The General Health Management Aspects of The Intellectually Challenged Child.(ICC) The General Health Management Aspects of Trisomy 21 Downs syndrome Definition: • Although intellectual function cannot be measured directly however it could be deduced by inference from the assessment of skills in a number of different executive and cognitive domains. • The most reliable, rapid and consistent indirect measure of evaluating intellectual function is by the Intelligence Quotient (IQ) test, albeit the results are inconsistent and are usually influenced by cultural and environmental factors. Definition of Intellectual Challenge by the IQ Tests Standards • For a long time, IQ tests have been misappropriated and its interpretation biased by the zeal to re-enforce social, ethnic and cultural supremacy. • However, it is axiomatic that the original intent and purpose of IQ tests and still their only valid use is in the identification of children who would benefit from additional assistance. Definition of Intellectual Challenge by the IQ Tests Standards • The application of an IQ test to a population produces the standard bell-shaped normal distribution curve. • The mean is set at a score of 100 and 2 standard deviations below the mean (which scores 70 on most tests) is usually defined as the lower limit of “normality”. Definition of Intellectual Challenge by the IQ Tests Standards • The highest IQ score ever recorded • Ainan Celeste Cawley (IQ score: 263) • William James Sidis (IQ score: 250-300) • Terence Tao (IQ score: 225-230) • Marilyn Vos Savant (IQ score: 228) • Christopher Hirata (IQ score: 225) • • • • • • • • Kim Ung-Yong (IQ score: 210) Edith Stern (IQ score: 200+) Christopher Michael Langan (IQ score: 190 – 210) Garry Kasparov (IQ score: 194) Philip Emeagwali (IQ score: 190) Judit Polgar (IQ score: 170) Albert Einstein (IQ score: 160 – 190) Stephen Hawking (IQ score: 160) Definition of Intellectual Challenge by the IQ Tests Standards • IQ is the numerical annotation of a persons scores after undertaking one of the several standardized tests to measure the intelligence level of individuals. • Originally, the intelligence quotient was calculated as the ratio of mental age and chronological age (IQ= MA/CA x 100, where MA is mental age, CA is chronological age). • However, today, intelligence scores are calibrated against values of actual population scores. Here is a graph that shows how people fare when they take an IQ test: Definition of Intellectual Challenge by the IQ Tests Standards Definition of Intellectual Challenge by the IQ Tests Standards • This is, as you can see, a bell-shaped curve. It depicts that most measurements fall in the middle, and fewer fall at points farther away from the middle. • This simply implies that most people’s IQ scores fall in and around the average range, while much less people score very low or very high. • The general score of 95% of the population from these tests ranges between 70 and 130. Since there are quite a few different classifications, the Stanford-Binet Scale of Human Intelligence is the most commonly used one and we shall use that as a reference. • According to this scale, people who have a score higher than 145 are considered geniuses. Intelligence Quotients Assessments • About the ISIQ - Children's Version n • This Child IQ test is professionally designed for children ages 6-16 years old and takes about 40-60 minutes to complete. • A child does not have to complete the entire IQ test in one sitting. • You can use the results of the IQ test to determine your child's natural intellectual strengths. Intelligence Quotient Testing • When the child is about to be given the Test , to take the full test, it is appropriate to set aside about one hour where you will be in a quiet and uninterrupted environment Intelligence Quotient Testing • The ISIQ - Children’s Version is intended as a test that parents of young children and teenagers could use for assessing their childrens verbal intelligence. • Scores obtained could be employed by parents to improve their wards awareness,comprehension and planning for educational and career options. • The reports obtained could also be used by health and educational professionals in assessments for career planning, school placement and problem diagnosis. • Such as in when diagnosing ADHD, learning difficulties and dyslexia, it is crucial to exclude mental retardation. Intelligence Quotient Testing • Description and Design.The ISIQ - Children's Version is a 201item multiple choice measure of verbal intelligence designed for children ages 6 to 16. The test items were written to measure a range of ability from a mentally slow 6 year old to a bright 16 year old. It has about 40 items for each of five of the content areas measured: information, similarities, arithmetic, comprehension and vocabulary. Similar to the Wechsler Intelligence Scale for Children, 3rd and 4th Editions (Verbal WISC III and WISC IV), the ISIQ - Children's Version results are reliable and accurate. Indeed, the reliabilities hold up very well across all ages from 6 through 16. For example, the mean reliability of the section scores for 10 year olds is 0.84. For the same five Wechsler III tests for 10 to 11 year olds the mean is 0.81. The total reliability of the ISIQ test for 10 year olds is 0.96, computed by the Kuder-Richardson 21 formula. For the WISC III total it is 93. The Cronbach alpha reliability coefficients for the ISIQ total verbal I.Q. for 14 year olds is .97 while the same measure for 14 year olds on the WISC III total verbal I.Q. is .95. IQ Testing • The Wechsler tests are highly regarded and widely used by clinical psychologists globally and were most frequently chosen for comparative analysis. • The author is very familiar with the Wechsler tests, having administered them in his clinical practice for several years, He is familiar with test design, having constructed clinical, industrial and research tests for about three decades. IQ TESTING • A multiple-choice format was chosen to permit Internet administration and automatic, computer scoring. Each item has 5 options, four that are possible answers and one for "I don't Know". • There is only one correct answer for each item. When a child misses 5 items in a row, that section of the test is discontinued and the next begun. • Test-takers are urged to be serious and complete the entire test carefully. Young children should be guided by an adult to assure reliable and valid scores. • Scores do not vary substantially by gender, ethnic group or nationality, suggesting that the test is relatively culture-free and free of ethnic bias for English-speaking children with access to the Internet. I.Q. scores are calculated by the standard deviation formula with a mean I.Q. set at 100 and standard deviation of 15. • Certificate of intelligence quotient that can be printed for personal use. • Scores are given in terms of both I.Q. and percentile levels for all five sections and the total score. The printed Test Report provides a description of verbal intelligence, reliability data and recommended interpretation of scores. IQ TESTING • • • • • Norms: The test norms are periodically updated and are currently based on a sample of over 100,000 children from around the world. As there are no substantial differences in scores by gender, scores are based on comparison of the test taker's scores with those of other children the same age. Value: Determining if a child is gifted or has special needs can give parents a valuable insight into their child's emotional, academic and social development - this children's IQ test can be immensely helpful in determining if your child has special needs or is eligible for higher placement in school. Research has shown that one of the first steps to raising a gifted child is to have him or her take an IQ test along with other forms of testing to determine his or her strengths, weaknesses and abilities. In today's crowded educational environment, parents cannot rely solely on their child's school to determine if their child is gifted or would benefit from being placed in a special academic environment. Parents should take the initiative as early as possible by having their children take an intelligence test. IQ TESTING • In many school districts, the best way for a child to get a quality education is to be admitted into the gifted classes or attend a special magnet school. Unfortunately, these programs often have limited enrollments so countless parents compete for a few, coveted spots. • Further, parents who are looking to get their children into these programs often need to provide proof that their child belongs in a special or gifted program. For years IQ testing was often an expensive and timeconsuming process affordable by only the wealthiest of parents. The process needed to be administered by a licensed and trained child psychologist who charges A substantial amount for a basic assessment. This is no longer the case. The ISIQ - Children's Version is a valid and accurate assessment of a child's intelligence quotient and just as accurate as the Wechsler IQ tests for children. Several parents globally employ the ISIQ - Children's Version to quickly and affordably determine their child's level of intelligence. IQ Testing • A high IQ doesn’t necessarily indicate than a child is smart. • Having a high IQ does not necessarily mean that the person is intelligent or very smart. The problem with IQ tests is that although they’re pretty good at assessing our deliberative skills (which involve how we use our working memory and reason), but they are not able to assess our inclination to use them when the situation demands. This is a very important difference. Intelligence is about brain power whereas rational thinking is about control. • Some people who are intellectually able do not bother to engage very much in analytical thinking and are inclined to rely on their intuitions. “Other people will check out their gut feeling and reason it through and make sure they have a justification for what they’re doing. • A high IQ is like height in a basketball player. It is certainly a crucial trait, provided all other ‘things’ are equal. But if all other things aren’t equal, then the player needs a lot of more than just height in order to be a good basketball player. Similarly, there is a lot more to being a good thinker than having a high IQ. Definition of Intellectual Challenge by the IQ Tests Standards • Having seen the list of the people with the highest IQ in the world. • It would be worthwhile to remark that IQ tests are not necessarily all that accurate in estimating someone’s overall intelligence, even if they are good markers for specific cognitive skills, such as mathematical ability and logical reasoning. The definition of intellectual Challenge • The definition of Intellectual Challenge used by the American Association of Mental Difficulty • (AAMD) reflects these issues: • Significantly Subaverage General Intellectual Functioning, • Existing concurrently with Deficits in Adaptive Behaviour & • Manifested during the Developmental Period. • Intellectual Challenge is further subdivided by the World Health Organisation into: • Mild (IQ 50-70) • Moderate (IQ 35-49) & • Profound (IQ below 20) categories. The definition of intellectual Challenge by the Intelligence Quotient(IQ Tests) • Significantly Subaverage General Intellectual Functioning is usually interpreted to imply more than two standard deviations below the mean IQ. • Existing concurrently with Deficits in Adaptive Behaviour reflects the limitations of IQ testing and the need to take into account how a person functions in everyday life. • Manifested during the developmental period excludes disabilities that result from cerebral insults occurring in adult life. Prevalence of intellectual disability • Prevalence estimates for intellectual disabilities vary from 1-7% with most figures being in the range of 1.5-3%. • This discrepancy in the range figures is due to differences in the • Definition of Intellectual Disability, • Differences in Methodology & • True differences in Prevalence. • Some studies use 75 rather than 70 as the lower limit of normal. • Examination of the normal distribution curve illustrates that this variation will dramatically increase the number of children included Prevalence of intellectual Challenge. • Case detection could be achieved by: • [I]-Notification. • [II]-Registration of children enrolled for a service • (both of which are likely to underestimate true prevalence) Prevalence of intellectual Challenge. • Case detection could be by field based total population screening using IQ test. • Although the later method is most reliable, but given the immense financial, practical and ethical considerations, it is often not employed. Prevalence of intellectual Challenge. • Prevalence estimates often indicate higher rates for school-age children than for older or younger children . • This fact is more likely to reflect difficulties of detection rather than true variation Prevalence of intellectual Challenge. • Children with intellectual difficulties are more likely to present with problems at school than as preschoolers or school leavers. • This fact is buttressed by an English Language study amongst children aged 5 to 14 years where a prevalence figure of 0.34 and 2.53 was computed for IQ levels between 0-49 and 50-70 respectively. Prevalence of intellectual Challenge • In a closely related endevour, two Scandinavian studies proffered concordance figures . • In the first Scandinavian study, the sample population involved students aged between 8 to 12 where prevalence figures of: • 0.3 ----------------- IQ ranges of 0-49 • and • 0.37----------------IQ ranges of 50-70 Prevalence of Intellectual Challenge. • In the second Scandinavian study amongst 14 year old aged prevalence figures of 0.63 and 0.56 were deduced for IQs ranges 0-49 and 50 70 respectively. • Also furthermore, a North American Study employing children aged between 7-10 computed a prevalence figure of 0.32 for children in the IQ range of 0-49. Aetiology of intellectual Challenge • Early discussion on causation focused on the organic versus non-organic aspects and on the effects of environmental factors. • Some children may be classified as intellectually disabled simply because they fall, naturally, at the lower end of the normal distribution curve. Aetiology of intellectual Challenge • Whilst others are intellectually disabled as a result of malformation, organic injury. OR • Social environmental factors are normally associated with mild intellectual disability although they may be a contributing factor in more severely affected children. Aetiology of intellectual Challenge A specific organic cause could be found in: 70-90% of children with moderate and severe intellectual disability. The importance of determining the aetiology has been highlighted by several authors because it provides a basis for accurate: [I]-Genetic counselling. [II]-Prediction of outcome. [III]-Preventive strategies and [IV]-Parental support. Aetiology of intellectual Challenge • It is always helpful to grieving families to comprehend why their child is disabled. • Several epidemiological studies, emanating from the Scandinavia: • Demonstrated that the aetiology is most certain for the severely to the profoundly intellectually impaired children • Compared to : • The mildly to moderately severely affected children Aetiology of intellectual Challenge • In this study involving the very severely and profoundly affected cases of intellectual difficulties in childhood: • Prenatal factors implicated—55% Whereas in the same magnitude of cases in the moderate to the moderately severely affected the causal mechanisms were largely • Idiopathic---------------55% Aetiology of intellectual Challenge • In the severely to the profoundly affected subsets: • Idiopathic factors------- 18% • Perinatal factors -------15% • & • Postnatal factors ------11% • contributed this% of cases in this range. Aetiology of Intellectual Challenge • As for the moderately and the moderately severely affected of cases in this IQ range category: • Prenatal------------------------------- 23% • Perinatal------------------------------ 18% and • Postnatal causes-------------------4% Aetiology of intellectual Challenge • The same range of factors are implicated in the aetiology of milder forms of intellectual difficulties. • Although the proportions in which a specific cause could be identified is much more diminutive. Examples of Possible causes of Intellectual Challenge. • Prenatal Factors associated with intellectual disabilities could be • [A]-Chromosomal abnormalities • such as but not limited to: • [i]-Downs Syndrome • [ii]-Trisomy 18 • [iii]-Cri du Chat syndromes. • [iv]-Sex chromosome abnormalities. Examples of Possible causes of Intellectual Challenge. • [B]-Genetic such as but not only • [i]-Fragile-X-syndrome. • [ii]-Tuberous Sclerosis. • [iii]-Neurofibromatosis. • [iv]-Metabolic & storage disorders. • [C]-Dysmorphic syndromes • [D]-Prenatal Infections. • [E]-Teratogens such as Drugs and Toxins. Examples of Possible causes of Intellectual Disability. • Perinatal Factors associated with intellectual disabilities include but not limited to: • [A]-Perinatal hypoxia and • [B]- Asphyxia • [C]- Trauma • [D]-Infections • [E]-Biochemical abnormalities. Examples of Possible causes of Intellectual Challenge. • Postnatal Factors implicated in intellectual Challenge include but are not limited to: • [A]-Trauma • [B]-Hypoxia • [C]-Meningitis • [D]-Encephalitis • [E]-Poisons. Diagnosis of Intellectual Challenge: • With regards to the diagnosis of intellectual disability, there are two major tasks: • [I]-To establish that an intellectual disability is present, and • [II]-To identify the cause of the intellectual disability. Diagnosis of Intellectual Challenge : • Does the child have an intellectual Disability? If yes • Children with intellectual disabilities may present in the following four ways: • [A]-In the neonatal period with recognizable malformations which are usually associated with intellectual disability (such as Downs syndrome) • [B]-With developmental delay. The more severe the delay the earlier these children are likely to present. Diagnosis of Intellectual Challenge • [C]-As a result of surveillance of infants at increased risk of developmental problems( such as infants with a very low birth weight) • [D]-With feeding or behavioural problems which on investigation are found to be associated with intellectual disability. Diagnosis of Intellectual Challenge: • The diagnosis of the presence of Intellectual Challenge relies on a high index of suspicion followed by comparison of the child’s performance with age appropriate norms. • Retrospective collections of developmental milestones are seldom useful, but • Milestones recorded at the time (often in infant welfare books) & • Comparisons with siblings at similar ages are valuable. Diagnosis of Intellectual Challenge • These tests are useful in that they compare the child’s development with a population of normal children at the same age & • They examine all aspects of development. • Their limitations are that they are not precise & • They are of limited value once a specific disability has been identified. • They are no more than a screening test. Once a disability is suspected more detailed & specific testing & investigation is required. Aetiological Diagnosis of Intellectual Challenge in Childhood-(ICC) • The History should include: • A Family Pedigree, • Details of The Pregnancy, • Birth &Neonatal History • Birth Weight, • Length & Head Circumference • Early Feeding Habits. • Psychomotor Development & • Specific Illnesses(Icterus etc) Aetiological Diagnosis of Intellectual Challenge in Childhood-(ICC) • The examination should record growth especially: • Head circumference. • In a child with microcephaly, • Serial head circumference measurements may indicate the stage in the child’s life when the cerebral insult occurred. Aetiological Diagnosis: In Intellectual Challenge of Childhood.-ICC. • The child’s general responsiveness, • the presence of dysmorphic features & • Any abnormalities of skin pigmentations should be noted. • Full neurological examination should include assessment of vision& hearing. • If there is a significant developmental delay it may be preferable to obtain specialist assessment of these functions. Aetiological Diagnosis: In Intellectual Challenge of Childhood--ICC. • General physical examination should particularly include a search for other congenital abnormalities. The history & examination will often lead to a specific aetiological diagnosis or at least limit the range of possibilities. • Evaluations for most children with idiopathic moderate or severe intellectual disability warrant a Aetiological Diagnosis for Children with Intellectual Challenge. • Chromosomal analysis&cytogenetics studies(which should include examination for fragile-X-syndrome and computed tomography. • (CT) and screening tests on the urine for metabolic abnormalities. • Given the opportunity and availability all newborns infants are routinely tested for Phenylketonuria and hypothyroidism Aetiological Diagnosis for Children with Intellectual Challenge. • In specific instances: • Serology for Congenital Infections Tests of Thyroid Functions • Urinalysis for Mucopolysaccaridosis • Serum Creatinine Phosphokinase • A maternal Guthrie Test For maternal Phenylketonuria & • Other specific tests for rare disorders will need to be considered. Differential Diagnosis of Intellectual Challenge: • The most common differential diagnosis is • Delayed development in a normal child. • It is helpful to note : • The quality of the child’s responses. • The recent developmental progress. • Any adverse environmental factors. • This dilemma may only be resolved by monitoring a child’s development over a period of time. Aetiological Diagnosis for Children with Intellectual Challenge. • If delays are attributed to: environmental factors. • The quality of the environmental changes should be monitored & • Organic factors excluded. Other developmental disabilities: Impairments of Vision OR Hearing & • Motor Development may present as Global Developmental Delay and should be excluded. Differential Diagnosis of Intellectual Challenge in Childhood-ICC. • Disorders associated with ongoing disease and deteriorating function such as muscular dystrophy. • The Mucopolysaccaridosis storage disorders & • The neurodegenerative disorders. • Hypothyroidism. • Craniopharyngioma & • The neurodegenerative disorders. • May all present with delayed development. • These conditions warrant considerations in any child who presents after a period of normal development or who has lost developmental skills. Some Specific Considerations such as Downs syndrome • Downs syndrome is the most common abnormality associated with intellectual disability • & • Accounts for approximately 25% of children with an IQ less than 50. • The incidence is approximately 1:1000 births. • This is lower than in the past because of the reduced number of older women having babies and the availability of intrauterine diagnosis. Some Specific Considerations such as Downs syndrome • The extra chromosome in Downs syndrome may be of maternal or paternal origin. • In approximately one-third of the cases, it could be traced to the father and in two-thirds of cases it could be traced to the mother. • Approximately 95% of children with Down syndrome have standard Trisomy 21; the remainder has additional chromosome 21 material as translocation –D/G or G/G – or Trisomy/normal mosaism . Some Specific Considerations such as Downs syndrome • The incidence of Downs’s syndrome increases with increasing maternal age, rising to about one-1% over the age of forty years. • Despite the higher incidence of Downs’s syndrome in older women, the vast majority of mothers of children born with Downs’s syndrome are aged between 20 – 30 years of age. • The spectrum of intellectual disability in Downs’s syndrome varies from mild to profound with most performances being in the moderate and severely disabled range. Some Specific Considerations such as Downs syndrome •With active early educating programmes some children with Trisomy 21 are functioning at or above-age appropriate levels Some Specific Considerations such as Downs syndrome • Despite this it is likely that the majority of children born with Downs’s syndrome will have a significant intellectual disability. • Children with Downs’s syndrome have an increased susceptibility to infections. • Congenital heart disease occurs in about sixty percent of infants-one-third of whom have an artrioventricular canal and onethird a ventricular septa defect. • Conductive deafness occurs in 60- 80%, and many may benefit from hearing aids in early life. Some Specific Considerations such as Downs syndrome • Visual impairments. • Hypothyrodism due to autoimmune thyroiditis & • ?Duodenal atresia are common • ?Haematological abnormalities including Leukaemias are approximately twenty times more common in Downs syndrome than in the general population. Some Specific Considerations such as Downs syndrome • Estimates of mean life expectancy at birth vary between 30 to 45 years. • Children who survive The infectious & • The cardiac hazards of infancy could be expected to live longer than this. Fragile-X-Syndrome An Archetype of a common cause of Intellectual Challenge which could present covertly. • Fragile-X-Syndrome is the second most common cause of intellectual disability (after Downs syndrome). • It occurs in about 2-10 per 10,000 males . • Intellectual disability may be mild, moderate or severe . • In most cases there are craniofacial characteristics (prominent forehead, large jaw and prominent ears) and orchidomegaly. Fragile-X-Syndrome An Archetype of a common cause of Intellectual Challenge which could present covertly. • Chromosome analysis using a special culture medium, reveals a fragile site in the long arm of the X chromosome. Fragile-X-Syndrome An Archetype of a common cause of Intellectual Challenge which could present covertly. • Fragile-X-Syndrome: • The disorder is inherited as an X-linked recessive condition. • In most but not all carrier females, the fragile site could be demonstrated and up to 35% have a mild intellectual disability. common cause of Intellectual Challenge which could present covertly. • The chromosome abnormality is not always apparent in carrier females and a few females inherit the abnormality from asymptomatic fathers with the abnormal X chromosome. • In some cases there is the typical family history with or without the physical characteristics, but no chromosome abnormality. Autism: • Autism is a developmental disability in which the principle impairments are in social communication. • The prevalence is 2-4 per • 10000 and it is 2-4 times more common in males than in females. • The diagnosis is made when there are characteristics abnormalities in each of the following areas. Autism: • [1]-Language delay: • Autistic children have got a minimal use of speech and echolalia. • [2]-Restricted Social Interactions: • Autistic children usually have compromised and poor eye contact, aloneness, aloofness, difficulties in relating to peers. Duchenne muscular dystrophy: • About 10-15% of male children with muscular dystrophy have an intellectual disability which may cloud the clinical presentation. • A serum creatinine phosphokinase estimation should be considered in all boys not walking by eighteen months. Neurofibromatosis and Tuberous Sclerosis: • Both conditions are caused by autosomal dominant genes. • They vary considerably in severity, have dermatological manifestations and may be associated with intellectual challenge Dysmorphic syndromes: • There are a large number of rare, sporadic conditions in which characteristics patterns of malformations are usually associated with intellectual challenge. • The commoner of these are Cornelia de Lange syndrome; Prader-Willi syndrome and Soto’s syndrome. The Effects of Intellectual Challenge: • Children who have intellectual disabilities share with all children a potential for growth and development, individual aspirations and susceptibility to environmental factors. • They need even more nurturing, tolerance and education from their parents, caregivers and society than their nondisabled peers. • Their intellectual impairments manifest as delays in psychomotor development, behavioural difficulties or immense challenges with education. The Effects of Intellectual Challenge: • Intellectual disability is associated with developmental delays, difficulties in acquiring new skills, communication impairments and social adjustment problems. • Children with mild intellectual disability often do not present until school age when they have major problems with learning to read and write and difficulties with social and interpersonal skills. • As adults they can be expected to be capable of living independently and maintaining a job in open employment .Difficulties with reading, writing, handling money and interpersonal relationships are likely to persist. The Effects of Intellectual Challenge: • They could be expected to have greater difficulties with • Educational learning & • May require specific teaching to: • Master basic social skills such as: • Dressing • Feeding • Cooking • Using public transport & • Living independently. As adults they will be capable of : Productive employment & Independent living Although some ongoing support is likely to be needed. The Effects of Intellectual Disability: Children with severe and profound intellectual disabilities will often have little or no speech They may require considerable assistance with dressing and feeding. They are capable of mastering new skills but their progress will be very slow. The Effects of Intellectual Disability: • Approximately two-thirds of all children with intellectual disabilities have additional impairment of vision, hearing or motor function. • Epilepsy is common and occasionally could be recalcitrant or Intractable. • For all these children family stress, limited education, social rejection and sensory deficits may result in additional secondary disabilities. The Effects of Intellectual Difficulties For the Family: • For the Family: • The realization that their child has a disability is a major grief stress. • Amongst the common manifestations of their grief are guilt and denial. These are often manifested by seeking multiple opinions and unorthodox treatments. The Effects of Intellectual Difficulties For the Family: • Anger is common and is often directed at doctors and hospitals. • Occasionally there may be rejection of the child. • Parents have to come to terms with their grief whilst simultaneously coping with a difficult child. The Effects of Intellectual Difficulties For the Family: • Friends, relatives, doctors and other professionals are not always sensitive to their needs and coping with this is an additional burden. • Many families will be forced to change their lifestyle and career plans. The Effects of Intellectual Difficulties For the Family: • Usually, mothers are expected to carry the major caring burden and find it difficult to pursue a career and at the same time care for a child with an intellectual disability. The Effects of Intellectual Difficulty For the wider community: • For the wider community: • IC at a prevalence rate of 1-3% and a move away from segregated services implies that most people will have some contact with a person with an intellectual disability at the community level. • Consumer pressure and public conscience increasingly demand tolerance, acceptance and material contributions from all sections of the community. The Effects of Intellectual Difficulty For the wider community: • Human services such as: • child care. • Kindergartens. • Schools. • Transport. • Libraries & • Recreation facilities • If established for children and families are expected to adapt to meet the needs of people with intellectual disabilities. Management: • Family Support: • Parents need to be told that their child has an intellectual disability • Openly • Accurately & • Sensitively. • Where doubt exists this should be discussed & • where appropriate, a 2nd opinion sought. • Often parents seek a 2nd opinion & this should be supported. • Stressful information should be given with both parents present. • Written material should be provided & the information repeated at follow-up meetings with the family. Management. • Many parents find it helpful to talk with other families, who have a disabled child and there should be parent to parent programmes to facilitate this. • Later on: • Drop-in centres • Toy libraries • Disability support • Advocacy groups & • Respite care will be used. • Programmes should aim to facilitate interaction between families who have a disabled child &other families in the community to provide further support. Management. • Income support, assistance with health care costs and subsidized home support will be available to many families. In some circumstance, most families who have a child with a significant intellectual disability are eligible for the child disability allowance. • Transport subsidies, in-home assistance, free or heavily subsidized orthotic equipment, wheelchairs and special seating are also available. Children’s Services: • The pattern of services provision in children with intellectual disabilities is changing. • Increasingly play groups, kindergartens and schools which encourage integration of children with intellectual disabilities with non-disabled children are replacing segregated facilities. • Integration is based on philosophies of human rights and normalization. Children’s Services: • Normalization evolved in the Scandinavia in the 1960s. • It stresses individual • Dignity • Choice & • The value of the same everyday activities & routines for • Disabled people as are experienced by non-disabled people. Children’s Services: • Segregated services which offer more specialized interventions, amore tolerant environment and higher staff ratios are still seen as more appropriate for some selected groups of children. Few data based principles are available to guide families in the selection of appropriate services. • It is helpful to look at the philosophies and professional standards of the service. Children’s Services: • In general, services which: • [a]- are sufficiently flexible to respond to the child and family’s needs • [b]-acknowledge the value of normal life experiences, the importance of the family and interaction with nondisabled children • [c]-establish management aims and monitor progress, are the most likely to be helpful. Residential Care in Respite Homes • Many families will benefit from short-term residential care Some family will need long-term residential care for their children. • If parents feel that they cannot care for their child at home it is seldom effective or helpful to attempt to persuade them otherwise. Residential Care in Respite Homes • Parents should be assisted to find the option that best suits their needs. • Foster care (both short& long term) • Adoption • Small community based residential houses • Nursing homes & • Larger residential units • May be available to meet these needs. The doctors (physician’s role) • The doctors (physician’s role) • Many professionals, including teachers, therapists, social workers and psychologists have useful contributions to make to children with intellectual disabilities. • Doctors, who are usually the pivotal figures in the early diagnostic phases, should be well informed about child and family services so that they can properly advice families. • They will need to be aware of associated conditions such as epilepsy, sensory deficits and cardiac anomalies and ensure that they are detected early. The Specialized Roles of The Clinicians • As the child grows older: • The doctor’s role will be less pivotal & central • But rather becomes more peripheral. • However, there still will be a need to treat: • Associated conditions• Intercurrent illnesses- • Provide information- & • Advice to families. • The Clinician may also be asked to assist the child & • Family as an advocate for appropriate services. Prevention of Intellectual Difficulties • Prevention: • The cornerstone of prevention is • Accurate understanding of the causes of intellectual disability in the community. • Without this data • Prevention planning must be based on assumptions drawn from studies on populations that may or may not be similar. • Thus Monitoring the Efficacy of Prevention Strategies will be difficult. • Detection of Families at High Risk of Genetic Abnormalities. • Followed by Genetic Counselling & • Intrauterine Diagnosis will prevent a small number of cases. Prevention of Intellectual Difficulties • However, it must be appreciated that the majority of infants with genetic abnormalities, • Are born of families who were not considered to be at high risk. • Measures to reduce Alcohol & Cigarette consumption are likely to reduce mild intellectual disability. • Further Research &Continued Monitoring of Birth Defects &Potential Environmental Teratogens are needed to identify new & unknown cases. Prevention of Intellectual Difficulties. • Immunisation programmes, particularly those against measles and rubella will reduce cases due to these agents. • Improvements in antenatal and neonatal care and measures to ensure that these services are accessible to all sections of the community are likely to have a small effect. • Further reductions in this area must await research leading to the prevention of prematurity. • Neonatal screening for treatable conditions is already preventing most cases of intellectual disability due to Phenylketonuria and hypothyroidism. Prevention of Intellectual Difficulties. • Traffic management. • Bicycle helmets. • Seat restraints. • Drink-driving legislation. • Swimming Pool Safety Regulations & Measures to reduce child abuse • Will reduce Intellectual Difficulties due to Acute Traumatic Brain Injury. • Continued Improvements in • Community Education & • Standards of Living are likely to be associated with a Reduction in • Incidence, particularly of Mild Intellectual Disability. Prevention: • Often parents of children with intellectual disabilities suffer unnecessary hardships as a result of unduly and unguided inappropriate reassurance. Routine Medical Check up for ICC such as Trisomy 21. • Like all children IC children besides the routine immunization and infant and child welfare clinics which could be differentially modified for them. • ICC Should have routine interval general and specific multidisciplinary specialty focused medical check ups. Routine Medical Check up for ICC such as Trisomy 21.(Indepth Historical Interview of Parents and Older Child. • Child and Parents Complaint • Focused tissues ,Organs Systems Systematic Inquiry • Inspection of : • Childs Immunisation & • Childs Welfare Cards. • Developmental Diaries. GENETICS COURSE OUTLINE OVERVIEW • MEDICAL GENETICS IS THE BRANCH OF MEDICINE THAT INVOLVES THE DIAGNOSIS AND MANAGEMENT OF MEDICAL DISORDERS. • MEDICAL GENETICS DIFFERS FROM HUMAN GENETICS IN THAT HUMAN GENETICS IS A FIELD OF SCIENTIFIC RESEARCH THAT MAY OR MAY NOT APPLY TO MEDICINE ,WHILE MEDICAL GENETICS REFERS TO THE APPLICATION OF GENETICS TO MEDICAL CARE . • FOR EXAMPLE, RESEARCH ON THE CAUSES AND INHERITANCE OF GENETIC DISORDERS WOULD BE CONSIDERED WITHIN BOTH HUMAN GENETICS AND MEDICAL GENETICS,WHILE THE DIAGNOSIS ,MANAGEMENT ,AND COUNSELLING PEOPLE WITH GENETIC DISORDERS WOULD BE CONSIDERED PART OF MEDICAL GENETICS. • IN CONTRAST ,THE STUDY OF TYPICALLY NON-MEDICAL PHENOTYPES SUCH AS THE GENETICS OF EYE COLOR WOULD BE CONSIDERED PART OF HUMAN GENETICS ,BUT NOT NECESSARILY RELEVANT TO MEDICAL GENETICS (EXCEPT IN SITUATIONS SUCH AS ALBINISM) GENETICS COURSE OUTLINE OVERVIEW • GENETICS COURSE OUTLINE OVERVIEW [B]-Genetic such as but not limited to [i]-Fragile-X-syndrome [ii]-Tuberous s [iii]-Neurofibromatosis [iv]-Metabolic disorders. THE ESSENTIAL ELEMENTSand OF storage MEDICAL GENETICS orphic syndromes [D]-Prenatal Infections [E]-Teratogens such as Drugs an