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Understand the Context of Supporting Individuals with Learning Disabilities

Overview

This unit examines what a learning disability is and some of the challenges that individuals with learning disabilities and their support team face.

Topics include the history of individuals with learning disabilities in society, legislation, advocacy, social inclusion, active participation and communication.

Contents

  1. Understand the legislation and policies that support the human rights and inclusion of individuals with learning disabilities
    1. Identify legislation and policies that are designed to promote the human rights, inclusion, equal life chances and citizenship of individuals with learning disabilities
    2. Explain how this legislation and policies influence the day to day experiences of individuals with learning disabilities and their families
  2. Understand the nature and characteristics of learning disability
    1. Explain what is meant by ‘learning disability’
    2. Give examples of causes of learning disabilities
    3. Describe the medical and social models of disability
    4. State the approximate proportion of individuals with a learning disability for whom the cause is ‘not known’
    5. Describe the possible impact on a family of having a member with a learning disability
  3. Understand the historical context of learning disability
    1. Explain the types of services that have been provided for individuals with learning disabilities over time
    2. Describe how past ways of working may affect present services
    3. Identify some of the key changes in the following areas of the lives of individuals who have learning disabilities: a) where people live b) daytime activities c) employment d) sexual relationships and parenthood e) the provision of healthcare
  4. Understand the basic principles and practice of advocacy, empowerment and active participation in relation to supporting individuals with learning disabilities and their families
    1. Explain the meaning of the term ‘social inclusion’
    2. Explain the meaning of the term ‘advocacy’
    3. Describe different types of advocacy
    4. Describe ways to build empowerment and active participation into everyday support with individuals with learning disabilities
  5. Understand how views and attitudes impact on the lives of individuals with learning disabilities and their family carers
    1. Explain how attitudes are changing in relation to individuals with learning disabilities
    2. Give examples of positive and negative aspects of being labelled as having a learning disability
    3. Describe steps that can be taken to promote positive attitudes towards individuals with learning disabilities and their family carers
    4. Explain the roles of external agencies and others in changing attitudes, policy and practice
  6. Know how to promote communication with individuals with learning disabilities
    1. Identify ways of adapting each of the following when communicating with individuals who have learning disabilities a) verbal communication b) non-verbal communication
    2. Explain why it is important to use language that is both ‘age appropriate’ and ‘ability appropriate’ when communicating with individuals with learning disabilities
    3. Describe ways of checking whether an individual has understood a communication and how to address any misunderstandings.

Study Guide

1.1 Identify legislation and policies that are designed to promote the human rights, inclusion, equal life chances and citizenship of individuals with learning disabilities

As workers in the health and social care industry, we are governed by several rules and guidelines. It is very important that we are aware of what these are and we adhere to them as they are designed to protect ourselves, our organisation and the individuals that we support.

Legislation is the collection of laws that have been made official by parliament and must be followed. Failure to do so could result in legal action or litigation being taken against yourself and/or your organisation.

Policies are rules and guidelines that have been created by your organisation or industry bodies to ensure that workers behave and do their jobs in their correct way. If you do not comply with policies, you may leave yourself open to disciplinary action or even litigation (as many policies are written to ensure that workers comply with the law).

There are a number of pieces of legislation and policies that have been designed for people with learning disabilities to promote:

  • Human Rights – basic rights that every individual can expect
  • Inclusion – ensuring that all individuals have the opportunity to be and feel part of a group or activity
  • Equal Life Chances – ensuring that all individuals have the same life opportunities
  • Citizenship – the status of being a citizen of a particular country

Firstly, the Equality Act 2010 protects individuals from discrimination, harassment and victimisation in society and supersedes previous anti-discrimination such as the Disability Discrimination Act 1995 and Race Relations Act 1976. It makes it unlawful for an individual with disabilities to be discriminated against. There are also other ‘protected’ characteristics including gender and age.

The Human Rights Act 1998 sets out the fundamental rights and liberties that all residents of the UK are entitled to. This includes (amongst others) the right to life, the right to a fair trial and the freedom from slavery and forced labour.

The Care Act 2014 puts the responsibility on local authorities to promote the wellbeing of individual’s that require care. This includes social and economic wellbeing, participation in work, education, training and recreation and the individual’s contribution to society.

These are the primary laws that directly relate to the freedoms and rights of individuals, however there is additional legislation that indirectly affects this including:

Policies that promote human rights, inclusion, equal life chances and citizenship of individuals with learning disabilities:

  • Mental Capacity Act Code of Practice – Guidance for carers that must make decisions for the individuals that they care for
  • CQC Fundamental Standards – A list of minimum standards that all individuals can expect from their care
  • CQC Regulations – Rules service providers in the health and social care industry must abide (closely related to Fundamental Standards)
  • Organisational Policies – Policies unique to the organisation that you work for (this will vary between organisations)
  • Code of Conduct for Healthcare Support Workers and Adult Social Care Workers in England – Minimum standards that all health and social care workers in England should meet

1.2 Explain how this legislation and policies influence the day to day experiences of individuals with learning disabilities and their families

When compared to the time before the legislation and policies listed above were introduced, we can surmise that the daily experiences of individuals with learning disabilities and their families have been positively and significantly influenced.

The Equality Act 2010 has made it unlawful for people with disabilities to be harassed or discriminated against because of their disabilities. This has made societal prejudice unacceptable in the eyes of the law and an individual with a learning disability must be given the same opportunities as everybody else in all aspects of life including work and recreation. Neglecting to do so can lead to criminal prosecution, as can subjecting an individual to abuse, which will be treated as a hate crime.

In the eyes of the law, all individuals have the same fundamental rights and freedoms as set out by the Human Rights Act 1998. This includes the right to life, which means everyone has the right to lifesaving and life-prolonging medication even if they have severe or profound learning disabilities. Similarly, there is the right to not be tortured in an inhuman or degrading way, which means people with learning disabilities should not be forced to live in poor conditions or suffer from neglect. And the right to marry and start a family means that people with learning disabilities are no longer regarded as not having the capacity to have intimate relationships and have children. This act has helped to ensure that people with learning disabilities have the same life opportunities as everybody else.

The Care Act 2014 made it the duty of local authorities to ensure the wellbeing of individuals with learning disabilities. If somebody appears to require care, the local authority must carry out an assessment focusing on their individual needs, outcomes and wellbeing and involve the person in the process (person-centred planning). This means that individuals with learning disabilities and their families have a lot more control over the care and support that they receive.

The Mental Health Act 2007 and Mental Capacity Act Code of Practice helps to ensure that choices are not taken away from individuals with learning disabilities by the people that support them. It means that support staff must assume that individuals have the capacity to make all their decisions unless it can be proven to the contrary. They are free to take risks and make their own life choices. This has helped to remove the common presumption that people with learning disabilities are unable to make decisions for themselves, thereby giving them more freedom and control in their life.

Care Quality Commission (CQC) Regulations and Fundamental Standards set out the standards of care that all care providers must not fall below. This includes standards of consent (care must be agreed to), person-centred care (care and support must be tailored to the individual) and dignity & respect (entitlement to privacy and help and support to remain independent). This is significant for individuals with learning disabilities and their families as it means they can expect to be treated as an individual and have their rights respected.

2.1 Explain what is meant by ‘learning disability’

The NHS defines a learning disability as:

A learning disability affects the way a person understands information and how they communicate. This means they can have difficulty understanding new or complex information, learning new skills and/or coping independently.

National Health Service (NHS) UK

Learning disabilities affect intellect and should not be confused with learning difficulties (such as dyslexia), which do not affect intellect.

A learning disability is a broad term that encompasses many different conditions such as Down’s Syndrome and Fragile X Syndrome and can be classed as mild, moderate or severe.

2.2 Give examples of causes of learning disabilities

A learning disability occurs when the brain is still developing, either before birth (prenatally), during birth or during early childhood. Typical causes are:

  • Genetic/inherited conditions passed down from previous generations of the same family
  • Chromosomal abnormalities
  • The mother becoming ill or drinking excessive alcohol during pregnancy
  • Premature birth
  • Birth complications such as the child having an oxygen deficiency in the brain or head trauma during birth
  • Contact with damaging materials such as radiation
  • Illness or injury during early childhood
  • Neglect or abuse during early childhood

2.3 Describe the medical and social models of disability

The medical and social models of disability are contrasting ideas about the reasons for barriers to independence encountered by people with disabilities.

The medical model of disability views an individual’s disability as the cause of their impairment or lack of independence.

Conversely, the social model of disability views the organisation of society as the cause.

For example, imagine a person with a learning disability is unable to read but is a member of a book club that regularly meets to discuss the books that they have read – the individual is able to participate because they listen to audio books.

At a particular meeting it is decided by the group that the next book that they will all read is a new release. However, it is only currently available in print format, with the audio book not being released for another four weeks, resulting in the individual being unable to participate.

The medical model of disability would say that the barrier to participation is the individual’s learning disability. This indirectly blames the individual.

However the social model of disability would say that the barrier is society. The audio book should have been released at the same time as the print book so that it can be enjoined by both people that can and can’t read at the same time. Or the group should have chosen different book so as not to exclude the individual.

The social model was designed by people with disabilities to reduce the stigma associated with disability and attempt to change people’s attitudes towards disability by viewing barriers as being caused by society rather than the individuals that have extra difficulty overcoming them.

2.4 State the approximate proportion of individuals with a learning disability for whom the cause is ‘not known’

A lack of relevant reliable studies and research makes it difficult to approximate the proportion of individuals with a learning disability with an unknown cause, however the 2011 edition of Psychiatry by Lesley Stevens and Ian Rodin states:

The cause of mild learning disability is unknown in about half of cases. Many of these simply represent the lower end of the normal distribution of intelligence. With increasing severity of learning disability, the likelihood of finding a cause increases, with at least 80% of severe cases having some evidence of organic brain damage or disease.

Lesley Stevens MB BS FRCPsych, Ian Rodin BM MRCPsych, in Psychiatry (Second Edition), 2011

And the British Institute of Learning Disabilities do not give an exact proportion but do say:

… for many who are diagnosed with having a general learning disability, the cause remains unknown.

BILD Factsheet: Learning Disabilities 2011 Ken Holland

Not exactly helpful!

The 50% proportion of learning disabilities with unknown cause has been floating around the Internet for a long time and is often accepted as an answer for the Level 2 Diploma but we have been unable to find the original source for this figure – do let us know if you can direct us to it.

2.5 Describe the possible impact on a family of having a member with a learning disability

Having a family member with a learning disability can have a significant impact on those around them, both positively and negatively.

Individuals with learning disabilities often require far more support than those that don’t and may never be fully independent. This can create a lot of stress in the family unit.

Parents may feel guilt about their child’s condition and the extra care they have to provide can leave them feeling overwhelmed and exhausted.

Siblings may feel pushed out and jealous that their brother/sister appears to receive more attention than they do and not understand the reasons why.

There is also the increased worry that the family may feel due to the individual possibly being vulnerable and easily-led – this can also lead to the individual being over-protected.

And there may be an associated financial burden to ensure that the individual receives the care that they need.

On the plus side, an individual with a learning disability gives the family an opportunity to broaden their horizons and learn new skills that they wouldn’t have ordinarily had the chance to. It also opens opportunities to make and share experiences with others in the local community that face similar challenges.

3.1 Explain the types of services that have been provided for individuals with learning disabilities over time

Sadly, in the 19th and first half of the 20th centuries many people with learning disabilities were grouped together in institutions or colonies where their basic needs were met but they had very little opportunity to develop or contribute to society.

Furthermore, there was no distinction made between people with learning disabilities, people with mental health conditions and criminals, all being viewed as a drain on society and forced to live together. Even mothers with illegitimate children (and children born within the institution’s walls) had no choice but to spend their lives institutionalised.

The alternative was being cared for at home by family but there was virtually no support provision for families that chose to do this.

In 1948, the NHS took control of institutions and they became hospitals, however the poor treatment of patients continued.

During the 1950’s, research suggested that individuals with learning disabilities had more ability than had previously been thought and would be able to live successfully and independently in the community.

The conditions of residential hospitals were also criticised with reports of isolated locations with visits being discouraged, poorly trained staff, lack of co-ordination and patients having little to no belongings.

This began the integration of individuals with learning disabilities into local communities and the start of day centres, hostels and community residential care.

The 1960s and 1970s saw many factors that would eventually lead to a review of services for people with learning disabilities, including:

  • L’Arche communities where people with and without learning disabilities could live together
  • Campaigns on behalf of people with learning disabilities to improve conditions and services, most notably by Lord Rix
  • Publication of the white paper Better Services for the Mentally Handicapped
  • The Jay Report (1979) called for Normalisation, which meant that people with learning disabilities have a right to life and should be part of the community

In the 1980s, more individuals with learning disabilities were relocated to local communities and the hospitals began to close, culminating in the National Health Service and Community Care Act 1990, which put the onus on local authorities to support them to stay in the community.

In the 21st century, services for individuals with learning disabilities have improved greatly, particularly following the 2001 white paper ‘Valuing People‘ (later updated in 2009 ‘Valuing People Now‘), which started a person-centred approach to learning disability services.

The Care Act 2014 gave local authorities the responsibility to promote all aspects of an individual with learning disabilities wellbeing and provide services in this respect.

3.2 Describe how past ways of working may affect present services

Past ways of working with individuals with learning disabilities went from the institution/asylum method throughout the first half of the 20th century where individuals were segregated from ‘normal’ society and even treated like criminals to integration with local communities with a focus on care but with limited rights and finally to the person centred approach of 21st century where services are tailored to the individual’s needs.

Consequently, because the changes are relatively recent (within some peoples lifetimes) some people’s attitudes towards individuals with learning disabilities may be outdated.

This can even include some workers in the health and social care industry – for instance, a nurse who left work to start a family in the 1990s, then returned in 2019 would have antiquated views of how to care for people with learning disabilities.

Fortunately, this can easily be rectified with current and proper training and education.

Services today can also learn from the mistakes of the past. In fact, one of the benefits of the evolution of services is that we now understand that we should never rest on our laurels and should strive for continuous improvement backed by research. Failure to do so can leave services antiquated and put the most vulnerable people in our society at risk.

3.3 Identify some of the key changes in the following areas of the lives of individuals who have learning disabilities: a) where people live b) daytime activities c) employment d) sexual relationships and parenthood e) the provision of healthcare

The lives of individuals with learning disabilities has steadily improved over time in several areas.

a) Where people live

In the 19th and early 20th centuries, individuals with learning disabilities either lived with family or were forced to live in institutions and asylums, segregated from mainstream communities.

In 1948, the NHS was formed and took over the asylums and they changed to hospitals, although they did not reform a great deal.

1959 saw the introduction of the Mental Health Act, which made living in a ‘hospital’ voluntary unless individuals were classed a danger to others and that community care should be espoused. Despite this, populations of hospitals continued to rise as many individuals were not aware of their choice or had been institutionalised and did not want to move.

In the 60s and 70s, more individuals with learning disabilities began to transition from life in institutions to local communities. Amongst many other studies of the time, the Jay Report suggested they should integrate into local communities based on the idea of normalisation.

This eventually resulted in a massive shift during the 1980s of people moving out of institutions and into mainstream society. However, accommodation was primarily in the form of hostels and care homes/sub-communities.

The National Health Service and Community Care Act 1990 gave individuals with learning disabilities more control over where they lived by introducing Direct Payments.

In the 21st Century, more and more people moved into supported living environments where they either owned or privately rented their homes and had support workers come in to provide their care. This trend increased further after the introduction of the Care Act 2014.

b) Daytime Activities

Life in early institutions was often harsh and very difficult. It was built around routine and amongst the daily chores and medical care, residents were given very little stimulation or activities. In addition, they were seldom allowed to leave the grounds.

In the latter half of the 20th century, as more people left institutions and integrated with local communities, more activities were provided for people with learning disabilities by local authorities and charities such as MENCAP. However, many of these services were not tailored to individual needs and kept individuals with learning disabilities segregated from the wider community.

The Education (Handicapped Children) Act 1970 and Education Act 1981 made education a universal right and that all children should be taught in mainstream schools wherever possible.

In the 21st century, there are a wider variety of services catered towards individuals with learning disabilities as well as further integration with mainstream activities. The Equality Act 2010 (and Disability Discrimination Act 1995 before it) made it unlawful for activity providers to discriminate against people with learning disabilities.

c) Employment

The early asylums had very few opportunities for individuals with learning disabilities to obtain gainful employment. In fact, the primary reason for people being moved to institutions was because they were thought to be unable to contribute to society in a meaningful way.

It was only when people began to move out of institutions and into communities that the chance to learn vocational skills and find employment became possible.

The first Camphill Community was formed in 1940, which took in children with disabilities and provided education to them including skills like basket weaving and baking.

Then, in 1944, the Disabled Persons (Employment) Act stated that employers with 20 or more staff must have 3% of them as registered disabled. Sadly, it was rarely enforced and the disabled register was inaccurate.

In 1995, the Disability Discrimination Act (later superseded by the Equality Act 2010) made it illegal for employers to discriminate against people with disabilities.

d) Sexual relationships and parenthood

Early institutional life often meant that men and women with learning disabilities were segregated and did not have the opportunity to form intimate relationships with one another. If a woman were to get pregnant, they would not have been allowed to keep the child.

Some countries such as Sweden practiced compulsory sterilisation. In the 1930s there was a campaign for voluntary sterilisation for people with learning disabilities, which was also a recommendation of the the Brock Report.

In addition, the attitudes of people of the time judged individuals with learning disabilities to be asexual. The Eugenics Movement discouraged individuals with learning disabilities from reproducing in order to prevent ‘defective genes’ being passed on.

The latter half of the 20th century saw more people moving from institutions to local communities and some individuals did have sexual relationships and have children, however the view of the general public was still one of concern. Popular opinions were that people with learning disabilities did not have the desire to engage in sexual relationships or were perverse or were innocent and vulnerable and could not consent. This was also the view of the majority of families of individuals with learning disabilities and the professionals that supported them.

It wasn’t until the Human Rights Act 1998 that individuals with learning disability had legislation to turn to, particularly article 8 which grants everyone the right to respect for private and family life – this is a broad term which includes the right to your sexuality, your body and forming and maintaining relationships.

This was followed by the Mental Capacity Act 2005, which supported individuals with learning disabilities to engages in consensual sexual intercourse.

e) The Provision of Healthcare

Healthcare for people with learning disabilities was provided by the doctors and nurses of the institutions that they were forced to live in during the 19th and early to mid 20th centuries. Individuals did not have any choice about the healthcare they received.

In 1948, the NHS took responsibility for the institutions and they were changed to ‘hospitals’ however the practices and services remained pretty much the same although Mental Health Officers were appointed to work with individuals outside of hospitals. It was still common practice to force patients to take medication.

In the 50s and 60s, more people were moving out of institutions before the Local Authority Social Services Act 1970 put the responsibility on Local Authorities and newly formed Social Services Departments for the health and welfare of people.

In 1990 the National Health Service and Community Care Act revamped healthcare and made it more person-centred by concentrating on what the individual needs rather than what is available.

By now, individuals with learning disabilities were being listened to more and given more respect and choice with their healthcare options. The Human Rights Act 1998 and Equality Act 2010 reinforced this.

4.1 Explain the meaning of the term ‘social inclusion’

Social inclusion is defined by the Charity Commission as:

Social inclusion is often used to describe the opposite effect to social exclusion. It usually results from positive action taken to change the circumstances and habits that lead, or have led, to social exclusion. It is about enabling people or communities to fully participate in society.

Charity Commission publication ‘The Promotion of Social Inclusion’ 2011

Essentially, social inclusion means giving everyone the same opportunities to participate in society paying special attention to those that may be disadvantaged from doing so. This includes individuals that are disadvantaged by disability.

Examples of social inclusion for people with learning disabilities could include lack of finances, lack of suitable transport, lack of proper support or institutionalisation.

As a health and social care worker, it is our responsibility to remove as many of these barriers as possible and encourage active participation and social inclusion.

4.2 Explain the meaning of the term ‘advocacy’

The NHS provides a good definition of advocacy:

If you find it difficult to understand your care and support or find it hard speak up, there are people who can act as a spokesperson for you. They make sure you’re heard and are called advocates.

NHS Social Care & Support Guide

For individuals with learning disabilities, it can sometimes be difficult to make their voice heard and their wishes considered.

Advocacy (provided by advocates) is an independent service that ensures that an individual has their say on issues that are important to them, input into their care provision and their rights defended.

It is essential that an advocate is wholly independent so that they can act in the best interests of the individual and do not have their own agenda or a conflict of interests. Consequently, support staff, social workers, medical professionals and sometimes even family members make poor advocates.

4.3 Describe different types of advocacy

There are several different types of advocacy available for people with learning disabilities. An individual may use one or more of them at different times in their lives depending on their personal needs and circumstances. The individual should remain at the heart of the advocacy service and the advocate should always act in their best interests.

Self Advocacy

This is where an individual is able to represent themselves by assessing and making their own decisions and ensuring their voice is heard. This is the desired outcome for most people and training can be provided to help individuals with learning disabilities gain the skills they need to self-advocate. However, this is not always possible and advocacy services still have an important role to play.

Statutory Advocacy/Non-Statutory Advocacy

Statutory advocacy pertains to individuals that have the legal right to an advocate and one will often be appointed to represent them. This can include people that have been detained under the mental health act or do not have the mental capacity to make decisions. A Paid Relevant Person’s Representative (PRPR) is an example of a statutory advocate. These are appointed by the local authority when individual is unable to make their own decisions and they have no family or friends that can support them.

Non-statutory advocacy refers to individuals that require an advocate but fall outside of the eligibility criteria required to be appointed one by law. This service is usually paid for by the individual.

Instructed/Non-Instructed Advocacy

Instructed advocacy is when an individual tells their advocate what they would like them to say and do. This may be because the individual is unable to express their views or feels that their voice is not being heard. The advocate will express the individual’s desires clearly and succinctly, ensure that they are listened to and help to ensure that they are actioned.

Non-instructed advocacy is when the individual is unable to express their desires to the advocate. The advocate will be trained to use different techniques to try and find out what the individual wants and, if unable to do so, will make decisions on behalf of the individual that are in their best interests.

Family and Friend Advocacy

This is when a family member or close friend helps an individual to make a decision or makes a decision on their behalf. This type of advocacy can be limited in use as a friend of family member may have a conflict of interest.

Professional Advocacy

Sometimes a professional such as a healthcare or social worker may need to act as an advocate for an individual. Whilst it can be useful at times, there could be conflicts of interest so self advocacy or independent advocacy are always preferred.

Legal Advocacy

This is professional advocacy law services represented by legally qualified solicitors/lawyers/barristers.

Peer Advocacy

This is where an individual with similar disabilities or experiences advocates for a person. It may be that they have been through a similar situation and have a wider understanding of it, especially about how it affects the particular individual personally, and so are able to offer guidance and support.

Group Advocacy

Group advocacy is when several people with similar issues unite to represent one another and work towards a common goal and speak out collectively.

4.4 Describe ways to build empowerment and active participation into everyday support with individuals with learning disabilities

When supporting individuals with learning disabilities, it is important to build empowerment and active participation into your day-to-day practice.

Empowerment means helping an individual to become more independent and have more control over their lives, especially the support they receive.

Active participation means supporting the individual to be engaged in their day to day life and their support rather than a passive receiver.

Empowerment and active participation can be achieved by getting to know the people that you work with and understanding their likes, dislikes, hopes, dreams, needs and capabilities.

You should encourage individuals to complete the tasks that they are able to do as independently as possible and provide some support for those they cannot. Over time, you should introduce new skills so that they can become even more independent.

You should converse with the individual regularly to see if their wishes have changed or that they have something new that they want to try and then work with them to achieve it in a realistic manner.

And encourage the individual to take an interest and contribute towards their support. You can do this by asking questions or asking them to collaborate on their care plan when it is due for review. Ensure that you actively listen and take all of their points on board.

Another example is when planning meals for an individual. Instead of just making a list of the meals that they like, you should sit down with them and jointly fill in a menu planner. For individuals that have difficulty communicating verbally, you could use communication aids such as flashcards with pictures of meals on them. The most important thing is to ensure that the individual feels involved in the process.

So, by promoting empowerment and active participation as part of your work, you can support individuals with learning disabilities to maximise their opportunities and achieve their true potential.

5.1 Explain how attitudes are changing in relation to individuals with learning disabilities

Up until as recently as the 1970s, large numbers of individuals with learning disabilities were confined to institutions. The attitude of the time was to keep these individuals segregated from the general population and those that did live in local communities were often treated with pity or disdain and suffered harassment and abuse.

As institutions closed and more individuals with learning disabilities merged with ‘mainstream’ communities, many services and groups catered specifically for these people. However, despite the good work, this had the negative side effect of maintaining segregation within society and creating mini-communities consisting of only individuals with learning disabilities and their care staff.

Many people with learning disabilities still suffered from a mixture of bullying and harassment on one extreme to over-protection, pity and restricted (if any) decision-making on the other.

More recently, legislation has enshrined the rights of individuals with learning disabilities. The Human Rights Act, Equality Act and Care Act have helped people to understand that disability does not mean an individual has any less rights than anybody else and that it is unlawful to discriminate on this basis.

The 21st century has seen a shift in attitudes towards people with learning disabilities as these individuals are now much better integrated into society. This is especially true in education where children with learning disabilities are much more likely to attend mainstream schools.

Nowadays, people are much more person-centred and understand that individuals are the experts in their own care. This has led to much more collaboration, choice and independence for individuals.

Unfortunately, prejudice and outdated attitudes towards people with learning disabilities does still exist but thankfully it is becoming more of a minority.

5.2 Give examples of positive and negative aspects of being labelled as having a learning disability

Being labelled as having a learning disability can have both positive and negative connotations.

On the positive side:

  • it is made clear that the individual may require additional support, understanding or accommodations
  • it can promote social inclusion as some people are genuinely interested about how people are different from one another
  • it is required to fulfill some eligibility criteria such as benefit claims
  • it is efficient in communication when talking about groups of similar individuals – for example it is far easier to use the term ‘learning disability’ than to refer to a list of conditions, symptoms or cognitive abilities
  • it helps individuals with similar issues and challenges come together and form a group identity
  • it helps organisations to do things that could benefit individuals with learning disabilities such as lawmakers or research groups

The negative aspects of using the label ‘learning disability’ are:

  • it does not promote the identity and strengths of each individual as labels are, inherently, broad and wide-ranging
  • it can cause individuals to be singled-out, ridiculed, harassed and bullied
  • it can cause individuals with learning disabilities thinking less of themselves and result in a lowered self-worth, self-esteem and self-confidence
  • it can restrict expectations and put limits on an individual that may not have otherwise existed

5.3 Describe steps that can be taken to promote positive attitudes towards individuals with learning disabilities and their family carers

Positive attitudes towards individuals can be promoted using a variety of strategies.

First an foremost, health professionals should display a modern and positive attitude towards people with learning disabilities in their day-to-day practice. Leading by example shows others the correct attitude to have and helps them to emulate good practice.

Legislation has also impacted the promotion of positive attitudes towards people with learning disabilities by establishing the lawful baseline of what is expected from society. The Human Rights Act set out the basic rights that everybody can expect, the Equality Act made it illegal to discriminate against minority groups and the Care Act gave individuals more choice in their care packages leading to increased independence.

Integration of people with learning disabilities into the wider community can help create more understanding between individuals and quash popular misconceptions. Increased exposure and communication between different groups of people can create more tolerance, empathy and understanding.

Finally, education has a large part to play in promoting positive attitudes as it pushes people to think about and try to understand things from another’s point of view. Many children with learning disabilities now attend mainstream schools, which will result in future generations having a better understanding of the differences between individuals.

5.4 Explain the roles of external agencies and others in changing attitudes, policy and practice

At the top of the hierarchy of external agencies that have a role in changing attitudes, policy and practice is the government. It is their responsibility to set the laws that are the foundation of society. The Human Rights Act,Equality Act and Care Act have helped to bring about change in the health and social care sector.

The Care Act put the onus on local authorities to assess anyone who seems like they may require care an support in a person-centred way. Local authorities must also provide services to meet the needs of individuals with learning disabilities or identify referrals to third-party services.

The Care Quality Commission (CQC) is the regulator for all health and social care services in England and ensure that policy and practice are performed correctly. They have the right to close down services that are not up to scratch.

Skills for Care and Skills for Health are charities that promote best practice and workforce and workforce development in health and social care.

Other charities such as Mencap and Scope have done a lot of lobbying on behalf of individuals with learning disabilities to help change attitudes and policy. The Social Care Institute for Excellence also contributes by co-producing, sharing and supporting best knowledge and evidence of working practice.

The media with its wide-reaching audience also has a part to play in promoting positive attitudes towards people with learning disabilities.

6.1 Identify ways of adapting each of the following when communicating with individuals who have learning disabilities a) verbal communication b) non-verbal communication

Working with individuals with learning disabilities often means adapting our communication techniques in a way that meets their particular needs to ensure that we are understood.

Verbal Communication Adaptations

During verbal communication with individuals with learning disabilities there are several things you may need to consider:

  • Environment – as much as possible, ensure that you are communicating in a comfortable setting. Pay attention to temperature, lighting seating etc.
  • Sentence structure – try to keep your sentences short using 1-3 keywords
  • Speed – speak slowly and clearly
  • Tone of voice – keep your tone of voice in line with what you are saying, try to sound relaxed and not upset, angry or patronising
  • Body language – keep body language in line with what you are saying
  • Facial expressions – keep facial expressions in line with what you are saying
  • Eye contact – some individuals prefer eye contact whilst it makes others feel uncomfortable
  • Direction – speak directly to the individual and not to their family or support staff
  • Ask open questions – questions that have a yes/no answer can often result in an automatic response. Asking open-ended questions ensures the individual is listening and understands you
  • Be patient – give the individual plenty of time to absorb what you are saying and time to respond
  • Listen – communication is a two-way process so ensure that you actively listen to what the individual says to you

Non-verbal Communication Adaptations

Not all communication is verbal and some individuals with learning disabilities can only communicate via non-verbal means. This does not mean that they are unable to communicate but that they communicate in a different way. We should be aware of non-verbal methods that people use to communicate and adapt ourselves accordingly. Some things to consider are:

  • Facial expressions – observing an individual’s face can give visual cues about how they are feeling and if they are understanding you
  • Gestures – some individuals will use gestures to communicate. Examples include pointing, waving and giving the ‘thumbs-up’
  • Makaton – some individuals use Makaton sign language to communicate which is a set of universally-understood gestures
  • Leading – an individual may try to make themselves understood by leading you somewhere to show you something. Be open to following them to see what they want to show you
  • Visual aids – pictures on cue cards can be used to communicate
  • Drawing/writing – some individuals prefer to communicate using drawings or writing
  • Don’t give up – sometimes it can be difficult to understand but be patient and tenacious in your communication

6.2 Explain why it is important to use language that is both ‘age appropriate’ and ‘ability appropriate’ when communicating with individuals with learning disabilities

To communicate effectively with individuals with learning disabilities, you should ensure that the language that you use is both age and ability appropriate.

Age-appropriate language means using words that are suitable for a particular age group. If you are communicating with an adult with learning disabilities, you should speak to them as an adult. It is not appropriate to talk to them as you would a child as this can come across as rude and patronising.

Similarly, be mindful that adults with learning disabilities have the same hopes, dreams and desires as anyone else, so do not need to ‘protected’ from discussing things other members of their age group may talk about. For example, a young adult may (in an appropriate setting) want to discuss sex or sexuality. This is normal and should not be avoided.

Ability-appropriate language means adapting your words and sentences in accordance with an individual’s communication skills. This may mean that it is necessary to slow down you speech or give the individual more time to process the information you have given them. It could also mean keeping sentences short and to the point using a limited number of keywords.

Essentially, you should show respect to the individuals that you communicate with by being open and honest, speaking to them as an adult and conveying your message in a way that they can process and understand.

6.3 Describe ways of checking whether an individual has understood a communication and how to address any misunderstandings.

An important part of effective communication is ensuring that an individual has understood what you have said to them.

Sometimes you may even find that individuals appear to listen intently and nod whilst you are talking but have no clue what you are talking about (I am guilty of this myself, very regularly!).

However, you should still observe the individual that you are communicating for facial expressions, body language etc. that may indicate that they are either not listening or not understanding.

After giving an individual some information, it is a good idea to ask them if they have understood what you are saying. You may also want to ask them to repeat it back to you in their own words.

It is also a good idea to get into the habit of doing this yourself. For example, after someone has spoken to you, you could say something like:

  • So what you’re saying is…blah blah blah
  • I think I understand you…blah blah blah…is that correct?

It is also important to encourage individuals to ask questions if there is something that they don’t quite understand or ask you to repeat yourself, perhaps using different words or utilising visual aids.

By regularly and proactively seeking verification and clarification during conversations, you can minimise misunderstandings (which is easier than mitigating misunderstandings in the future!).

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