Independence and Informed Choice: NDIS Rights and Responsibilities


Published: 10 August 2021

People living with disabilities, regardless of their diagnosis, should be assumed to have the capacity to make decisions, exercise choice and give informed consent (NDS n.d.).

Therefore, providers of National Disability Insurance Scheme (NDIS) services are expected to support NDIS participants to exercise their autonomy (NDIS 2020).

This includes ensuring that participants are adequately informed about their care so that they are positioned to make informed choices (NDIS 2020).

Independence and Informed Choice in the NDIS Practice Standards

Independence and informed choice is a requirement of the NDIS Practice Standards under Core Module 1: Rights and Responsibilities.

This Practice Standard aims to ensure that NDIS participants are supported by providers to make informed decisions, exercise control and optimise their independence (NDIS 2020).

NDIS providers must meet the following quality indicators:

  • Providers should support participants to engage in active decision-making and make individual choices by providing required information in a timely manner. This information should be delivered using the language, mode of communication and terms that participants are able to understand
  • Providers should support participants’ dignity of risk in decision-making. Participants should be able to make informed decisions by considering the benefits and risks of their options
  • Providers should respect participants’ autonomy, including intimacy and sexual expression
  • At any stage of support provision (including assessment, planning, provision, review and exit), participants should be given enough time to consider and review their options and seek advice if needed
  • Providers should support participants to engage advocates of their choosing.

(NDIS 2020)

What is Informed Consent?

Read: Healthcare Rights and Informed Consent

informed consent participant signing consent form

Informed consent is the ability for a person to voluntarily agree or disagree to different aspects of their care, based on information about the potential benefits, risks and alternative options (RACGP 2018).

It is a key component of person-centred care based on the participant’s right to autonomy (QLD DoH 2017).

People have a legal right to be informed about any proposed healthcare interventions. Using the information given to them, they may accept or decline these interventions. They must also be free to change their decision if they wish to do so (Better Health Channel 2014; QLD DoH 2017).

Participants can only provide valid informed consent if they are given sufficient, clear information and fully understand the nature of what is being proposed. Otherwise, the provider may be held legally liable for breaching the participant’s bodily autonomy (Better Health Channel 2014; ALRC 2014).

Effectively Communicating Information

Effective communication between workers and participants is an essential component of providing high-quality and safe care (ACSQHC 2016).

As well as improving participant outcomes and satisfaction, effective communication is crucial in preventing errors, unnecessary distress and inappropriate interventions (ACSQHC 2016).

It also ensures that participants are adequately positioned to make informed choices about their care.

Every NDIS participant has the right to access clear, timely information about the care they are receiving. You may assume the information you provide is easy to comprehend. Yet, 60% of Australians find it difficult to understand complicated healthcare concepts and information (Ciaglia 2017, OHO 2015).

Furthermore, communication issues are the third most common type of complaint received by the Office of the Health Ombudsman (OHO 2015). These communication complaints often include:

  • Poor attitude or manners from staff
  • Inadequate information
  • Incorrect or misleading information
  • Workers not accommodating the client’s special needs.

(OHO 2015)

This suggests there is significant room for improvement.

What do Participants Need to Know?

carer explaining information to participant

The following information should be clearly communicated to NDIS participants:

  • Costs
  • Care/service options available
  • Referrals to other providers/services
  • Health literature and education opportunities
  • How to access their own health information (e.g. care plan)
  • Their rights.

(OHO 2015; ACSQHC 2016)

How to Effectively Communicate Information to Participants

The ACSQHC lists the following as the essential components of effectively exchanging information:

  • Fostering relationships
  • Two-way exchanges of information
  • Conveying empathy
  • Engaging care recipients in decision-making and care planning
  • Managing uncertainty and complexity.

(ACSQHC 2016)

Read: Communication Skills

Participants Who are at Higher Risk of Harm

People who are living with disabilities are at increased

The following people are at an increased risk of harm if presented with unclear or complicated information:

(ACSQHC n.d.)

It is imperative that these participants are provided with information that matches their level of understanding, and that it is communicated in a clear manner.

Practical Tips for Conveying Information

carer showing information to participant on tablet

As identified by the ACSQHC, many people have a limited understanding of healthcare concepts. Individually gauge each participant’s level of understanding and communicate with them accordingly.

  • Do not assume English proficiency or the participant’s level of understanding
  • Speak clearly and slowly
  • Confirm that the participant understands what has been explained to them
  • Encourage the participant to ask questions
  • Improve your own health literacy skills so that you can communicate with the participant more effectively
  • Ensure the participant can demonstrate an understanding of the information provided to them. Consider asking them to repeat it back to you
  • Ensure an interpreter is available if required
  • Ask the participant about their needs and priorities
  • Describe the roles of each member of the care team
  • Keep the participant informed about their care plan
  • Keep the participant informed about expected timeframes, tests or procedures that need to be performed, why certain decisions are being made etc.
  • Check that the participant is willing to follow any plans made.

(OHO 2015; Vic DoH 2015; ACSQHC 2016)

Dignity of Risk and Autonomy

Read: Dignity of Risk

Every person, including those living with disabilities, has a legal right to dignity of risk - that is, the ability to make life choices and take risks (Interchange 2020).

Having the autonomy to take reasonable risks ensures that participants are able to:

  • Learn and grow
  • Enjoy a greater quality of life.

(Interchange 2020)

In order to support dignity of risk, NDIS workers should:

  • Consider the participant’s capacity to make decisions. Are they present of mind? Do they have all the information they require? Should a family member or the resident’s GP be consulted first?
  • Consider what is a ‘reasonable’ risk, e.g. food choices, daily walks or refusal of recommended care
  • Keep sufficient documentation. Ensure they have documented every facet of the decision-making process, from who has been consulted, to the information that has been provided to the participant regarding potential risks, and their subsequent acknowledgement of these risks
  • Familiarise themselves with their providers’ policies. Ensure they are only working within the scope of their role and what processes must be followed to fulfil a resident's request.

(Keast 2016; Woolford 2017)

Supporting Intimacy and Sexual Expression

intimacy and sexual expression participant being kissed by partner

Ensuring participants’ rights to intimacy and sexual expression is an essential part of respecting their autonomy (NDIS 2020).

Practical ways that NDIS workers can help to support intimacy and sexual expression include:

  • Asking questions
  • Providing non-judgmental care
  • Helping to personalise each participant’s dressing and grooming
  • Offering privacy when appropriate (e.g. using ‘do not disturb’ signs, always knocking before entering a participant’s room)
  • Referring participants to the right resources (e.g. sexual health educational material)
  • Communicating with participants’ families
  • Using LGBTI-inclusive language.

(Bauer & Fetherstonhaugh 2016; Bauer et al. 2014)

Additional Resources



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