Healthcare Transition in Persons with Intellectual Disabilities - Literature review Example

Intellectual disability (formerly mental retardation) Intellectual disability is the presence of incomplete mental development characterized by the deterioration of concrete functions at each of development stage. The overall level of intelligence is affected though cognitive, language, motor and socialization functions. Although almost 40% to 50% of the causes of intellectual disability is not known, the few known cases can be grouped into four categories (American Psychiatric Association, 2000). These are genetic, acquired, environmental and sociocultural. In genetic factors, it involves chromosomal or hereditary disorders. Due to the translocation of chromosomes 21 and 15, which cause Down syndrome in newborns, which statistics show occur in 15 of every 10000 births. Other related intellectual disabilities caused by chromosome disorder are the fragile X chromosome syndrome, lesch-nyhan syndrome and rett syndrome among others. On the other hand, intellectual disabilities are acquired through hereditary factors. It can be passed from a parent to a baby. These hereditary factors include galactosemy, Tay-Sachs disease, phenylketonuria, Mowat-Wilson syndrome among others (American Psychiatric Association, 2000; Fernald, 1912). There are acquired factors that also cause intellectual disabilities and these can be grouped into two groups: Congenital and developmental factors. Congenital factors are those that acquired through the infected parent’s body. These infections can be through metabolic, neonatal hypothyroidism, intoxication through lead poisoning, fatal syndrome or prenatal exposure to lethal substances and infectious body diseases like syphilis, toxoplasmosis among others. On the other hand, developmental factors include those infections that are acquired during prenatal period where pregnancy complications such as toxemia could arise leading to intellectual disability (Schrander-Stumpel, et al, 2007). During prenatal period, complications such as prolonged fetal suffering with neonatal anoxia could also lead to intellectual disabilities. Also during postnatal period, complications such as encephalic traumatism and infections could also lead to intellectual disabilities. Lastly, it has been researched and proven that environmental and sociocultural factors can cause intellectual disabilities. Poverty opens up a wide exposure to environmental and psychosocial factors to the infants. Poor prenatal, perinatal and postnatal health care can lead to intellectual disabilities as well. The above factors are just a few of the known causes of intellectual disabilities though to date, most causes are still unknown and still being researched (American Psychiatric Association, 2000; Schrander-Stumpel, et al, 2007). With different intellectual disabilities, the symptoms differ from one disability to the other with most common characterized by limitation in communication, personal care, home life, self-governance, leisure time, work, academic skills, health and safety and lastly limitations in social life (Schrander-Stumpel, et al, 2007). While these are common characteristics, there are those particular characters that are observed with a particular disability. With the genetic disorders in the fragile X syndrome, a person’s brain is affected, hence, displaying characters associated with autism, which include poor eye contact, anxiety, sudden mood change and hand flapping (American Psychiatric Association, 2000). Although it is rare, it affects both males and females. In the case of Phenylketonuria, it leads to corrosion of myelin in the brain exhibiting signs of epilepsy and neurological problems. There are symptoms of autistic disorder and hyperactivity in the case of Bourneville as an intellectual disability. Lastly, on genetic etiology, there is Lesch Nyhan syndrome, which allows excess flow of uric acid. It is characterized by self-mutilating behaviors like finger, lip biting, and makes the victim more aggressive towards others (American Psychiatric Association, 2000). On the side of chromosomal disorders, intellectual disability like Down syndrome shows characteristics like development of flat nose, slanted eyes, pleasant personalities and the victims tend to smile and in a good mood most of the time (Schrander-Stumpel, et al, 2007). There is also Prader-Willi syndrome that is a paternal chromosome disorder. Obesity, small hands, feet and genitalia characterize it. In addition, the victims also have obsessive-compulsive behaviors, fits of rage and they scratch themselves. Jerky movements, long face, prominent jaw, flattening of occipital region, deep set eyes and microcephaly are characteristics of Angelman syndrome which is a disorder of chromosome 15 (Schrander-Stumpel, et al, 2007). Only a few countries have put in place legislation to deal with intellectual disabilities, hence, many citizens especially of third world countries still suffer a great deal. It takes a lot of time for even both the doctors and the parents to intervene since in most cases the disability is diagnosed at a later stage (American Psychiatric Association, 2000). This is contributed by the fact that little is known about intellectual disability; there is lack of training and infrastructure to deal with intellectual disabilities in hospitals, stigmatization and discrimination of the affected parents delays self-acceptance that is very essential in dealing with intellectual disabilities (Schrander-Stumpel, et al, 2007). Despite all the challenges, there are still a few methods that could be used to diagnose the intellectual disability within an individual. In the case of Down syndrome, the disabilities characteristics are evident at the time of birth, hence, giving the parents and doctors opportunity to diagnose the problem at an early age. After accepting, it becomes a little easy to deal with the disability on the part of the parents as well as the society. Intellectual disability can also be diagnosed by limitrophe. This involves consideration of intelligence quotient (IQ) of an individual, which should be between 70 and 85 points range. It has limitations in a way that diagnosed victims feel the economical, work and school competitiveness as compared with the normal people with average IQ (American Psychiatric Association, 2000). On the part of clinical diagnosis, it helps in both diagnosing and prevention by giving health care during the prenatal, perinatal and postnatal period, which is an important stage to the intellectual disability prevention and detection at early childhood (Schrander-Stumpel, et al, 2007). Here secondary abnormalities, congenital malformation and behavioral phenotype are evaluated. In the case of intellectual disability being detected, further recommendations are given for further tests or analysis. In addition to metabolic clinical evaluation, high-resolution cytogenetic studies could also help. In the case of normal results from the above clinical tests, fluorescence in situ hybridization is requested which involves evaluation of the entire subtelomeric region. If still there are no abnormalities detected, then submicroscopic chromosomal disorders are also evaluated and tested for any genetic abnormalities (American Psychiatric Association, 2000). This gives accurate results needed for the condition and avoids guessing. In the case of abnormality in the occipitofrontal circumference of the head, neuroimages are used. They are used in the case when a particular neuroanatomical effect exists or in the case when parental history shows existence. On the other hand, metabolic screening can also be used in the test for intellectual disabilities by testing the urine for amino acids, organic acids, oligosaccharides and uric acid (American Psychiatric Association, 2000). Defects in the distal cholesterol pathways can also be detected by dienesterol and dehydrocholesterol for total cholesterol. It should also be noted that although characteristics of intellectual disabilities may be similar in a way, their diagnosis should be differentiated to find the right curative procedure for a particular disability. It is true that some therapeutic procedures are similar in terms of social and inclusion programs. The result could be different and that is why the diagnosis should be given more priority and done with care to avoid confusion and more delays in the health care (Schrander-Stumpel, et al, 2007). This ensures that the person is given the care that is needed. Although it is a fact that intellectual disabilities have no known cure, it is still important for prognosis, which helps develop and prepare individuals’ mind as well as the entire community for equal interrelation (Schrander-Stumpel, et al, 2007). It is important especially to the parents to accept and live with the fact that their child has a disability. Medical personnel should help them cope with the situation and give guidance as well as the required health care. On the other hand, with the parents’ acceptance it also becomes easy for a community as a whole to accept and give social support to the entire family. This removes the stigma and the issue of isolation with the community involvement in the family’s health problems (Agran, 1997). The society as a whole also helps parents cope up with the idea of not having an abnormal child by accepting and involving the child in normal community activities such as group activities and so on. In this way, although the affected child cannot perform everything as other normal children or people, they can still achieve their dreams and goals as normal people do. To achieve all these, three factors are of importance (Schrander-Stumpel, et al, 2007). Parents have to accept the fact that they have a child with an incurable problem and learn to live with that. Second, the age to start the required therapy is essential so as not to delay the required health care. The therapy program should include grouping to give a sense of belonging to the affected. Lastly, the victims should be given affection just as other normal children or people in the society by both the parents and society as a whole. This shows them that despite their shortcomings, to both the parents and the society they are still valued, loved and cared for. These three aspects also gives the victim strength and knowledge to learn to be dependent in a way that they can at least look after themselves health wise and socially too (Schrander-Stumpel, et al, 2007). Most intellectual disabilities like cognitive disabilities are not curable although they require diagnosis and proper observation to normalize the victim’s behavior in accordance with the normal behaviors and the society’s expectations (American Psychiatric Association, 2000). This early intervention is of great positive therapy outcome like in the case of cerebral plasticity, which is most essential in the first five years of the therapy that could bring positive changes to the child. Educational skills are of importance to the victim to achieve self-reliance as an adult and be independent. Community grouping and interactions of persons with the same problems also create a feeling of belonging, which is also a moral support that they are not alone in such kind of disabilities (American Psychiatric Association, 2000). This is important in helping the person grow socially by interacting with others since he or she feels appreciated. A feeling of belonging for intellectually disabled people is a major factor that contributes to their general wellbeing (Schrander-Stumpel, et al, 2007). Depending on the age of the disabled child, some treatment can be applied and make a difference depending also with the treatment application age (American Psychiatric Association, 2000). Like during the age of two years and below, disorders in muscular tone and motor development are treated through motor therapy while integration therapy treats disintegration that always accompanies motor disabilities. On the other hand, language therapy is used to treat linguistic development disorders and articulation therapy treats muscular tone alterations (American Psychiatric Association, 2000). On individuals with two years and above, almost the same therapy methods are used but there is additional promotion of perceptual abilities with deficits in schooling abilities. In the case of the adolescence, behavior therapy is essential as a health care guidance and it should focus on humanistic principles and not on aversion techniques. Treatment for comorbidities is done by pharmacological treatment with each specification with accordance to the disabilities criteria (American Psychiatric Association, 2000). In the near future, there may be many discoveries that could help with intellectual disabilities. These include recommendation and formation of programs that encourage independent living. They should guide one on how to accept, learn and integrate with the rest of the society. In addition, a prevocational program that touches on workplace and labor market should be encouraged to guide and prepare the victims on work related issues. With this in consideration, it can be possible to reduce the rate at which intellectual disabilities are caused or spread. This could be achieved through proper education, early diagnosis and proper health care that are recommended. On the side of parents, they still hold a major role to play in the situation since they have to accept the disability of their child, support and guide the child throughout without discrimination (Schrander-Stumpel, et al, 2007). Both regular and special education teachers have intervention roles to play in the lives of these young disabled students. While a regular teacher has a responsibility to make the intellectually disabled student as comfortable as other normal students without any form of discrimination. These things are achieved by integrating together both normal children and the intellectually disabled children to create the atmosphere of equality and competitiveness (Schrander-Stumpel, et al, 2007). On the other hand, the special teacher has a responsibility to provide special services in accordance with the disability. These could include psycho educators, speech therapists and psychologists that in turn would help the student in the near future. Lastly, second language learners have had various positive implications to the intellectually disabled. This is actually a teaching in different learning style unlike the normal teaching in normal schools. The students are taught in accordance with the nature of their disability and, hence, they can still achieve their goals since they learn through ways they can understand best (Bundey, et al., 1985). References Agran, M. (1997). Student -directed learning: Teaching self-determination skills. Pacific Grove, CA: Brookes/Cole American Psychiatric Association (2000). Diagnostic and Statistical Manual of Mental Disorders (4th Edition, text revision) Washington, DC: American Psychiatric Association Bundey S, Webb TP, Thake A. & Todd J. (1985) A community study of severe mental Retardation in the West Midlands and the importance of the fragile X Chromosome in its aetiology, J Med Genet; 22(4):258-266. Fernald, W.E. (1912). The Burden Of Feeble -Mindedness, Journal of Psycho-Asthenics, vol.17, no.3, pp.87-111. Schrander-Stumpel CT, Sinnema M, van den Hout L, Maaskant MA, van Schrojenstein Lantman-de Valk HM, Wagemans A, Schrander JJ, Curfs LM. (2007). Healthcare transition in persons with intellectual disabilities: general Issues, the Maastricht model, and Prader-Willi syndrome. Am J Med Genet C Semin Med Genet; 145(3):241-247. Read More