Independence and Informed Choice: NDIS Rights and Responsibilities

People living with disabilities, regardless of their diagnosis, should be assumed to have the capacity to make decisions, exercise choice, and give informed consent (DSS 2016).

Therefore, providers of National Disability Insurance Scheme (NDIS) services are expected to support NDIS participants in exercising their autonomy (NDIS 2021).

This includes ensuring that participants are adequately informed about their care so that they are positioned to make informed choices (NDIS 2021).

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 providers support NDIS participants in making informed decisions, exercising control, and optimising their independence (NDIS 2021).

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 2021)

What is Informed Consent?

Informed consent is the ability of a person to voluntarily agree to or refuse different aspects of their care, based on information about the potential benefits, risks, and alternative options (Shah et al. 2023).

It is a key component of person-centred care based on the right to autonomy (Clinical Excellence Queensland 2023).

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; Clinical Excellence Queensland 2023).

Care recipients 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 person’s bodily autonomy (Better Health Channel 2023; ALRC 2014).

Some participants may need more support than others to access information and communicate decisions. For example:

• Participants who are non-verbal or use communication devices or other communication methods
• Participants who are culturally or linguistically diverse
• Aboriginal and Torres Strait Islander people
• Participants living with cognitive impairment.

(NDS 2019)

Effectively Communicating Information

Read: Communicating Effectively With People With Disability

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

Effective communication improves participant outcomes and satisfaction and 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, around 60% of Australians have low health literacy (CEC 2020).

Furthermore, communication issues are the fourth most common source of healthcare dissatisfaction in Australia (Nagpiing 2023). Complaints often include:

• Non-verbal communication (poor eye contact and facial expressions)
• Verbal communication (choosing unsuitable words, not listening actively)
• Content of information (inadequate or poor quality)
• Poor attitude (lack of empathy or respect).

(Nagpiing 2023)

Dignity of Risk and Autonomy

Every person, including those living with disabilities, has a legal right to dignity of risk - that is, the ability to make choices that involve risk (NDIA 2023a).

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

• Learn and grow
• Improve their self-esteem, self-respect, empowerment, and hope.

(NDIA 2023a)

It’s important to maintain a balance between ensuring safety and respecting participants’ right to make decisions (NDIA 2023b).

In some cases, where a participant’s choice involves unreasonable risk (e.g. physical, financial or legal harm), you may need to prioritise wellbeing and safety over the participant’s right to dignity of risk (NDIA 2023b).

Supporting Intimacy and Sexual Expression

Ensuring participants’ rights to intimacy and sexual expression is an essential part of respecting their independence (NDIS 2021).

Examples of how NDIS workers can help to support participants’ intimacy and sexual expression include:

• Being aware of barriers to sex and intimacy that people with disabilities may experience, e.g. stigma, lack of opportunity, social challenges, physical differences
• Gaining an understanding of what they want, e.g. a romantic partner, sex, intimacy
• Asking questions to gauge their level of sex education
• Addressing barriers specific to the person, such as past trauma, lack of knowledge, or disability-related issues
• Providing education on consent, dating, sex toys, or other areas if needed.

(Neve 2024)