Understanding Learning Disability
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A day session designed and delivered to a mental health organisation in Leeds in 2009
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Understanding Learning Disability
- 1. Understanding Learning Disability Day One
- 2. Introductions You Me Kaleidoscope Yorkshire
- 3. Your experiences What experience have you had working with people with Learning Disabilities?, what was your role? If no working experience, what experience have you had personally of Learning Disabilities (friends, family), in what way did you support the person/s?
- 4. Aim To provide an understanding, awareness and introductory insight surrounding Learning Disability
- 5. Day 1 - Objectives Define what we mean by Learning Disability Identify some facts relating to Learning Disability Examine the early warning signs Identify the signs and symptoms Consider how Learning Disabilities are diagnosed Describe the different types of Learning Disability Examine other associated conditions Discuss issues surrounding Learning Disability and Mental Health Identify issues relating to Learning Disability and ethnic origin, culture and age
- 6. What is a learning disability? ‘ Learning disability’ is an umbrella term covering many different intellectual disabilities. It means that a person’s capacity to learn is affected and that they may not learn things as quickly as other people. Sometimes a learning disability is called a learning difficulty , intellectual impairment or intellectual disability . Foundation for People with Learning Disabilities ( 2007 )
- 7. Cont…. “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."
- 8. Learning disability or learning difficulty??
- 9. Two important distinctions Specific General
- 10. Facts - Pub Quiz!
- 11. Question 1 Learning Disability is an illness – True Or False
- 12. Question 2 There are about ?? million people in the UK who have a learning disability 1 million 1.5 million 2 million
- 13. Question 3 It is estimated that there are how many people in the UK with severe learning disabilities? 150,000 – 230,000 230,000 – 350,000 350,000 – 500,000
- 14. Question 4 Males are more likely than females to have both severe learning disabilities and mild learning disabilities – True or False?
- 15. Question 5 The number of adults with learning disabilities aged over 60 is predicted to increase by 36% between 2001 and 2021 – True or False?
- 16. Question 6 How many people with learning disabilities live in care homes and hospitals? 39,500 50,000 65,500
- 17. Question 7 Less than 1 in 5 people with a learning disability work – True or False?
- 18. Question 8 What % of GPs have received no training to help them treat people with a learning disability. 50% 65% 75%
- 19. Question 9 Learning disability is a life long condition – True or False?
- 20. Question 10 People with learning disabilities do not normally suffer from mental health problems – True or False
- 21. Learning Disability and Mental Health Differences Learning Disability Noticeable at birth Evident in childhood and formative years General and more severe learning disabilities are lifelong and permanent General learning problems affect intellectual functioning Mental Health problems for people are not easily defined or discovered Lack of services How many people have Mental Health problems?
- 22. What are the early warning signs? Detectable at birth Spoken Language Written Language Arithmetic Reasoning Memory Visual and Auditory Motor Skills
- 23. What are the signs and symptoms? Poor performance Difficulty discriminating sizes, shapes and colours Difficulty with temporal concepts Poor visual / motor co-ordination Reversals in writing and reading Slowness in completing work General awkwardness Hyperactivity Poor organisational skills Difficulty with abstract reasoning / and or problem solving
- 24. Signs and Symptoms cont.. Poor short term or long term memory Impulsive behaviour Low tolerance and frustration Poor peer relationships Inappropriate, unselective, and often excessive display of affection Behaviour often inappropriate for situation Excessive variation in mood Difficulty concentrating Lack of hand preference or mixed dominance Difficulty making decisions
- 25. How are learning disabilities diagnosed?
- 26. Criteria IQ Social and adaptive dysfunction Early onset
- 27. Causes Before birth ( pre natal ) During birth ( peri natal ) After birth ( post natal )
- 28. Types of learning disability Common ( specific ) Learning ‘Difficulties’ Dyslexia Dysgraphia Dyscalculia Dyspraxia Non Verbal Learning Difficulty Problems with Audio Processing
- 29. Types of learning disability Syndromes and disorders – ‘general learning ‘disabilities’ Downs Syndrome William’s Syndrome Fragile X Syndrome Fetal Alcohol Spectrum Disorder Prader Wili Syndrome Klinefelter’s Syndrome Turner Syndrome Angelman Syndrome Smoking??
- 30. Types of Learning Disability Severe and Profound disabilities Rett Syndrome Batten’s Disease Tuberous Sclerosis
- 31. Types of learning disability Acquired Brain Impairment
- 32. Associated conditions Autism Asperger’s Syndrome ADHD Tourettes Cerebral Palsy Epilepsy
- 34. Learning Disability and Minority Ethnic Communities Prevalence Barriers of language Cultural Appropriateness Poor uptake of services Social disadvantage
- 35. Learning Disability and Age Life Expectancy Biological Factors Dementia Health and sensory decline
- 36. Quiz!! What have you learnt? – 10 questions
- 37. Homework! 3 most important things that you have learnt today and why……
- 38. Understanding Learning Disability Day Two
- 39. 3 things
- 40. Day 2 - Objectives Consider the social and health needs of people with Learning Disabilities Consider issues relating to communication Examine the difficulties people with Learning Disabilities face Identify ways of dealing with challenging behaviour Explore the approach of ‘Person Centred Planning’ Describe differing options for support Identify relevant legislation and good practice
- 41. The needs of people with a Learning Disability Social Needs Health Needs
- 42. Communication The way people communicate is made up of: Body language = ?% Tone of voice = ?% Words = ?%
- 43. Communication…..
- 44. What might people have difficulty with? Inability to read Difficulties with speech Using ‘jumbling’ words Inability to hear Inability to be able to understand Problems with expressing self Unable to write
- 45. Managing Challenging Behaviour Look for triggers Replacement skills Styles of interaction Distraction Withdrawal Environment Rewards Routine Boundaries
- 46. O’ Brien’s Five Accomplishments Community Presence: The right to take part in community life and to live and spend leisure time with other members of the community. Relationships: The right to experience valued relationships with non- disabled people. Choice: The right to make choices, both large and small, in one’s life. These include choices about where to live and with whom to live with.
- 47. Cont….. Competence: The right to learn new skills and participate in meaningful activities with whatever assistance is required. Respect: The right to be valued and not treated as a second-class citizen
- 48. Person Centred Planning What is it?? Video – Sabine
- 49. Person Centred Planning Methods Circle Of Support
- 50. Person Centred Planning MAPS
- 51. Person Centred Planning PATH
- 52. Case Study Jason Circle of Support
- 53. Options for Support Advocacy Money and Finance Welfare Rights Transport Day Services Support at home Accommodation Short Breaks / Respite Employment Education
- 54. Legislation and good practice
- 57. Other relevant Legislation Care Standards Act ( 2000 ) Carers and Disabled Children Act ( 2000 ) Human Rights Act ( 1998 ) Disability Discrimination Act ( 1995 ) NHS and Community Care Act ( 1990 ) What about Mental Capacity??
Notes de l'éditeur
- Day 2 will be presented and lead by Jillian Addison, Jillian has a background in person centred planning and learning disabilities so the focus of the 2 nd day will be looking chiefly at this.
- What we need to do is to define what we mean by Learning Disability……. small groups I would like you to work together to establish a sentence describing what a Learning Disability is…not a list, but a sentence, that’s a little bit harder - FLIPCHART
- That last description is rather vague!.....In 1995, the Department of Health defined a learning disability as….
- Just a question, and it could just be a question of terminology and usage When we look at the definition of a difficulty we might say it is something not easily done, accomplished, comprehended, or solved, something which requires some effort to get over but we manage to overcome nonetheless, in terms of disability, we might say it is a condition of being unable to perform something, physically and / or intellectually resulting from some form of impairment. Some would say that the word learning disability is in itself negative in its usage, however, both words we will use today as they are both interchangeable, but what we should remember, people are people as individuals before their disabilities or difficulties – For the purpose of the 2 days we should feel ok to use both, if that’s something agreeable by all?.
- There are two distinctions we also need to make, there are two main categories of learning difficulties or disabilities….reveal and then ask. In brief, and we will come back to this, General learning disability is different from specific learning difficulty , specific learning disability means that the person has difficulties in one or two areas of their learning, but manages well in other areas of their development. For example, a child can have a specific learning difficulty in reading, writing or understanding what is said to them, but have no problem with learning skills in other areas of life, so give me an example?? – dsylexia Now some organisations, rule out discussion of what we refer to as ‘specific’ learning disabilities, these are the most common problems and are often referred to as ‘difficulties’ as opposed to disability – why?, well, because these more common problems do not mean the person is ‘ intellectually impaired’ but such individuals do have specific difficulties with learning. A general learning disability means the person finds it much more difficult to learn, understand and do things compared to others. Such conditions are much more permenant, life long and persistent affecting social development, speech and language. General learning disabilities are usually moderate to severe and in some cases quite profound and wit multiple complexities. It is likely that the people you will be working alongside will have moderate general learning problems, with some specific issues.
- Pub Quiz – Teams – 15 questions all related to Learning Disability, work in teams of 3 / 4, I am the pub quiz master and I will read out each question as we go….and then after the quiz we will swap answer sheets and mark them fairly after which we there will be prizes…ok, so on your sheets give your team a name….
- False - A learning disability is not an illness. Some people with a learning disability also experience mental health problems such as depression, but they are not the same thing, people also suffer from a variety of physical conditions, but the learning aspect of a persons difficulty is not an illness -people with a learning disability can and do learn and develop with the right sorts of support from other people.
- Its 1.5 million - This is about 3 in 100, It is estimated. This figure is increasing, Lets just look at England, 985,000 people in England have a learning disability (less than 2 per cent of the population) with 796,000 of them are over 20 years of age.
- 230,000 – 350,000
- True - With severe It is (average ratio 1.2 males: 1 female), with mild it is (average ratio 1.6 males: 1 female). Some research in the USA showed generally that more boys ( 1:16 ) had learning disabilities than girls, other studies in other countries show much smaller ratio. One piece of research I read recently suggested that no discrepancy with ratio existed at all. Some researchers propose psychological and social causes and slower development generally in boys ( esp with regard to mild learning disabilities, specific problems ) most other research is concerned with the differences in brain chemistry and/or to hormones.
- True – Why??? - increased life expectancy, especially among people with Down’s syndrome growing numbers of children and young people with complex and multiple disabilities who now survive into adulthood are just 2 possible explanations
- 39,500 - This is about a third of all the people in touch with learning disability services. About 11,000 of these people live ‘out of area’, that is away from their home area, this was in the Valuing People document from 2005, this figure will have changed, we aretalking about 5 years now. The remaining people will be living with families or living independently and in their own tenancies with support from varying services.
- True - Compared with 1 in 2 disabled people generally, but we know that at least 65% of people with a learning disability want to work. Of those people with a learning disability that do work, most only work part time and are low paid. Just 1 in 3 people with a learning disability take part in some form of education or training.
- Its actually 75%, worrying statistic, In 2002 the Uni of Birmingham commisoned a study which also describes GP’s as having insufficient awareness, and also there was found to be a negative attitudes to the health needs of people with LD, worrying as many people with learning disabilities tend to have a variety of health related needs. As good health is vital to achieving social inclusion and independent living, it is imperative that people with learning disabilities receive adequate healthcare support.
- True - Learning disabilities can be lifelong conditions. In some people, several overlapping learning disabilities may be apparent. Other people may have a single, isolated learning problem that has little impact on their lives.
- False - 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 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.
- Ok, that last question was about Mental Health – we talked about how people with a learning disability can also have a mental health difficulty, Group exercise – ok, lets just look at what we think are the major differences between LD and MH. Some learning disabilities will be noticable at birth, particualry some general learning disabilities Diagnosis and support generally is much later for people with MH problems Many MH problems are overcome and people tend to live routine and normal lives, although admittedly there are some very serious more debilitating conditions, such as Schizophrenia. Generally speaking it would be true to say that mental health problems do not impair a person’s intellectual functioning. People with LD can and do suffer from mental health problems, the problem is to define, discover and diagnose is difficult, some people do not have the language skills to convey their distress, and some behaviour can be seen as tied up with the LD when it might be mental suffering, the more severe the LD the harder it is to make these distinctions. Services for people with MH problems are numerous, as they are for people with LD, services for people with MH and LD and particularly more severe conditions are few and far between – later in the training we will cover support and services available etc. ?????? – in terms of percentage?? – Its about 11 – 12%. Problems?? – Depression, Bi Polar, Anxiety, some Psychotic disorders. We don’t need to go on about the differences between LD and Mental Health, along the way we have established that LD is very very different, however the two do still get mixed up, why?, might just be a lack of knowledge and understanding and awareness, its not so long ago that we might have heard words such as ‘mental retardation’ also, in the past Mental Handicap was a term used to describe people with LD, this might explain why we still hear the confusion, also, we still have MENCAP, they are a very good organisation but they are called MENCAP, so he word in a sense is still in popular usage.
- When we talk about early warning signs we are maybe looking at the warning signs that we might see in children as they develop, not essentially, but its more than likely things will be picked up in formative years. There are normally 8 general areas affected by learning disabilities – what do you think these areas might be? 8 main areas: Detectable at birth: There are some obvious signs at birth, physical features, Downs Syndrome, Fragile X and Cerebral Palsy etc. Spoken language : communication by word of mouth, delays, disorders, and deviations in listening and speaking. Written language : communication by means of written symbols (either printed or handwritten) difficulties with reading, writing and spelling. Arithmetic : difficulty in performing arithmetic operations or in understanding basic concepts, for example, subtraction, multiplication, and division. Reasoning : difficulty in organizing and integrating thoughts, difficulty with the process of drawing conclusions from facts, evidence, lack of coherence and logic. Memory : difficulty in recalling and remembering information and instructions Visual and Auditory – Spatial problems and orientation (eg, finding objects, spatial memory, awareness of position and place), visual attention and memory, being able to discriminate with sound etc. Motor Skills – Gross – Walking, Standing, pulling self up, Fine – grasping and moving fingers and toes for example.
- Ok, now we are moving on to signs and symptoms generally, these may fit in the I would like you to work in small groups and list differing symptoms, now here we can really broaden out in more detail what the signs and symptoms might be. Poor performance – might be related to tests, exams, on going assessments whilst at school, may well be an indicator. Discriminating sizes, shapes and colours Difficulty with temporal concepts – in this sense we are meaning ‘time’ Poor visual / motor co-ordination - Being able to coordinate vision with the movement of the body, in other words??. Hand-eye coordination. Reversals in writing and reading - Letter reversals include confusing letters like b and d, either when reading or when writing . Number reversals include writing ε instead of 3, might be a sign of what? – Dsylexia or might just be a sign of reading problems that can eb overcome. Slowness… General awakrdness – bit vague, what do we mean? – difficulty with managing and holding something, lacking dexterity, possible clumsiness. Hyperactivity – Having abnormally high levels of activity or excitement that interferes with the ability to concentrate or interact with others. Poor organisational skills – difficulty co-ordinating things, bringing things into structure, putting things in order. Difficulty with abstract reasoning etc – difficulty in thinking, bringing information together information, inabilty to focus on solving a problem
- Memory Impulsive behaviour -beahviour characterized by actions based on sudden desires, whims, or inclinations rather than careful thought, such impulsive acts as hugging strangers; impulsive generosity Tolerance and frustration Poor peer relationships Behaviour – might includes comments, advances, inappropriate touching, emotional outburst, over reaction etc Excessive variation in mood – maybe rapid or extreme changes Difficulty concentrating – for example, having the inability to focus. Mixed dominance - Cross-dominance , also known as mixed- handedness , mixed dominance , or hand-confusion , is a motor skill where a person uses one hand for some tasks and the other hand for others. For example, a cross-dominant person might write with the right hand but throw primarily with the left. Often called what? Ambidexterity Difficulty making descions – Inability to make up mind about soemthing, or not having that cognitive process available. When considering these symptoms, it is important to remain mindful of the following: No one will have all these symptoms. Among people with LD some symptoms are more common than others. All people have at least two or three of these problems to some degree. The number of symptoms seen in a particular person does not give an indication as whether the disability is mild or severe.
- Diagnosing a learning disability can be difficult, and in some cases it isn't clear what the learning disability is or why it happened. Some learning disabilities are discovered at birth and others are not diagnosed until much later. The extent of some disabilities become clearer as individuals reach the ages when they should be talking, walking or reading. Most learning disabilities are obvious by the age of five . “Intellectual function (also known as cognitive ability) can only be assessed by testing children from the age of five, so most children with these disabilities are only diagnosed when they start school. Even after a diagnosis is made, it can be hard to tell how it will affect the person in the future. In a lot of cases the criteria is as follows….
- Does anyone want to guess at the criteria that might be used? Who might make a diagnosis? Learning disabilities are often identified by school psychologists, clinical psychologists, and neuropsychologists through a combination of intelligence testing, academic achievement testing, classroom performance, and social interaction and aptitude. Other areas of assessment may include perception, cognition, memory, attention, and language abilities. IQ - One way to establish the ‘degree’ of learning disability is to use the measure of IQ. This measure suggests that people with an IQ of less than 20 will be described as having a profound disability , those with an IQ of 20 – 50, a severe learning disability , and 50-70, a moderate or mild learning disability. However, knowing the degree of intellectual impairment a person has tells you very little about who they are and the kind of help and support they might need. The way people’s disabilities impact on their lives will vary, and affect the nature of the support they might need. Social and adaptive dsyfunction – what does this mean?, a myriad of things, skills in eating, drinking and keeping safe and warm, social understanding, communication, learning and remembering new things, any assessment of this should take into acount what type of things??, context within which the person is living, including personal and family circumstances, age, gender, culture and religion. Early Onset - The third criterion is that these impairments can be identified in the developmental period of life, they are present from childhood not acquired later in life etc, although it is important to note that if someone has a brain injury acquired later in life the person could develop problems associated to cognition aswell as possible areas of learning and behavioural difficulties.
- Split into groups: Flipchart: suggest as many causes as you can that maybe happening before birth, during and after……… Ok, so have some possible causes!!! – spider graph – flipchart! Before birth - These are known as 'congenital' causes = meaning? - Congenital disorders involves defects in or damage to a developing fetus. It may be the result of genetic abnormalities, one example is: Down syndrome, we will come on to types next! . Also, research shows that a mother's use of cigarettes, alcohol, or other drugs during pregnancy may have damaging effects on the unborn child, also toxoplasmosis (infection caused by parasites transmitted to humans from infected cats; if contracted by a pregnant woman it can result in serious damage to the fetus ). In terms of specific LD, ‘primary’ dyslexia is genetic and hereditary, it involves damage to the left side of the brain (cerebral cortex) , "secondary" or "developmental dyslexia“, for example, is felt to be caused by hormonal development during the early stages of foetal development During birth - For example oxygen deprivation, what is called Hypoxia, resulting in ??? cerebral palsy. Premature birth has also being linked to specific learning disabilities , particually in relation to cognitive development, intraventricular/periventricular hemorrhages at birth resulting in long term motor ( movement ) problems and long term disability. After birth - llnesses, injury or environmental conditions,some childhood infections can affect the brain, causing learning disability; the most common of these are encephalitis ( acute inflammation of the brain ) and meningitis (inflammation of the protective membranes covering the brain and spinal cord ) can be prevented by immunisation, brain injury or children being deprived attention to their basic needs, poor housing and environment, lack of stimulation, undernourished, neglected or physically abused.
- Here are some cards, there are five headings and five descriptions, have a read of these and then match each up….maybe words you haven't heard of, but we will cover these in a moment. DYS – meaning Bad or wrong from the Greek. Dsylexia - The most common specific learning disability,it is a neurological problem possibly connected to vision and hearing and not a intellectual one, 70%-80% of people with dsylexia have deficits in reading. Dsylexia can affect any part of the reading process, including difficulty with accurate and/or fluent word recognition, word decoding, reading rate,oral reading with expression, and reading comprehension. It can co-exist with all of what is to follow in this list. In terms of specific LD, ‘primary’ dyslexia is genetic and hereditary, it involves damage to the left side of the brain (cerebral cortex) , "secondary" or "developmental dyslexia“, for example, is felt to be caused by hormonal development during the early stages of foetal development Dsygraphia - is a deficiency in the ability to write , regardless of the ability to read , not due to intellectual impairment , people often lack other fine motor skills, they can also lack basic grammar and spelling skills (for example, having difficulties with the letters p, q, b, and d), and often will write the wrong word when trying to formulate thoughts (on paper). People with this problem may also have ADHD, Autism or Tourettes Syndrome. Dsycalculia - A maths disability can cause such difficulties as learning maths concepts (such as quantity, place value, and time), difficulty memorizing maths facts, difficulty organizing numbers, and understanding how problems are organized on the page. Dsypraxia - an impairment of movement. The brain processes information, but messages are not being properly or fully transmitted. The term dyspraxia comes from the word praxis, which means 'doing, acting'. Dyspraxia affects the planning of what to do and how to do it. It is associated with problems of perception, language and thought. Non Verbal – For example, motor clumsiness, poor visual-spatial skills, problematic social relationships, difficulty with maths, and poor organizational skills. These individuals often have specific strengths in the verbal domains, including early speech, large vocabulary and early reading and spelling skills. Audio processing - Difficulties processing auditory information include difficulty comprehending more than one task at a time and a relatively stronger ability to learn visually.
- Ok, same thing, but a little bit different, on these sheets are descriptions of various types of learning disability syndromes and disorders… In pairs, I would like you to come up and read these descriptions, discuss which disorders / conditions might match up and stick these on the bottom of the page/s…. You may not know some of these, there maybe some clues within the descriptions though. Smoking : Just some info on smoking, pneumonia, ear, nose, and throat problems, sinus issues, bronchitis, asthma, and lung diseases, second hand smoke etc are all known problems, the interesting thing here is children who have frequent illnesses and infections affecting their ears and sinuses are more likely to experience delays in language development, impaired early reading skills, and other learning disorders. This can lead to learning disabilities in reading and writing.
- Also referred to as multiple learning disabilities , often in the past referred to as ‘complex ’ or ‘ high support ’ needs, but commonly not referred to as these as these terms are quite vague and non specific, people with such problems have severe diffifculties with learning, communication and physical health needs. Rett Syndrome : This is classified on the Autistic Spectrum Disorder, we will touch on autism in a short while, features include small hands and feet, small head, gastrointestinal problems are common and up to 80% of people have seizures. Individuals suffer from sensory problems, speech problems,co-ordination,balance and social and emotional difficulties, cerebral palsy features and anti social beahviour. The signs are easily confused with those of Angelman syndrome , cerebral palsy and autism . It is caused by a genetic mutation on the male X chromosome and is more common in females. Child development is normal until 6 – 18 months, after which there are problems associated to what we have highlighted. Batten’s Disease – This is a rare genetic condition which begins in childhood, around the ages of 4 – 10, features include, poor circulation in lower extremities decreased body fat and muscle mass, curvature of the spine, hyperventilation , seizures, loss of sight, speech and motor skills, it is a life limiting condition. Tuberous Sclerosis -A genetic condition that causes benign tumours to grow in the brain and on other vital organs such as the kidneys , heart, eyes, lungs, and skin, other symptoms include seizures, developmental delay and behavioral problems. About 50% of people have learning difficulties ranging from mild to significant, and studies have reported that between 25% and 61% of affected individuals meet the diagnostic criteria for autism, OCD and ADHD can also be present.
- There is another point we need to make…and we have already covered a condition which has similar symptoms ( Prader Willi )..there are aspects of learning within this but it is not considered a learning disability, nor is it considered a mental health problem or a problem associated with dementia, although there maybe elements which are characteristic of both…. anyone???? Acquired Brain Impairment - The name given to damage done to the brain which has happened sometime after birth, for example??, Head injury (car accident, falling over, assault), alchol and drug abuse, stroke, Infections (meningitis, HIV), tumours, Lack of oxygen (near drowning, drug overdoses) There is normally some degree of cognitive impairment, mild, moderate and more serious, co-ordination, balance, vision etc, also it can cause problems with the way we think and remember things. It can also affect the way we feel, behave and how we get along with people.
- Exercise – On these sheets are 6 associated conditions, within themselves they are not classed as learning disabilities per se , however, a number of people with LD do have some of these associated conditions, it would be ignorant of us not to examine these a little. What I would
- http://www.youtube.com/watch?v=FgMKGIED4Yo Ok, a lot of these syndromes talk about chromosomal abnormalities, what is a chromosome? - basically, components in a cell that contain genetic information, "humans have 22 chromosome pairs plus two sex chromosomes“, unless of course there is an abnormality, I don’t want to particualarly dwell on the scientific stuff here but I did find a short 1,30 min video which I think covers the basics in terms of process of how an abnormality occurs….when you watching this I want you to make a note of the words because at the end of today there will be a quiz and there MIGHT be a question in there..!!!! CHROMOSOMAL ABNORMALITIES Deletion – A part of the chromosome is missing or deleted Duplication – A portion of the chromosome is duplicated Invertion – A portion of the chromosome breaks off , turns upside down and reattaches Insertion – A portion of the chromosome breaks off and attaches to another chromosome Translocation – Segments from 2 different chromosomes are exchanged.
- What might be the kind of difficulties people might be facing??. Flipchart exercise Prevalence - The prevalence of severe learning disabilities amongst UK South Asian communities may be up to three times higher than the general population. Many experience disadvantage and discrimination in terms of housing, education, employment, physical and mental health and access to services - Barriers of language – May well be more prevalent for people who have recently come to the country, particualrly when people are struggling to meet their basic needs and adjust to a different and often bewildering culture. Cultural appropriateness – Services may not be taking into account the need for cultural appropriateness. Religion is a major component of culture and could block access to assistance if services are offered in an insensitive way, negative stereotyping does exist!. Poor uptake of services – Some communities do not take up services as much as others, this can magnify problems. One recent study found that three-fourths of the learning disabled from ethnic minority groups were going without any support whatsoever. Social disadvantage - The learning disabled from ethnic minority communities find themselves at a significant social disadvantage. The prevalence of learning disabilities has been linked to socio-economic deprivation. Simply put, poverty and learning difficulties tend to go hand-in-hand.
- Life Exp - Advances in medical and social care have led to a significant increase in the life expectancy of people with learning disabilities. This means and services will need to develop and grow in order to support them, this is a huge task particualrly as people with LD are such a broad group of people with differing abilities and needs, and there are many different issues that need to be considered. Biological Factors - The biological aspects of ageing may differ for people with a learning disability in a number of respects. For example, some people such as people with Down’s syndrome show signs of ageing in their 30s – research is showing that most adults with a learning disability who live past the third decade are likely to live into old age. Dementia - A number of different types of dementia exist but the most significant and prevalent is Alzheimer’s disease. Research indicates that people with Down’s syndrome exhibit neurological changes resulting from Alzheimer’s type dementia at a much younger age than others, and in addition virtually all people with Down syndrome who live long enough will develop this type of dementia. Health and Sensory decline – It is positive that people are living longer, but this does present problems with peoples needs. It is inevitable that as people live longer they are more likely to become exposed to and develop older-age related health problems .These health problems are similar to those experienced by other older people in society However, people with a learning disability may develop what is known as ‘ syndrome-specific ’ conditions, Prader Willi – diabetes and heart problems, Fragile X – musular problems, early menopause and epilepsy. Other health related needs specific to older people with a learning disability are damage to the central nervous system damage which can lead to increased vulnerability to conditions such as: epilepsy, cerebral palsy, and some forms of visual impairment.
- First of all, what is Challenging Behaviour? – why might say its behaviour which breaks fundamental social rules, ie that it is wrong to hurt others, hurt one's self, destroy property or otherwise disrupt other people's lives. There are many reasons why someone might exhibit these kinds of behaviours including frustration, conflict with others, lack of significant relationships or a history of inappropriately learned behaviours. The fact that a person shows challenging behaviour carries no implication that they have a psychiatric problem. This is probably the case for the majority of these individuals. However, some people do have both types of problem as we have already suggested. It is very complex. It is often difficult to know whether the challenging behaviour is occurring partly because of mental distress, or whether the challenging behaviour has completely different causes, perhaps relating to problems in the person's current environment. In Day 2 we will look at ways of supporting people with challenging problems.
- 12 quick questions……
- Try and complete for tomorrow and that will be our first point of discussion in the morning
- Yesterday you were given the task of stating what you felt were the 3 most important things from the 1 st day session and why…..so what did people put down ( ask for some feedback from a few people ).
- What are the needs??? - These maybe general or there might be more specific in terms of condition or difficulty. Split into pairs and discuss. But not just what, why??? Social Needs – Education. Employment, relationships, leisure, hobbies, advocacy, housing, information on services, dietary, help with mental health needs, physical needs – adpaptions, equipment, access. Health related Needs – Access and Multi-disciplinary assessment and care can help reduce the effects of physical disability and improve quality of life. Help with hearing, sight ( sensory impairments ), about forty per cent of people with learning disabilities have moderate or severe hearing loss. Hearing problems are particularly common among people with Down’s syndrome and occur more frequently as people grow older. Surveys suggest that up to one third of people with learning disabilities may be affected by epilepsy, regular assessment and appropriate treatment are therefore essential.
- Give out piece of paper with body language, tone and words. Couple of mins to fill in. Discuss the importance of tone and body language, non verbal processes etc. Many people with LD have difficulties with communication, a range of 50% - 90%. Communication is the means through which we control our existence. It is the way we make friends and build relationships. It is the way we become independent and make choices. It is the way we learn. It is the way we express our feelings, thoughts and emotions. It is the way we make sense of the world around us. Perhaps the simplest way of thinking about communication is that it is the passing on of information from one person to another using any means possible. Everyone can communicate and everyone is an individual in the way they communicate . Body Language – 55% Tone of Voice – 38% Words – 7%
- Ok, I would like us to work in small groups, now, imagine that I am coming to your organisation to work in your team, I am a front line worker, and I haven't worked with your client group previously, I would like you to suggest for some top tips for how I might communicate with individuals you work with, put an emphasis on the fact that people will have a learning disability.
- Leading on from what we know and understand about communication, How would you feel in these situations? – brief sentence in pairs and feedback. Give out sheets to complete, can do this as pairs or one group
- The goal of prevention is a worthwhile but elusive one. Where challenging behaviour arises from a medical condition, a sensory impairment or similar, the more such conditions can be remedied the better. On an everyday basis carers, parents and teachers can try to ensure that the person has what they need when they need it - help, attention, food, drink, preferred activities and so on. It is very important, however, that people are also given the opportunities and the skills to get things for themselves or to ask for them rather than their always being available "on a plate". Without the opportunities of exerting such control people with learning disabilities will be in much poorer positions when they get in to situations (as they inevitably will) where they are expected to fend for themselves and speak up for themselves rather more. One of' the keys to prevention (and also to treatment) is therefore to emphasise the development of communication and independence. If prevention has failed, early intervention is the next best thing…. what things might help in managing challenging behaviour – small groups to discuss Looking for triggers (antecedent control strategies) : Being aware of the potential triggers for challenging behaviour can be the first step in reducing the behaviour, the vast majority of triggers are modifiable to a greater or lesser degree. Knowing what the triggers are can help you to avoid them, or introduce the person to them in a more gradual way. Teaching replacement skills (functional equivalents) : Teaching someone to use a specific sign to ask for something, or to indicate that they have had enough of an activity, can help to reduce challenging behaviour because it provides the individual with an alternative to using challenging behaviour. Interaction styles : The style used to communicate with a person can be very important. It can be helpful to use a particular interaction style at certain times for example, consistently being calm, firm, humorous or praising may help to reduce challenging behaviour. Distraction - can be a good way to diffuse challenging behaviour. Examples of distraction might include the use of humour, the offer of a preferred object or activity, or even a change of face. Withdrawal : Depending on your circumstances, withdrawing yourself from the situation (e.g., leaving the room), may be the safest option, and it may even help the person to calm down quicker than if you were there. Changing the environment : Environmental change can reduce the impact of incidents when they do occur. For example, if somebody throws objects you can limit the number of objects that can be thrown and ensure that the available objects are less likely to cause injury. If somebody pulls hair you can tie your hair back or wear a hat. If somebody breaks windows you can have toughened glass fitted. Rewards : Rewarding people’s good behaviour through the use of praise or having an object that they like. Routine and structure : For people with severe learning disabilities, who may have very limited concepts of time, and great difficulties adapting to change, routine can be extremely important. A predictable routine can minimise the potential for unnecessary anxiety and associated challenging behaviour. Boundaries : It is important that people are helped to distinguish between culturally acceptable and unacceptable behaviour. For example, someone may need help to learn that shaking hands is okay, but hugging people is not; masturbating in their bedroom is okay, but not in public; and taking food from other people’s plates is not acceptable.
- John O Brien established Five Essential Service Accomplishments which were aimed at focusing and guiding service staff in their work. Each accomplishment supports what is considered to be a vital aspect of human experience which common practice often limits for people with severe disabilities. Each accomplishment recognises the interdependence that exists between individuals, and challenges and strengthens the relationship between people with disabilities and other community members. The aim was to ensure that a human service programme, focused on community participation, would assist people with severe disabilities to form and maintain the variety of ties and connections that constitute community life. It was O’ Brien and colleagues beginning in the 1980’s who lead the way for what is known as what??...................Person Centred Planning ……..
- These are quite broad sweeping things, quite idealistic, which begs the question how would a person realise these??....now in Mental Health we do have, or we should have, assessments, support plans, individual programmes etc, we tend to focus on models from a recovery perspective in learning disabilty this is seen through PERSON CENTRED PLANNING, its this planning approach that we will spend the majority of the afternoon discussing
- http://www.youtube.com/watch?v=Js3vVaTHbmU&feature=related http://www.youtube.com/watch?v=pTl7Rvdi-_g&feature=related Just a few minutes, in pairs….just on paper that you have jot a few ideas down about you know or what you believe PCP to be Person centred planning (PCP) and approaches was an important part of the government’s plans in Valuing People (2001) for people with learning disabilities ( we will revisit this legislation later ) Person centred planning is a way of supporting people to work out what they want, the support they need and helping them get it. It involves continual listening, learning and Action and helps the person get what they want out of life. Being 'person centred' or using a 'person centred approach' means making sure that everything we do is based upon what is important to a person from their own perspective. Person centred planning discovers and acts on what is important to a person.
- http://www.youtube.com/watch?v=A3osS0gmP0I&feature=related Circle of Support is a tool used to gather a supportive community around the person with a disability. The circle of support is meant to establish meaningful committed relationships with the focus person. The circle is developed by defining four concentric circles. The first circle is the circle of intimacy and includes the people most intimate in the focus person’s life. The second circle, the circle of friendship, includes good friends and close relatives. The third circle, the circle of participation includes the people and organizations the focus person is involved with. The fourth circle is the circle of exchange and includes those that are paid to be in the focus person’s life. The circle of friends provides a very important support network for the focus person. The group meets regularly to celebrate successes and discuss problems and brainstorm solutions. When a naturally formed circle of friends is non-existent, as is often the case for people with severe disabilities, professionals and carers can facilitate the development of a circle. Falvey 1994
- http://www.youtube.com/watch?v=U5uRV5chkwQ&feature=related MAPS, does stand for something…anyone want to have a guess? - Making Action Plans or MAPS is a tool to assist the person with disabilities, their family and friends in gathering information that can be used to generate a plan of action for moving the focus person into their future. There are 8 key questions that are part of the MAP process, which include: What is a MAP?; What is the person’s history?; What is their dream?; What is their nightmare?; Who is the person?; What are the person’s gifts or strengths?; What are the person’s needs?; and What is the best plan of action to obtain the dream and avoid the nightmare? (Falvey et al., 1994). Falvey 1994
- PATH or Planning Alternative Tomorrows with Hope is an extension of the MAPS process. PATH makes use of the important information gathered during the MAP and develops a more definitive plan of action. PATH addresses both long and short term planning. Through the 8 step process the dream is defined, then a positive and possible goal is set for within 6 months to a year. Once the dream and goals are agreed upon, action plans are developed and people are asked to enroll or volunteer to be of support. First steps are decided upon, as well as steps to be accomplished by specific dates in the near future. Again, the PATH is a collaborative process that develops a concrete plan of action for the person with disabilities and those closest to them. Falvey 1994
- Now we are going to have a bit of roleplay!.....the decisions made in the Circles of Support would inform the MAP and the PATH process. My name is Jason, I am 23 years old. I have Down’s Syndrome. I don’t think its held me back like many people might think. I went to mainstream schools, I did experience some bullying but it didn’t make me so upset that it stopped me doing things I want to do. I love being around other people and making loads of friends. My family are great too, I have a sister and a brother who are older than me and I still see them quite a bit. When I left school I did a couple of college courses and did well, I felt good about myself but I would like to do more. I am interested in lots of things, I like to make things, especially models of boats, I love to play Pool and I go to watch Football with my brother as often as I can. Last year I moved into a flat and with support on a daily basis I live independently. I am still unsure about a lot of things and I have lots to learn, but I think I have made a good start. I do some voluntary work helping out in an arts and crafts shop 2 days a week, I need some other other things to fill my week though, one day I’d like a job where I might get paid, I would really like to have a girlfriend too!.
- What do you know of that might be available??????? – small group exercise, flipchart on on paper in pairs. Advocacy – Helping people to speak out, have a voice etc. Money – Adult social care services can help people access these, direct payments are given directly to people to arrange their own care. Welfare Rights – Each area has a number of organisations who can help with welfare issues, e.g. benefit and debt advice, CAB, Disability Rights groups etc. Transport – e.g accessing funding for community transport to day services for example, bus passes and vouchers, disabled peoples parking. Day Services – These can provide health and lifestyle advice and groups, leisure and social activities, social groups and events, Valuing People set out to make a 5 year plan to modernise day services, this meant changing the way services were being provided to enable people to become more independent and involved in community based activities such as college courses, leisure facilities and opportunities for gaining employment experience – impact? Support at home - essential daily tasks,cooking, shopping,cleaning, personal care, might be statutory or voluntary service providing this, meals services, info and access to adapatations and daily living equipment, community support – helping people access ordinary community facilities. Accommodation – Residential homes, supported living, suppported housing, will be a combination of Short Breaks / Respite – Number of options, residential short breaks, social and leisure breaks, adult placement ( person goes to live with another family for a short time ), home based breaks ( carers ). Employment – Different areas will provide differing services aimed at finding paid work, accessing vol work – Remploy, Shaw Trust etc. Education – Could include a number of options, adult learning, further and higher education, residential colleges in some areas, vocational and educational placements, also educational psychology services may exist.
- The most important piece of legislation for people with LD is what????, …. Valuing People - Valuing People - A New Strategy for Learning Disability for the 21st Century , it outlines the developments that should be prioritised in order to improve the life chances and opportunities for people with learning disabilities. Valuing People' focuses throughout its content on the importance of being person-centred in everything we do. One of the crucial ways in which we can do this is by closer partnership working – in this respect we are talking about health and social care services working more closely together. There are 11 objectives, the first objective relates to Children, The other 10 are what we can look at in brief, heres the handout
- Of course 2001 is way way back!!, so, in 2009, I would like to have copied the summary for you, however, even that is 16 pages long, so here is a very condensed version as a flavour of what it includes etc……
- Care Standards Act - The National Care Standards Commission arose from this act and they took over the responsibility for the registration and inspection of services from local authority departments. Services were inspected against a national standard with sanctions being imposed on those providers who did not meet the necessary criteria. The National Care Standards Commission was replaced in April 2004 by the Commission for Social Care Inspection and the Commission for Healthcare Audit and Inspection. Carers etc - Young disabled people aged 16 and 17 became eligible to receive direct payments to purchase their own care support. Carers are also given the right to be assessed and for this to be taken into consideration when supplying services to a disabled person. Human Rights - This legislation adopted the European Convention on Human Rights into British law when it came into force in October 2000. DDA - The Disability Discrimination Act gives rights to disabled people to prevent discrimination on the grounds of disability. It is unlawful to discriminate in relation to employment, the provision of goods and services, the management, buying or renting of land or property, education and transport. CCA – Massive piece of legislation - The act was brought in to promote community care. Local social service departments have an overall responsibility for community care and have to publish a regular plan about how this care will be delivered. The responsibility places a duty on authorities to assess people for social care and provide the support they require. The act established the familiar procedures of 'care management' (social services) or 'care programme approach' (NHS) which the statutory departments now operate to – it also looked at care being provided by independent, private and voluntary sectors. Mental Capacity - The Mental Capacity Act came into force in October 2007. It protects people who cannot make decisions for themselves due to a learning disability or a mental health condition, or for any other reason. It provides clear guidelines for carers and professionals about who can take decisions in which situations. A person's capacity to make a decision will be established at the time that a decision needs to be made. The Act intends to protect people who lose the capacity to make their own decisions. Specifically, it: allows the person, while they are able to do so, to appoint someone to make decisions on their behalf once they lose the ability to do so themselves, provides a checklist for decision makers and introduces a Code of Practice for people such as healthcare workers who support people who have lost the capacity to make their own decisions.
- Miss this out if you want to!!! John O Brien established Five Essential Service Accomplishments