Getting the most out of the NDIS

Posted - December 2017 in HSPRF News

Do your homework!


This article has been written by an HSPer from South Australia who is going through the process of applying to be included in the scheme. The article is designed to help HSPers get the most out of the National Disability Insurance Scheme (NDIS).


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The NDIS is a maze.

Understanding and navigating through it well is vital if you are to maximize the government help you can get, advises Muscular Dystrophy Association SA, Chief Executive Officer, David Duncan. There are many tips, which HSPers can use to make sure they get the most out of the Scheme (see Do’s and Don’ts below).


Get help – don’t go it alone

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For example, many applicants don’t know they can have a support person with them during the assessment process, or that they can apply for funding for a Support Coordinator who can bring together all their support strands.


While HSPers are recognised under the Scheme, knowledge of neurological conditions, their effects and the progressive degeneration, can be misunderstood and overlooked by the NDIS so it is vital HSPers spell them out, Mr Duncan says.


This makes it extremely important HSPers articulate their needs clearly. He stresses that the NDIA (National Disability Insurance Agency) needs to be made aware that HSP is an incurable, progressive disorder with debilitating symptoms that fluctuate daily.


Find your local Disability Advocacy group

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Because individual HSPer needs vary so widely Mr Duncan recommends they seek the help of a disability advocacy group before applying for NDIS funding. Such organisations are usually keen to help HSPers at any step of the process and many have geared up to support their people with disabilities in light of the NDIS. For example, the Muscular Dystrophy Association of South Australia (MDSA) has costed many of the services it offers and is on hand to help and support people at any stage of the NDIS planning and application process, he says. If you don’t know of a local group, try doing a Google search of “disability advocacy (location)” with your suburb or city name to help you find a group near you.

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It is imperative that HSPers give a lot of thought to the services, home modifications and technology they need and ensure they’re included in their package. “People need to put themselves into a position where they get the supports they need, not just simply replace the supports they already have,” Mr Duncan says.


“Remember NDIS packages will replace many supports, including financial supports such as Mobility Allowance, so HSPers must consider carefully the services/supports they need to access.”


The NDIS Application Process

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For HSPers who do not receive disability support services the application starts with the Access Request Form, which the NDIS send out on request (Phone 1800 800 110). HSPers who already receive disability support services will be contacted by the NDIA to arrange a planning meeting.

Mr Duncan recommends Part F of the form, which asks for supporting information about your disability and its impact on your daily living, be completed by a health professional, such as a neurologist, occupational therapist, physio etc.

He also recommends HSPers ask for letters from other treatment professionals to use as supporting evidence for their claim and presented later at the planning stage.

Medical professionals should use similar wording to that used by the NDIA, such as ‘functional capability’, ‘lack of independence’ and ‘essential supports’. For example, HSPers keen to maintain independence should request their letters highlight maintaining current levels of functioning, preventing further degeneration of muscles due to weakness and spasticity, and preserving range of motion to ensure independence can be maintained.

Once your Access Request Form has been received, the NDIA will contact you to arrange an assessment interview. Mr Duncan recommends HSPers arrange a time that suits them and resist any urging to make an over-the-phone “quick assessment,” which probably WILL NOT account for all their needs but WILL be used to assess their funding eligibility.

It is wise HSPers consider the supports already provided them by various government agencies, disability advocate groups and therapies, such as housecleaning, equipment, mobility allowance, physiotherapy and transport services.

Mr Duncan says an often-overlooked request is Support Coordination, a specific support item that can be requested during the NDIS planning process.

It allows HSPers and their families access to a “personal assistant” (of sorts) whose role is to research, source information, investigate and arrange services and supports on your behalf and at your direction. This support ensures HSPers can receive maximum benefit from their NDIS package, with minimal stress, running around and confusion, he says.



DO USE words that the NDIS uses: Retaining independence, Remaining socially engaged and community involved; Improving or retaining functional ability; Improving and maintaining wellbeing.

DO BE prepared to explain in detail hereditary spastic paraplegia and how it affects your daily life. Make a list!

DO RESPOND to the questions in the assessment as if you are presenting your worst possible day (e.g. no cane/walker, no in-home or therapeutic supports).

DO UNDERSTAND that you are entitled to bring another person to the assessment meeting. This can be an important support.

DO CONSIDER carefully including the supports you already access through disability support groups, such as social groups (e.g. MDASA’s MD Ninja’s, MD Mafia, and Out and About); camps (e.g. MDASA’s Camp Capacity, Camp YOLO and Grown-Up Getaway); therapeutic supports (e.g. podiatry, occupational therapy, hydrotherapy and neuro-physiotherapy) and transport (assistance to travel to and from therapy and similar services, via cab vouchers or the transport subsidy).

DO ASK for everything that you want, understanding that some requests will likely be rejected be rejected.

DO GATHER supporting evidence from your treating medical professionals. Tell them that you need a letter about how HSP impacts your functioning now and how the degeneration is progressive.



DON’T AGREE to a “quick assessment” over the phone – instead arrange a meeting at which you can present documents from your treating medicos to support your case.

DON’T ASSUME the NDIA knows all about hereditary spastic paraplegia. They know very little and may not ask questions either.

DON’T FORGET you can apply for Support Coordination from your disability advocacy agency – invaluable for some.

DON’T HESITATE to ask your disability support provider for a costing document, which details the funding required for their various supports. (For example, the MDASA has costed its supports and provides clients with costing documents on request).

DON’T OVERLOOK the fact that it is much easier to get your package right from the outset, rather than trying to adjust it later.

DON’T feel obliged to give the NDIA information about your financial/personal circumstances – e.g. whether you have private health insurance and whether you live with family members. Remember, the Scheme is not means-tested and it is not the role of family members to look after all of your needs.

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Comments on this story

  1. Kym posted at 6:56 pm on 10 December 2017Reply

    I have found it hard to explain the H.S.P. to my LAC but she’s learning and my Occupational Therapist has asked me when will I be walking again and explaining my needs now I’ve gone from crutches to a wheelchair resulting from a fall at the hydro therapy pool, my third fall there after 5+ years and they don’t understand our needs for safety.

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