:format(webp))
“Human rights violations are not always screaming, graphic incidents of violence but can be this subtle, gentle push to the margins”. This quote from the esteemed Natalie Wade as part of Disability Leadership Oration, 2023 challenges us to reexamine the ways we support people, and to be open to the possibility that despite our best intentions, we may actually be impacting on their human rights.
A recent article published by Cuskelly & Crates has again highlighted the complex area of restrictive practices, and the sector’s ongoing work towards reduction and elimination.
The article is focused on a recommendation of the Disability Royal Commission concerning the effectiveness of Positive Behaviour Support (PBS) as an approach to reducing restrictive practices. Positive Behaviour Support is an approach to supporting people with a disability with behaviours of concern, that is endorsed by the NDIS Commission as best practice. The article calls for robust research to determine the contribution PBS can make to reducing both behaviours of concern and restrictive practices, as the current evidence is “weak”.
The article challenges us to question the link between behaviours of concern and restrictive practices. It quotes evidence that shows a reduction in behaviours of concern does not always result in a decrease in the use of restrictive practices, and that restrictive practices have been successfully reduced without a prior reduction in behaviours of concern.
Interestingly, the article describes restrictive practices as “the actions of people other than those who display behaviours of concern; therefore, understanding the drivers of the behaviour of those implementing restrictive practices needs to be an important focus of any initiative to reduce them”. Drivers include a reluctance to reduce reliance on restrictive practices, with a view that it is in the best interests of the person, or a belief that reducing restrictive practices may be dangerous to the person or others.
Another significant driver is “some disagreement about what constitutes restrictive practice in those responsible for its use.” It is this I am keen to explore further with a particular focus on the use of environmental restraints.
Environmental restraints
The NDIS (Restrictive Practices and Behaviour Support) Rules 2018, defines an environmental restraint as follows: “environmental restraint, which restricts a person’s free access to all parts of their environment, including items or activities”.
The NDIS Commission published the Regulated Restrictive Practices Guide (Oct 2020) and says that “environmental restraint can be difficult to identify as this category of restriction is broad and vast”.
As described by the NDIS Commission, it is not always easy to identify this category of restriction and this confusion is borne out in much of the restrictive practice training provided by DSC. It is for this reason we are focusing on environmental restraints and further examining how it is possible we may be working in ways that we believe are of benefit to the people we are supporting but may in fact be restricting their human rights.
Choice making
Supporting people to make choices is a key part of our work. Sometimes we may limit those choices based on our own values and priorities. However, we need to recognise that these limitations may sometimes result in an environmental restraint.
How do we support people to make informed choices from the full range of options available? Are we pressed for time, therefore only offering choices that we know can “fit in”? Do we carry some inherent bias or judgement and, therefore, only offer a choice that fits with our worldview? When supporting a person to order lunch in the community, do we present only the healthy options because mum has said she is worried about their increasing weight?
Imposition of “rules”
Within shared living or other group settings, are there rules and restrictions in place that actually limit a person’s human rights? It might be necessary to have “house rules” to ensure the smooth day-to-day running of a household and it would be hard to argue that everyone washing their own dishes or a roster for taking out the rubbish impacts a person’s human rights. However, when those rules extend to areas such as no alcohol or no overnight visitors, we see the creep into restricting choices and impacting human rights. Just as we would with our bestie who puts themselves in risky situations, or our brother who we think drinks too much, we may offer advice and support, but ultimately leave the decisions about their lives to them.
Free access to items or activities
Some people we support may have a fixation with certain items or activities. This might include excessive use of cigarettes, consumption of sugary drinks, late-nights gaming or watching television. And it may be that these activities lead to changes in behaviour and emotional dysregulation. Our role is to support people to understand the key ingredients to being healthy and productive, and to reflect with the person what we see when those ingredients are missing. But even with the best of intentions, our role isn’t to limit these activities, to grant or withdraw access based on behaviour, or barter screen time for compliance.
Duty of care v. Dignity of risk
Duty of care is often cited as a reason why the choices and desires of people with a disability are not facilitated, curtailed or denied. While this is an important consideration, we need to be mindful that our duty of care only extends to ensuring we do no harm, and that we keep people safe from immediate and serious harm.
While we should absolutely provide information, access to advocacy and support for decision-making, our role is not to protect someone from themselves.
Like all members of the community, people with a disability have a right to make decisions that will support them to grow, learn and improve their quality of life.
So, the key test must be – if I can make this decision about my life, so can a person with disability.
