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US 27104 V1 Level 3 Credits 2 Name

Workbook Apply the Code of Rights when supporting people in an aged care, health, or disability context

Issue 1.0 – Aug 2011 27104 V1 Apply the Code of Rights when supporting people...

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US 27104 V1 Level 3 Credits 2 Creative Commons

This work is licenced under a Creative Commons Attribution-NonCommercial Licence. You are free to copy, distribute and transmit the work and to adapt the work. You must attribute Careerforce as the author. You may not use this work for commercial purposes. For more information contact Careerforce www.careerforce.org.nz


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Contents

Before you start 4 What is the Code? 7 The ten consumers’ rights 10 Providers’ duties 11 The right to be treated with respect 14 The right to freedom from discrimination, coercion, harassment, and exploitation 17 The right to dignity and independence 21 The right to services of an appropriate standard 24 The right to effective communication 27 The right to be fully informed 30 The right to make an informed choice and give informed consent 32 The right to support 40 Rights in respect of teaching or research 42 The right to complain 44


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Before you start

Welcome to this workbook for: Apply the Code of Rights when supporting people in an aged care, health, or disability context. Unit Standard 27104 V1. For this unit standard you will have: • This workbook. • A trainee’s assessment.

In this workbook you will learn more about: • The Code of Rights. • Supporting consumers in accordance with the Code of Rights. • Providers’ duties in relation to the Code of Rights.

When you see a sticky note like this, it gives a tip or hint.

How to use this workbook • This is your workbook to keep − make it

your own by writing in it. • Use highlighters to identify important ideas. • Do the learning activities included

throughout this workbook. Write your answers in the spaces provided.

• You might find it helpful to discuss your answers with colleagues or your supervisor.

• Finish this workbook before you start on the assessment.


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Workbook activities

Stop – check what you know about this topic

You will see this stop symbol in places where you are asked to stop and think about what you know and: • Record your current knowledge

or impressions. • Check your knowledge.

This stop provides a reference point to return to later. Stop activities have blue shading like this.

Rewind

When you see this rewind symbol, go back to: • Think about what you know. • Check your knowledge.

This rewind gives you an opportunity to add to, change or confirm some of your initial thoughts and ideas. Rewind activities have green shading like this.

Learning activities You will come across learning activities as you work through this workbook. These activities help you understand and apply the information that you are learning about. Learning activities have yellow shading like this.

The glossary and study hints book has study hints for all trainees. It also explains key words and phrases from the compulsory unit standards for Foundation Skills and Core Competencies. You can download it from www.careerforce.org.nz or order it from http://shop.careerforce.org.nz

http://www.shop.careerforce.org.nz/


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Before you go any further in this workbook, think about...

The Code of Rights Think about your role as a support worker. You should already be familiar with the Code.

In your own words explain what “the Code” is:

Give an example of how you might apply one of the rights from the Code when working with a person you support.


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What is the Code?

The Health and Disability Commissioner Act was passed by the New Zealand Government in 1994. This Act created the Office of the Commissioner. One of the Commissioner’s first tasks was to find out what people expected from service providers in terms of quality of care, and then define these expectations by means of legally enforceable rights. A regulation established the Code of Health and Disability Services Consumers’ Rights (1996). It is often simply called “the Code of Rights” or “the Code”. The Code has been updated several times. The purpose of the Code The Code was created to promote and protect the rights of health and disability service users, and to promote fair, simple, speedy and efficient resolution to any complaints that these rights were not being met. The Code outlines the rights of people using a health or disability service in New Zealand. The Code calls these people consumers. The Code also sets out the duties of people and organisations providing health and disability services. These people and organisations are called providers. Providers can include: • Hospitals • Rest homes • Doctors • Nurses • Counsellors • Orderlies • Family members • Support workers

Support workers may also be called: • Nurse aides • Caregivers • Health care assistants • Home care providers


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What the Code covers The Code covers both paid and unpaid work. It even applies to people who care for a family member. The Code covers services such as: • Care of the elderly. • Supporting a person with a brain injury. • Hearing therapy. • Supporting a person with a physical disability. • Diversional therapy. • Moving and handling people.

What the Code does The Code tells consumers how they can expect to be treated when they receive a health or disability service. The Code also tells providers the things they need to do when they provide a health or disability service. The Code sets out the procedure for a consumer to make a complaint and for a provider to respond to that complaint. If the consumer is not happy with this process, the complaint can be referred to the Health and Disability Commissioner. The Health and Disability Commissioner enforces the Code. Sometimes the Commissioner may tell providers that they have to change the way they are doing something. For more information about the Code of Rights, you can contact the Commission at www.hdc.org.nz


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Getting a copy of the Code

The Code is available in many different formats including pamphlets and posters. As a support worker you need to know where to get a copy of the Code − there may be times when the people you support want to check their rights, or when you need to check what your duties are in a particular situation. The way you behave at work must reflect the legal obligations set out in the Code of Rights. You can obtain a copy of the Code from the Health and Disability Commissioner’s office or online at the Commissioner’s website www.hdc.org.nz Many health and disability service providers, eg rest homes and residential service providers, have copies of the Code at their offices. You may also find a copy of the Code in places such as doctors’ surgeries, hospitals, physiotherapists and chemists. All organisations will incorporate the Code in their policies and procedures. If you are unsure of where to find a copy of the Code in your workplace, ask your supervisor. The Health and Disability Commissioner enforces the Code and can investigate breaches of the Code and tell organisations what they must do or what they must change as the result of a complaint that has been upheld.


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The ten consumers’ rights

The Code gives all consumers of health and disability services ten rights. The Code states that consumers: 1 Should be treated with respect, which includes respect for their culture, values, beliefs and privacy. 2 Should receive fair treatment, which includes not being discriminated against, pressured into anything or taken advantage of. 3 Should be supported to live a dignified, independent life. 4 Should be treated with proper standards of care, skill and service. Services should be well coordinated. 5 Should be listened to, understood and given information in whatever way they need, including the use of interpreters where necessary and possible. 6 Should receive full information and explanation about their condition and available options, including estimated costs and waiting times, benefits and side effects. 7 Should make their own decisions and be free to change their minds. 8 Can have a support person with them at most times. 9 Should be told that these rights also apply when they are taking part in research or teaching. 10 Have the right to make a complaint about services in a way that is easy and will not have an adverse effect on the way they are treated.


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Providers’ duties

The Code applies to all health and disability services in New Zealand. It is the duty of health and disability service providers to inform consumers about their rights and to enable consumers to exercise these rights. This requirement may entail: • Sitting down with consumers face to face to discuss their rights. • Providing consumers with written information for their future reference, for example,

the Health and Disability brochure. • Showing consumers how and where to access the Code. • Enabling consumers to have their rights met, which means ensuring that the

services provided to consumers are of an acceptable standard and meet the requirements of the Code. Consumers’ rights are considered at all stages of service delivery.

• Doing everything they reasonably can for consumers in terms of what the Code

requires. • Showing how rights and duties in the Code have been implemented eg asking

consumers whether their rights have been respected, and if their support has been consistent with what the Code requires.

• Informing consumers of the process to follow if they feel that any of these rights

have not been met, including telling them how to make a complaint. • Evaluating whether the process of gaining informed consent is effective and

satisfactory to the consumer. • Following other laws such as the Privacy Act (1993) and Health Information Privacy

Code (1994) and subsequent amendments. The provider is required to keep consumers’ information confidential and only use it for the correct purpose.

• Training support workers to ensure that they recognise and apply consumers’ rights.


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LEARNING ACTIVITY

Tick yes or no for each statement.

Statement Yes No

The purpose of the Code is to protect the rights of the organisation.

The Code describes the rights of consumers.

The Code is intended to provide protection and quality of service for consumers.

The Code describes the duties of organisations when they provide a health or disability service.

The Code states that consumers need to access the Code of Rights by themselves.

The policies and procedures of the organisation must reflect the Code of Rights.

The purpose of the Code is to protect the rights of consumers.

The Code describes the rights of the organisation.

The Code outlines a process for organisations to follow if they wish to complain about a consumer.

The Code outlines a process for support workers to follow if they wish to complain about a consumer.

The Code describes the rights of support workers.

The Code states that organisations must inform consumers about their rights.

The Code follows other legislative requirements such as the Privacy Act (1993) and the Health Information Privacy Code (1994).


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Before you go any further in this workbook...

Find the relevant documents that your organisation has relating to the implementation of the Code of Rights.

What duties does your organisation have to the people you support?

What do these duties mean to your role as a support worker?


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1 The right to be treated with respect

The Code states that consumers should be treated with respect, which includes respect for their culture, values, beliefs and privacy. Every consumer has the right to be provided with services that take into account the needs, values, and beliefs of different cultural, religious, social, and ethnic groups, including the needs of Māori. As a support worker you can ensure that this right is met by: • Acknowledging and using a consumer’s preferred name. • Providing as much privacy as possible for a consumer, taking care to knock on

doors and wait to be told to come in before entering. • Making sure that others are respectful of a consumer’s quiet time. • Knowing consumers’ values and acting on this knowledge so that you do not offend

them. • Positively supporting consumers where their values are different from your own. • Talking about personal items with the consumer when no-one else can hear. • Raising personal matters at staff meetings, where other consumers can’t hear. • Keeping personal information you learn at work to yourself.


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LEARNING ACTIVITY

Read this scenario about the right to be treated with respect. Think about how you could demonstrate this right with the person in this scenario.

Scenario Liam provides home support for 8-year-old Tane, who has Down syndrome. Liam usually takes Tane to swimming and drama classes on a weekly basis, and helps with his homework so that his mother can have a break away from the house. Tane’s family are Māori and attend church. At meal times they usually bless the food before they eat, sometimes in English and sometimes in Māori. Liam’s background is different to Tane’s and he has not often spoken a grace/blessing. In school holidays Liam also supports Tane at a holiday programme. At the school holiday programme Tane asks Liam to help him say grace but Liam is embarrassed and brushes it off and says that grace is only for at home. Later at the holiday programme when it’s time to go outside, the children are putting their sun hats on. Tane needs help with his and Liam checks with Tane that it’s OK for him to touch his head, and does so as quickly and gently as he can. Liam knows that the head is sacred in Māori tikanga (protocols/traditions/customs) and doesn’t want to offend or upset Tane by touching him in a way that he shouldn’t.

In what way did Liam support Tane’s Māori cultural values?

If you were supporting Tane, how would you support his religious values?


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LEARNING ACTIVITY

The scenario about Tane could be called a case study. A case study is when an example of a real person is used. It is important to protect the identity of people used in a case study by leaving out or changing their names or other personal details. Talk to your colleagues and write down an example of a case study. Set the scene – briefly describe the person’s age, gender, culture, and the reasons for accessing health or disability services. Describe how the support you provide upholds the person’s right to respect.

Set the scene

How do you support the person?


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2 The right to freedom from discrimination, coercion, harassment, and exploitation

Every consumer has the right to receive fair treatment, which includes not being discriminated against, pressured into anything or taken advantage of, which includes sexual, financial or other exploitation. As a support worker you can uphold this right by: • Ensuring that consumers are able to make decisions without being pressured or

manipulated by you. They should be able to make their own decisions without worrying what you think about these decisions.

• Supporting consumers to take action, or taking action on their behalf, if you notice

other people are treating them in an unfair manner, or are trying to get them to do things you do not think are safe choices, or which they really don’t like, or are otherwise taking advantage of them.

• Not taking advantage of a consumer’s vulnerability eg using information about a

person’s situation for your own benefit.

Definitions Discrimination is when one consumer is treated differently from another. For example, if a consumer tells you that he is homosexual, it should not affect the way in which you provide care or support. Coercion is when consumers are pressured into doing something they don’t want to do, or threatened that something bad will happen if they don’t do as you want, for example, making someone finish eating all the vegetables before a dessert is allowed. Exploitation is when consumers are used or taken advantage of in a way that means someone else benefits, for example, a family member constantly asks for money. Harassment is when a person keeps behaving badly towards consumers in a way they don’t like or find upsetting, for example, making critical comments about a consumer’s disability which upsets the person and lowers his/her self esteem.


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LEARNING ACTIVITY

Read this scenario about the right to fair treatment. Think about the person’s right to freedom from discrimination, coercion, harassment and exploitation. Scenario Lisa is collecting money for the annual appeal of an environmental organisation, unrelated to her support worker role. She knows that John, one of the people she supports, used to own a large business in his younger days and has got quite a lot of money. She would like to see this money put to a good cause. So, in the weeks leading up to the appeal Lisa talks to John about it, saying how much good the organisation does. She knows he doesn’t always hear or show that he understands what she says, but that he usually does things to please her. On collection day she goes to his house and signs him up to make a monthly donation to the organisation.

Did John get fair treatment from Lisa?

Explain in your own words any way in which Lisa showed discrimination, coercion, exploitation or harassment in her treatment of John.


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LEARNING ACTIVITY

In your own words describe what discrimination means. Use this word in a sentence.

In your own words describe what coercion means. Use this word in a sentence.

In your own words describe what exploitation means. Use this word in a sentence.

In your own words describe what harassment means. Use this word in a sentence.

The glossary and study hints book has definitions of key words.


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LEARNING ACTIVITY

For the questions below, think about people you support.

What do you do to ensure that you do not discriminate against the people you support? Give an example.

What do you do to ensure that you do not coerce people you support into doing something that they do not want to do?

Give an example of how you encourage people to do tasks that are necessary to be done but which they may not want to do eg taking a shower.

What do you do to ensure that people you support are not exploited by other people?

Give an example.

What do you do to ensure that people you support are not harassed by other people? Give an example.


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3 The right to dignity and independence

Every consumer has the right to have services provided in a manner that respects the dignity and independence of the individual. You need to make sure that all support you give is provided in a way which maintains a consumer’s dignity. As a support worker you can ensure that this right is met by: • Giving consumers enough time to do things for themselves, without rushing them.

Often people with an intellectual or physical disability need more time to complete everyday tasks.

• Providing opportunities for consumers to try new things in environments where they

feel safe and have your support as required. • Ensuring that you adequately prepare consumers for new experiences or changes,

so that they are more able to cope. This preparation might mean developing a suitable transition plan for someone who is moving house, or creating a visual strategy to show the steps involved in a new task.

• Providing privacy when you are supporting consumers with intimate care tasks, and

carrying out these tasks without fuss. • Providing support that gives consumers the most opportunity to do things for

themselves; for example, ensuring that you prompt only as required, that you step in to help only when needed, and that you provide any instruction in a way that the consumer is able to understand.

• Treating consumers as you would treat other people. For example, you should use

age-appropriate language when talking to or about consumers, only discussing their personal details when you have their permission, introducing them in the same way you would introduce anyone else, and interacting with them in valuing ways at all times.


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LEARNING ACTIVITY

Read this scenario about the right to dignity and independence. Think about how you would maintain the person’s dignity. Scenario Lisa is supporting Patrick with his personal care. Patrick has cerebral palsy and a significant intellectual disability. He does not use any verbal communication, and his support team have to interpret how he is feeling by observing his body language. Patrick does not usually make any attempts to communicate intentionally with those around him, and many of his actions are at a reflex level. Lisa starts to change Patrick’s continence pads, a task which she finds unpleasant. As she changes the pad she talks to herself, knowing that Patrick can’t understand her, saying things like “oh, that’s gross” and “this is the worst part of my job”. Next it is time for Patrick’s bath. There is a switch on the side of the bath so that Patrick can hit it with his hand to turn the spa bubbles on and off. On the advice of Patrick’s speech language therapist the support team have been trying to help him develop an understanding of cause and effect, and this is one of the strategies. Lisa gives him a big smile whenever he manages to touch the switch.

How did Lisa support Patrick’s independence?


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If you were supporting Patrick with his personal cares, how would you maintain his dignity?

In your own words describe what dignity means. Use this word in a sentence.

In your own words describe what independence means. Use this word in a sentence.

What else do you do to maintain the dignity and independence of people you support?


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4 The right to services of an appropriate standard

This right states that every consumer has the right to receive proper standards of care, skill and service. Services should be well coordinated. Services should be provided with reasonable care and skill, which means that support staff are trained properly, and carry out duties in the way that has been agreed. Services should comply with legal, professional, ethical and other relevant standards. For example, a physiotherapist must abide by the code of ethics of the professional association, and a residential service provider has to meet the terms of the contract with the funder. Your organisation will have the relevant standards incorporated into its own policies and procedures. Services should be provided in a manner consistent with a consumer’s needs. For example, an individual service plan should be focused around the specific needs of each consumer, taking into account the consumer’s strengths, support needs, and wishes for the future. Services should be provided in a manner that minimises harm and enhances the consumer’s quality of life. Co-operation among providers is required to promote quality and continuity of services. For example, if a consumer is moving to a new service, the previous service provider must provide information and help with the transition.


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As a support worker you can ensure that this right is met by: • Following service plans that have been developed for consumers. • Informing your supervisor of any changes in consumers, including their health and

wellbeing, skills, or needs and wants. • Keeping up to date with any paperwork that is part of your role (such as completing

a daily diary, writing progress notes, or filling in a medical form). These actions help everyone in your team to work consistently and minimises the risk of mistakes in the way consumers are supported.

• Contacting your supervisor immediately if you are unsure what to do in a particular

situation or are worried that someone is at risk of being harmed. • Reporting any incidents which occur, so that any necessary changes can be made

for the future. Your organisation will have policies and procedures on reporting incidents, which you should follow.

• Only undertaking support and tasks that you have been trained to do. • Making sure that you take up relevant learning and development opportunities which

are offered by your organisation. • Discussing your learning and development needs with your manager, especially if

you are struggling or not confident with any aspect of your work.


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LEARNING ACTIVITY

Read this scenario about a person using a health and disability service and the right this person has to services of an appropriate standard. Scenario

Sarita is in her 60s and has a visual impairment and is legally blind. She lives at home and receives support to help with grocery shopping and accessing community services. One day her usual support worker is unwell and she is provided with a relief worker instead. The relief worker has met Sarita previously and has been oriented to working with her, so he knows what is expected of him while he supports Sarita. It has been several months since this orientation, however, and the relief worker did not re-read the service plan before his visit. Sarita is pleased with the way that he is able to support her with getting in and out of the car, and getting around the supermarket. On the way home Sarita realises that they forgot to get a loaf of bread, and she asks to stop at a dairy so she can get one. The relief worker thinks that Sarita did so well at the supermarket that she doesn’t need support at the dairy (despite what is written in her service plan), and he leaves her to walk into the dairy on her own, after helping her out of the car. Unfortunately Sarita could not see that there was a large gutter leading up to the footpath and had a nasty fall, grazing her leg badly and needing a visit to the doctor.

Comment on how this scenario does or doesn’t support right four of the Code:

What would you have done differently if you had been Sarita’s relief worker?


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5 The right to effective communication

Consumers should be listened to, understood and given information in whatever way they need. All communication should be provided in a way that the consumer can understand, including the use of interpreters where necessary and possible. The environment should make it possible for everyone to communicate openly, honestly, and effectively. The same strategies will not work for every consumer, and it is important to individualise them. As a support worker you can ensure that this right is met by: • Being responsive and polite to consumers. • Being responsive and polite to your colleagues, so that it is easy to share

information and be consistent as a team. • Seeking advice from your supervisor if you are unsure of the answer to a

consumer’s query. • Working hard to establish good relationships with consumers so that they are able to

trust you and communicate openly with you. • Finding out how consumers prefer to communicate and helping them to understand

and to get their messages across. If there is a report from a speech and language therapist, you should know what has been recommended and make sure that you carry out these suggestions.

• Using visual communication methods such as pictures, photos, signs and gestures.

This is especially important if consumers find reading difficult or if they respond better to pictures than words.

• Recognising that it can be difficult for consumers to change what they do, but you

can make a big difference by changing what you do. For example, it might be hard for consumers to learn to understand complicated sentences, but you could instead speak in shorter sentences and use more gestures to make your meaning clear.


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LEARNING ACTIVITY

Read this scenario about the right to effective communication. Think about what you do to uphold this right with the people you work with. Scenario Jason is a young man who lives in a residential service with three other young adults, and who uses sign, gestures and pictures to communicate. He does not communicate verbally. Jason’s individual plan is due to be reviewed and re-written for the coming year. Tim, his main support worker, started talking to Jason about his individual plan a couple of months in advance of Jason needing to decide on his goals. Because Jason communicates through sign language and picture symbols but does not use any verbal communication, Tim helps him to prepare a set of picture symbols for his individual plan meeting, so that he is able to share his ideas easily. This suits Jason’s style of communicating. On the day of the meeting Linda arrives to coordinate the meeting. During the meeting Jason is very withdrawn and reluctant to participate − luckily the pre-prepared symbols help him to share his thoughts. Later Jason explains to Tim that he didn’t feel comfortable to express his ideas freely while Linda was around because she usually ignores him and makes decisions for him.


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How did Tim support Jason’s right to effective communication?

How could Linda support Jason’s right to effective communication?

What do you do to make sure you have effective communication with the people you support? Give an example.

What do you do to communicate effectively with the people who work with you? Consider your co-workers, colleagues, team members and/or supervisor.


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6 The right to be fully informed

Consumers should receive full information and explanations about their condition and available options, including estimated costs and waiting times, benefits and side effects. Every consumer has the right to information that anyone else would expect to receive, including: • The results of any tests or procedures. • An explanation of the condition. • Any options available and the details of these options. • Timeframes for services to be provided. • Enough information to make an informed choice or give informed consent. • Honest answers to reasonable questions about the service being delivered. • Written summaries of information if asked for.

As a support worker you can ensure that this right is met by: • Knowing who to refer consumers to if they have questions about their condition or

their service − often this will be your supervisor or a health professional. • Supporting consumers to ask for explanations of tests, procedures, results, options

and timeframes if you are assisting them to use another health or disability service. • Supporting consumers to request a written summary if they are using another health

or disability service. It may also be useful to make time to discuss the written summary with them later, especially if they have difficulty with reading.

• Providing information about all options in a way that the consumer can understand.

You might need to use pictures, or real objects to explain some things, for example, pictures showing what will happen during a hospital procedure, and what the expected outcome will be.


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LEARNING ACTIVITY

Read this scenario about the right to be fully informed. Think about how you make sure that the people you support are fully informed. Scenario Jane is a young woman with a mild intellectual disability. Lately she has been feeling more anxious than usual and finding it difficult to cope. Her doctor has referred her to see a psychiatrist, and Jane is going to the appointment with her support worker, Lisa. The psychiatrist and a multidisciplinary team complete some assessments and share the results with Jane. They tell her that she does not have a psychiatric condition but that she does have significant characteristics of autism spectrum disorder (ASD), and that some of these difficulties are leading to the anxiety. They give her a written report to confirm this finding. A week later Jane starts asking Lisa to tell her about ASD and asking what she should do about it − she was not given any explanation or told where to get information from. Jane is feeling very confused.

How could the multidisciplinary team have made sure that Jane was fully informed?

If you were Jane’s support worker, what would you now do?


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7 The right to make an informed choice and give informed consent

Consumers should make their own decisions and be free to change their minds. They can refuse a service or change their minds about wanting one. They can say who they would like to provide a service for them, and should have that request met when it is practical. For example, if the consumer would prefer a female doctor this can be requested, or a specific support worker could be requested to be the key person. Sometimes these requests are able to be met, but other times it may not be possible. Some types of consent have to be given in writing, including consent for: • Participating in research or experiments. • Having general anaesthetic. • Anything that poses significant risk to a consumer.

Apart from the exceptional situations, the consumer’s consent is always required before services can be provided. Exceptional situations can include: • Providing life-saving treatment in an emergency. • A consumer who does not have the mental capacity to consent on his/her own

behalf.


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Giving consent All consumers must be treated as if they are able to give consent and make choices unless there is a reasonable reason for believing that they can’t. This is not your decision to make − it will be made by your supervisor or manager. Even in these circumstances consumers should be supported to give consent at a level that they are able to understand. For example, not all consumers may have the capability to understand the implications of a hospital operation, but may be able to give consent about more straightforward choices such as who they want to live with, or what activity to do on a Saturday night. More complex issues arise for people with an intellectual disorder who have been charged with, or convicted of, a criminal offence, or who are subject to compulsory assessment and treatment for a variety of reasons. Laws such as the Intellectual Disability (Compulsory Care and Rehabilitation) Act 2003, and Mental Health (Compulsory Assessment and Treatment) Act 1992 govern treatment for people unable to give free consent in such situations. When a consumer is unable to give consent the service must make decisions based on that person’s best interests, the person’s views (if they can be determined), or the views of someone the person is close to who is interested in the person’s welfare. Consumers may have given authority to someone else to act for them through an enduring power of attorney; or they may have recorded their views as an advance directive or living will. Read more about these documents on the following pages.


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As a support worker you can ensure that this right is met by: • Providing consumers with enough information to make choices on an everyday basis

− discussing all situations in a way that makes sense to them. People will find it easier to make big decisions if they have had practice with smaller decisions.

• Getting to know consumers well so that you know what they value and can help

them make sense of difficult situations. Keep your own opinions to yourself − people need to make up their own minds!

• Seeking help if a consumer needs more information to make an informed choice −

talk to your supervisor. • Informing your supervisor if consumers are in a situation where they need to make a

difficult decision. • Making sure that consumers know they do not have to consent to a situation if they

choose not to do so. • Respecting consumers’ right to change their minds, but making sure that they have

considered the consequences of doing so. • Informing your supervisor straight away if you are asked to give consent on behalf of

a consumer − it is not legal for you to give consent for someone else. • Ask your supervisor if a consumer has given someone an enduring power of

attorney or has written an advance directive. It is important to know where these documents are kept in case they are needed urgently. (There is more on these documents on following pages.)


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LEARNING ACTIVITY

Read this scenario about informed consent. Think about how you could support this person. Scenario Today, you are supporting Mr Leary earlier than usual. He needs to be ready for an outpatient appointment at the local hospital. Mr Leary is going to have a cataract operation soon which will help with his failing eyesight. His doctor has already given him information to read before he goes to the hospital appointment. When Mr Leary gets to the hospital, he will have the chance to ask any questions about the planned surgery and after-care. He will then be asked to fill in and sign a form. Mr Leary is giving informed consent to have the operation. This written consent will be checked by staff at the hospital before the operation starts, to make sure Mr Leary still wants the surgery.

What support could you provide to Mr Leary to help him understand the operation before he goes to the hospital?

What support could you provide to Mr Leary after he returns from the outpatient appointment?


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An enduring power of attorney A power of attorney is where a person gives authority to someone else (the “attorney”) to act for that person. An enduring power of attorney (EPA) is designed for long-term protection and will continue if the person becomes mentally incapable. There are two types of EPA − for property or for personal care and welfare. A trustee company can be a person’s property attorney and manage property and financial decisions. An EPA for personal care and welfare only comes into effect when the person becomes mentally incapable. A personal care and welfare attorney has to be a private individual and is usually a close friend or family member. The kind of decisions made might be about medical treatment or admission to residential care. Attornies have responsibilities to act in the person’s best interests at all times. They should involve the person in the decision making as far as possible, and not abuse the trust that has been placed in them. Decisions about personal care and welfare can include: • Where someone will live. • The diet a person will be given. • Types of clothing someone will wear. • Consent (or refusal) for medical treatment or

procedures.

It is important for a support worker to know if a person has an enduring power of attorney in place and, if so, who needs to be contacted when a decision needs to be made about matters such as a change in medication or consent for an operation. There are some significant decisions that cannot be made by a personal care and welfare attorney, for example, refusing to consent to life-saving medical treatment. A person may record future choices about such medical care to cover a situation when he or she is unable to communicate, by recording them in an advance directive. Age Concern has information and handouts on enduring power of attorney available from www.ageconcern.org.nz


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LEARNING ACTIVITY

Read this scenario and answer the questions as if you were supporting Edna. Scenario Edna Collins is 78 years old and has a weak arm and leg from a stroke a few years ago. Edna has been living at home with daily help from support workers. Edna’s only relative is her nephew, John, who lives in the same city. Ever since her husband died, Edna has relied on John for advice and support about things to do with her house and finances. When Edna began to show signs of memory loss and confusion, her doctor talked to her about giving John an enduring power of attorney (EPA) so that he could continue to look after her if there came a time when she wasn’t capable of making decisions for herself. Edna’s EPA was filed with her lawyer, and a copy given to her doctor and to John. Recently Edna has become increasingly confused. She left the stove on one day and the neighbours saw smoke and called the fire brigade. One night she had a fall and became very frightened when she couldn’t remember the way back to her bedroom. Luckily, Edna wasn’t injured and used her personal alarm to call for the ambulance. John decided that, in the interests of Edna’s wellbeing, he needed to use his EPA to move his aunt into residential care. It was a hard decision because Edna didn’t understand what was happening and she was upset at having to leave her own home. She soon settled in at the rest home, however, and her service plan has a copy of her enduring power of attorney. John and his family visit as often as they can. Imagine that you are a support worker for Edna at the rest home.

How would you find out that Edna had an enduring power of attorney?

What would you need to know about Edna’s enduring power of attorney?


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An advance directive An advance directive is also known as a living will. Advance directives are written or oral directives that allow people to record decisions about the medical care they would like to receive at the end of their lives if they are no longer competent to make choices, for example, if they are unconscious. The advance directive is a form of communication that makes the wishes of the person clear, which can be helpful to family, friends and healthcare professionals. In a healthcare setting it is important to know if a person has made an advance directive and where it can be accessed. People may carry a card to alert healthcare providers that an advance directive exists. Medical procedures or treatment to sustain life can be accepted or refused. The type of things that might be in an advance directive include: • Whether someone wants CPR (cardiopulmonary resuscitation) to be performed if the

heart stops beating. • Whether the person wishes to be kept alive on a ventilator if unable to breathe

without assistance. • Whether being kept alive by tube feeding is acceptable. • What kind of drug therapy is acceptable. For example, someone might choose to

have pain relief but not antibiotics to fight an infection. • What the person prefers to happen with possible organ or tissue donation.

The New Zealand Medical Association has further information on advance directives at www.nzma.org.nz


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LEARNING ACTIVITY

Read this scenario and answer the questions. Scenario

Albert Harris is 87 years old and lives in a residential care facility. He has a long history of heart disease and he gets frequent episodes of chest pain and sometimes has a lot of difficulty breathing. Albert talks to his doctor and his family about making an advance directive. If his heart should stop or if he stops breathing, he doesn’t want to be resuscitated. The doctor makes sure that Albert understands this decision: • He is declining the use of a defibrillator. • He is declining artificial respiration. • He is declining drug therapy. • He will die without these supports.

Albert fills in an advance directive form with the support of his solicitor, who believes that Albert is competent to make such an important decision. Albert then gives a copy to his family and one to the care facility staff who include it in his file and service plan. Late one night Albert suffers a severe episode of chest pain and he stops breathing. An ambulance is called and although the ambulance officers have all the equipment to start a resuscitation attempt, the staff members are able to show them the advance directive which shows that Albert doesn’t want this to happen. While sad to have lost Albert, the family takes comfort in knowing that this was what he had wanted.

In the place where you work, how would you know that the person you support has an advance directive?

What would you need to know about the advance directive to make sure the support you provide for the person is what the person wants?


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8 The right to support

A consumer can request one or more support persons at most times, unless it is an unsafe situation or has a bad effect on another consumer. As a support worker you can ensure that this right is met by: • Checking whether consumers would like someone present when they use a health

or disability service, or attend a meeting within your organisation. For example, they may wish to have you or someone else present when they visit their doctor, or to have family members attend their service plan meeting.

• Knowing whether there are any people who may cause safety issues (or other significant issues) for consumers. Your supervisor should help you put in place a plan so that you know how to manage such a situation.

• Informing consumers of the advocacy service for support with a complaint.

An advocate is on the person’s side, and will have a good understanding of consumers’ rights and providers’ obligations. Advocates provide this support free of charge. You can read more about advocates further on in this workbook.

How have you demonstrated this right to support with one of your consumers? Give an example.


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LEARNING ACTIVITY

Read this scenario about the right to support. Imagine that you are the support worker. Scenario While you are supporting Judith, her daughter visits her. Judith’s daughter is looking at the information about the new medicine that the doctor would like Judith to take. She asks you what you think about the medicine and whether or not you think it is a good idea for Judith to take it. You know that the role of a support worker does not allow you to give advice. You suggest that your supervisor, who is a registered nurse, talks to them both about it. Judith’s daughter thinks this is a good idea because they both have some questions. Later you find out that your supervisor encouraged Judith to write down her queries so that she could ask her doctor when she next visited him. Unfortunately Judith’s daughter could not go with her mother to the doctor’s appointment to support her to ask the right questions, and Judith did not get the answers she needed.

What did your supervisor suggest?

Did this suggestion work? Why or why not?

What else could you suggest be done now?


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9 Rights in respect of teaching or research

Consumers should be told that the rights in the Code apply when taking part in research or teaching. Consumers should also be told that these rights apply when it is proposed they take part in teaching or research. A consumer does not have to participate in teaching or research. As a support worker you can ensure that this right is met by: • Informing consumers of their rights. • Making sure consumers know that they can refuse to participate if they want to. • Supporting consumers to get all the information they need to make an informed

decision about participating. • Making sure consumers fully understand what is involved and are aware of any

risks. • Ensuring that consumers get written information and the necessary forms. For

example, written information should be provided, and a consent form must be signed before a consumer can participate in teaching or research.

Has any person you support been asked to participate in teaching or research?

What did you do? Or what do you think that you would you do if this happened?


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LEARNING ACTIVITY

Read this scenario about the rights in respect of teaching or research. Imagine that you are Rana, the support worker who is teaching this task. Scenario

Rana is going to help Angie learn how to support Avie with her blood glucose monitoring. Rana is aware of her responsibilities under the Code of Rights to make sure that Avie is fully informed before she participates in any support worker teaching. Before showing Angie what to do, Rana talks to Avie and asks her whether she agrees to let Angie learn the correct procedure. Avie agrees that Angie can be taught how to monitor her blood sugar levels. Avie knows that sometimes she doesn’t feel well enough to do it herself. Avie says she is glad that Rana is such a good teacher, because she knows that Angie will learn the correct way of doing things.

When would you ask Avie if she consented to a support worker learning the task?

What would you have done if Avie had said “no” to your request?

What care do you need to take of Avie during the teaching?

What would you say to Avie when the teaching is over?


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10 The right to complain

Consumers have the right to make a complaint about services in a way that is easy and which will not have an adverse effect on the way they are treated. The complaints procedure, and any forms needed, should be given to consumers when they first meet with the organisation. All consumers have the right to complain about a service they receive in a way that works for them, which could be by phone, in person, using sign language, or in writing. They do not have to fill in a form if they do not want to or are unable to. Complaints can be made to the person who provided the service, someone else who is responsible for dealing with complaints (perhaps that person’s supervisor), or any other person, including an advocate or the Health and Disability Commissioner. An informal complaint can be made by anyone, and it can be anonymous. A formal complaint can be made by a consumer or a relative or representative of a consumer, and it requires a signature. Once a consumer has made a formal complaint, your organisation must investigate it. Health and disability service providers have a duty to respond to the complaint. Complaints must be taken seriously and dealt with in a fair, simple and timely manner. Your organisation will have policies and procedures about how you should report a consumer’s complaint. You must follow those procedures. When you uphold consumers’ rights to complain, you are making sure that they are treated in a way they are entitled to.


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As a support worker you can ensure that this right is met by: • Asking your supervisor to show you a copy of your organisation’s complaint

procedures. Your supervisor should show you the complaints form that is available to your organisation’s consumers.

• Informing consumers of your organisation’s complaints procedure if they are

unhappy about something related to their service. • Supporting consumers to make a complaint if they are unable to do it on their own.

This support is especially important for people who have difficulty with communication or literacy.

• Informing consumers about the free advocacy service, for support with a complaint.

You can read more about advocates further on in this workbook. • Informing your supervisor of any complaints that you receive and following your

organisation’s policies and procedures about complaints. You must follow this process even if the complaint is about you.

Compare this complaints form with the form your organisation uses.


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Complaints about you • If a consumer makes a complaint about you, that person will probably complain

directly to your supervisor or manager. For example, the consumer may wish to express concern about an ornament that you have accidentally broken.

• Your supervisor will tell you that a complaint has been made about you. Your

supervisor will explain the procedure to you and ask for your comments on the complaint.

• Once a consumer has made a complaint, your organisation must investigate the

complaint. To investigate, someone must talk to the consumer, to you and any other people involved, and decide what to do about the complaint.

• You can have a support person with you when your supervisor is interviewing you.


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LEARNING ACTIVITY

Read the scenario describing how a person uses his right to complain. Think about what would happen in your work. Scenario Bill Leary has an outpatient appointment as a follow-up from his recent cataract surgery. He had already arranged with the home support agency for Jenny, his usual support worker, to visit earlier, so that he can get to his appointment on time. However, Jenny is sick on the day of his appointment. A replacement worker has been organised, but she was not given the message to come to Bill at the earlier time. Bill misses his outpatient appointment. Bill is very upset about this, because his son had to take time off work to take him, and he now has to make another appointment. He decides he wants to make a complaint. When Jenny visits the next day, he tells her that he wants to make a complaint. Jenny is able to tell him how to do this and that he can have support if he wants. Bill decides that he will make a verbal complaint, so Jenny finds the phone number and writes it down for him. Jenny also leaves him with a copy of the Code of Rights. The next day, the home support agency receives a verbal complaint from Bill. The supervisor records this complaint and follows it up with a letter to Bill stating that his complaint has been received. The letter describes the process the agency will take to investigate the complaint and how Bill can access an independent advocate if he wishes.

In your work, how would you support people with their right to complain?


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Provider duties for complaints All health and disability services must have a complaints procedure. Part of your role is to be aware of the process and to support consumers to make a complaint if they wish to do so. If you are not familiar with your organisation’s complaints policy or procedures you should ask your supervisor for a copy. Ask your supervisor to go through it with you and show you the complaints form that is available to your organisation’s consumers. An organisation’s procedures must make sure that the following things happen. • Consumers must be contacted within five days to say that their complaint has been

received. • Consumers must be told about the complaints procedure so they know what to

expect. They must be given all information about how the complaint is being dealt with.

• Everything about the complaint and how it is dealt with, must be written down. • Within ten days of receiving a complaint providers must decide what to do about it

or let the consumer know when they will make a decision. • Providers must also tell consumers the reason(s) for their decision, what action they

are going to take, and let them know how to challenge the decision if they don’t agree with it.

• Every provider must inform a consumer about progress on the consumer’s complaint

at least every month.


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LEARNING ACTIVITY

Read your organisation’s policies and procedures about complaints. Answer the questions.

What does a consumer have to do to make a complaint?

What will happen when the complaint is being investigated?

How long will a consumer have to wait for a decision about the complaint?

How long will the consumer have to wait for action to occur after a decision has been made about the complaint?

What are you expected to do to support a consumer with a complaint?


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Advocates

To help resolve complaints, a free independent advocacy service is available throughout New Zealand through the Health and Disability Commissioner. Consumers have the right to have an independent advocate to support them with their complaint. Advocates are on the side of the consumer. Advocates are trained to help consumers to resolve complaints with providers. The advocate will listen to the consumer, give information about the consumer’s rights, help the consumer choose an option to settle the complaint, and support the consumer to decide what course of action to take. Advocates will keep information confidential and not disclose information without the proper authority unless safety is compromised. There is more information available on the website of the Health and Disability Commissioner www.hdc.org.nz or by emailing [email protected] or calling free phone: 0800 555 050.

Where is your nearest advocate located?

How can a consumer expect to be treated by an advocate?

http://www.hdc.org.nz/

mailto:[email protected]


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When a complaint cannot be resolved If consumers are not satisfied with the provider’s response to their complaint they can complain to the Health and Disability Commissioner. They can do this by contacting the Commissioner’s office by mail, email, or phone. Their complaint does not have to be in writing. Many of the complaints the Commissioner receives are about complaints not being taken seriously by providers, or complainants not being told what is being done about the complaint. Keeping people informed is a very important way of dealing with a complaint and resolving any dispute. If a consumer complains to the Health and Disability Commissioner the complaint will be considered, and the best way to deal with it is then decided. The Commissioner must act impartially − like a judge − and not take sides. The consumer may be given an opportunity to comment and to raise any further points relevant to the investigation. The length of time an investigation takes depends on the complexity of the complaint, the number of people involved, and how long ago the events took place. Everyone is given enough time to have their say about the matter and to gather all information. The Commissioner looks at all the information and then makes a final decision, producing a written report. The Commissioner will notify the consumer and the provider. The Commissioner’s final opinion will usually include some recommendations. The most common recommendations for providers who have not met their obligations under the Code are: • An apology. • A change in the way things are done. • Changes to organisational policies to make it easier for individual providers to meet

the requirements of the Code of Rights. • Referring the complaint to another body such as ACC, the Ministry of Health or the

Medical or Nursing Council.


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Rewind to pages 6 and 13...

Do you agree with your initial thoughts and ideas?

What would you do differently now when supporting people?


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My notes


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Completion and assessment Congratulations! You have come to the end of the workbook for Unit Standard 27104 V1: Apply the Code of Rights when supporting people in an aged care, health, or disability context. Please check over all the activities in this workbook to make sure you have completed them.

Your assessment is next You need to complete the trainee’s assessment successfully to be credited with this unit standard. Your assessor will sign you off once you have completed the assessment tasks satisfactorily.

Your assessor is able to give you a “Certificate of completion” for achieving this unit standard.


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Acknowledgements Careerforce would like to thank the people who have contributed their time and effort into creating this workbook by: • Research and content validation. • Advice and expertise. • Testing the activities. • Sharing personal experiences. • Appearing in photographs.

Disclaimer: The images contained in these workbooks are visual illustrations only and are not representative of actual events or personal circumstances.

Issue 1.0 – Aug 2011

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