the Section 2, your treating GP and Occupational Therapist are encouraged to cooperate to provide the strong evidence for your ARF.
Disclaimer:
This is a suggested strategy for preparing your NDIS Access Request. This strategy does not guarantee the acceptance.
NDIS suggests you to find your Local Area Coordinator (LAC) partners in your area and contact them for support.
I also recommend to find a Facebook group and/or online forum that provide reliable advice and suggestions for your particular case.
I hope this strategy makes sense to you, and wish you all the best with your NDIS Access Request.
Note:
*1 The literature published on 29 January 2024 suggests ME is degenerative.