Prioritising is essential

The NDIS goal-setting process is all about figuring out what matters most to you and what kind of support will really help you live well.

Long- and short-term goals

For someone with young onset Parkinson’s who wants to stay employed and active in the community, it means starting by thinking about your everyday challenges—imagine describing your “worst day” when your symptoms are at their peak. That might help you identify the specific areas where you need assistance, such as mobility, energy management, or communication. Then, you sit down with an NDIS planner or a Local Area Coordinator (LAC) and discuss both short-term and long-term goals. For example, a short-term goal could be to secure help around the house or to use assistive technology that makes daily tasks easier, which in turn supports your ability to work outside of the home. A long-term goal might focus on how you can continue to enjoy social activities and remain connected to your community despite the ups and downs of Parkinson’s.

Set clear goals

When setting these goals, it’s important to be as clear and specific as possible. Ask yourself what changes will most improve your quality of life: Is it greater independence at home? More energy or confidence to handle workplace tasks? Or perhaps better balance and mobility to take part in community events? By prioritising these needs and ensuring they’re directly linked to the supports you apply for, you help the NDIS understand exactly how they can assist you in maintaining your job and your community involvement. This process is collaborative and tailored to your own life, so take your time to reflect on your current situation and what you hope to achieve in the future.

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 for domestic and community tasks
  • Occupational Therapy functional capacity assessment that outlines specific tasks and requirements to guide this
2 To feel safe and secure when I am at home, work and within my community.
  • Support worker assistance for domestic and community tasks
  • Support from a relevant health professional to assist me with regaining my self-confidence – psychology and counselling support, social work, occupational therapy.
  • To have aids and assistive technology to help me be safe at home (e.g. installing recommended assistive technologies like sensor lighting and a personal falls alarm).
  • Transport assistance to and from appointments and community activities to get me there and back safely.
3 To reinstate my attendance to meaningful social activities and appointments that contribute to my health and wellbeing.
  • Transport assistance to ensure I am able to attend
  • Support worker assistance to attend with me if needed
  • Speech Pathology to increase my confidence in voice volume and enunciation.
4 To improve my physical strength and balance in order to better participate in daily activities and maintain my independence.
  • (Neuro)Physiotherapy
  • Exercise Physiology
  • Assistive technologies
  • Walking aids
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 to identify reasonable and necessary assistive technologies and home modifications.
  • 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.)
  • reasonable workplace adjustments (e.g., flexible work hours, ergonomic modifications) to support a safe return to part-time work.
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.
  • Dietitian support to improve diet & manage constipation.
7 To explore opportunities to maintain meaningful employment and support to feel safe at work.
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  • Professional education for the workplace so that they can better understand my Parkinson’s.
  • To determine the reasonable adjustments and flexible working arrangements to assist my continuation of 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).

Caring for the carers

When planning your NDIS goals, it’s important to consider not just your own needs but also how your Parkinson’s symptoms affect your family. The process recognises that living with young onset Parkinson’s might mean your loved ones—whether you’re a partner, parent, or have young carers in the family—also need support. For example, you might include a goal to have a support worker who can help with household tasks, such as cleaning, meal prep, or cooking, or assist with transport for appointments and school runs. This can ease the load on family members who may otherwise feel overwhelmed.

By including these family-centred supports in your goal setting, you create a plan that not only helps you live well with Parkinson’s—but also safeguards the health and involvement of your entire family. This collaborative approach ensures that each family member’s needs are addressed, so everyone can continue to play a positive role in your care and your community life.

Carers can also seek financial, respite and emotional support through Carers Australia, Carer Gateway and the Young Carers Network.