Applying for the NDIS

Posted - September 2018 in HSPRF News

What HSPers should know


The Foundation has been fortunate to find a Local Area Coordinator (LAC) for the NDIS who has provided helpful information, tips and advice, to increase the chances of applications from HSPers being accepted. Here is what he had to say:


HSP appears as follows in the ‘NDIS Operational Guidelines – Access to the NDIS’ section

List D: Permanent/Early intervention, under 7 years – no further assessment required.

Conditions primarily resulting in Neurological impairment.


Systemic atrophies primarily affecting the central nervous system; spinal muscular atrophies; extrapyramidal and movement disorders; other degenerative diseases of the nervous system; episodic and paroxysmal disorders; polyneuropathies and other disorders of the peripheral nervous system:

  • Friedrich’s ataxia
  • Hereditary spastic paraplegia/Infantile-onset ascending hereditary spastic paralysis/L1 syndrome/spastic paraplegias types 2 and 11
  • Louis-Bar syndrome/Ataxia-telangiectasia
  • Niemann-Pick disease (Types A and C)
  • Progressive bulbar palsy of childhood/ Fazio-Londe disease
  • Demyelinating diseases of the central nervous system

What this means is that a medical specialist’s report providing a diagnosis of HSP is sufficient for access to the NDIS without further assessment for impairment or severity. Further, as it is listed as both neurological and degenerative, the scheme should be inclined to stream a plan as Intensive – meaning that the participant’s capacity to engage in the scheme is limited – and the scheme should be inclined to provide Support Coordination, unless it is clear that the disease is in early stages.




HSPers are encouraged to mention HSP’s listing within the NDIS’s categories of disabilities, and hopefully better outcomes will be more likely than some  have already experienced when applying for the NDIS.


What if I don’t yet have a diagnosis of HSP?

For situations where HSP has not or cannot be positively diagnosed by a neurologist, a report on the condition from the neurologist is necessary. There is a category in the NDIS called “Other Neurological”. The neurologist’s report should include the following:

  • symptoms consistent with the condition (HSP or other similar – MS, CMT, PLS, ALS, SCA et cetera)
  • condition is likely to be permanent and/or progressive.


Contact your local Federal MP

The LAC further recommends that people having problems with their NDIS application should seek support and assistance from their local Federal MP. Find your local Federal MP:


Here is a selection of NDIS updates over the quarter:


23 June


8 July


23 July


4 August

Comments on this story

  1. Frances posted at 5:04 pm on 3 September 2018Reply

    My sister has HSP and is included in NDIS. Although beneficial, it was/is a tedious process and persistence is required. As I work full time, the assistance is warmly welcomed but it requires energy to make it run smoothly for the recipient.

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