Mind > Information > Factsheets and booklets by subject > Learning disabilities > Learning disabilities and mental health problems

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The aim of this factsheet is to give an awareness of the issues of learning disabilities and mental health. It is targeted primarily at students and mental health professionals. Mind has also produced a booklet Understanding learning disabilities which is aimed at people who have a learning disability, their carers, families and friends. It outlines the kind of support that enables people with a learning disability to lead a full and active life, and explains the help that is available and how to access it.

It is well known that people with learning disabilities are more vulnerable to mental health problems and psychiatric illnesses than the general population. It is estimated that 25–40 per cent of people with learning disabilities also have additional mental health needs. [1] Studies suggest that psychiatric problems affect approximately a quarter of those who live in the community, and four in ten of those in hospitals. [2] People with learning disabilities are not always able to access general psychiatric services as and when they wish; however, initiatives put in place in response to the Government White Paper, Valuing People (2001) have improved services for people with learning disabilities in the last five years.

Note on language
The term 'dual diagnosis' is used to refer to the diagnosis of a learning disability together with a mental health problem. However, the term has become confusing because it is now more commonly used to describe people who have a mental health problem and who misuse substances such as alcohol or drugs. The term 'dual diagnosis' is therefore avoided in this factsheet.

We have used the term 'learning disabilities' in this factsheet. Although we recognise that some people in this group prefer 'learning difficulties', the latter term is commonly used to include people who have no intellectual impairment but who have specific difficulties with learning, which are often culturally based, such as dyslexia. This factsheet is not about specific learning difficulties of that type.

In this factsheet we have used the language used by the authors of the original sources referred to. However, the use of such language does not imply Mind's unqualified acceptance of it.

This factsheet is not a statement of Mind's policy on issues of learning disability and mental health problems.

Learning disability is usually the result of a life-long condition that starts before adulthood. Learning disabilities can occur as a result of genetic or developmental factors, or damage to the brain, often at birth. They affect a person's level of intellectual functioning, usually permanently, and may also affect their physical development. Learning disabilities tend to be fairly fixed, and often cannot be treated or controlled with medication or other therapies. However, much can be done to help people with learning disabilities to make use of their abilities and to achieve the best possible quality of life.

The degree of learning disability can vary enormously, even among those diagnosed with the same syndrome. Furthermore, some people may be much more able than they are assumed to be, whereas others may be much less so. One complication is that a person's use of language may not be a good indicator of their level of understanding: someone with fluent speech may in fact have very poor understanding, while another person may have very good understanding but be unable to express themselves fluently.

In 1995, the Department of Health defined a learning disability as "reduced ability to understand new or complex information, or to learn new skills (impaired intelligence); and reduced ability to cope independently (impaired social functioning), which started before adulthood, with a lasting effect on development."

Roy McConkey, Chair of Learning Disability at the University of Ulster has said, "In Great Britain, the Department of Health adopted 'learning disability' as the preferred alternative to 'mental handicap'. However it has been argued that 'intellectual disability' is a more accurate term." [3] In legal documents the term 'moderate or severe learning difficulties' is preferred.

It is difficult to produce accurate information on the number of people with learning disabilities. It is estimated that 580,000–1,750,000 people in the UK have mild learning disabilities, and 230,000–350,000 people have severe learning disabilities. [4] Most live in their family homes initially, and later on in appropriate residential accommodation. [5]

About 985,000 people in England have a learning disability (less than 2 per cent of the population); 796,000 of them are over 20 years of age. [6] In Wales the number of people with learning disabilities (of all ages) who are currently known to their local authority is 13,500 [7] (less than 0.5 per cent of the population).

Evidence suggests [8] that the number of people with a severe learning disability may increase by around one per cent per annum for the next 15 years as a result of:

Learning disability is sometimes confused with mental illness, although the two are very different.

Mental health problems are not usually evident in the early years of a person's life, although some can appear in childhood. People diagnosed as mentally ill have feelings or behave in ways that are unacceptable to themselves or others, but these feelings and behaviours are often temporary and can change over time. Unlike learning disabilities, mental illnesses are not usually thought of as resulting from damage to the brain, and they do not usually result in permanent disabilities of intellectual functioning.

There is much disagreement about the causes of mental health problems, but few proven facts. Issues such as a difficult family background, experience of abuse in childhood, suppression of feelings, stressful life events, biochemistry and genetic predisposition have been implicated. Societal causes, such as poverty and discrimination, may also contribute.

Mental illnesses can also occur in episodes, the person feeling well for some of the time and in crisis for periods of varying length and severity. Such crises are often referred to as 'acute' periods of a person's mental health problem. It is possible to recover completely from mental health problems, and many people do. Psychiatrists have classified mental health problems into different categories or diagnoses, such as depression, schizophrenia and bipolar disorder (manic depression), and usually treat or control the symptoms with medication, although alternative treatments such as psychological and complementary therapies are also available.

Although mental health problems and learning disabilities are two separate diagnoses, people with learning disabilities can experience the full range of mental health problems, though the precise impact of mental illness in this population is not clear. Some people with learning disabilities may be unable to express their feelings in words, so their actions may have to speak for them. Sudden changes in behaviour can often be viewed as a phase, and so appropriate help may not be given.

It has been suggested [9] that people with severe and complex disabilities have difficulty expressing unhappiness because there is a culture among their carers that everything should be 'lovely'. It can therefore be hard for those with severe disabilities to have their distress acknowledged, and their true feelings accepted and understood. Carefully targeted psychotherapy and arts therapies may help people to express their true feelings. For those with severe and complex disabilities it can prove difficult to work out the cause of distress: it may be caused by environmental factors, physical discomfort or emotional distress. Only people who have known the person well over a long period are likely to understand, and so it is extremely important for professionals to listen to carers.

People with learning disabilities who also experience mental health problems have complex needs. However, these needs can be poorly defined, which can mean that people are sometimes referred between different agencies and do not receive adequate therapeutic services. There are very few specific services able to deal with the complex needs of those with learning disabilities and mental health problems, or challenging behaviour, and it is often hard to know where to refer such people. It is important that mental health services and learning disabilities services work together, as envisaged in 'Valuing People' and associated initiatives. Unfortunately this still does not happen in many areas.

Incidence and causes of mental distress in people with learning disabilities

It has been estimated that 16–25 per cent of the population are likely to have a mental health problem at some point in their lives. [10] This compares with an estimated 25–40 per cent of people with learning disabilities who experience more of the risk factors associated with mental ill health, such as adverse life events and lack of social support. [11] There seem to be four key reasons for this:

An estimated 15 per cent of adults with severe learning disabilities have a severe associated behavioural disorder, either as a direct result of their disability or because of underlying psychiatric problems. [18] Behavioural disorders make it even harder to access mainstream services. Service providers need to allow for this and to be as accommodating as possible. Another study showed that of 120 people with learning disabilities of varying severity, 11 per cent had a diagnosable psychiatric condition, although only a third of these had been recognised by psychiatric services. [19]

There can be confusion about what causes people with learning disabilities to experience mental health problems, and professionals can have difficulty making an accurate diagnosis. Symptoms of mental health problems, such as self-harming behaviour, may occur as a direct result of the person's learning disability; for example, as a result of damage to areas of the brain that control certain forms of behaviour. Many syndromes of learning disability are directly associated with challenging behaviour that is seen as part of the person's disability, rather than as a result of underlying psychiatric problems. However, many symptoms of mental distress, such as self-harming behaviour, can also occur in people with learning disabilities as a result of frustration, difficulty in self-expression, emotional pain or other underlying psychological problems. The same is true for other psychiatric diagnoses such as depression.

People with learning disabilities can experience mental health problems for the same reasons that the rest of us do, although it is often far more difficult to distinguish between symptoms and to find suitable therapeutic interventions for them. [20] As a result, mental health problems such as depression tend to be under-diagnosed and many symptoms of mental illness can be 'written off' as challenging behaviour.

St George's hospital has developed a website on learning disabilities in conjunction with the Down's Syndrome Association (see Useful websites). The website provides a list of symptoms which may suggest that someone who does not communicate verbally has a psychotic illness, as well as other behaviour that may be mistaken as a sign of psychosis. [21] Other forms of behaviour that may be understandable in the context of people's experiences or physical condition are also discussed. For example, someone who inspects their food very closely may have been given medication concealed in food in the past; strange hand movements may be associated with undiagnosed and uncorrected sight problems. It is important that people have regular and thorough health checks in order to identify and minimise problems that may be quite easily treated and corrected. It is also important to discuss symptoms with carers and family members who know the person well and may be able to provide insights into the context in which symptoms appear.

Most people with learning disabilities do not find work and so must survive on welfare benefits. Despite government initiatives, informal surveys indicate that only about 11 per cent of people with learning disabilities of working age are in employment. [22] This is a big issue for people with learning disabilities, because even those who do have jobs tend to be poorly paid. Reasons for this exclusion from the labour market are complex, but they include:

Some of these points can present real barriers for people with learning disabilities who want to work in the service industry; for example, in shops and restaurants. But employers who take the time and trouble to offer appropriate training and support can be highly successful in employing such people.

Carer issues
Caring for a family member with a learning disability is a lifelong commitment, which continues even when the person is living away from the family home. Carers make a vital contribution to the lives of people with learning disabilities, often providing most of the support they need. They are a crucial resource to ensure that people with learning disabilities can live in the community. There are no precise data on numbers, but it is estimated that some 60 per cent of adults with learning disabilities live with their families. (See Mind's Carers factsheet.)

Carers need regular breaks from caring, and the people they are caring for need to meet people other than their close family. Teenagers and adults in particular need opportunities to talk to someone other than their parents/carers.

People with learning disabilities may be excluded from services if they are found to be difficult to handle, or present with challenging behaviour. This represents a major cause of stress for carers, who may be left to cope at home unsupported. Decisions to exclude a person with learning disabilities from a service should always be referred to the Learning Disability Partnership Board (see 'Social inclusion'), which will be responsible for the provision of alternative services in such cases, provided the person meets the eligibility criteria. [23]

Older carers
More than 40 per cent of parents caring for a son or daughter with learning disabilities are over 60 years of age. [24] Many are sole carers with inadequate support.

In many cases the person with learning disabilities also takes on a caring role, particularly if their older carer gets sick or frail. Unfortunately, in middle age, the onset of dementia is common for some people with learning disabilities, and if it happens at a time when their parents may have similar problems, it can create a household with very complex needs.

The reversal in role for the person with learning disabilities is generally not recognised by health services and so they don't often receive the support they need. [25]

Ageing
People with certain learning disabilities, particularly Down's syndrome, tend to age at a faster rate than normal because of changes in the brain. Today 80 per cent of people with Down's syndrome will live into their 50s, and some into their 60s and 70s, compared with an average life expectancy of 12 years in 1949. At the same time, one in three of those in their 50s will develop dementia. This means that health services have a new client group to provide for. [26]

Young people
Young people with learning disabilities appreciate the opportunity to meet others in the same position. They need to gain skills that help them to make new friends, use leisure facilities and cope with emotional stress. Coping with life among non-disabled peers can be a source of anxiety and insecurity, but supportive relationships can greatly enhance self-esteem. Teenagers need to be able to discuss sexuality and relationship problems with someone they can trust.

Particular situations
A person with a learning disability is likely to need particular and sensitive support at certain times, such as when a close relative or parent dies, and at times of transition, including on entering, changing and leaving school, at puberty, on starting work or a new job, when setting up new living arrangements, and when having a child. Without special preparation, support and anticipation, they may become anxious or distressed and are likely to show confusing and difficult behaviour at these times. The Royal College of Psychiatrists has produced a series of 'Books beyond words', which use pictures to help people understand some of these life events. [27]

Many emotional problems, medicalised as mental illness, may be readily understood in the context of the person's social situation and therefore alleviated through social and environmental interventions.

Challenging behaviour
In most cases, challenging behaviour occurs because the person with a learning disability is frustrated at his or her inability to make others understand what he or she needs. Challenging behaviour can sometimes be linked to mental health problems such as depression. Cognitive-behavioural approaches can be useful in treating anxiety, depression and anger. (See Mind's booklet, Making sense of cognitive behaviour therapy.) Unfortunately, challenging behaviour is often treated with neuroleptic (antipsychotic) drugs, which calm people by causing apathy and somnolence.

It is important to carefully assess the possible cause of difficult behaviour. For example, someone experiencing physical discomfort, such as toothache, who is unable to explain what is wrong may behave in an aggressive manner through frustration and pain. It is therefore important to make a thorough assessment of a person's physical state. [28]

Minority ethnic communities
People with learning disabilities from minority ethnic communities are at particular risk of discrimination in gaining access to appropriate health care. Problems arise if professionals are not aware of cultural or language issues, or if they use only English language-based assessment tools. The NHS Plan outlines the Government's commitment to tackling the problems that minority communities may face in gaining access to health services. Since April 2001, listed public bodies, such as central and local government, have been obliged to work towards the elimination of unlawful racial discrimination and to promote good relations between persons of different racial groups, as stated in The Race Relations (Amendment) Act 2000.

People with learning disabilities from minority ethnic communities experience multiple disadvantages in relation to race, impairment and, for women, gender. Negative stereotypes and attitudes held by service professionals can contribute to the disadvantage they face. [29]

Difficulties facing carers from minority ethnic communities include lack of sensitivity to issues of culture and language, and false assumptions that communities wish to provide care within their own family environment or do not want support from statutory agencies. Families from minority ethnic communities face additional difficulties in accessing services. Mothers often have not had any opportunity to learn English, and the need to care for their learning disabled child may severely limit their ability to access any opportunities that are available. Language barriers can make it difficult to find out what services might be available – for their children and for themselves as carers. However, when people know what services are available, they use them. These problems are likely to be more marked in families who are recent immigrants or refugees.

Work in Leicestershire has suggested that whilst South Asian and white populations had similar prevalence of learning disabilities, members of other Asian communities made significantly lower use of psychiatric services, residential care and respite care. [30]

As part of the development work for the Valuing People White Paper, the Government has commissioned work on the issues faced by people with learning disabilities from minority ethnic communities. This work highlighted that although a wealth of information about the needs of people from minority communities is readily available, gaps remain, particularly in relation to the views of the people who have learning difficulties. There is a clear need for a commitment to develop services and address those needs. [31] Work in this area has begun in several parts of the country such as Oldham, where families from the South Asian communities took part in a programme called 'Sharing the Challenge', in which they worked with majority communities to make plans for improving access to services. [32]

The criminal justice system
A small number of people with learning disabilities and mental health problems will commit crimes and come into contact with the police, courts and prison service. People with learning disabilities are particularly vulnerable in these situations as they may not understand their rights, and the people dealing with them may not recognise the problems they have and therefore may not provide appropriate support. People are frequently treated inappropriately. If given a custodial sentence, their needs may not be recognised, and they are particularly vulnerable to bullying. [33]

Health and social services play a particularly significant role in the lives of many people with learning disabilities and their families. For many people, it is no exaggeration to say that the quality of their daily life depends on the quality of the services they receive. [34] Unfortunately many people do not know what services are available in their area, or what level of service it is reasonable to expect, and so they may not access the services that are provided.

Policy initiatives introduced in the 1970s have led to the resettlement of people with learning disabilities from long-stay hospitals into the community. Similar policies were introduced for people with mental health problems, and most long-stay psychiatric hospitals have now been closed.

The services required by people with learning disabilities are often complex. People with learning disabilities have individual levels of disability, which vary a great deal from person to person.

When the switch from institutional to community-based care began, planners originally thought that the psychiatric needs of people with learning disabilities would be met by the existing mainstream psychiatric services. It was also envisaged that the resources tied up in long-stay hospitals would instead be used to promote independent living in the community for people with learning disabilities. However, many psychiatric services have been unwilling to take on the psychiatric care of this group, because they believe their staff and services lack the necessary facilities, skills and training. In addition, the funding implications for psychiatric services to take on this extra workload had not been considered.

Bouras and Holt [35] have suggested that even though it may seem preferable for people with learning disabilities to be referred to mainstream mental health services, this may not provide them with suitable care. The provision of specialist services may cause stigmatisation. On the other hand, if mental health services are to be sensitive to the special needs of people with learning disabilities, special training is needed. Mainstream services, even if they have had such training, may not have enough clients to maintain good practice. Bouras and Holt suggest that the provision of specialist tertiary services may bridge the gulf between the different services.

Health authorities and social services differ in the ways in which they provide services to meet the needs of people with both learning disabilities and mental health problems. The type of service available will vary from locality to locality, largely because planners of services have a lot of freedom when deciding how services should be provided to meet the needs of their local populations. Different models of specialised mental health services for those with learning disabilities have been developed over the past ten years, with much local variation. Bouras et al [36] describe the four of the most common types of services as follows:

Large specialist hospital-based provision
Separate specialised provision within inpatient psychiatric units specifically for people with mental health problems and learning disabilities is becoming less common. People are now more likely to be referred to mainstream mental health services.

Community-based specialist psychiatric service
Community-based psychiatric services for those who have a learning disability and a mental health problem are integrated mainly with the learning disabilities services. The person lives in the community and receives support mostly from learning disabilities services, with input from the specialist psychiatric service when necessary.

Community-based specialised psychiatric service, integrated with mainstream psychiatric services
Services are provided in the community and the person lives in a community setting. Input from both learning disabilities services and mainstream community mental health services is provided in the person's own home or residential home when necessary. Mainstream inpatient beds are used if hospitalisation becomes necessary.

Separate 'challenging behaviour' services
Separate 'challenging behaviour' services have been developed as part of learning disabilities services. They are led mainly by clinical psychologists and are not usually residential. Input from psychiatric services will be required, whether or not the 'challenging behaviour' arises from an underlying mental health problem. A psychiatric assessment is vital for anyone with a learning disability and 'challenging behaviour'.

Findings from three Department of Health studies of local authorities and their comparable health authorities revealed variations in the services. The main areas included expenditure, day services, short breaks and accommodation. [37]

A recent study by the Judith Trust [38] of the experiences of women moving from hospital care into homes in the community reported the following main findings.

Even in areas where specialist services do exist, people with learning disabilities and their carers can only access these services if they know about them, and in many cases they do not. It is important for primary care providers to be aware of all the services that are available in their area so that they can make appropriate referrals and suggestions.

Note: This section deals briefly with service provision for people with a mental health problem and a learning disability. For general information about community care provision for people with learning disabilities, contact organisations that deal specifically with this area, such as Mencap or the Foundation for People with Learning Disabilities (see 'Useful contacts').

Medication
"Despite the wealth of research on challenging behaviour [in people with learning disabilities], it is regrettable that medication is still the most frequently used approach to dealing with it". [39] Indeed, a review of the literature shows this to be true, with the full range of psychiatric drugs such as neuroleptics (antipsychotics), minor tranquillisers, lithium and antidepressants being used to treat challenging behaviour and mental health problems in people with learning disabilities. [40]

Studies have shown improvement in behaviour in many cases where behaviour disorders have been treated with mood stabilisers, such as lithium, and anticonvulsants. It is suggested that many people with learning disabilities may have underlying epileptic activity that is helped by these drugs. [41]

Neuroleptics are the most frequently prescribed form of medication for challenging behaviour and mental health problems in people with learning disabilities. [42] This is despite research showing that such drugs can often be used excessively and without consideration of their appropriateness; for example, some of those prescribed neuroleptics would benefit more from antidepressants. [43] It has also been shown that polypharmacy (where a number of different psychiatric drugs are prescribed together) may be more common in people with learning disabilities. [44]

Ahmed et al [45] and Branford [46] have studied the long-term use of drugs in this patient population, and successfully reduced antipsychotic medication without a reappearance of behaviour problems in 52 per cent of their patient group who completed a full withdrawal programme. They also found that prescribing practice was influenced by staff perceptions, environmental factors and staffing ratios.

Talking treatments
Talking treatments, such as psychotherapy and psychological approaches, have been used to treat mental health problems in people with learning disabilities, with varying degrees of success. However, such interventions require specialist training for this client group, and such specialists are very rare. The Department of Health guidelines on psychological therapies state, "We acknowledge that, in the case of people with learning disabilities, there is no clear boundary to identify where this guideline ceases to apply. It should not be assumed that people who have mild-to-moderate cognitive impairment fail to benefit from the mainstream therapies described here." [47]

In reality, however, people with learning disabilities rarely have access to such therapies and are not included in research studies that might assess efficacy. Reports of single case studies suggest that people with learning disabilities can respond well to behavioural therapies. [48]

Other treatments
Other forms of treatment such as occupational therapy, arts therapies, relaxation training and social skills training are also used. While these are common in special schools, they are rarely offered in adult services and are generally available only within specialised centres, of which there are few. Activities such as music and dance groups are more likely to be provided locally by voluntary agencies than by statutory services, and provision is patchy.

Main laws and government initiatives affecting people with learning disabilities

"People with learning disabilities can lead full and rewarding lives, as many already do. But others find themselves pushed to the margins of our society. And almost all encounter prejudice, bullying, insensitive treatment and discrimination at some time in their lives. Such prejudice and discrimination – no less hurtful for often being unintentional – has a very damaging effect" Rt. Hon. Tony Blair, Prime Minister (2001). [49]

The societal problems that people with learning disabilities face fall into three main categories: [50] [51]

Outlined below are the main laws and government initiatives that make a difference to the lives of people with learning disabilities.

Valuing People
The Government published the White Paper Valuing People about people with learning disabilities on 20 March 2001. This important document has had a big impact on the lives of people with learning disabilities in England and Wales. There are four key principles at the heart of the proposals: civil rights, independence, choice and inclusion.

The changes set in motion in response to this White Paper have begun to improve the lives of people with learning disabilities in the last few years. In The story so far …, [53] a report published in 2005, Rob Greig, National Director of the 'Valuing People' initiative, listed the following improvements since the White Paper was published:

However, the report acknowledges that people with the most complex support needs are sometimes not included, and there is still not enough work with people from minority ethnic communities.

The 'Valuing People' 'In Control' project is a pilot for the 'Improving the Life Chances of Disabled People' policy, running in six councils in England.

'Supporting People' [54]
'Supporting People' is a policy and funding framework for support services, which was implemented in April 2003. It brought together several existing programmes to provide a new grant to local authorities, which can be applied flexibly to fund support services for people with learning disabilities and for other vulnerable people, wherever they live. Local social services and housing authorities working with other partners, including the NHS, are expected to establish joint arrangements for deciding how to apply the grant, and to integrate the planning and commissioning of support services with the planning and commissioning of housing, care and health services.

Learning Disabilities Task Force [55]
The Learning Disabilities Task Force is a team of people with learning disabilities, family carers, health and social care professionals, representatives of voluntary organisations and academic experts, whose job is to find ways to implement the ideas in the Valuing People White Paper. The Task Force meets four times a year to discuss and agree actions that will improve the lives of people with learning disabilities. It includes subgroups on finance and housing.

Learning Disability Partnership Boards
Learning Disability Partnership Boards were set up to ensure that the ideas in Valuing People would be used to make life better for people with a learning disability at local level. The Director of Social Services at each local authority set up the Partnership Board.

National Advisory Group on Learning Disabilities and Ethnicity [56]
This is a new group coordinated by the Foundation for People with Learning Disabilities. The group will focus on policy development, working with the Learning Disability Task Force, The National Forum for People with Learning Disabilities, 'Valuing People' and the Commission for Equality and Human Rights to advise on government policy on issues relating to learning disabilities and ethnicity.

Grŵp Cynghori Gweithredu ar Anabledd Dysgu (GCGAD) [57]
(The Learning Disability Implementation Advisory Group (LDIAG)) This group advises the Welsh Assembly on all issues relating to learning disabilities.

The Disability Discrimination Act 1995
This gives disabled people, including people with learning disabilities, rights in the area of transport, employment, information about education, property, goods, facilities and services. The Commission for Equality and Human Rights, Values into Action and many advocacy organisations support people who have been discriminated against (see 'Useful contacts').

The Human Rights Act 1998
This adopts the articles of the European Convention on Human Rights, and came into force in October 2000. It allows individuals to challenge violations of human rights in the UK courts. Articles that may be relevant to people with learning disabilities include: the right to life, prohibition of inhumane or degrading treatment, the right to a fair trial, the right to marry, prohibition of discrimination and the right to education.

The Mental Capacity Act 2005 [58]
The Mental Capacity Act 2005 provides a statutory framework to empower and protect vulnerable people who are not able to make their own decisions. It makes it clear who can take decisions, in which situations, and how they should go about this. It enables people to plan ahead for a time when they may lose capacity. The Act presumes that everyone has the capacity to make their own decisions unless it is proved otherwise, and states that people must be supported to make their own decisions. People have the right to make what others may consider to be unwise or eccentric decisions. Anything done on behalf of a person who lacks capacity must be in their best interests and the least restrictive of their rights and freedoms.

The Act sets out a single clear test for assessing whether a person lacks capacity to take a particular decision at a particular time. It is a 'decision-specific' test. No one can be labelled 'incapable' as a result of a particular medical condition or diagnosis. Section 2 of the Act makes it clear that lack of capacity cannot be established merely by reference to a person's age, appearance, or any condition or aspect of a person's behaviour that might lead others to make unjustified assumptions about capacity.

Physical health care
People with mental health problems often find that their physical health problems are not taken seriously by doctors and may be neglected. This is unfortunately even more likely to happen to those who also have learning disabilities. This problem is being addressed at a local level under the 'Valuing People' initiatives, and some primary care practices are making an effort to include people with learning disabilities in screening and preventive work. A national network of learning disability nurses and other professionals are working together on this, and on initiatives to improve the care given to this group in general hospitals. [59]

National Service Frameworks
The National Service Framework for Mental Health applies to all adults of working age. The aims of the National Service Frameworks for Mental Health, for both England (1999) and Wales (2001), are to improve quality, tackle variations in access to care, increase the effectiveness of care and enhance user and carer experience by ensuring that changes are systematic and sustainable. The National Service Frameworks came about because standards of care for people with mental health problems varied greatly depending on the geographical area in which they lived. A person with a learning disability who has a mental illness should therefore expect to be able to access services and be treated in the same ways as anyone else. For further information, see Mind's factsheet Community care 2: Systems for delivering mental health services.

The NHS and Community Care Act 1990
The NHS and Community Care Act 1990 strengthened the duties of local authorities to ensure that adequate care management systems are in place to respond to individual requests for services, assess need, plan care based on these needs and/or deliver services to meet them where appropriate. Part 3 of the Act covers the provision of community care services, accommodation and welfare for people over 18 "in need of care and attention" by reason of their disability. The Act seeks to enable people to exercise greater choice and control about the services they receive and how these are delivered. For further information, see Mind's factsheet Community care 2: Systems for delivering mental health services.

Joint Investment Plans [60]
Joint Investment Plans (JIPs) are produced jointly by local authorities, health authorities and other stakeholders for the integrated provision of services for a range of client groups. JIPs for learning disabilities were introduced from April 2001. The aim of JIPs is to ensure that social workers, housing officers and doctors and nurses work closely together to give people with learning disabilities a better service that will help them to achieve and sustain maximum independence.

The Community Care (Direct Payments) Act 1996
This and subsequent regulations give local authorities the discretionary power to make cash payment to anyone assessed as needing community care services. These payments are in lieu of services and enable people with learning disabilities to exercise greater control over their lives. The Story so far … [61] reports that most people who have received them say that direct payments helped to make things better. However, they do not suit everyone, and in some cases other schemes are needed to help people gain more control over their services, such as setting up trust funds for people with high support needs.

The Carers and Disabled Children Act 2000
This Act, which came into force in April 2001, extended a carer's right to an assessment (already provided for in the Carers Recognition and Services Act 1995). It now covers carers who look after someone who has refused an assessment or community care services. It gives local councils the power to offer services to support carers in their caring role and to help them maintain their own health and wellbeing.

The Judith Trust, an organisation for people with learning disabilities and mental health needs, has highlighted several services and projects as examples of good practice. [62] This is not an exhaustive list, nor even a representative sample of the work that is currently being carried out in the UK. The Judith Trust identifies particular issues that could be barriers to good practice in service provision. These include:

There is no shortage of good guidance on the services that are needed by people with learning disabilities, and on how these can be delivered. However, there are concerns about failures in crucial aspects of provision for people with learning disabilities, especially for those with mental health problems. [63] The policies outlined in the Valuing People White Paper are beginning to make a difference to the way people with learning disabilities are perceived and treated, but many changes are still needed for these people to have happy and fulfilling lives.

These factsheets are available on Mind's website and from the MindinfoLine.
Advance directives
Carers
Community care series
Community care 1: The spectrum of mental health services
Community care 2: Systems for delivering mental health services
Community care 3: How to access community care services
Community care 4: Commissioning services
Community care 5: Charging for community care services
Holidays
How to access services, information for carers
Public attitudes to mental distress
Housing

The following booklets are available from the Mind Publications Unit (0844 448 4448; publications@mind.org.uk). Many of these booklets are available in other languages via the Mind website.
How to cope as a carer
How to cope with sleep problems
How to improve your mental wellbeing
How to look after yourself
How to recognise the early signs of mental distress
Mind guide to advocacy
My name is Pete (an illustrated booklet about psychosis)
Understanding attention deficit hyperactivity disorder
Understanding autistic spectrum disorders
Understanding learning disabilities
Understanding mental illness
Understanding self-harm

Legal advice booklets
Mind's Rights Guides provide an understanding of the Mental Health Act
1: Civil admission to hospital
2: Mental health and the police
3: Consent to treatment
4: Discharge from hospital
5: Mental Health and the courts
6: Community care and aftercare

Money and mental health series
Looking after your personal finances
Managing on benefits

Books
Count us in: the report of the committee of inquiry into meeting the mental health needs of young people with learning disabilities (The Foundation for People with Learning Disabilities 2002)
Hidden lives: improving life chances of people with a learning disability, (Turning Point 2004)
Joined up care: good practice in services for people with learning disabilities and mental health needs, Z Kurtz (The Judith Trust 2001)
Making us count: identifying and improving mental health support for young people with learning disabilities (The Foundation for People with Learning Disabilities 2005)

The following books are available from the Mind Publications Unit:
Cultural diversity, mental health and psychiatry: the struggle against racism, S Fernando (Brunner-Routledge 2003)
Living with mental illness: a book for relatives (third edition), E Kuipers and P Bebbington (Souvenir Press 1997)
The selfish pig's guide to caring, H Marriott (Polperro Heritage Press 2003)

England – Department of Health
Available from www.dh.gov.uk
Caring about Carers: the Report of the National Carers Strategy, 2000.
Facing the Facts – Services for People with Learning Difficulties. A Policy Impact Study of Social Care and Health Services, 1999.
Health of the Nation: a strategy for people with learning disabilities, 1995.
Inside Outside – Improving Mental Health Services for Black and Minority
Ethnic Communities in England, 2003.
Learning Difficulties and Ethnicity, 2001.
National Service Framework for Mental Health for England, 1999.
Signposts for success in commissioning and providing health services for people with learning disabilities, 1998.
The NHS Plan, 2000.
Valuing People: a new strategy for learning disability in the 21st century, 2001.

Available from www.assemblywales.org
Brief for Inspection of Services for Adults with Learning Disabilities, Social Services Inspectorate for Wales, 2001.
National Service Framework for Mental Health, 2002.

Age Concern
Age Concern England
Astral House
1268 London Road
London SW16 4ER
information line: 0800 00 99 66
website: www.ageconcern.org.uk
Age Concern is the largest charity movement in the UK concerned with the needs and aspirations of older people, and is the leading authority on ageing-relating issues. The website contains many useful links.

Age Concern Cymru
Ty John Pathy
13–14 Neptune Court
Vanguard Way
Cardiff CF24 5PJ
tel: 029 2043 1555
website: www.accymru.org.uk

Association for Real Change (ARC)
ARC House
Marsden Street
Chesterfield S40 1JY
tel: 01246 555 043
website: www.arcuk.org.uk
ARC is a membership organisation. It supports providers of services to people with learning disabilities to promote real change.

ARC Cymru
Unit 3A, Mentec
Deiniol Road
Bangor LL57 2UP
tel: 01248 361 990
website: www.arcuk.org.uk

British Institute of Learning Disabilities
Campion House
Green Street
Kidderminster
Worcestershire DY10 1JL
tel: 01562 723 010
website: www.bild.org.uk
Provides publications and training services for organisations and individuals.

Carers UK
20–25 Glasshouse Yard
London EC1A 4JT
tel. 020 7490 8818
website: www.carersuk.org
With branches throughout the UK, Carers UK provides information and support for carers on subjects such as benefits, residential care, respite care and the Carers Act.

Change
Units 19/20
Unity Business Centre
26 Roundhay Road
Leeds LS7 1AB
tel 0113 243 0202
minicom 0113 243 2225
website: www.changepeople.co.uk
Change is a national organisation run by disabled people that works for the rights of all people with learning disabilities, including those who are deaf or blind.

Commission for Equality and Human Rights (CEHR)
Kingsgate House
66–74 Victoria Street
London SW1E 6SW
tel: 020 7215 8415 (general enquiries)
tel: 020 7215 8741 (media enquiries only)
website: www.cehr.org.uk
The aims of the CEHR are to reduce inequality, to eliminate discrimination, to strengthen good relations between people, and to protect human rights. From October 2007, the CEHR takes over the functions of the Commission for Racial Equality, the Equal Opportunities Commission and the Disability Rights Commission. The CEHR also covers rights and discrimination relating to age, faith/belief and sexuality.

The Elfrida Society
34 Islington Park Street
London N1 1PX
tel: 020 7359 7443
website: www.elfrida.com
The Society provides practical support and publications, and campaigns for people with moderate learning disabilities.

Foundation for People with Learning Disabilities (FPLD)
9th Floor
Sea Containers House
20 Upper Ground
London SE1 9QB
tel: 020 7803 1100
website: www.learningdisabilities.org.uk
Part of the Mental Health Foundation, the Foundation for People with Learning Disabilities works to promote the rights, quality of life and opportunities of people with learning disabilities and their families, by working with people with learning disabilities, their families and the people who support them. The FPLD is the leading UK charity researching learning disabilities issues.

Inspired Services
Cotswolds
Centre Drive
Newmarket CB8 8AN
tel: 01638 561 753
freephone: 0800 0430 980
website: www.inspiredservices.org.uk
Inspired Services publishes easy-to-read documents and a 'valued people' clip-art collection; and provides advocacy and training. Provides advice or help on anything to do with learning disability, for example, benefits, housing rights and local services.

The Judith Trust
5 Carriage House
90 Randolph Avenue
London W9 1BG
tel: 020 7266 1073
website: www.judithtrust.org.uk
The aim of the Judith Trust is to improve the quality of life for people with learning disabilities and mental health needs. It supports multidisciplinary, preventive and innovative approaches to help those with learning disabilities and mental health problems.

Mencap
123 Golden Lane
London EC1Y 0RT
tel. 020 7454 0454
Learning Disability Helpline (England only): tel: 0808 808 1111
email: help@mencap.org.uk
website: www.mencap.org.uk
Ask Mencap: www.askmencap.info
Mencap is the UK's leading learning disability charity, providing a variety of services including support with housing, education, employment and leisure activities. Ask Mencap is an online information service on learning disability issues, organisations and services.

Mencap Cymru
31 Lambourne Crescent
Cardiff Business Park
Llanishen
Cardiff CF14 5GF
tel: 029 2074 7588

Mental Health Media
356 Holloway Road
London N7 6PA
tel: 020 7700 8171
website: www.mhmedia.com
Mental Health Media promotes and supports the voice of people with learning difficulties, and has developed a dedicated project, MEdia, to help people with learning difficulties to get the most out of the media (www.ldmedia.org.uk).

The National Forum for People with Learning Disablities
c/o PO Box 2100
Shoreham-by-sea
West Sussex BN43 5UG
web: www.nationalforum.co.uk

People First (Self Advocacy)
4th Floor
Hampton House
20 Albert Embankment
London SE1 7TJ
tel. 020 7820 6655
website: www.peoplefirstltd.com
People First (Self Advocacy) is a user-led membership organisation involved with campaigning, information and training.

Prospects
Prospects for People with Learning Disabilities
69 Honey End Lane
Reading RG30 4EL
tel: 0118 950 8781
website: www.prospects.org.uk
Prospects is a Christian voluntary organisation that values and supports people with learning disabilities so that they can live life to the full.

Together
Together National Office
12 Old Street
London EC1V 9BE
tel: 020 7780 7300
website: www.together-uk.org
Together is a national charity working for wellbeing, supporting people with mental health needs to get what they want from life and to feel happier.

Turning Point
Turning Point Head Office
Standon House
21 Mansell Street
London E1 8AA
tel: 020 7481 760
website: www.turning-point.co.uk
Turning Point is a social care organisation, working in the areas of substance misuse, mental health and learning disability.

UK Advocacy Network (UKAN)
Volserve House
14–18 West Bar Green
Sheffield S1 2DA
website: www.u-kan.co.uk
UKAN supports, advises and represents a network of user-run advocacy groups.

Values Into Action
Oxford House
Derbyshire Street
London E2 6HG
tel: 020 7729 5439
website: www.viauk.org
UK-wide campaign with people who have learning difficulties.

www.bris.ac.uk/Depts/NorahFry
Part of the University of Bristol's Department of Mental Health. The Norah Fry Research Centre researches issues affecting the lives of disabled children and adults with learning difficulties and their families and, through their research findings, aims to influence policy, improve services and support, empower and inform service users, families and professionals.

www.intellectualdisability.info
This website, entitled 'Learning about intellectual disabilities and health' was developed as a collaboration between the Division of Mental Health at St George's, University of London and the Down's Syndrome Association.

www.oneforus.com
A website for people who have a learning difficulty (it is described as 'not for carers or parents, it's for you').

[1] Foundation for learning disabilities. Statistics about people with learning disabilities. www.learningdisabilities.org.uk/information/learning-disabilities-statistics/
[2] Mansell, J.L., 1993. Services for people with learning disabilities, challenging behaviour or mental health needs, Project Group Report.
[3] www.mexico-child-link.org/learning-disability-definition.htm
[4] Foundation for learning disabilities. Statistics about people with learning disabilities. www.learningdisabilities.org.uk/information/learning-disabilities-statistics/
[5] Department of Health, 2002. Learning disabilities – facts and figures.
[6] Institute for Health Research, Lancaster University, 2004. Estimating future need/demand for supports for adults with learning disabilities in England.
[7] Welsh Assembly Government, 2006. Personal Social Services Statistics Wales 2005–06
[8] Department of Health, 2001. Valuing people: a new strategy for learning disability for the 21st century.
[9] Sinason, V., 1992. Mental handicap and the human condition: new approaches from the Tavistock. Free Association Books, London.
[10] Mind, 2005. Factsheet Statistics 1: How common is mental distress?
[11] The Foundation for People with Learning Disabilities, 2003. Health needs of people with learning disabilities.
[12] Collacot, R, et al., 1992. Differential rates of psychiatric disorders in adults with downs syndrome compared to other mentally handicapped adults. British Journal of Psychiatry 161: 671–674.
[13] O'Dwyer, J.M., 1997. Schizophrenia in people with learning disability: the role of pregnancy and birth complications. Journal of Intellectual Disability Research 41(3): 238–251.
[14] Tharinger, D. et al., 1990. Sexual abuse and exploitation of children and adults with mental retardation and other handicaps. Child Abuse and Neglect 14(3): 301–312.
[15] Lindsay, M., 1997. Emotional, behavioural and psychiatric disorders in children. In: Russell, O. (ed) Seminars in the Psychiatry of Learning Disabilities. Royal College of Psychiatrists, London.
[16] Reid, A., 1995. Psychiatric services for people with learning disabilities. British Medical Journal 310: 1549–1550.
[17] The Foundation for People with Learning Disabilities, 2005. Count us in: the report of the committee of inquiry into meeting the mental health needs of young people with learning disabilities.
[18] Reid, A., 1995. Psychiatric services for people with learning disabilities. British Medical Journal 310: 1549–1550.
[19] Brooke, D., 1998, Patients with a learning disability at Kneesworth Hospital. Psychiatric Bulletin 22: 29–32.
[20] Bouras, N., Holt, G. Gravestock, S., 1995. Community care for people with learning disabilities: deficits and future plans. Psychiatric Bulletin 19: 134–137.
[21] Ryan, R., 2001. Recognizing psychosis in nonverbal patients with developmental disabilities. www.intellectualdisability.info/diagnosis/psychosis_rr.htm
[22] Ryan, R., 2001. Recognizing psychosis in nonverbal patients with developmental disabilities. www.intellectualdisability.info/diagnosis/psychosis_rr.htm

[23] Department of Health, 2001. Valuing people: a new strategy for learning disability for the 21st century, 2001.
[24] The Foundation for People with Learning Disabilities, 2002. Older People with learning disabilities
[25] Kurtz, Z., 2001. Joined up Care: good practice in services for people with learning disabilities and mental health needs. The Judith Trust, London.
[26] Maybin, M., 2003. New group with old issues. Community Care 6–12 November: pp 40–41.
[27] Royal College of Psychiatrists, Books Beyond Word series. www.rcpsych.ac.uk/publications/booksbeyondwords.aspx
[28] Deb, S., 2004. The use of drugs for the treatment of behaviour disorders in adults who have learning [intellectual] disabilities. www.intellectualdisability.info/mental_phys_health/P_drugs_beh_sd.html
[29] Mir, G, et al. 2002. Learning difficulties and ethnicity, report to the Department of Health.
[30] McGrother CW, et al., 2002. Prevalence, morbidity and service need among South Asian and White adults with intellectual disability in Leicestershire, UK. Journal of Intellectual Disability Research. 2002 46(Pt 4): 299–309.
[31] McGrother CW, et al. 2002. Prevalence, morbidity and service need among South Asian and White adults with intellectual disability in Leicestershire, UK. Journal of Intellectual Disability Research 2002, 46(Pt 4): 299–309.
[32] Greig, R., 2005. Valuing People: The story so far… A new strategy for learning disability for the 21st century. Department of Health.
[33] The Foundation for People with Learning Disabilities, 2005. Count us in: the report of the committee of inquiry into meeting the needs of young people with learning disabilities.
[34] Department of Health, 1999. Facing the facts, services for people with learning difficulties – A policy impact study of social care and health services.
[35] Bouras, N., Holt, G., 2004. Mental health services for adults with learning disabilities. British Journal of Psychiatry 184: 291–292.
[36] Bouras, N., Holt, G. Gravestock, S., 1995. Community care for people with learning disabilities: deficits and future plans. Psychiatric Bulletin 19: 134–137.
[37] Department of Health, 1999. Facing the Facts: Services for People with Learning Disabilities – A Policy Impact Study of Social Care and Health Services.
[38] Owen, K., 2003. A study of women with severe learning disabilities moving out of a locked ward. The Judith Trust, London.
[39] Matthews, D., 1995. Challenging service. Nursing times 91 (23): 59.
[40] Matthews, D., 1995. Challenging service. Nursing times 91 (23): 59.
[41] Deb, S., 2004. The use of drugs for the treatment of behaviour disorders in adults who have learning [intellectual] disabilities. www.intellectualdisability.info/mental_phys_health/P_drugs_beh_sd.html
[42] Brooke, D., 1998. Patients with a learning disability at Kneesworth Hospital. Psychiatric Bulletin 22: 29–32.
[43] Brooke, D., 1998. Patients with a learning disability at Kneesworth Hospital. Psychiatric Bulletin 22: 29–32.
[44] Brooke, D., 1998. Patients with a learning disability at Kneesworth Hospital. Psychiatric Bulletin 22: 29–32.
[45] Ahmed Z, Fraser, W, Kerr, MP, et al., 2000. Reducing antipsychotic medication in people with a learning disability. British Journal of Psychiatry 178: 42–46.
[46] Branford, D., 1996. Factors associated with a successful or unsuccessful withdrawal of antipsychotic drug therapy prescribed for people with learning disabilities. Journal of Intellectual Disability Research 40: 322–329.
[47] Department of Health, 2001. Guidelines for treatment choice in psychological therapies and counselling.
[48] Banks, R., 2003. Psychological treatments for people with learning disabilities. www.intellectualdisability.info/mental_phys_health/P_treatments_rb.html
[49] Department of Health, 2001. Valuing people: a new strategy for learning disability for the 21st century..
[50] www.intellectualdisability.info/values/index.htm
[51] Emerson, E., Hatton, C., Felce, D., Murphy, G., 2001. Learning Disabilities, The Fundamental Facts. The Foundation for People with Learning Disabilities.
[52] Department of Health, 1999. Facing the facts – services for people with learning difficulties. a policy impact study of social care and health services.
[53] Greig, R., 2005. The story so far… Valuing People: a new strategy for learning disability for the 21st century. Department of Health.
[54] Supporting People programme, www.spkweb.org.uk
[55] Learning Disability Task Force
[56] Foundation for people with learning disabilities: Working with adults
[57] The Learning Disability Implementation Advisory Group. www.ldiag.org.uk
[58] The Mental Capacity Act
[59] Greig, R., 2005. The story so far… Valuing People: a new strategy for learning disability for the 21st century. Department of Health.
[60] NIACE. Joint investment plans (JIPs): the implications for education and training providers. www.niace.org.uk/Information/Briefing_sheets/JIPs.htm
[61] Greig, R., 2005. The story so far… Valuing People: a new strategy for learning disability for the 21st century. Department of Health.
[62] Kurtz, Z. 2001, Joined Up Care: good practice in services for people with learning disabilities and mental health needs. The Judith Trust.
[63] Kurtz, Z. 2001, Joined Up Care: good practice in services for people with learning disabilities and mental health needs. The Judith Trust.

This factsheet was written by Carole Reid-Galloway, Mind Information Unit May 2003, and updated by Katherine Darton, July 2007.