Promotion of choice and independence

In older models of care, people with disabilities were encouraged, even forced, to do what others told them to do. The nurses or doctors in institutions were in charge, and they always knew best.

Disempowerment

A person who is disempowered had lost some or all control over their own lives and choices. Many services in the past have contributed to disempowerment. You can contribute to this in ways that you might not even be aware of, for example by:

• Using language or body language that implies that the person does not have the right or ability to make choices, such as terms such as:
  • 'I’ll tell you what to do’
  • ‘It’s better if I make that decision’
  • ‘We have decided for you’ » ‘You’ve been naughty/bad/disobedient’
  • ‘Have you done what I said to do?’
  • ‘I know more about this than you do’
• Using a bossy or intimidating manner that implies that you are in charge
• Talking about the person as if they are not present, such as asking family members about what the person wants, rather than the person themselves
• Withholding information from the person about their rights.

Empowerment

Empowerment means ‘giving the person power’. This is an especially important principle in support work. It is a basic human right to have control over our own life and decisions. When the person feels confident about feeling in control of themselves and their own choices, we give them power. There are many ways to help the people you support to express their own preferences and to gain confidence in speaking up about their own wishes. You hand over this power to the person when you:

• Talk to them as someone who is providing a service, rather than as someone who is in charge
• Tell them about their rights and how to use them. Remind the person often that they are their own expert, and that they have the right to express their own wishes.
• Do not just say it, do it—Treat the person as an expert about their own needs and preferences whenever you can
• Help them practice making choices, such as exploring options together, rather than simply telling them what you think they should do. Try to practice using open-ended questions like ‘What would you like to do today?’ rather than providing your own options.
• Help the person practice saying ‘No’ to what they do not want
• Respect the person’s reasonable final decisions without question unless it is not safe for them to do so.
• Be conscious of your facial expressions and how you respond to the person’s own choices.
• Avoid showing displeasure or annoyance, even in subtle ways, when you do not agree with the person’s choices. Different choices are what make us unique.

Engage, Enable, Empower: George (Dementia Australia)

Disempowerment

Has there ever been a time when you were told what to do, such as by a teacher or parent when you were growing up, and you wanted to do something else instead? For example, you might have been told to wear your hair in a certain way or to act in a certain way.

1. How did it feel to be forced to act according to the wishes of others?
2. What do you know about yourself that others do not?
3. Who is the expert about you?

Work role responsibilities and limitations

When it comes to providing support and care in the aged, disability or home and community care sectors it is essential to ensure you have clear professional boundaries in place. These are rules and limits that are enforced to prevent the line between a worker and client becoming blurry. Having clear professional boundaries also ensure a safe work environment is maintained.

Your work role responsibilities and professional boundaries are identified in work place documents such as your Position Description, or work place policies and procedures and are set by legal and ethical frameworks to establish a safe work environment for yourself and the client.

Some examples of professional boundaries include:

• Keeping client information private from others;
• Not doing any personal or additional favours for clients outside the scope of your work responsibilities; or
• Not accepting gifts from clients

Human Rights

Human rights lie at the heart of ethical decision making. Human rights are fundamental to the way we interact with other people and the value we see in their ability to survive and thrive in our society.

Australia was a founding member of the United Nations and was instrumental in developing the Universal Declaration of Human Rights. Human rights recognise that each person, regardless of their backgrounds have the right to be treated fairly, with dignity and mutual respect and have the ability to make their own daily life choices.

The Universal Declaration of Human Rights was adopted by the United Nations General Assembly in 1948. The declaration is not legally binding for the countries who have signed it, but it does set out an important set of agreements and understandings about what human rights mean for the world.

The declaration begins by acknowledging that ‘the inherent dignity of all members of the human family is the foundation of freedom, justice and peace in the world.’

When we are working within the aged care and disability sectors it is very important to be mindful of workplace policies, procedures, legislation and regulations that we need to adhere to when we are supporting clients.

Some of these include the following:

• Aged Care Act 1997
• Aged Care Guidelines
• Aged Care Diversity Frameworks
• The Aged Care Quality Standards
• The Charter of Aged Care Rights
• User Rights Principles
• Disability Discrimination Act (1992)
• Racial Discrimination Act 1975
• Sexual Discrimination Act 1984
• National Disability Insurance Scheme Act (2013)

We all take risks and make choices that are not good for us at many points in our lives. We might smoke, drink alcohol, eat an unhealthy diet or have sex with a person we do not know. We might go skydiving or climb a ladder to fix the roof. As long as these decisions are legal and do not harm others, we have the right to choose them. However, in the past, services have tried to take this right away from people with disabilities and older people. Doctors, nurses and support workers considered it their duty of care to protect clients and residents from all harm. The aged and disability industries were so concerned about the person’s health and safety that they took away the person’s right to make mistakes and to learn from them, and to take the kinds of risks that we all take from time to time.

Dignity of risk means the person has the right to take some risks in their everyday life, even if others do not approve, and even if it is not the best or safest thing for the person. Dignity of risk allows the person to make choices, even if we do not agree that they are the right ones. The person should be allowed the dignity of risk when the following three things are considered: 1. You have helped them to learn about the consequences of their decision if they were not aware of the risk 2. They are able to understand the consequences of their decision 3. The choice they are making does not have the potential to harm anyone else.

Example

It is your own choice not to take medications that your doctor advises you to take. It is your choice to eat an unhealthy diet, to smoke and to do other risk-taking behaviours that might harm only you.

There are limits, however, to dignity of risk. These limits fall in our duty of care responsibilities. Duty of care refers to your responsibility to your client’s safety and wellbeing, and the safety and wellbeing of others. This is part of your work role. While you must allow dignity of risk in some situations where the person can understand the consequences of their own decisions or life choices, you also have a duty of care to protect the person from undue harm, without infringing on their human rights.

Example

You have breached duty of care if the person takes risks when they could not understand the consequences. For example, you cannot allow a person with severe dementia to wander out on to the street alone, no matter how much they want to. You also cannot allow, encourage or turn a blind eye to a client taking risks that might harm others. For example, you cannot allow a person to smoke in their bedroom in a facility because this has the potential to cause a fire or to harm staff through passive smoke inhalation. You have the right to impose a nut-free policy in a house or facility where one resident or client has a severe nut allergy, even if the other residents really enjoy eating nuts. You also have the responsibility to intervene in illegal behaviour that has an adverse effect on others. For example, a client does not have the right to drive a car without a licence, or to use racist or homophobic language towards another person.

Dignity of Risk

Consider each of the following examples and decide whether the person is entitled to dignity of risk

1. John has emphysema and has been urged by his GP to stop smoking. He does not wish to do so and has told his GP that he understands but does not care about the consequences. John smokes alone outside and respects the health of the workers and others around him.
2. Naomi has an acquired brain injury and has stopped sending her children, aged 7 and 12, to school.
3. Franko lives in an aged care facility has very few social networks. He does not have dementia. He has told the staff that he does not like most of the other residents, and that he would prefer to sit on his own in the quiet room most days.
4. Georgio has an intellectual disability. He wishes to see a sex worker.
5. Lucy and Fred live in an aged care facility. Neither of them has dementia, and they want to have a sexual relationship.
6. Harry and Hilda live in an aged care facility. Harry does not have dementia, but he wants to have a sexual relationship with Hilda, who does have dementia. Hilda does not seem to be objecting.

Dignity of Risk in Aged Care | Balancing Your Duty of Care with Their Dignity of Risk

Strengths-Based Approaches In the past, community services often focused on weaknesses. A person with autism might not be able to communicate verbally, so they may not participate in activities. An older person might have arthritis, so they may stop creating things with their hands. A strengths-based approach does not focus on weaknesses. Instead, it considers the person’s individual strengths, and makes use of those strengths to provide support. Every person has their own strengths. When you provide support to someone for a while, you can help them to learn, understand and use their own strengths and abilities

Example – Graham

Let’s look at these two examples again.

1. A person with autism might not be able to communicate verbally, so they may not participate in activities. Many people with autism have weaknesses in their communication and social skills. However, they often have strengths in other areas.

Graham has autism and is largely non-verbal. He is extremely good with computers and tablets and can learn to use new programs very quickly. His support worker Alice finds an app that helps to play to this strength. The app seems complicated to Alice, but it allows to Graham to program photos of his belongings and favourite activities into an interface that turns them into words spoken out loud by the app. Graham has become so good at using this app that he is starting to create whole sentences, and he uses the app to speak to them for him. His favourite thing is when Alice and his family members understand his more complex efforts to communicate. Over time, he begins to learn to use language more often himself because the app has helped him to do this.

Example - Joan

2. An older person might have arthritis, so they may stop creating things with their hands. There are many ways to be creative. And there are many ways to overcome barriers that are related to the person’s weaknesses, by thinking about their strengths instead.

Joan has always enjoyed needlepoint, but she now has arthritis and can no longer work with the needle. Her designs were always beautiful. She has been helped to learn arts and new crafts, such as painting with water colours and knitting with big needles, but it is not the same for her. Her support worker Maria has looked online and found a handheld machine that punches coloured thread easily into canvas, leaving a very similar look to needlepoint. Joan is thrilled. She needs someone to thread the machine for her, but once that is done, she is able to reproduce fine work that is as good as what she produced with her needle.

Promotion of Choice and Independence

Information About Support Services Introduce the person to other services that are in place to strengthen supports so that they can live as independently as possible and make decisions about their own life. Funding models such as the NDIS (National Disability Insurance Scheme) focus on providing resources and support that allows the person to live more independently in the community.

Supports in the community can also include:

• Independent living centres
• Disability specific support groups and websites
• Dementia Australia
• Advocacy and financial services
• Cultural groups such as Aboriginal Health Services
• Specific supports for other types of diversity, such as QLife, a counselling and referral service for people who identify as LGBTIQ
• Community Visitors programs, which enable people to speak up about the way in which their rights are or are not being met
• Local council aged and disability services
• Communication resource centres, such as those run by Scope Victoria.

Support Services and Resources Referrals

Without your information and assistance, some people you support may never know about, or may not be able to access, supports in the community to help them achieve independence. Your role in providing information and referrals might include:

• Helping the person locate the services that best meet their needs
• Letting your supervisor know that the person may need supports from other services
• Helping the person or their family to contact other services
• Supporting the person to travel to or use the resources offered by the service

In some funding models, such as Aged Care funding, access to these services must be done through a portal like My Aged Care, and often involves an assessment and referral from the person’s GP. NDIS funding is supplied through applying to the National Disability Insurance Agency. In both cases, the person’s doctor, social worker or other professional can help.

Mandatory Reporting

Mandatory reporting is the legal requirement of people in certain job roles to report child abuse to authorities such as police and government departments. Mandatory reporting laws vary from state to state, and can depend on the setting you work in. Mandatory reporting means that people in the job roles included in this legislation (those who are mandated to report) must report suspected or actual abuse to the police or to an approved external body or department. They can be charged with a criminal offense if they do not.

Watch

Watch this video from the Aged Care Quality and Safety Commission to learn more about reporting responsibilities in residential aged care: ‘Reportable Incidents Under the Serious Incident Response Scheme (SIRS)

Privacy

Approved service providers have responsibilities to their clients, particularly when it comes to client information, confidentiality and disclosure.

An approved service provider must:

• protect the care recipient’s privacy and comply with all applicable laws relating to the use of personal information
• implement security safeguards to protect care recipients’ personal information against loss or misuse
• meet the Australian Privacy Principles in the Privacy Act 1988 and obligations in state or territory privacy laws

Confidentiality

Protected information Protected information is information that was acquired under or for the purposes of the Act and:

• is personal information, as defined in the Privacy Act 1988
• relates to an approved provider’s affairs
• relates to an applicant’s affairs for approval under Part 2.1 of the Act
• relates to an applicant’s affairs for a grant under Chapter 5 of the Act
• Any unauthorised release or misuse of protected information is a breach of the Act and can result in personal penalties of up to 2 years imprisonment.

For further information regarding a Service Provider’s responsibilities, take a look at the following link from the Department of Health and Aged Care.

Disclosure

Disclosure means that you have a legal responsibility to report certain things to a manager, even if the person asks you not to. You must breach the person’s confidentiality and report to a manager if the person you support tells you that they:

• Have been abused, or have experienced signs that could be abuse or neglect
• Are at risk of harm, such as experiencing falls
• Are at risk of putting others at harm, such as driving a car when they are unsafe to drive, or when they do not have a license
• Are considering self-harm, or have attempted self-harm.

Resources

For other sources of information relating to privacy, confidentiality and disclosure, you may like to have a look at the following websites:

• Aged Care and Quality and Safety Commission Privacy Policy
• Department of Health and Aged Care
• NDIS.gov.au
• A guide to privacy, confidentiality and disclosure in aged care
• Australian Privacy Principles

Activity

Dementia Australia Research Dementia Australia’s website: Home | Dementia Australia What resources and supports do they suggest helping people with dementia to stay independent? How can Dementia Australia assist with these needs?

Review Questions

1. Explain the meaning of strengths-based support.
2. Give two examples of how you can support a person to express their own individual preferences.
3. Give three examples of what must be in place before a person is given the dignity of risk to make a choice that could harm them.
4. Give one example of when you have the duty of care to step in and prevent someone from making a choice that could harm them.
5. Briefly explain why independence is important.

A restrictive practice is any practice or intervention that has the effect of restricting the rights or freedom of movement of an aged care consumer. Under the legislation, there are five (5) types of restrictive practices:

• Chemical restraint
• Environmental restraint
• Mechanical restraint
• Physical restraint
• Seclusion.

The definitions of restrictive practice and the five types of restrictive practices were implemented to provide clarity to providers on what constitutes a restrictive practice and the circumstances for the use of a restrictive practice. These definitions are aligned with those applied under the National Disability Insurance Scheme.

Aged Care

The Aged Care Act 1997 and the Quality of Care Principles 2014 have been updated to clarify and strengthen approved provider requirements in relation to the use of restrictive practices in aged care. These changes protect senior Australians receiving aged care and services and ensure that providers understand and meet their obligations in this regard

Source: Aged Care Quality and Safety Commission

Disability

The Disability Act 2006 protects the rights of people with disability who submit to the use of restrictive practices or compulsory treatment. 

A small number of people with a disability are subject to restrictive practices or compulsory treatment, which are used to protect the person from causing harm to themselves or others.

The use of regulated restrictive practices by disability service providers must be included in a behaviour support plan and reported to the Victorian Senior Practitioner. 

The use of regulated restrictive practices by registered NDIS providers must be included in an NDIS behaviour support plan prepared by an NDIS behaviour support practitioner and reported to the NDIS Quality and Safeguards Commission. 

When can restrictive practices be used?

Everybody has a right to move freely, but sometimes people might hurt themselves or hurt other people. Providers can use restrictive practices to stop harm to self or to others.

Read

Under the NDIS Rules, states and territories are responsible for authorising the use of regulated restrictive practices.  For further information regarding the process for regulating restrictive practices for NDIS participants in Victoria, take a look at the Process Flow.

Process Flow - Authorisation of regulated restrictive practices for NDIS partcipants.

The Victorian Senior Practitioner is responsible for ensuring that the rights of persons who are subject to restrictive practices and compulsory treatment are protected, and that appropriate standards in relation to restrictive practices and compulsory treatment are complied with. The Victorian Senior Practitioner has the power to issue prohibitions and directions under the Disability Act 2006.

Physical restrictive practices

Some common restrictive practices in residential aged care that are physical can include:

• clasping a person's hands or feet to stop them from moving
• applying restraints such as leg, wrist, ankle or vest restraints
• seating residents in chairs with deeper seats, recliners or rockers where they are unable to stand up from, or moving their mobility aids
• It may also include confiding a person in a residential facility or specialised unit

Pharmacological restrictive practices

Some medications prescribed for residents in residential aged care can have the effect of restricting a person's movements or their ability to make decisions. Some medications may cause sedation and can be prescribed for pain relief, whilst others such as psychotropic medication can include stimulants, antidepressants, anti-psychotics, mood stabilizers and anti-anxiety agents. 

Pain relief medication that can have the potential to have a restrictive effect can include:

• Oxycodone
• Oxycodone plus naloxone
• Buprenorphine patch

Psychotropic medication which are capable of effecting the emotions, behaviours and mind of a person can include:

• Quetiapine
• Olanzapine
• Risperidone

Physical restraint effects

The use of restrictive practice can present with serious human rights breaches therefore it is crucial that ethical consideration is taken into account. While in certain circumstances, physical restraint may be necessary to mitigate risks to a resident or others in an emergency, the impacts on a person receiving physical restraint can include:

• shame
• fear
• anxiety
• loss of dignity
• agitation
• lower cognitive performance; and
• depression

Documentation Requirements

Under the NDIS Rules 2018, all regulated restrictive practices must be thoroughly detailed in a Behavior Support Template and Behaviour Support Plan.  This document includes information about triggering behaviours and what causes them and how to reduce or stop the behaviours from happening. 

The following points are helpful to consider in a behaviour support plan:

• What is the description of the restrictive practice to be considered
• Why is it being used? What strategies were tried before restrictive practice was considered?
• Process - What detailed instructions about how, where, when the restrictive practice will be used and for how long?
• Recording - How will you make sure that all incidents are recorded or reviewed? How will you monitor the effectiveness of the restrictive practice and how will you monitor any side effects?
• What strategies do you have in place to reduce or eliminate the restrictive practice?
• Training - How will training occur with key staff about restrictive practices?

When a Behaviour Support Plan is being written, consider the following suggestions:

• Keep it simple
• Use simple language.
• Simplify your font, layout and design
• Keep to short sentences
• Use visual images if required
• Highlight what is important
• Read and review - Check your work. Does it make sense? Is it easy to read? Have you captured all relevant information?
• Get it checked! - Have your work colleagues, supervisor or carer review the information. Is it clear? Does anything need amending?

Positive Behaviour Support

Positive behaviour support is about creating individualised strategies for people with disability that are responsive to the person's needs that reduces and eliminates the need for the use of regulated restrictive practices. It focuses on evidence based strategies and person centred supports that address the needs of the person and underlying causes of behaviours or concerns, whilst protecting their quality of life and dignity. It helps people live better lives, with less behaviours of concern through changing things that help a person feel better. 

Positive Behaviour Strategies

Strategies that reflect positive behaviour support include:

• Respecting a person 
• Upholding a person's human rights
• Complying with legislative requirements 
• Supporting a person by doing tasks and activities they like
• Going to places that a person likes
• Stopping things that a person does not like

Policies and Procedures

Policies and procedures must be implemented in your workplace if using regulated restrictive practices, which may include processes and policies relating to:

• Behaviour Support Plans and Implementation
• Informed Consent
• Privacy and Confidentiality
• Client Rights and Responsibilities
• Authorisation of Regulated Restrictive Practices
• Record Keeping and Reporting
• Professional Development
• Reportable Incidences

Module 2A

What is it?

This module is for providers that are implementing the behaviour support plan. An implementing provider is any NDIS provider that uses regulated restrictive practices when they deliver NDIS supports to a person with disability. Behaviour support and the use of regulated restrictive practices are considered high-risk supports, and are subject to additional requirements. 

Click on the following link to read an example of Module 2A and how it is implemented within the service. 

Legislation and Frameworks

The following information provides various legislative frameworks and Standards that relate to restrictive practices in Aged Care and Disability:

• NDIS Practice Standards
• NDIS Act 2013 (Section 9)
• Aged Care Quality Standards
• Quality of Care Principles 2014
• Aged Care Act 1997
• Convention of the Right of People with Disabilities
• NDIS Restrictive Practices and Behaviour Rules 2018
• NDIS Provider Registration and Practice Standards Rules 2018
• NDIS Incident Management and Reportable Incident Rules 2018
• Framework for reducing restrictive interventions - VIC
• Regulated Restrictive Practice Guide
• The Positive Behaviour Support Capability Framework

Ethical considerations

When we think about ethical considerations, the fundamental human rights of a person must be assured according to relevant legislation. Before any assessment is carried out, the rights of a person exhibiting challenging behaviors are being met. This may include making sure that the person has:

• a safe environment to live in
• access to social and community support and regular activities
• the respect of staff and service providers

The United Nations Convention on the Rights of People with Disabilities (2006) states that a person should be "guaranteed freeform from torture and from cruel, inhumane or degrading treatment or punishment" (Article 15).  Further, it states that states should "protect the physical and mental integrity of person's with disabilities, just as for everyone else" (Article 17). 

Professional, ethical guidelines must be complied with by all practitioners.  Practices that are condoned include:

• degrading or demeaning a person
• involve intimidation or aversive outcomes
• involve denial or access to basic supports or prevent people from fulfilling their basic needs
• involve wrongful imprisonment
• give rise to assault or abuse or act in any way that causes physical pain or serious psychological distress; or
• involve the unauthorised use of medication

Read

For further information regarding Codes of Ethics, you can access the following documents:

• Australian Psychological Society (APS) Code of Ethics
• Australian Community Workers Association Ethics and Standards
• The Department of Healh and Human Services Code of Conduct for Disability Workers

Activity

The Aged Care Quality and Safety Commission developed a report titled Restrictive Practices in Residential Aged Care in Australia due to significant public interest and the issue of restraint and ways to either avoid or reduce it.  

Read the report and reflect on the following questions:

1. What are two (2) effects of physical restraint?