Step 1 – Download the YOP-X App & complete the NDIS Wallet
Search for the young onset Parkinson’s YOP-X app in the Android or iOS stores to download and use. Within the app, complete each of the surveys under the various management pillars. Check your NDIS completion scores on the home screen to see your progress. Once completed, access the NDIS Wallet from the app home screen, then tap Export PDF. You can then email or transfer this PDF onto your computer.
Step 2 – Fill out an NDIS Access Request Form
To become an NDIS participant you need to download the NDIS Access Request Form or telephone 1800 800 110 and ask for one to be posted out to you and get an NDIS reference number. You may be offered the option of filling the form out over the phone, but given the detail required on the form, we strongly encourage you to fill it out with assistance from the following support people:
Occupational Therapist
The following assessments can be carried out by an Occupational Therapist to include in your application:
- Functional Assessment
- Home Safety Assessment
- Balance and Mobility Assessments
- Cognitive Assessment
- Disability Impact Assessments
Many states and territories have OTs that can support you. Contact your local Parkinson’s organisation through Parkinson’s Australia on 1800 644 189.
Primary treating health professional
Ask your Neurologist or GP to provide a copy of your diagnosis, and a letter of support as to why you are applying for the NDIS. They will need to fill out Section 2 of the Access Request Form.
Step 3 – Gathering supporting information
A Primary Support Person/Carer Statement template is available in the YOP-X App NDIS Wallet. It can be a valuable supporting document for your NDIS application to demonstrate everyday difficulties you experience through the eyes of the primary person who supports you. It is written by the person who is your primary support, for example your spouse, partner, housemate, best friend, parent or sibling. They will need to provide additional details of how young onset Parkinson’s is impacting on your quality of life and the lives of those around you. You can email them the template from the NDIS Wallet in the app.
Other health professionals can provide support letters including speech pathologists, psychologists, psychiatrists, and physiotherapists that have been treating you for at least six months.
Whatever reports you provide, make sure they are clear about the impact your Parkinson’s has on your daily life, addressing the key domains of mobility, communication, socialising, learning, self-care and self-management.
Step 4 – Attach the following to your Access Request Form
- Printed NDIS Wallet
- Letter of diagnosis from primary treating professional
- Occupational therapist assessments
- Primary support person/carer statement
- Evidence of age and Australian residence including citizenship or visa status
- Letter(s) from your other treating health professionals
Step 5 – Return your Access Request Form
Once your application form has been completed, the fastest way you can return it is email it to NAT@ndis.gov.au. However, you can take it to an NDIA office or an NDIA Local Area Coordinator (LAC) to be lodged.
In this way, you will be given a delivery receipt, and you can expect to receive a response within 21 days.
Remember to attach the supporting documents to your signed and dated Access Request Form.
Getting Your Plan Right the First Time
It is difficult to get more money for your plan once your application has been approved, and a plan review may take a long time. For this reason, getting the correct supports included in your first application for the NDIS is really important.
Encourage your treating health professionals to contact your local Parkinson’s organisation. They can provide a secondary consult, helping improve their understanding of your Parkinson’s symptoms and the impact of them on your everyday function.
Step 6 – Preparing for your planning meeting
Once your NDIS application is approved you will be referred to an LAC for a planning conversation. You will be required to provide detailed information about how your day-to-day living is being affected by having young onset Parkinson’s at your planning meeting and plan review sessions.
We asked NDIS staff if they had any advice, and this is what they told us.
Describe Your Worst Day
You may find yourself filling out your NDIS application with an Occupational Therapist on a good day. Your medication might be working well, you may have had a good night’s sleep, and overall, you might be feeling ok. You have to expect the best, but plan for the worst.
Always frame your answers as if you are describing how your symptoms affect you on your worst day.
Think about a really hard day, perhaps before your medication has started working and where day-to-day tasks are difficult. Describe what that kind of day is like but describe it without any supports you may have in your life, like a partner or another person who may usually help you. This is the kind of information that will help when your application is being assessed. Identifying all of the ways that your day-to-day living is being affected by having young onset Parkinson’s, can guide you to set goals to improve your overall functioning, and this will be the next important step of the application process.
Setting Goals
Identifying short- and long-term goals is an important part of the NDIS application process. NDIS funding is directly attached to your goals, and what supports you will need to achieve these goals. Goals need to be as specific as possible, and meaningful to you. For example, your goal may be to continue to maintain a clean house, however mopping the floor when you have young onset Parkinson’s may take you two hours to complete. The support you may need to achieve this goal could be a cleaner to visit once every two weeks. In this way, you have linked a goal to the support you would need to achieve this goal.
Reasonable and necessary supports
The term ‘reasonable and necessary supports’ will be used to make a decision on whether or not 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 young onset Parkinson’s on a day-today basis. What are the reasonable and necessary supports you need to achieve your goals? Are these supports directly related to the way young onset Parkinson’s affects your day-to-day functioning?
Here are some examples of goals and the supports that might be considered reasonable and necessary for someone with young onset Parkinson’s. It is very important to put your goals in priority order for your situation. Whatever your goals, remember to be clear about the impact your Parkinson’s has on your daily life in the relevant domains of mobility, communication, socialising, learning, self-care and self-management.
| Goal | How will I achieve this goal? | |
| Goal 1 | To obtain physical assistance to help me with managing my household, helping me to complete meaningful domestic and community-based activities | – Support worker assistance – Occupational Therapy assessment |
| Goal 2 | To feel safe and secure when I am at home, work and within my community | – Support worker assistance – Support from a relevant health professional to assist me with regaining my self-confidence – psychology and counselling support, occupational therapy. |
| Goal 3 | To reinstate my attendance to meaningful social activities and appointments that contribute to my health and wellbeing | – Transport assistance – Support worker assistance – Speech Pathology |
| Goal 4 | To improve my physical strength and balance in order to better participate in daily activities. | – Physiotherapy, Exercise Physiology and Personal Training/Exercise Groups |
| Goal 5 | To explore assistive technology and modifications which will help me in maintaining my independence at home, at work and in the community | – Occupational Therapy assessment – Level 1 and 2 (Low-cost low-risk) assistive technology) – Complex assistive technology requiring assessment, trial and review (such as electric beds, lift chairs, powered wheelchairs etc.) |
| Goal 6 | To address the psychological challenges that have arisen as a result of my Parkinson’s and to implement some better self-care routines | – Regular input from a Clinical Psychologist – Regular Counselling and coaching – Support to engage in appropriate courses and groups with a focus on improving mental health and wellbeing – Support to explore positive sleep-hygiene practices with a health professional – Dietician support to improve diet |
| Goal 7 | To explore opportunities to maintain meaningful employment | – Support to feel safe at work – Professional education for the workplace so that they can better understand my Parkinson’s – To determine the reasonable adjustments to assist my successful return to work – Occupational therapy assistance to explore a graduated return to work and develop strategies to help me maintain my effectiveness at work |
| Goal 8 | To maintain my most meaningful relationships and continue to actively participate in my role as a wife/husband, mother/father and daughter/son | – Counselling and coaching – Allied Health input as above (assistance to meet other goals which will subsequently contribute to my successful relationships with family and friends) |
Step 7. NDIS Reviews
If your application is accepted, your NDIS plan will be reviewed every 2 years. You will be asked if any of your goals have changed. This is the chance to reprioritise your goals based on your symptom progression and situation.
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.
A request for internal review must be made within three months of receiving notice of the decision from the NDIA.
If you’re not happy with the internal review, you can apply for a review by the Administrative Appeals Tribunal (AAT) , which exists outside the NDIA.
