LEARNING DISABILITIES AWARENESS Presented by Maureen Major Health Facilitator AIMS AND OBJECTIVES Explore the meaning of the term learning disabilities Review the causes of learning disabilities Look at some of the specific health needs associated with learning disabilities Support ways of working with people whom have a learning disability Learning Disability Learning disability is the term preferred by health organisations to describe: A significantly reduced ability to understand new or complex information or learn new skills (impaired intelligence) with A reduced ability to cope independently (social function) Learning Disability And Which started before adulthood, with a lasting effect on development. (Valuing People 2001) Degrees of Learning Disability Mild: IQ - range 50-69 (accounts for 89% of people with a learning disability). Often not diagnosed until a latter age. Usually slow in achieving milestones. May have required special education Often live & work independently in the community. May not easily be identifiable. Moderate Learning Disability IQ 35-49 (6% of the learning disability population) Noticeable delay in achieving milestones Will usually have gained basic mobility, continence, communication and some self help skills. May be able to achieve some independence in familiar settings. May be able to carry out some semi skilled work with supervision. Usually require some support in managing everyday affairs. Severe Learning Disability IQ 20-34 (accounts for 3.5% of all individuals with a learning disability) Very slow in achieving milestones. May have additional physical disabilities. Help from specialist likely from an early age. Emphasis on functional, rather than academic skills. Will need help and support with activities of daily living. Profound Learning Disability IQ less than 20 (1.5% of all individuals with a learning disability). Development progress very slow. Likely to have additional physical and sensory disabilities. Almost certain to have involvement from specialist services from birth. Health may be very frail. All basic needs are likely to be met by others. Emphasis on meaningful day time activities. Health and physical status likely to be a matter of daily concern. What is NOT a Learning Disability Problems with reading, writing or numeracy only. Emotional difficulties. Conditions like Attention Deficit Hyperactivity disorder (ADHD) Aspergers syndrome and some individuals with Autism. However you can have a learning difficulty as well as a learning disability. Prevalence of Learning Disability National prevalence estimated at 2-3% of the population. Mild to moderate: 25 per 10000 of the population (1.2 million people) Severe to profound 210,000 65,000 of this number are children 120,000 adults of working age and 25,00 older people. A GP practice of 2,000 patients there will be an average of 40 individuals with a learning disability. Causes of Learning Disability Prenatal – chromosome, genetics, toxins. Perinatal – Birth complications, infections. Post natal- infections or trauma. A learning disability will have started before adulthood. After adult hood people may have brain damage resulting in significant impairment of both intelligence and social functioning, but they are not considered to have a learning disability, often referred to as having a brain acquired injury. Health needs 26% of people with a learning disability are admitted to general hospitals each year compared to 14% of the general population. Mortality: People with learning disabilities are 56% more likely to die before the age of fifty. Cancer: The pattern of cancer is different in Learning Disabilities, with lower rates of lung, prostate and urinary tract cancers. There are higher rates of oesophageal, stomach and gall bladder cancers and leukaemia. Health needs Helicobacter Pylori Infection: Endemic in the learning disability population, postulated that the higher than normal prevalence of this infection leads to higher levels of gastric carcinoma. Congenital Heart Disease (CHD): 2nd most common cause of death in LD- nearly 50% of people with Down’s syndrome have CHD. Respiratory Disease: Most common cause of death – rates 3 times higher than in the general population. Health needs Sensory Impairments- common for individuals to have a visual impairment and 40% of individuals are likely to have a hearing impairment. Epilepsy: At 22% of the learning disability population it is 20 times more common than in the general population = 1%. SUDEP: Sudden Unexplained Death in epilepsy. 5% more common than in others without a learning disability. (Hollins S, Attard M.T, Von Fraunhofer N, McGuigan S and Sedgwick P (1998) Mortality in people with a learning disability: Risks, causes and death certification findings in London, developmental medicine and Child Neurology, 40-127-132) Health needs Dementia: rates 4 times greater and early onset in Down’s syndrome. Thyroid Function: greater risk of hypothyroidism Mental Health: Schizophrenia is 3 times more common. Osteoporosis: often individuals have substantially less bone density (important to look at individuals (postural care) Syndrome specific Fragile X Syndrome: Dilatation of aortic root, hypoplasia of the aorta and mitral valve prolapse affect about one-third of all males, and are responsible for high mortality rate. The nervous and urogentital systems are vulnerable to cancer. 20% have epilepsy Joint laxity, awkward gait and flat feet are common problems. (ref: Howellls G Adults with learning disabilities a practical approach to care 1997) Downs Syndrome Hearing loss affects more than 50% of people with Downs syndrome (DS). Disorders of the eye, including blepharitis, errors of refraction, squints, cataracts and poor visual accommodation. Loss of interest in activities may indicate visual impairment. Hypothyroidism: affects about 40% of adults with DS, indicating the need for annual thyroid function checks. Congenital heart disease is 50 times more common than in the general population. Often prone to periods of depression. Increase in prevalence to epilepsy in the fifth decade of life. Downs Syndrome People with DS show an accelarted aging process, and may develop Alzheimer- like dementia. Prader Willi Syndrome (PWS) PWS has an incidence of about 1: 10,000, and present several medical challenges: Obesity: Begins in early childhood, characterised by: Unusual inability to vomit, an insatiable appetite and a reduced caloric requirement. Can lead scavenging in bins, gardens exposing individuals to risk of poisoning. High risk of developing diabetes. Behavioural difficulties, including obsessional behaviour. Skin picking, predispose individuals to infection and skin problems. Dental problems are common. PWS Altered responses to potentially painful conditions such as ear infections or appendicitis, yet in sharp contrast may be hypersensitive to touch. These unusual responses make the diagnostic process all the more difficult. Woman with PWS are infertile with hypoplastic ovaries, with low oestrogen levels, and it might be worth considering replacement therapy, to support health presentation. Dysphagia Feeding, swallowing and nutritional problems have a high prevalence among people with a learning disabilities. This can have serious repercussions including poor nutritional status, dehydration, aspiration and asphyxiation. Which can be or lead to life threatening problems. People with cerebral palsy and those with severe intellectual and physical disabilities have a high incidence of Dysphagia and patients with spastic quadriparesis are at particular risk of aspiration. There is limited research into people with learning disabilities who have Dysphagia, there is however evidence that successful management decreases risk. (National Patient Safety Agency 2004) Dysphagia 2 Carers need to have education to improve their awareness of the symptoms of aspiration. As many as quarter of the respiratory disease deaths for individuals with a learning disability can be directly linked to aspiration pneumonia. (Community service Commission 200: Disability, death and the responsibility of care. Sydney: New South Wales Community Service Commission. 36% of individuals in long stay hospitals had chewing and/or swallowing problems. (Hickman J 1997 ALD and Dysphagia: issues and practice. Speech and language Therapy in Practice Autumn 8-11 60% of people with cerebral palsy (CP) have difficulties with chewing and or swallowing. People with CP show a deterioration in oral motor skills and Dysphagia in their early 30’s. Barriers to healthcare Automated multi-service telephone systems. Touch screen technology Physical barriers: e.g. Wheelchair accessibility, waiting areas and access to consultation rooms. Communication difficulties e.g. An inability to describe symptoms clearly. Barriers to healthcare The attitude of health care professionals, - e.g. Lack of confidence, limited experience, negative attitudes and assumptions. Recognition of ill health may be difficult or delayed because: Symptoms may not be easily identified: family members/carers may not have the skills and knowledge to support individuals to obtain health care or to maintain health related behaviour. ‘Problematic’ symptoms (such as aggression) may be brought to the attention of services earlier, others that are equally significant (such as withdrawal, loss of interest) may not. Barriers to healthcare Poor historians. Reluctance by health care professionals to consider and/or provide the same range of treatment options because of (a) ‘Diagnostic overshadowing’ the inability to see beyond the disability (b) perceived difficulty obtaining consent (c) assumptions and negative predictions about how patients might react or cooperate. Barriers to Healthcare Surgery involving complex rehabilitation may not be considered as it is often assumed that compliance will be a problem. Health problems may manifest in unusual symptoms e.g. demonstrated by self injury. Lack of ability by the individual to recognise and responding to their own changing health. Reasons for not accessing health care May be unaware of the health services available to them. Might not understand the benefits of health screening. May not understand consequences of their or others decisions about their health. Poor health is associated with low socio economic and poverty, which is a group that many people with a learning disability may fall into. Consent It is a general legal and ethical principle that valid consent must be obtained before starting treatment or physical investigations, or in the provision of personal care to individuals. Omission to obtain consent can lead to legal action. Valid consent must be given voluntarily. The Mental Capacity Act 2005 (MCA) came into force on 1 October 2007, providing a framework for making decisions for people who lack capacity to make decisions for themselves. MCA The MCA defines a person who lacks capacity as a person who is unable to make a decision for themselves because of an impairment or disturbance in the functioning of their mind or brain. Capacity is decision specific. Individuals are entitled to make what others may perceive to be unwise or irrational decisions, as long as they have the capacity to do. All practical steps should be taken to enable an individual to make a decision themselves. Best Interests Must consider all relevant circumstances. Must involve the individual Have regard for the past and the present Be in consultation with others who support the care of the individual Should not be discriminatory. Good Practice Develop Practice Specific development Plans that might include the following: Identify a lead person within the practice to take special interest in learning disabilities, collect information, be a link with the health facilitator the Community Learning Disability Team and advice others. Develop accessible leaflets in suitable formats. Support the teams awareness of learning disabilities, with on going access to training and professional competencies. Work with the health facilitator in developing user groups to provide individuals with a learning disability to understand their own health. Offer preparatory visits. Good Practice Develop with the health facilitator guidelines on syndrome specific care pathways. Support and develop health education promotion to meet the needs of the learning disability population. Allow extra time for appointments. Look at the environment: including the lighting, noise, accessibility. Communicate: Speak with the individual, in a clear voice, not too fast. Think about response time, it may take longer for an individual to process information. Avoid jargon and abbreviations. Good Practice Check that the person understands, use reflection, signs and look for non verbal clues, a smile, a frown etc. Make sure you're conversation has a clear begining, a middle and an end. Write as you speak. Use consistent words and phrases. YOU CAN MAKE A DIFFERENCE No one said it was going to be easy but: By providing appropriate health care, support and taking that extra time, you really can make a difference to the healthcare and therefore most other needs of people with a learning disability Good Luck on your journey, I am here to help you ride the wave.