Future planning: Progressive conditions and long-term care.


While it can be difficult to confront the reality of a changing condition, it is helpful to consider how it may impact the person with a disability and their care needs over time.

It’s also essential to take into account any longer-term care needs such as changes in the health of a carer. In this extract from the Leap in! ebook, Future planning: A guide for parents and carers, we provide some questions to talk through with your health care practitioner and outline some of the considerations for long-term care.


Woman is feeding a young man in a wheelchair

Progressive conditions.

The NDIS is designed to provide supports for people who have impairments that are likely to be lifelong. Some disabilities or conditions are progressive or degenerative, meaning they can worsen over time.

While it can be hard to confront the reality of a changing condition, it is helpful to understand the prognosis and possible future changes. Below, we have outlined some questions to consider or talk through with your health care practitioner.

Questions to consider with your health care practitioner.

  • How is this condition likely to change in the future?
  • What are the treatment options?
  • Where are these treatments available? Can they be obtained in the local area?
  • How are the person’s independence and/or care needs likely to change?
  • What additional supports or services may be needed?
  • What capacity building skills can be learnt now to assist with future needs?

It’s important to talk about these issues together and ensure that the wishes and preferences of the person you care for are taken into consideration each step of the way.


Thinking about long-term care.

There are many reasons that a person may need to enter a longer-term care arrangement such as moving to supported accommodation. Two of the most common reasons are changes to their condition and changes in the health or circumstances of people who are responsible for their care.

Part of the process of planning ahead is to consider what longer-term needs may arise and thinking in advance about things such as:

  • The person’s likely long-term care needs
  • Their long-term goals and aspirations
  • Lifestyle and care preferences
  • Whether a transition phase is likely to be required
  • The medical or allied health professionals who can provide guidance and/or support
  • The options for care in your local area
  • If Supported Independent Living (SIL) is a realistic option
  • The financial implications and any financial support available.


Changing circumstances and the NDIS.

If you or a person you care for is an NDIS participant and circumstances change, it is important to let the NDIS know. This includes changes to:

  • The level of care provided by family or friends
  • Living arrangements
  • Health and wellbeing (such as the worsening of a condition).

While a review of an existing NDIS Plan is not always required when something changes, if the changes mean additional supports are required, an NDIS Plan Review may be undertaken.

Find out more in My circumstances have changed: What next?


5 future thought-starters.

Working through the following list one item at a time is a good way to think about and structure forward planning without it becoming overwhelming.

1. Future living arrangements.

Where you will live, the type of home you will need to live in, and who you live with.

2. Employment.

How the changes may affect your ability to work or earn income as well as the types of financial support that may be available if you can’t work.

3. Other responsibilities.

It’s important to consider other family members, ageing parents and children in your care. Also, how these responsibilities might change over time.

4. Future support needs.

This will take into consideration changing conditions and may include home or vehicle modifications.

5. Changing care needs.

Care needs can be difficult to predict but you might like to think about things like obtaining more support at home, respite options or new services.

With the right care and support, many people with progressive conditions live full and satisfying lives. Planning ahead can help equip them (and you) with the tools and skills to adapt and manage.

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Go to the next chapter > Transitioning to adulthood.