Privacy and Dignity: NDIS Provider Rights and Responsibilities
Published: 09 August 2021
Providers of National Disability Insurance Scheme (NDIS) services, as with all other healthcare organisations, are bound by law to keep the medical records and health information of their clients safe and private.
There is an inherent vulnerability in seeking healthcare. A visit to a clinic can involve removing clothing, being prodded, scanned and possibly photographed. When receiving personal care, it might mean having another person undress, wash and shower you.
Through all of this, the NDIS participant trusts that the workers caring for them have their privacy and dignity in mind. Any breach of this privacy will justifiably upset the participant and could result in them taking legal action against the worker/or the provider (RCNI 2016).
Privacy and Dignity in the NDIS Practice Standards
This Practice Standard aims to ensure that NDIS participants receive supports that respect their dignity and right to privacy (NDIS 2020).
NDIS providers must meet the following quality indicators:
Providers implement consistent policies and procedures that respect and protect participants’ personal privacy and dignity
Participants are informed of confidentiality policies. This information is delivered using the language, mode of communication and terms that participants are able to understand
Participants understand and agree upon personal information that may be collected, and for what purposes. This might include recorded audio or visual material.
Participants, or a nominated individual, can make the decision to give staff access to the participant’s health records or to withhold them.
While this is optional, giving healthcare staff access to this information will help them to provide the best care possible. However, workers are required to protect participants’ privacy and confidentiality (Better Health Channel 2015).
Note: a person always maintains a right to access their own medical records.
Health and Personal Information About NDIS Participants
Health information is any information regarding a person’s health or disability, and any information that relates to a health service they have received or will receive (Better Health Channel 2015).
The NDIS and NDIS providers may collect and access participants’ health information, as well as other personal information if it is ‘reasonably necessary’ for them to do so in order to perform their role. This information might include:
Name, contact details, date of birth and age
Health details (e.g. physical health, mental health, any disabilities)
Names, contact details and addresses of guardians and nominees
Centrelink Customer Reference Number (CRN)
Feedback or complaints about services
Disclosure of Information
In some cases, the NDIS might need to disclose a participant’s personal information. Where possible, this information will be de-identified before disclosure. Examples of when disclosure may occur include:
The participant consenting to have their information disclosed
The NDIS referring a participant to an external provider
Disclosure being necessary in order to deliver the NDIS
Disclosure being required under law
Disclosure being necessary in order to prevent or reduce a serious and immediate threat to someone’s life
Disclosure being necessary in order to prevent or reduce a threat to public safety
Disclosure being required as part of an internal complaints investigation
The NDIS engaging a contractor that requires personal information in order to perform required services
Data sharing or data integration with Australian Government agencies.
Laws may differ by State and there are certain exemptions that may apply in law enforcement situations and in a court of law. Keep in mind, health information privacy laws only apply rights to people who are living (Better Health Channel 2015).
Privacy and dignity are guiding principles of person-centred care. The provision of effective, person-centred care hinges upon the following:
Clear respect for participants’ values, preferences and expressed needs
Coordination and integration of care
Information, communication and education
Emotional support and attempts to alleviate fear and anxiety
Involvement of family, friends and carers
Transition and continuity
Access to care.
(SA Health 2014)
Beyond communication, workers should be mindful of the steps they take to ensure participants’ privacy and modesty are protected, e.g. closing screens, making sure participants are covered and keeping their voice down when discussing private and personal issues (RCNI 2008).
This may also mean carrying out self-care tasks such as bathing, dressing and feeding with sensitivity.
Respect for the Values and Preferences of Participants
Ways to let participants know that their preferences matter could include:
Ensuring gender accommodation is available, or when not possible, providing participants with support and safety needs in a mixed-gender environment
Ensuring that workers introduce themselves and explain their role to participants
Asking participants what name they prefer to be called
Identifying people such as carers, family or friends, in conjunction with participants
Showing an awareness of different views, beliefs, cultures and languages
Considering participants’ preferences in all decision-making and goal setting for care and treatment