Planning is essential

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:

Step 1 – 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.

Step 2 – Set your 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.

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?
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
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.
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
4 To improve my physical strength and balance in order to better participate in daily activities.
  • Physiotherapy, Exercise Physiology and Personal Training/Exercise Groups
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.)
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
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
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)

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-to-day basis. What are the reasonable and necessary supports you need to achieve your goals and maintain your quality of life on a day-to-day basis? Are these supports directly related to the way young onset Parkinson’s affects your day-to-day functioning?

Resources: 

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

NDIS Supports lists

Supporting NDIS Booklets on applying, creating, and using your NDIS plan can be found on their website.