LO. 1 - Explain what is meant by "learning disabilities", and outline their possible causes and manifestations.
The term and definition of learning disability has its controversies and ambiguousness and the term means different things to different people having various cultural and medical connotations. Individuals identified as having learning difficulties are recognized and understood by the communities in which they live, the personal services they need, and the kind of support they expect. Yet, generally Learning Disability can be defined as
a cognitive disorder that adversely affects people's ability to interpret visual and auditory information or to link different pieces of information from different parts of the brain to integrate them in a coherent manner. There is thus an apparent lack of integration and coordination of information (see Emerson et al., 2001). These limitations as revealed through learning disabilities can be manifested as specific difficulties with coordination, attention, spoken and written language, or even self-control. Difficulties in learning also affect schoolwork and can lead to impediments in learning to read and write.
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According to the Department of Health, Learning Disability can be defined as
'A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with, a reduced ability to cope independently (impaired social functioning) and which started before adulthood, with a lasting effect on development.' (DOH, 2001 p14)
Specifically in Scotland the term learning disability is used to describe:
' those with a significant, lifelong condition that started before adulthood, that affects their development and which means they need help to understand information, learn skills and cope independently.' (Scottish Executive, 2000)
According to the British Institute of Learning Disabilities, (BILD), Learning Disability is just a label. BILD points out that the term learning disability is being increasingly replaced by the term learning difficulties and as given by the Warnock Committee 'learning difficulties' is a term used 'to cover specific problems with learning in children that might arise as a result of a number of different factors, eg medical problems, emotional problems, language impairments etc' (BILD, 2005).
There can be different types of learning disabilities that can be categorized into three broad groups:
Learning Disabilities related to developmental speech and language disorders.
Learning Disabilities associated with academic skills disorders
Learning Disabilities associated with coordination disorders, learning handicaps and problems in integration of information
For deciding that someone has learning disabilities, three diagnostic criteria are used:
- Intellectual Ability
- Legislative definitions of learning disability
- Social competence.
Learning disability can also be classified into two main categories and the causes can be genetic or environmental.
Learning disability can occur due to several different types of causes. Impairments causing learning difficulties can occur before, after or during birth. Before birth reasons can be congenital and include Down syndrome, Turner syndrome, Hurler syndrome or Fragile X syndrome. Oxygen deprivation during birth and postnatal illnesses, brain injury or meningitis can lead to learning disabilities and impaired cognitive development. Environmental factors leading to learning disabilities can include infections, trauma, drugs or social deprivation and neglect (Watson, 2003). As we have already mentioned particular types of learning disabilities are associated with particular kinds of manifestations and specific learning characteristics.
LO.2 - Estimate the prevalence of learning disabilities and appreciate the impact that this may have on professional health care practice.
The incidence and prevalence of learning disability is difficult to determine as the only manifestations of learning disability that can be detected at birth are clear syndromes like Down syndrome and the majority of infants with learning disabilities go undetected till much later. Delays in children's cognitive development help ascertain whether they have learning disabilities. Prevalence of a disease or a general condition is the estimation of the number of people affected as a proportion to the general population. If IQ is used as an indicator of learning disability, then many people with learning disabilities go unaccounted for. Administrative prevalence of any such condition refers to the number of people that are provided with some form of service from caring agencies.
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The general consensus is that the overall prevalence of moderate and severe learning difficulties are 3-4 people per 1000 in the general population (DoH, 1992). The prevalence of severe to moderate disability has been recorded at 3.7 per 1000 population whereas the prevalence of mild learning disability seems to affect 20-30 per 1000 of the general population. Further it has been observed that among 3-4 persons in 1000 within UK suffering with learning disabilities nearly 30% report severe or profound learning problems. Within the group of individuals suffering from severe learning difficulties most also suffer from multiple physical and sensory impairments as also behavioral difficulties.
These individuals require lifelong support to maintain themselves and to achieve a level of lifestyle. Emerson et al (2001), have suggested that within UK there are some 230,000-350,000 persons with severe learning disabilities, and around 580,000-1,750,000 persons with mild learning disabilities. They also suggest in their study that there are differences in male and female prevalence rates and incidence of disabilities with males showing higher prevalence than females.
Enable et al. (2003) have suggested that the number of people with learning disabilities has increased by 1.2 % a year over the last 35 years and since 1965 the number of people with severe learning disabilities has increased by 50%.
There are many controversies on the validity and use of epidemiological data and on prevalence and incidence rates of learning disabilities. All children with learning disabilities are not reported and in most cases it is difficult to understand the symptoms of learning disability until at a much later stage. One of the major problems is the argument that collection of data on disabled individuals invariably leads to labeling and brings in concerns as to whether such discrimination is useful or necessary. However some scholars have argued that labeling helps in identifying the disabled individuals and ensures that special needs of such people are met through adequate care provisions. Incidence rates and prevalence data on learning disabilities are helpful in clinical practice as it provides an estimate of the nature and extent of support that healthcare services should be prepared to provide.
LO.3 - Describe how people with learning disabilities have been misunderstood in the past and how this may affect contemporary provision of health care for them.
Attitudes and beliefs about people with learning disabilities have changed rapidly in the last few decades and have consequently shaped healthcare provisions available to this group of people. Models of social inclusion and community care have replaced traditional models of institutional care and there is more emphatic appreciation of civil and human rights of individuals with learning disabilities. It has been argued that the rate of change in services to disabled individuals has been slow in Scotland as compared to other parts of Britain, but this has also helped enable accurate assessment and greater response to fulfilling needs of people with learning disabilities. Social care policies by the Department of Health, legislative definitions of learning difficulties along with human rights campaigning for such people and increased spread of awareness that learning disability is more of a convenient label, have altogether led to improved conditions and stronger commitments to provide a more person centered approach to care than before.
People with severe or moderate learning disabilities were regarded as mentally deficient or retarded and since the implementation of the Mental Deficiency Act in 1913, it was recommended and all mentally retarded be categorized according to the level of disability and by 1929 100, 000 mentally retarded individuals were institutionalized in the UK. Although in the early 19th century, institutional care for patients with learning disabilities aimed at modifying or changing mental defect, this was quickly replaced by a philosophy of control and coercion in custody. The initial institutionalized 'colonies' were changed to long term hospitals following the NHS 1946 Act. By the 1950s and 1960s the concept of custodial institutionalized care for learning disabilities was questioned and there was an eventual introduction of community care.
In 1971 the White Paper 'Better Services for the Mentally Handicapped' was introduced in Great Britain and the care philosophy was led by the concept of normalization rather than segregation. This was aimed to increase social participation and greater social roles of individuals with learning disabilities to integrate them in mainstream society. The contemporary provision of health care as set by the Department of Health or NHS gives emphasis to schedules of community care, social inclusion and social participation of individuals with learning disabilities and discourages institutionalization.
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LO.4 - Define the concept of inclusion and identify barriers that serve to exclude people with learning disabilities from mainstream services.
Introducing the strategy for services supporting people with learning disabilities in England, the Department of Health (2001) has described social inclusion in the following words:
'Being part of the mainstream is something most of us take for granted. We go to work, look after our families, visit our GP, use transport, go to the swimming pool or cinema. Inclusion means enabling people with learning disabilities to do those ordinary things, make use of mainstream services and be fully included in the local community.'(p24)
People with learning disabilities have long been marginalized and excluded from society not only regarding social issues but also indirectly on decisions about their own lives. The Human Rights Act 2000 has also stressed on the basic fundamental rights of such individuals and this has given them a voice and strength in society. Whether it is choice of career or access to health services, the individuals with learning disabilities now have many options, and varied preferences. According to Jenkins et al (2003), 'an inclusive approach recognizes that formal and informal elements of the wider society need to change or adapt to enable excluded people to use opportunities and services.' This explains the general approach in providing care to individuals with learning disabilities and the aim is to help them adapt and merge with the mainstream society with increased opportunities and special services.
Yet there are major barriers to providing such individuals with the advantages of normal provisions and services. Some of these barriers include the nature of the problems that can involve severe physical or mental impairment. Factors identified as impediments to social inclusion of learning disabled individuals can be the process of 'labeling' itself which discriminates socially healthy individuals from the disadvantaged ones. Although labeling has it won advantages, identifying individuals as disabled can lead to special exclusion and discrimination in areas of jobs, lifestyle or social participation.
Although the situation has drastically improved after recognition of human rights needs of the learning disabled, the disadvantaged people's own low levels of motivation, heightened social anxiety, discomfort in social participation, feelings of inferiority and practical problems in not being able to perform normal physical activities are common barriers to a health social life for these individuals. The mindset of people towards disadvantaged individuals may be changing but needs to change even further. Several associated illnesses, physical, visual, language deficiencies, special health needs such as weight problems, requirements in special schools and education needs are also some of the barriers that impede the active participation of such individuals in mainstream society.
LO.5 - Identify the main additional health problems faced by people with learning disabilities, and the consequent challenges posed to mainstream health services.
Some of the associated health problems in people with learning disabilities are
- Mental illness such as schizophrenia, anxiety and depression and also challenging behavior such as aggression and self-injury. Prevalence rates of mental health illnesses are greater among individuals with learning difficulties than among the general population. Learning-disabled persons are also categorized as mentally deficient or retarded as they may not be able to perform intelligence tests due to their learning problems. Thus such people may be categories as having severe intellectual difficulties resulting in subnormality or abnormality. Abnormal conditions are however more of psychopathic disorders found widely in these individuals.
- Epilepsy shows higher prevalence rates in persons with learning disabilities than in the normal population. The British Epilepsy Association has estimated that there are nearly 200,000 people with learning disabilities severely affected by the learning disability disorder. (BILD, 2001)
- Physical and Sensory disabilities are common in people with learning disabilities as visual and auditory impairments are common in such conditions. Hearing impairment is found in individuals with Down's Syndrome and these additional disabilities are also associated with the fact that the persons with learning problems do not get support as far as using other devices are concerned.
- Complex health needs are common among people with learning disabilities and issues such as weight problems, or lack of a balanced diet are barriers in the betterment of such individuals. Significant numbers of people with such conditions do not engage in required amounts of physical activities and there is also a general lack of awareness about the amount or nature of diet that should be taken for a sedentary life. This leads to further complications such as heart problems, kidney problems etc at a young age.
- Chronic dental problems, poor oral health and unhealthy teeth and gums are some of the common problems. Such individuals have untreated tooth decay that is prolonged and causes damage, as well as a very poor sense of oral hygiene with irregular or minimal brushing and cleaning of the mouth etc. This aggravates other associated health problems.
Facing and consequently overcoming health problems are the major barriers and also the major challenges not only for individuals with learning disabilities but also for social workers, community healthcare professionals and the Department of Health as a whole.The concept of social inclusion necessitates that these related health problems should be considered.
LO.6 - Discuss the importance of working in partnership with people with learning disabilities, using advanced communication skills, and the concept of capacity to give informed consent, along with the potential impact this may have on professional health care practice.
According to Dunbar, working in partnership with people with learning disabilities is an essential first step towards social inclusion of such individuals. He wrote,
people with learning disabilities or a mental illness should be treated in the same way as other people, not in side rooms. this lessens the chance of the person being out of sight, out of mind (Dunbar, 2003).
This possibility of discrimination of such individuals have led to the recognition of the need for improved training, services and communication skills to effectively support and help these individuals. Health care professionals caring for persons with learning disabilities are required to have positive attitudes towards their patients. However within the healthcare setting negative attitudes and discriminatory practices are common and several studies have reported that such individuals are deprived of health care facilities and do not receive the care they should receive. In certain cases, inappropriate and derogatory language is also used to describe such patients and there have been reports of denied access to aids such as glasses or hearing equipment that can improve the quality of life for such individuals.
The NHS Executive (1998) has stated that nursing staff require special training opportunities to face and overcome their fears or prejudices towards people with learning disabilities in order that they may learn to treat them with respect and equally as they treat other normal patients. Nurses and other health professionals should always try to go beyond social obstacles and try to meet or associate with such individuals in normal social situations and recognize their needs and shed any notion of stereotypes.
The White Paper - The same as you (Scottish Executive, 2000) has placed great emphasis on the needs of individuals with learning disabilities and to treat them equally. These are:
- being at the centre of decision making and have more control over their care;
- being included, better understood and supported by the communities in which they live;
- having information about their needs and the services available, so that they can take part, more fully, in decisions about them;
- having the same opportunities as others to get a job, develop as individuals, spend time with family and friends, enjoy life and get the extra support they need to do this; and
- being able to use local services wherever possible and special services if they need them. (Scottish Executive, 2000)
It is recommended that specialized training should be provided to nurses to help them explore strategies of care for learning disabled individuals. Assisting in enabling inclusion and stressing on a holistic improvement of health and lifestyle of the individuals are areas of focus in nursing for such people. However as individuals with learning disabilities usually show auditory or speech difficulties, communicating with them effectively is a major challenge for nursing professionals and requires special skills and training. Communication is essential as according to legislative policies informed consent of the individual as to what treatment he should be subjected to and what his decisions are, lie as the primary focus of treatment. This is both an ethical and legal requirement that individuals with learning disabilities should be made aware and be allowed to express their opinions on any treatment or health care procedures (Eldridge, 2003).
In this article we discussed 6 learning outcomes related to the health care needs, definitions, legislative policies, social implications and challenges of individuals with learning disabilities.
Human Rights Act (1998)
Mental Deficiency Act (1913)
Mental Health Act (1959)
Department of Health (2001)
Valuing people: a new strategy for learning disability for the 21st century. London: The Stationery Office.
Disability Discrimination Act (1995) London: HMSO.
Scottish Executive (2002)
Promoting health, supporting inclusion.
Edinburgh: Stationery Office.
National Health Service and Community Care Act (1990)
Department of Health (1999)
Once a day. London: NHS Executive.
Signposts for success in commissioning and providing health services for people with learning disabilities. London: NHS Executive.
Caring for people: community care in the next decade and beyond. Cm.849. London: HMSO.
Social care for adults with learning disabilities. (Mental Handicap (LAC (92)15). London. HMSO.
Dunbar, I. (2003)
Inquiry under the fatal accidents and sudden death inquiry (Scotland) Act1976 into the death of James Mauchland. Sheriffdom of Tayside, Central and Fife at Dundee, Scotland.
Emerson, E.; Hatton, C.; Felce, D. and Murphy, G. (2001)
Learning disabilities: the fundamental facts.
The Foundation for People with Learning Disabilities. London.
Jenkins, R.; Mansell, I. and Northway, R. (2003)
Specialist learning disability services in the UK. In: Gates, B.
Learning disabilities: towards inclusion.
Edinburgh: Churchill Livingstone. pp349-367.
World Health Organization (1993)
Describing developmental disability. Guidelines for a multiaxial scheme for mental retardation (learning disability),
10th revision, Geneva: WHO.
Gates, B. (2000)
'Knowing: the importance of diagnosing learning disability.'
Journal of Learning Disabilities, 4(1) pp5-6.
Enable (7 Oct 2002) Adults with Incapacity Act (2000). Available at, http://www.enable.org.uk/ld/awi/
Also Adults with Incapacity (Scotland) Act (2000) London: HMSO.
Eldridge, P. (2003)
Ethics and research involving people with learning disabilities. In: Markwick, A. and Parrish, A. Learning disabilities: themes and perspectives. Edinburgh: Elsevier Science pp65-80.
Department of Health (2001) Valuing people: a new strategy for learning disability for the 21st century. London: The Stationery Office.
Hogenboom, M. (2001)
Living with genetic syndromes associated with intellectual disability.
London: Jessica Kingsley.
Scottish Executive (2000)
The same as you? A review of services for people with learning disabilities. Edinburgh: Scottish Executive.
Watson, D. (2003)
Causes and manifestations of learning disabilities. In: Gates, B. (ed) Learning disabilities: toward inclusion.
Edinburgh: Churchill Livingstone.
British Institute for Learning Disabilities
Department of Health
The Scottish Executive
National Health Service