Care & Support Services - Achieving Best Practice
Principles
Principles
Choosing the right health and support services for someone with learning disabilities is necessary to ensure their treatment is both caring and beneficial. As individuals, we have choices that we can make independently, but those with learning disabilities may have that choice taken away and support services need to ensure that they are offering the best possible care.
This section will highlight the principles which determine good practice including:
- Choice
- Rights
- Respect and dignity
- Individuality
- Privacy
- Confidentiality
- Emotional needs (and empathy)
- Independence
- Valuing people
What does the title Principles and Good Practice actually mean? Is it simply professional jargon? How should we understand the terms?
To a certain extent, it is part of the language of professionals within both social and health care.
'Principles' can be described as:
- 'moral rule - guiding behaviour', 'consistent regulation of behaviour according to moral law', 'to impress with a doctrine'
- 'a constituent part', 'a fundamental'
In the social care context, they have evolved from sets of values, which over time, have been recognised as having intrinsic worth and goodness.
'Practice' relates to: an action, a custom, what is done regularly.
Practice can also be associated with procedures, which can be many and varied according to profession, e.g. administrative, sterile techniques, handling of bodily fluids, or health and safety.
This section is not about exhaustive details of various good procedural processes, but about some of the general values that influence day to day practice and particularly the field of learning disability social care. We explore some of these values and principles which can 'stand alone' as well as be interwoven in ways which help create a holistic picture of good practice to better understand individual needs.
Choice
Making choices for most of us is part of our everyday life. It is a fundamental part of us being recognised and respected as an individual. Such choices contribute to us having control over our lives and individuals with learning disabilities also have the right to participate in decisions which affect their lives.
Our practice should recognise the right of service users to make their own choices. Alongside this, services also need to provide capacity to give their users options. Choosing to 'take it or leave it' is not a real choice. Choice for users is now rightly promoted as a quality standard when care organisations advertise their services and forms part of how they are judged.
The vast majority of decisions - and perhaps virtually all choices - can ultimately be tackled by most adults with a learning disability if the right information and options are made accessible to them in terms they can understand. These efforts can involve advocates and other measures to safeguard the choice or decision making and may, for some parties, require considerable time and expertise in communication.
Choice is one of the major core elements of Person Centred Planning approaches. See sections on
- Choice
- Consent and Decision Making
- Person Centered Planning (PCP)
Rights
Recognising a person's rights is fundamental to recognising their worth. An opportunity to enforce your rights is a feature of a civilised society. Rights (along with education) are said to be one of the main vehicles of empowerment. For the individual with a learning disability, the subjective experience of empowerment is about accessing those rights, choice and control, which can then lead to a more autonomous lifestyle.
A person's rights can range from everyday human rights to civil and legal rights. Legal and civil rights help to eradicate discrimination in our society.
There are also other rights which we might consider as being important. We could refer to these as moral rights. Generally these rights may not have the same amount of legal force behind them as the previously mentioned ones. They perhaps depend more on the goodwill and nature of people to recognise and support them, i.e. the right to be treated with dignity and respect, the right to complain. See sections on
- Rights
- Empowerment.
Respect and Dignity
There is a level of respect which accords for all of us. Everyone deserves to be treated with the appropriate amount of personal consideration and worth. Certain other roles in our society - for example people with civil appointments such as mayor, minister etc. - may attract other formalised customs that are necessary to the role and which appear to enhance the respect and dignity of their position.
Failing to give an appropriate level of respect undermines the concept of a person's human worth, the way people talk to or about each other and their use of language can show how much respect they afford each other. Individuals with a learning disability have been particularly stigmatised in the past by being described by dehumanising language and provided with primitive conditions in which to live.
If we do not afford a person the opportunity of choice when appropriate or if we fail to recognise their rights, we have failed to respect them as individuals.
Disability awareness is not about political correctness; it is in part about respect and dignity for the individual, being treated as a person first and recognising disability second. See section on
Individuality
Seeing a person as an individual is an important aspect of affording them respect and dignity. By seeing the person first and recognising their uniqueness of personality, character, abilities and skills, you begin to see them individually.
People with disability, particularly learning disability, have historically been at risk of being 'congregated together'. This putting people together in a group has not only occurred in physical terms by people being placed in large institutions. It has also helped in establishing a stereotype i.e. 'the mentally handicapped'. When people are labelled in this or similar ways, they lose their individuality and, ultimately their personal respect and dignity.
Privacy
Privacy is linked on occasions with individuality. It is also, of course, linked with respect and dignity.
There can be many aspects of everyday life for a person with disability where they may need personal and intimate care and support. It is important that such tasks are undertaken with sensitivity, dignity and recognition of the need for privacy. Learning disability history shows that where people were seen as part of a disparate group, they could lose their individuality by being housed together, with consequent impact on personal privacy.
Privacy does not only relate to physically intimate procedures, it can also relate to all sorts of personal information surrounding an individual's life and activities (see Confidentiality section below and also dedicated topic).
The opportunity to have your privacy respected in the appropriate manner enhances self-esteem; unfortunately when privacy is encroached in any way it can increase a sense of vulnerability and drain personal confidence. See section on
Confidentiality
A recognition of the sensitivity of some personal information is linked closely with acknowledging individual privacy. Every person has the natural right to privacy and thereby confidentiality. Confidentiality is also recognised in the Human Rights Act (Article 8).
Privacy and confidentiality require that facts or information which have been shared by someone with another party remain private and are not disclosed without the permission of the person who gave them.
Confidentiality is made up of trust, privacy, responsibility (both moral and/or professional) to maintain the confidence and an understanding that there are potential consequences - for both the confidante and the giver - surrounding inappropriate disclosure.
Emotional needs (and empathy)
Everyone has the right to develop emotionally and to have the opportunity to express their feelings and establish relationships. We are social beings, with 'feelings' being a natural part of social and personality make up. Feelings may not always show in appropriate or understandable ways, but they are there. We need to feel we 'belong' and are important to someone.
Social development is about relationships with a variety of people. It is about co-operation, about being able to give and take. It is also about conflict and about participating in an ordinary life in the community.
Recognising the feelings or the emotional needs of another person requires a greater insight than just being aware of their basic physical needs. The best social care workers are those who can empathise naturally with the feelings of those receiving services and recognise the emotional dimension to whatever is taking place. Too often, people's practical and physical care needs are addressed but the emotional dimension is not given the same consideration. The following are a couple of examples of areas where the emotional needs of indivduals with a learning disability have not always been fully recognised.
1 - Failure to understand that people need to be included in funeral rites and be allowed to grieve after a death; that a period of bereavement is an important emotional and psychological process for the learning disabled as it is for other people.
2 - Being thought of as asexual and not acknowledged as having the same feelings and wishes to experience loving and intimate relationships. Even meaningful friendships and long-term relationships could be easily dismissed as unimportant by services and carers alike. In some cases, relationships have been actively discouraged or covertly controlled.
Independence
People have the right to maximise their full potential through physical, intellectual and emotional development.
The best opportunity to do this is now considered to be through living a full and active life included as part of your local community. The government states that the way to achieve this inclusion is for learning disabled people to be included in an ordinary life. This includes education, leisure and recreation, day time opportunities and, where possible, work. There should be a greater access to using mainstream services and less reliance on specialist ones. Social inclusion and promoting independence are the major themes of the government white paper, 'Valuing People (2001)', which sets out the strategy for future care and support for people with a learning disability at the start of the new millennium.
One of the major ways of learning and maximising independence is being allowed to take acceptable risks. It is nearly impossible for people to develop new skills and knowledge without taking risks, making mistakes and trying again. Allowing people to do this does not mean removing all precautions for their safety and well being. It does mean recognising when we may be overprotecting people.
Overprotecting restricts a person's opportunities and development with consequent impact on their level of independence. Overprotection encourages dependence. It is important that people are encouraged by positive expectations to counteract the negative expectations and stereotypes which have been around for so long.
Independence does not necessarily mean doing everything for yourself; it can include the necessary support to complete an important task you cannot do for yourself. Independence is just as much about a lifestyle the person has 'independently' chosen, their wishes, wants and aspiration. A person may not be very competent with writing and numbers but it should not stop them accessing a Direct Payment with support and purchasing their own care.
Independence is about overall expectation and about lives lived to the full. See sections on
- Valuing People Now
- Direct Payments
- Inclusion
Valuing People
The 'Valuing People' White Paper was published in 2001 and outlined proposals for the future care of people who have a learning disability. The Scottish Executive equivalent has the title, 'The Same As You'. In both documents, there are major references to important values and principles such as:
- Rights
- Choice
- Independence
- Inclusion
Much is being written about the change to current services as initiated by the implementation of 'Valuing People', but of course it is what happens to benefit the individual which will be the vital outcome. Learning disability history is littered with new initiatives and different philosophy, but it is what changes for the better that is the real measure. It is something of an indictment on our history that for the new millennium our radical national service priorities are to 'value people', and that people with learning disability want to be "the same as you".
Person Centred Planning (PCP) is seen by both practitioners and national policy makers as the vehicle for this. How much this philosophy will have an opportunity to succeed will depend on many things, including its strategic implementation, service priorities and available funds. True PCP puts the individual with a learning disability at the centre of the process, recognising their rights, individuality, personal autonomy and wish to participate in an ordinary life of their choosing. The Quality Network - which looks at reviewing services for individuals with a learning disability - examines the 'outcomes for the person' and what their lifestyle is really like across the following areas:
- Everyday choices
- Making important decisions about their own life
- Taking part in everyday activities
- Being treated with respect
- Having friends and relationships
- Feeling a part of their local community
- Work opportunities
- Absence of abuse
- Staying healthy
- Listening to their family's views
In recognising that these are the areas which are important to individuals in order to live a more inclusive lifestyle, then an individual's Person Centred Plan will require the above as bedrock, on which to base personal aspiration and future plans. Appreciating such considerations offers the social care worker a basis for thinking about what areas should be facilitated by good practice. See sections on
- Valuing People Now
- Person Centered Planning (PCP)
