When you are diagnosed with Parkinson’s under the age of 64 and are an Australian resident you can apply for support under the National Disability Insurance Scheme (NDIS).

If eligible, NDIS can help to provide funding for help with daily life in these categories:

  • equipment and technology
  • home and living supports
  • social and community participation
  • disability-related health supports.

Our Step-by-step Guide to the NDIS

Step 1. Community Connection

The first step is to review which community and mainstream supports are available to you with your Local Area Coordinator (LAC). You don’t have to apply to the NDIS to get community connections. Both people with disability and NDIS participants can access this service through NDIS LACs.

Step 2a. NDIS Access Request Form

To become an NDIS participant, you will need to download the NDIS Access Request Form (ARF) or call 1800 800 110. Be sure to ask for an NDIS reference number and an ARF to be posted to you.

You may be offered the option of filling the form out over the phone, but given the detail required, we strongly encourage you to fill it out with assistance at home.

ARF Sections 1 & 2 will have to be filled out by you. Part B will need to be completed by your treating health professional for your primary disability, e.g., neurologist /geriatrician for Parkinson’s. You may need to book a longer than usual appointment to do it.

Step 2b. Gather supporting info

Support your application with “good evidence of disability” including recent letters that demonstrate the impacts of Parkinson’s on your daily life – what functions have been affected, as well as noting any treatments you have tried or are trying, and the actual or intended outcomes of these treatments. These letters can come from a variety of health professionals including your treating health professional (e.g., MDS/ Neurologist/ Geriatrician). They will need to complete Section 2 of the ARF.

They can provide evidence of your diagnosis and a letter detailing that Parkinson’s is a lifelong, progressive, degenerative neurological condition with no cure. They also should note that Parkinson’s results in a greatly reduced capacity to move, communicate, socially interact, self-manage and take care of daily activities.

If you already have letters from your care team including speech pathologists, psychologists/psychiatrists, and physiotherapists that have been treating you for at least six months you can include them. If not, don’t worry, when your initial plan is approved there should be money earmarked for initial assessments.

Many occupational therapists (OTs) can support you through the initial NDIS process with a:

  • functional assessment
  • home safety assessment
  • balance and mobility assessments
  • cognitive assessment
  • disability impact assessments (you can complete these on the YOPX app to export and include initially).

Primary support/carer impact statement

A primary support person or carer impact statement can be a valuable supporting document for your NDIS application. This demonstrates the everyday difficulties you experience through the eyes of the person who supports you.

It is written by your spouse, partner, housemate, best friend, parent, or sibling. They can provide additional details of how young onset Parkinson’s is impacting on your quality of life and the lives of those around you (see Carer Impact Statement infosheet).

Step 3. Lodge your application

Once your application form has been completed, the fastest way you can submit by email to NAT@ndis.gov.au. However, you can take it to an NDIA office or a LAC to be lodged. You will be given a delivery receipt, and can expect to receive a response within 21 days.

Remember to attach the following to your signed and dated Access Request Form:

  • Evidence of age and Australian residence (citizenship or visa status)
  • Letter of diagnosis from neuro/GP
  • Letter(s) from any other treating health professional(s) if you have
  • YOPX My NDIS Info PDF exported from the app
  • Primary support person/carer impact statement.

Step 4. Pre-plan and set goals

You are eligible to go into an early intervention stream if disability requirements are not met. Parkinson‘s is a condition on NDIS List B.

Once your NDIS application is approved you will be referred to a local area coordinator (LAC) or NDIA planner for a planning conversation. Prior to the meeting is in important that you prepare yourself with these things in mind:

You will be required to provide a personal impact statement which includes detailed information about how your everyday living is affected by having Parkinson’s.

Make sure you describe your Parkinson’s and how it affects you on your very worst day. Think about how it negatively affects your life, ability to work, maintain your home, community activities and relationships. This can guide you to set goals to improve your overall functioning.

Identifying short- and long-term goals is an important part of the NDIS plan. NDIS funding is attached to the goals you put in rank order and determines what supports you will need to achieve these goals. See table 1 for examples of goals and supports.

The term ‘reasonable and necessary supports’ will be used to decide on whether to fund your requests for support. This is important to keep in mind when you are listing the kinds of support you feel will assist you in living well with Parkinson’s on a ‘worst day everyday’ basis; however, this needs to be very general in the application phase e.g. for ‘mobility’ you may indicate a need for physiotherapy and exercise physiology as well as transportation assistance but you would not specify the frequency or intensity of supports.

It is difficult to get more money for your initial NDIS plan once your application has been approved. A plan “check-in” aka review (Step 7) may be requested but also may take a long time. For this reason, getting your priority goals in order of importance and the requested supports planned for your worst day’s needs right the first time is very important.

Plans are implemented for a period of one or two years and then reviewed with a “check-in” prior to renewing them. Again, you can request a review sooner due to the degenerative nature of Parkinson’s and your symptoms’ progression or if your family or care circumstances change. You may need different supports sooner than expected. Use the NDIS Guidelines and the Young Onset Parkinson’s eXchange app to help compile your application.

Step 5. Planning meeting

You will create your plan at the meeting with an NDIA planner or LAC. You can use resources found under Creating your NDIS plan as a guide. Bring your pre-planning goals and examples of your symptoms at their worst.

Step 6. Use your plan

Changes to NDIS supports that start on 3 October 2024.

From 3 October 2024, there is a new definition of NDIS supports. What does NDIS fund? (opens in a new window)

This means that starting on 3 October, participants:

  • can only spend NDIS funding on things that are in the approved list of NDIS supports.
  • cannot spend NDIS funding on things in the list of non-NDIS supports.

There will be a 12-month transition period for the NDIS support lists.

Participants can ask for an NDIS support to be replaced with certain non-NDIS supports. These are called replacement supports. Replacement supports must be from the pre-approved list. You can find this list of replacement supports on the same page as the NDIS supports list. n.b. to get a replacement support approved, participants need to show that the replacement support will lead to the same or better outcomes, and be the same or better value for money, compared to the current NDIS support. Participants must follow this process before purchasing the replacement support. It cannot be done after purchasing a non-NDIS support. If an application for a replacement support for an item is not approved, the participant can’t apply for that same replacement support again for 12 months.

More information: 

NDIA & Parkinson’s Australia are committed to making sure everyone has the information they need about these changes. We will continue sharing resources on our website and across our communications channels, and they will be on NDIA/NDIS channels and website as well.

We’ve created a handy table of NDIS Ins & Outs lists with replacement supports so you can easily compare across like categories. 

You can find that information at the NDIS sources below:

Adapted from 2 Oct 2024 email from Rebecca Falkingham, CEO NDIA to NDIS participants and plan nominees

You can use resources found under Using your NDIS Plan on the NDIS website to guide you.

Support coordination

If funded for support coordination, they will help organise your appointments and review your plan spend at intervals with you to ensure you will meet your goals.

Self-manage vs managed plan

You can choose to be self-managed meaning you oversee submitting receipts and requests for reimbursements (this can be done through an app and web portal) or have a plan manager receive and pay invoices on your behalf.

Auditing

NDIS may audit self-managed plans, so keeping detailed records and receipts is recommended for a period of five years. Request and keep any reports from allied health professionals of how your sessions are meeting your goals or maintaining your condition.

Step 7. NDIS “check-ins,” reviews and appeals

If your application is accepted, your NDIS plan will be reviewed every 2 years. You will be asked if any of your goals or circumstances have changed.

If your application is not approved and you are considering appealing the decision, we strongly recommend that you submit a new application instead. In this way, you can look at gathering any additional supporting information and avoid the possible delays that may come with the appeals process.

However, you have the right to ask for an internal review of your plan by the NDIA.

Make sure you describe your worst day and how it negatively affects your life, ability to work, maintain your home and relationships. This can guide you to set goals to improve your overall functioning.

Identifying short- and long-term goals is an important part of the NDIS plan. NDIS funding is attached to the goals you put in rank order and determines what supports you will need to achieve these goals. See table 1 for examples of goals and supports.

The term ‘reasonable and necessary supports’ will be used to decide on whether to fund your requests for support. This is important to keep in mind when you are listing the kind of support you feel will assist you in living well with Parkinson’s on a worst day everyday basis; however, this needs to be very general in the application phase e.g. for ‘mobility’ you may indicate a need for physiotherapy and exercise physiology as well as transportation assistance but you would not specify the frequency or intensity of supports.

It is difficult to get more money for your initial NDIS plan once your application has been approved. A plan review (Step 7) may be requested but also may take a long time. For this reason, getting your priority goals in order and requested supports planned for your worst day’s needs right the first time is very important.

Plans are implemented for a period of two years and then reviewed prior to renewing them. Again, you can request a review sooner due to the degenerative nature of Parkinson’s and your changing symptoms or progression. You may need different supports sooner than expected.

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Parkinson’s Australia National Conference

6-8 April 2025, National Convention Centre Canberra, ACT