Respecting dignity, autonomy and privacy
Respecting service users
People with intellectual disabilities often feel that they are treated disrespectfully by service providers.
People with intellectual disabilities feel disrespected when:
-
staff ignore them
-
staff speak to them in patronising or condescending ways
-
staff shout at them
-
staff treat them as incapable
Respecting service users’ autonomy
People with intellectual disabilities – like most other people - feel disrespected when their autonomy is denied.
Having autonomy means having control over your life. It means making choices and decisions about your life that reflect your own values and preferences.
Every person’s autonomy is limited by external constraints and pressures. For example, choices can be constrained by how much a person can afford to pay for something.
But some people’s autonomy is more restricted than others. For example, children have less autonomy than adults. Parents are legally authorised to make decisions for children under 18 years old.
People with intellectual disability are often denied autonomy even when they are adults. Many decisions are made for them by others, such as parents or service providers. This happens because of wrong assumptions that people with intellectual disabilities do not have capacity to make good choices.
Respecting service users’ autonomy means, first and foremost, listening to them. In this video, people with intellectual disabilities ask you and other service providers to listen to them.
Autonomy in decision-making
Inclusive services enable people with intellectual disability to make choices about the service they use. There are many different types of choice, for example:
-
What food to order in the cafe
-
What activity to join in the community centre
-
What book to borrow from the library
-
What lane to use in the swimming pool
Staff can support people with intellectual disabilities to make decisions about a service by:
-
Speaking directly to the person rather than their parent or support worker
-
Asking the person what they want
-
Listening to what they say
-
Giving the person clear information about their options, so that they can make informed choices.
-
Explaining any potential risk in a simple and clear way.
-
Remembering that people have a right to take risks, but may need help to understand what they are.
-
Only a person formally appointed as a guardian or substitute decision-maker has the legal authority to override a decision made by an adult with intellectual disability, unless they are in imminent danger.
In this video, people with intellectual disability explain the importance of making their own decisions.
In this interactive video, Drew, a person with intellectual disability, visits the library, and asks for help in filling in a form. You are asked to help the librarian choose actions that respect Drew’s dignity and autonomy, while also considering risk.
Interactive Video
Respecting service users’ privacy
People often share personal information with you when they use a service. This might include their name, address, telephone number, and service preferences. They might also share sensitive information about their disability and related needs. This information must be treated with respect for service users’ privacy.
Privacy means having control over who accesses personal information about you.
To protect a service user’s privacy you must ensure that none of their personal information is shared with anyone else without their permission.
Respecting privacy also means not collecting personal information about a person from others without their consent. For example, asking a support worker to share personal information about a person without that person’s consent, is a breach of their privacy and autonomy.
In this interactive video, Josie, a woman with intellectual disability visits a health service. You are asked to help the doctor choose actions that respect Josie’s dignity, autonomy and privacy.
Interactive Video
-
Treat people with intellectual disabilities with respect. This means treating people as equals, and respecting their autonomy and privacy.
-
Enable service users with intellectual disabilities to make choices about the service they receive.
-
Speak directly to the person, ask about their preferences, and listen actively to what they tell you.
-
Explain possible risks so people can make informed decisions about the service.
-
Respect service users’ privacy. Seek explicit permission before collecting or sharing personal information about them (even within your organisation).