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.
HSP is listed with the NDIS
HSP is referenced in two lists in the ‘NDIS Operational Guidelines – Access to the NDIS’ section.
List B (for HSPers over 7 years old): Permanent conditions for which functional capacity are variable and further assessment of functional capacity is generally required. https://www.ndis.gov.au/operational-guideline/access/list-b
in this subsection – Systemic atrophies primarily affecting the central nervous system:
- Adult-onset spinal muscular atrophy/late-onset SMA type III)
- Fazio-Londe disease/Progressive bulbar palsy of childhood
- Friedrich’s ataxia
- Hereditary spastic paraplegia/ Infantile-onset ascending hereditary spastic paralysis/ L1 syndrome/ spastic paraplegias types 2 and 11Huntington’s disease/Huntington’s chorea
- Louis-Bar syndrome/Ataxia-telangiectasia
- Motor neuron disease/Motor neurone disease/ Lou Gehrig’s disease /Amyotrophic lateral sclerosis
- Primary lateral sclerosis
- Progressive bulbar palsy
- Spinal muscular atrophy – all types
- Spinocerebellar Ataxia – all types, including Machado-Joseph disease
List D (for HSPers under 7 years): Permanent/Early intervention, under 7 years – no further assessment required. https://www.ndis.gov.au/operational-guideline/access/list-d
in this subsection – Conditions primarily resulting in Neurological impairment.
Systemic atrophies primarily affecting the central 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.
What this means for your application?
Refer to the list (list B if the applicant is 7 years old or older; list D if the applicant is under 7 years old) in your application to the NDIS.
What documentation is the NDIS looking for?
For all applicants, a letter from the neurologist is essential. This needs to say:
- that a diagnosis of HSP has been made (if the HSPer is under 7 years old [list D] no further assessment is required.
For HSPers over 7 years old, the neurologist’s letter also needs to say:
- there is no treatment for the condition – it is not curable
- it is progressive/degenerative
- exactly what functional impairments have been assessed, both physical and psychosocial, and what tools have been used for these capacity assessments.
HSPers are encouraged to include the website reference as above for the relevant HSP 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 also 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 definitely or likely to be permanent and/or progressive.
Local Disability Advocacy Support Organisations
The NDIS application process is, not surprisingly, a bureaucratic maze that is daunting for everyone. Increasingly, local disability advocacy support organisations are providing specific support for the preparation and submission of NDIS applications to increase the chances of success. The organisations providing such support are many and varied across the country. It is highly recommended that you seek out a local organisation providing such support. If you can’t find one, or don’t know where to start, contact your local council as they will have information on disability resources in your area, perhaps directly including disability advocacy support groups.
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: https://www.aph.gov.au/Senators_and_Members/Members
… page updated Jan 2019