Week 6 Flashcards
Lexicon
Mental retardation
Intellectual disability. Current international term
Learning disability. Official UK term. Designates specific learning difficulty in many countries
Learning difficulty used by educational services in UK probably preferred by people with LD
Mental impairment legal term used differently in the DDA and the mental health acts
WHO definition
Intellectual disability means a significantly reduced ability to understand new or complex information and to learn and apply new skills (impaired intelligence). This results in a reduced ability to cope independently (impaired social functioning) and begins before adulthood with a lasting effect on development
Definition summarised
General impairment of intellectual functioning
Consequences in terms of severe impairment of social functioning
Onset before physical maturity
Therefore excludes people who develop cognitive impairments in adult life and people with specific impairments such as dyslexia
Measurement: IQ tests
Developed to identify children who needed special educational help. Includes questions measuring a range of intellectual skills and knowledge summed and weighted to give a composite score. Scores standardised with 100 as population mean
Soon reified as supposed measure of innate and fixed ability and used to identify those deemed incapable of education and to rank sexes and ‘races’
IQ grades
Mild. IQ 50-70 holds conversations full independence in self care basic literacy
Moderate IQ 35-50 limited language needs supervision in self care usually fully mobile
Severe IQ 20-35 uses words/gestures for basic needs activities need to be supervised marked motor impairment likely
Profound. IQ less than 20 very limited words gestures or none. Severely limited mobility. Incontinent
Grades are not discrete groups and assessment should take account of sensory impairment
Four grade system often modified eg into mild and severe. Term ‘profound and multiple learning disability’ used in UK. Also ‘borderline LD’ for people with significant social impairments
Problems with IQ tests
Measure narrow range of skills results do not always reflect how someone copes in everyday life
Under-performance subject may not understand why test is used may have additional disabilities which affect score
Invalid application IQ tests not designed for or standardised on people with LD who may have very uneven balance of strengths and weaknesses
Measurement: adaptive behaviour
Adaptive behaviour scales (Vineland ABS etc) measure skills in daily living by checklists, interviews with carers and observations in activities such as self help basic academic skills, communication mobility everyday coping skills and social competence
Generate a series of rating scales rather than an overall score
Use measurement to
Identify areas in which people most need help to learn and achieve use multiple measures to get a profile of strengths and weaknesses
Measure changes in performance over time and as a result of therapeutic action
Identify eligibility for specific services for disabled people or where there is a risk of mistreatment (eg in criminal proceedings)
Problems with AB scales
Ignore extent of support from a carer or whether communication aids available
May be variability in performance between settings (transferability problem)
Include assumptions about activities appropriate to a particular culture
Poor performance may indicate lack of opportunity rather than lack of skills
Core skills change over time eg cooking less important but skill in use of a computer being redefined as a core competence
Epidemiology- problems
Problems in estimating numbers because no UK national register of learning disability (although exists in some EU countries)
Local GP registers, local service registers but usually record people in contact with services (mainly moderate/severe/ profound LD or mild LD with additional disabilities)
GP records now more effective but also under record people with mild LD
All learning disability numbers
Theres ~ 1.5mil people with learning disability in UK
~1.2mil of those are in England
~2.16% of adults in the UK are believed to have a learning disability
~2.5% of children in UK are believed to have learning disability
350000 people have a severe learning disability
Epidemiology- mild LD
18/1000 people across all ages
Most dont have identified organic cause
Strongly associated with poverty and disadvantage
Most not in contact with specialist services and rates on registers therefore increase through school years (as more children identified) and then decrease after leaving school
Epidemiology more severe LD
About 3-4/1000 people have moderate, severe or profound LD
Much more likely to have identified organic cause
Less association with poverty than mild LD
Contact with specialist services continues after school but high mortality rates result in declining proportion among the elderly
Trends
Possible increase because of:
-limited impact of preventative measures
-increasing number of premature babies surviving often with LD
-increased number of children with severe LD surviving into adulthood
-greater life expectancy of adults with LD
Communication
Distinguish receptive from expressive communication. More people can understand language than speak it while many more can communicate than can understand language
Understanding may be limited to key words.
Significance of communication
Communication problems associated with ‘challenging behaviour’ which may be a substitute form of communication
In terms of healthcare services think of people with LD as a ‘communication minority’ comparable to people who are deaf, blind, illiterate or who do not speak the host language
Assisting communication
Communication minorities need:
-environmental adaptation (signs, colour, coding etc)
-interpreters (translators, sign language, inc makaton)
-assisted communication (braille, symbol systems, message board etc) but also use of simpler English
Communication environments
Communication therapists identify need for ‘total communication’ approach which uses all of above methods
But this requires commitment from staff and theres a common failure to adapt buildings, use Makaton, adapt speech etc
top tips of communication
Use accessible language
Avoid jargon or long words
Be prepared to use different communication tools
Follow the lead of the person
Go at the pace of the person
Three evangelical phases
Early 19th century commitment to human care and education (pinel and Itard) led to creation of special schools and residences
Early 20th century eugenics (Galton) application of social Darwinism. Led to total institutions
Late 20th century normalisation (Nirje, Wolfernsberger) led to community integration
Eugenics
Developed by Galton in 1880s and attracted wide intellectual support by early 20th century
Concern that fitness of the’ race’ imperilled by higher reproduction of least intelligent and social welfare preserving the ‘weak’
Aimed to prevent reproduction by the ‘weak’ and encourage the strongest to reproduce ‘thoroughbreds’
Impact of eugenics
Prevention of reproduction. Sterilisation, separation of sexes and separation from society in institutional care
Failure to educate. Children formally classed as ‘uneducable’
Failure to treat diverse health needs of people with LD not investigated and high mortality rates
Discrediting. People with LD seen as threat to survival of the race
The end of eugenics
Eugenics adopted by Nazis, murder of 200000+ disabled people hadamer clinic
Post 1945 triumph of ‘universalism’ (ie the idea that all human life is of worth, expressed in declarations of rights (universal declaration of human rights and the European convention of human rights)). Reflected much earlier religious and humanitarian ideals
Rights of disabled people
Neither UDHR or ECHR specified disabled people
Subsequent UN declarations have asserted application of universal rights to disabled people, statements of entitlement to an ordinary life and entitlement to compensating services to enable disabled people achieve their potential and make use of their rights
Normalisation 1
Scandinavian approach (eg Nirje) emphasises the importance for the disabled person to attain adulthood by overcoming the ordinary challenges of life
Compensatory services are needed to enable the disabled person overcome these challenges and also to live a life comparable to that of other people in society
Normalisation 2 (social role valorisation)
US approach (wolfensberger) notes the ease by which disabled people are assigned derogatory labels because of the separateness of their appearance, environment or way of life
Therefore wary of specialist services which identify disabled people as different proposes importance of them being associated with valued social roles. Now renamed ‘social role valorisation’
Impact of universalism
Closure of large institutions. Preference for ordinary domestic settings, domiciliary care. Suspicion of separate disabled services, schools
Greater access for disabled people to universal public services, employment and community facilities this is enforced by law and political action
Challenge to universalism
Rise of consumerism with people defining self as what they purchase from competing corporations
Diminished sense of collective responsibility arising from less engagement with others and perception of others as a threat (culture of fear)
May lead to loss of sense of people sharing universal rights disabled seen as ‘negative consumers’
Prevention
Causes of LD very diverse and therefore multiple prevention strategies required
Distinguish preconceptional causes (eg DS, PKU) prenatal (eg foetal alcohol syndrome), perinatal (obstetrical trauma) and postnatal (eg meningitis, cerebral anoxia)
Prevention strategies
Preconceptional. Prenatal (DS) or newborn (PKU) screening
Prenatal. Folate therapy in pregnancy, health education to reduce alcohol consumption in pregnancy
Perinatal. Optimal obstetric, neonatal care
Postnatal. Health education to reduce accidents, vaccinations
Morbidity
High rate of chronic disorders. 60% of individuals have chronic disorders/disabilities in addition to LD. No specific set of disorders associated with each syndrome
High rate of injuries. Less capacity to assess risk, higher prevalence of epilepsy, sensory impairments and mobility problems
Psychiatric disorders
4 times more likely to suffer common mental disorders than rest of population. May result from stress involved in coping with dependence, social exclusion
Higher prevalence (10x) of autistic disorders
Challenging behaviour associated with specific syndromes or resulting from physical distress, abuse, poor care
Mortality
Life expectancy for people with LD has risen since early 20th century (when minority survived to adulthood). Low life expectancy in old hospitals because of infectious diseases, untreated illnesses
This trend is still continuing, and mean age at death for people with more severe LD now in late 50s/early 60s in UK
Higher risk
But sex adjusted mortality rates for people with severe LD still 10-18 times higher than in general population
Highest risk among people with greater severity of LD, DS, epilepsy and tube-feeding
Most common causes of death are bronchopneumonia, cardiovascular disorders, and consequences of epilepsy
causes of high mortality rates
Disorders associated with the syndrome causing the LD eg DS has early onset of AD-type dementia and cardiovascular disorders and reduced immunity to infections
Higher prevalence of other neurological disorders 20-30% with severe LD also have epilepsy
Unhealthy lifestyle. Many people with LD lead sedentary lives and have a poor diet. Rates of obesity double that in rest of population. Poor quality care can result in chronic constipation because of low levels of roughage in diet, limited exercise and inadequate fluid intake
Poor access to healthcare
Primary care
GP learning disability register
The learning disabilities health check scheme (annual health checks)
Only 4.4 in every thousand patients has a recorded intellectual disability which represents only 23% of the estimated total population of adults in England with a learning disability
Community learning disability services
In the UK, learning disability services are delivered by community based teams led by the local authority some are in partnership with mental health foundation trusts
Provide specialist help with complex needs
Access to healthcare
Poor access, several surveys have found that contacts with GP similar to general population but that there are high rates of untreated and undiagnosed disorders and low uptake of routine screenings and tests
Steps to treatment
Attribute discomfort to an illness
Make appointment to see GP
Get to GP surgery
Speak to reception
Wait in waiting room
Communicate information to GP
Understand GPs advice
Collect prescription
Take medication as directed
Access to primary care
All are potentially difficult you may require the help of a family member/carer to arrange appointment take you to surgery and pharmacy, communicate with the GP on your behalf
This requires an important additional step communicating your discomfort to the carer. Carer (and GP) may fail to identify illness because of ‘diagnostic over shadowing’
People with LD in hospital
Limited research but shows:
Hospital staff often unfamiliar and embarrassed in communication with PLD. Do not speak to the patient ask for consent or use expertise of carer
Poor information to patient before admission about hospital procedures and at discharge
Result is fear and distress with limited alleviation by nurses. No one saw it as their job to comfort the sick
Other problems in the hospital
Hospitals unwilling to make ‘concessions’ to special needs
Lack of adapted facilities or room for wheelchairs
Families expected to provide 24hr care
Hospitals unwilling to meet additional care costs unless they could offset it to other agencies could delay admission
Why do these problems happen
Hospitals often not informed in advance that patients has LD
Little staff training in communicating with people with LD limited policy commitment to meeting needs of PLD in hospital (cf other communication minorities)
Concern about risk to other patients
Consent and liability issues not resolved
Primary care action
Identification of patients with LD on practice register
Programme of routine health checks
More appropriate waiting arrangements
Routine use of double appointment time because of more complex communication
Training to improve awareness among entire PHCT
Hospital action
Patient held data (eg medalert, life books, hospital passports)
Preparation for admission (videos etc)
Access by staff to communication therapists
Specialist community support for PLD in hospital
Improved communication environment in hospital
Training for hospital staff in needs of PLD
Thinking about what reasonable adjustments someone might need
TEACH is a way of learning and remembering how to make reasonable adjustments. Each letter of the word TEACH is the first letter of a key word to think about when supporting someone to access healthcare
Time : this might be offering a double appointment with the GP or an early morning appointment when the waiting room is quieter
Environment: this might mean the dentist visiting at home or the operating theatre nurses meeting the individual in casual clothes rather than in gowns and masks
Attitude: this means treating everyone with dignity and respect and as an individual
Communication : this means using accessible information to ensure it can be understood eg easy read leaflets, pictures, symbols or sign language
Help: this means listening to others (family carers/supporters) and knowing where to get specialist help when needed (community learning disability nurse, acute liaison nurse, social worker, safeguarding teams)
Advocacy
People with learning disabilities need their voices heard
Services should encourage self advocacy
Positive self esteem leads to self empowerment
Four approaches are self advocacy, independent advocacy, collective advocacy and legal advocacy
What is visual impairment
Being unable to see or unable to see very clearly
How much one sees depends on a number of factors not just the level of sight
The external environment may play a role
You can still have poor vision but not fulfill the criteria for being registered
Visual acuity
The ability of the eye to see detail
Distance acuity:
-each eye is tested separately using a snellen chart
-tested at a distance of 6m- normal 6/6
-if cannot see the top letter at 6 metres then test at 5,4,3,2,1
Snellen chart comprises rows of letters of decreasing size labelled 60,36,24,18,12,9,6,5
Normal distance acuity ie 6/6 means that the row of letters with the number 6 underneath can be read at distance of 6m
Lower levels of visual acuity
Counting fingers CF
Hand movements HM
Perception of light PL
No perception of light NPL, stone blind
If visual acuity is not at least 6/9 then use pinhole test
Registration of visual impairment
Registration takes place on the recommendation of an opthalmologist
Depends on how far you see down the eye chart and your field of vision
Two categories:
- severely sight impaired (previous known as blind)
-sight impaired (previously known as partially sighted)]
Based on vision in better seeing eye
Form called certificate of vision impairment CVI
Severely sight impaired SSI
Group 1: people who have visual acuity worse then 3/60 snellen
Group 2: people who are 3/60 snellen or better but worse than 6/60 snellen who also have contraction of their visual field
Group 3: people who are 6/60 snellen or better who have a clinically significant contracted field of vision which is functionally impairing the person e.g significant reduction of inferior field or bi-temporal hemianopia
Sight impaired SI
Group 1: people who are 3/60 to 6/60 snellen with full visual field
Group 2: people between 6/60 and 6/24 snellen with moderate contraction of the field eg superior or patchy loss, media opacities or aphakia
Group 3: people who are 6/18 snellen or even better if they have a marked field defect eg homonymous hemianopia
What can SSI and SI people see
Very few blind people see nothing at all
A minority can only distinguish light
Some have no central vision others have no side vision
Some see everything as a vague blur others a patchwork of blanks and defined areas
More than 2 million people are estimated to be living with sight loss in UK today
This includes:
-people who are registered SSI or SI
-people whose vision is better than the levels that qualify for registration
-people who are awaiting or having treatment such as eye injections, laser treatment or surgery that may improve their sight
-people whose sight loss could be improved by wearing correctly prescribed glasses or contact lenses
Main causes sight loss:
-uncorrected refracted error
-age related macular degeneration
-cataract
-glaucoma
-diabetic eye disease
Who has sight loss
The older you are the greater your risk of sight loss
The majority of people registered SSI and SI are aged 75 and older
The “oldest old” are at greatest risk of sight loss
How much sight loss is avoidable
At least 50% of sight loss can be avoided
Many older people are needlessly living with sight loss almost 2/3 of sight loss in older people is caused by refractive error (shortsighted, long sighted, astigmatism) and cataract
Both conditions can be diagnosed by a simple eye test in most cases the persons sight could be improved by prescribing correct glasses or cataract surgery
Visual impairment and blindness worldwide
89% of visually impaired people live in low and middle income countries
Globally uncorrected refractive errors are the main cause of visual impairment
Cataracts remain the leading cause of blindness in low and middle income countries
The number of people visually impaired from infectious diseases has greatly reduced in the last 20 years
Millions of people remain at risk of visual loss due to the lack of eye care services
Who is at risk
About 65% of all people who are visually impaired are aged 50 and older while this age group comprises of 20% worlds population
An estimated 19 million children are visually impaired of these 12 million children are visually impaired due to refractive errors a condition that could be easily diagnosed and corrected 1.4 million are irreversibly blind for the rest of their lives
Females have a significantly higher risk of being visually impaired than males
Major causes of avoidable worldwide blindness
Uncorrected refractive errors
Cataract
Glaucoma
Corneal opacities
Diabetic retinopathy
Childhood blindness
Trachoma
Onchocerciasis
Age related macular degeneration is unavoidable
Trachoma
Eye disease caused by infection with bacterium chlamydia trachomatis
It’s the leading cause of infectious blindness globally being responsible for 1.3 million cases of blindness
It’s estimated that trachoma is endemic in 55 countries mainly Africa and Asia
Trachoma blinds one person every 15 minutes
Onchocerciasis (river blindness)
Caused by the filarial parasite onchocerca volvulus, which is transmitted by the Backfly simulium species. It mainly affects communities living near rivers
The filarial worm is transmitted through the bites of infected back flies
In the body the larvae form nodules in the subcutaneous tissue where they mature to adult worms
These move through the body and when they die they cause a variety of conditions including blindness
It’s endemic in 30 countries but mainly in Africa
Currently about 300000 people are blind from onchocerciasis
Cost of eye health and sight loss
The total estimated cost on the UK is estimated to be around £26.5 billion every year
This cost is made up of:
-direct health care costs such as NHS eye examinations, prescriptions, outpatient appointments and operations
-indirect costs, such as unpaid carer costs and reduced employment rates
-associated reduction in wellbeing and health due to sight loss
People from ethnic communities
People from certain ethnic communities are at greater risk of some of the leading causes of sight loss yet many are unaware of this
Black African and Caribbean people are 4-8x more at risk of developing certain forms of glaucoma compared to white people
The risk of diabetic eye disease is around three times greater in south Asian people compared to whites people
Black African and Caribbean people are also at higher risk of diabetic eye disease
Impacts of visual impairment
Lower wellbeing
Lack of emotional support
Essential practical support is missing
Relying on some form of support
Financial struggles
Travel and transport remains a major issue
Feeling isolated from the people and things around them
Limited choice about how to spend free time
Poor access to key information
What help is available
Government benefits but less if registered SI
ECLO- eye clinic liaison officer
Social worker, mobility officer, technical officer, rehabilitation worker
Voluntary organisations e.g RNIB, guide dogs for the blind, focus birmingham
Low vision aids, magnifiers etc
Eye clinic liaison officers ECLOs
Also known as sight loss advisor or vision support service officer
Work closely with medical and nursing staff in the eye clinic and the sensory team in social services
They provide those recently diagnosed with an eye condition with the practical and emotional support which they need to understand their diagnosis, deal with their sight loss and maintain their independence
Benefits
Registering as visually impaired isn’t compulsory but it can entitle you to a range of benefits including :
-disability living allowance (DLA) or personal independence payment PIP a tax free benefit to help with any costs relating to your disability or illness
-a reduction in the TV licence fee
-a tax allowance
-reduced fees on public transport
-parking concessions
Computers, tablets, smartphones
Change text and background colours
Change fonts
Make text larger
Magnify screen
Make the mouse pointer easier to see
Get the computer to speak the text aloud
Waymap
Waymap does not require any external signals. No GPS, no Bluetooth and no mobile signal are required, meaning that Waymap can navigate you anywhere and you are never left without navigation instructions
Waymap has created a breakthrough technology that locates people accurately indoors and outside without signal or beacons using only smartphone. The app uses the sensors already on your phone that measure movement, direction and elevation to navigate via dead-reckoning
What a guide dog does
To walk in a straight line in the centre of the pavement unless there is an obstacle
Not to turn corners unless told to do so
To stop at kerbs and wait for the command to cross the road or to turn left or right
To judge height and width so that it’s owner does not bump their head or shoulder
How to deal with traffic
