People with Intellectual Disability and Their Accommodation - Term Paper Example

People with Intellectual Disability and Their Accommodation Introduction Intellectual disability forms a specialized branch under the field of reference that is cumulatively known as ‘developmental disabilities,’ and which comes under the consideration of healthcare/medical sciences. Developmental disability pertains to certain impairments in a person that may be mental, physical, or both, which is generally life-long, and evinced in a person before he is 18 years of age. Often termed as ‘developmental delay’, it is a misnomer, as the afflicted person does not procure, at any stage of life, the normal and functional skill levels of an average healthy person. Developmental disability can be best defined as “a substantial handicap in mental or physical functioning, with onset before the age of 18 and of indefinite duration” (Dorland’s Medical Dictionary, D, 2010). Intellectual disability, a part of this vast subject called developmental disability, is the impairment of the intellectual and cognitive functioning of an individual, which is manifested during the early developmental years. Though WHO in 1992, and American Psychiatric Association in 2000, in their publications had termed this impairment as ‘mental retardation’, worldwide, especially in most English speaking countries, it is referred to as ‘intellectual disability” . An affliction of one’s mental capabilities, this impairment is “amongst the most vulnerable and socially excluded in our society’, and sets out four key principles – rights, independence, choice and inclusion – for improving their quality of life chances (Secretary of State for Health, 2001). Since this disability does not match with our so called conformed ‘social rules and norms’, it is extremely difficult to include such individuals within the realms of our society. This group forms one of the most marginalised coterie of people who do not seem to belong anywhere, yet ironically, it is this group of people known as the ‘mentally retarded,’ who need the maximum attention and empathy from all social quarters. This article will examine from close quarters this disorder known as intellectual disability, which even a few years back turned an afflicted individual into a social pariah. It will find out as to how such people can be included and accommodated into our normal social lives, yet receiving the special care and attention that they always require for their survival. Discussion In recent times we have observed a rise in the number of debates over such socio-medical issues, as dealing with people having some sort of a disability. A very sensitive topic, this entire subject needs a thorough viewing, albeit with a different perspective that does not conform to the age old, narrow minded social outlook. Definitions and a general concept of Intellectual disability: As we start the discourse on intellectual disability, the first question that comes within our scope is: how can we define the term ‘disability’? Disability is a broad term that is more socially defined, and translates into what others view and interpret as impairment within an individual (Braddock & Parish, 2002). So a disability is always viewed from the context of a certain fixed social and traditional mindset, whereas impairment is looked upon as a medical condition. In this context Davis in 2000 had commented that “disability is not so much...the presence of a physical or mental impairment as is the reception and construction of that difference...an impairment is a physical fact, but a disability is a social construction” (Davis, 2000, 56). Mercer in 1992 gave us certain very interesting models on the relationship between disability and society as whole, where he theorized that disability models depended on certain assumptions, values, and the predominant beliefs of the people about the nature of the society to which they belong, taken at a particular time period. A homogenous society consists of certain values and beliefs that are based on a common traditional and cultural background. To belong, a member must first conform to the rules laid down by this society, and then take up roles that go hand in hand with the fixed social values and norms. Here any sort of deviance from the practiced norms is harshly repressed and considered to be a potential danger to its homogeneity. A heterogeneous society on the other hand, consists of conflicting members that are fighting hard for their dominance (political and economic); where the minority members must especially fight to get their just dues (like those physically or mentally disabled). Though there are varying degrees of conflicts in a heterogeneous society, it is a much better alternative where one can fight for his rights, civil and political. A homogenous society does not offer such scopes for fighting for one’s own rights. In the recent times it is indeed heartening to notice that our society is slowly moving towards a more heterogeneous form, with general levels of tolerance and understanding increasing among the general populace, to accommodate within the social coliseum more people with such physical and intellectual disabilities. Intellectual disability, as Clarke, Clarke and Berg in 1985 tells us, is not any one specific illness or disease type. It is more of a dynamic condition that is related to the malfunctioning of the cognitive and adaptive faculties of an individual, and cannot be labeled as a static disorder. Intellectual disability has no single cause, system of diagnosis, or a process of treatment, and is a result of various etiologies that may occur separately or even simultaneously within the afflicted individual. This condition, though recognized from as early as the 16th century (in 1534 Sir Anthony Fitzherbert first applied the terms ‘sot’ or idiot for an individual who could not recognize his parents or failed to count 20 pence), it was only during the recent years that an-depth exploration was conducted into the subject and intellectual disability defined in more logical and objective terms. Here we will take into account the various definitions provided by the World Health Organization, American Psychological Association, the American Psychiatric Association, and the American Association on intellectual and developmental disabilities, to get a better perspective and comprehension of this disability. The World Health Organization in the International Statistical Classification of Disease and Related Health Problems (CIM-10), proposed a new definition for the term intellectual disability which ran as follows, “a condition of arrested or incomplete development of the mind, which is especially characterized by impairment of skills manifested during the developmental period, skills which contribute to the overall level of intelligence” (WHO, 1992). In the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR, 2000), a definition of intellectual disability is provided by the American Psychiatric Association, “Significantly subaverage general intellectual functioning that is accompanied by significant limitations in adaptive functioning in at least two of the following skill areas: communication, self-care, home living, social/interpersonal skills, work, leisure, health, and safety. The onset must occur before age 18 years” (American Psychiatric Association, DSM-IV-TR, 2000). The American Association on intellectual and developmental disabilities in 2002 gave a definition which ran as follows: “Mental retardation is a disability characterized by significant limitations both in intellectual functioning and in adaptive behaviour as expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18” (American Association on intellectual and developmental disabilities, 2010). American Psychological Association in their manual, as written by Jacobson & Mullick (1996), describes 3 conditions, on the manifestation of which one may be diagnosed as having intellectual disability. These are: 1) noticeable constraints in the normal functioning of one’s intellectual faculties; 2) along with this the individual must also show noticeable constraints in his adaptive skills; 3) both the symptoms must manifest it-self before the individual reaches the age of 22. As per the authors, there are 4 degrees of intellectual disability: profound where IQ < 25, severe where IQ level is 20-35, moderate where IQ is 35-54 and mild where IQ is 55-70. From the above definitions certain points stand out very clearly: this disability affects the cognitive (intellectual) and adaptive skills of an individual, and its onset takes place mainly during the developmental years of an individual (before 18 years of age). Etiology of intellectual disability: Etiology, which refers to the known causes for any human affliction, in this case of intellectual disability fails to give any specific answer. It is estimated by most researchers that around 50% of the causes for intellectual disability in an individual still eludes our general comprehension (L’abbé, Labine, Lemieux & Lespinasse, 2004). Tassée, Havercamp & Lecavalier, in their research papers reported that around 1% to 2% of the entire population was generally seen to be affected by this intellectual disability. A close examination of various research papers on this topic will reveal that there are 4 main factors that cause this disability. These are: genetic factors; biological factors; chromosomal factors; and environmental causes (Tassée, Havercamp & Lecavalier, 2002) Genetic factors: This factor is passed from the parent to the child right at the time of conception. The most recurring genetic disorders known to occur in those persons with intellectual disability are tuberous sclerosis, Lesch-Nyhan syndrome, phenylketonuria, fragile X syndrome, and Bourneville’s disease. Of these, fragile X syndrome has been known to be the most common disorder, and is caused by a genetic mutation of the X chromosome (the FMR1 gene). This mutation stops the protein production, necessary for brain development in the pre and postnatal stages, leading to intellectual disability. In the case of tuberous sclerosis or Bourneville’s disease, there is a presence of a benign outgrowth or tumor which leads to disorder in the process of cell differentiation. In the Lesch-Nyhan disorder there is a malfunctioning of the HRPT enzyme, owing to which purines are synthesized, and there is an excess of uric acid within the body. In Phenylketonuria (PKU) there occurs a disorder in the amino acids metabolization process, leading to accumulation of large amounts of phenylalanine hydroxylase enzyme, within the body. This enzyme destroys the myelin sheath within the brain, causing extensive damage, thus leading to the condition of intellectual disability. Biological factors: This factor affects an individual just before, during, or just after the birth. Prenatal causes include certain contagious diseases like measles or rubella that comes from the mother, or if there are ingested toxins like mercury, or even as an after effect of certain medicines. Chromosomal factors involve disorder in the pattern of chromosomal arrangements, resulting in various intellectual disabilities like Down syndrome (there is an extra chromosome in the 21st chromosomal pair), Angelman syndrome (disorder of the 15th maternal chromosome ) and Prader-Willi syndrome ( disorder in the 15th paternal chromosome). Environmental factors are the ones that to some extent are under our own control. These factors involve conditions like poor nutrition of the mother and child during pregnancy, over abuse of narcotics and other drugs and alcohol, and the complete absence of an efficient health care system. Individuals with Intellectual Disability and Their Accommodation: In the earlier days and to some extent even today, individuals with intellectual disabilities found themselves relegated into hospitals or nursing homes, which were broadly termed as institutions, and sometimes in worst possible cases, even landed in prisons and refugee camps too. The conditions in such institutions were inhumane, to say the least. There were too many patients crowded together in one building, with little trained staff to handle such special cases, and the concept of privacy for the institutionalized patients was simply not there. These places were extremely unhygienic and the entire institution was ruled with an iron hand (more on military lines) by a single authoritarian head (Wolfensberger, 1969). With changing times, though the concept of institutionalization still remains, such harsh conditions have given way to much better specialized facilities in the modern times. In the last few decades, we have seen the concept of normalization (Bank-Mikkelsen in Denmark; Nirje, 1969 in Sweden; and Wolfensberger, 1972 in USA) slowly taking shape. According to this concept we need to approach individuals with intellectual disabilities in a very special manner, where their living conditions are made as normal as possible. It is in the abilities of the afflicted person that one has to accentuate upon, while expunging the social hindrances from his path. This concept of normalization, which brought about a revolution in the field of accommodation of patients with intellectual disabilities, was first defined by Bank-Mikkelsen, where he theorized that there are chances of a better treatment of an individual with intellectual disability, if he is taken into the scope of our normal social lives, while also acknowledging his limitations. This view has later been endorsed by many other scholars like Bengt Nirje (1969), Dionne et al. (2002), in their various research articles. So it means that the most effective way for accommodating such people, is for the society is to accept them as normally as possible, while the later in turn also adapts to the normal social conditions. Wolfensberger in 1991 came up with further enhancements on this subject which gave rise to the principle of social role valorization (SRV) which is based on the application of scientific principles on the establishing, developing and contending the ‘valorised social roles’ for a person with intellectual disability (Dionne et al., 2002). We will now take a closer look at what constitutes under social assimilation and support for such individuals with intellectual disabilities. Social assimilation and support: There are various kinds of social obstacles that a person with intellectual disabilities may face while trying to cope with a normal life. One major problem is the availability of suitably adapted houses for such patients. There are also other problems that include lack of suitably modified transport, problems in handling bank currency notes, and also operating normal every day electrical gadgets like the television, microwave, and washing machine, amongst many others. So in such cases staying alone for an intellectually disabled individual is not the solution, and ‘social integration’ here means the active involvement of the community as a whole. As Anderson tells us, “Rather than build better individual housing...we need to build better communities that are more able to fulfil the needs and provide valued roles” (Anderson, 2009). Social integration also involves providing the afflicted person with assistive education follow up, which involves specialized caregivers teaching the individual various skills necessary for leading their daily lives while at home, at the office, in school, and while at leisure. There are also various accompaniment services that can be given to such individuals where he can work individually, or in a group, as per his requirements. To give respite to the family members of such people involves providing residential services for the afflicted member. Doctors and nurses and other associated health professionals have to be specially trained, sensitized, and made aware of special intervention activities, to tackle such patients effectively. Since this is developmental problem, there are children of various ages who suffer from intellectual disabilities. Each group has to be tackled differently. Children in age group 0-5 years require the individual service plan or ISP, and an early intervention. Baby sitting services are also necessary for this age group to provide some sort of respite for the parents. For the age group 6-12, it involves preparation for integration into the pre-primary and primary schools, while learning the various social skills necessary for such integration. The ages 13-18 years are far more complicated, as these involve the adolescent years where the teenager has to be taught to learn and adapt to certain skills necessary for leading a normal daily life. He must also be taught to adjust with friends, and use his time well, while at leisure. At this stage assistive education is also essential for the young adults to learn to cope with the pressures of daily life, adapt to a work place, and learn how to use the public mode of transport. The elderly people with intellectual disabilities also need assisted support to maintain the acquired skills necessary to lead their daily lives, in keeping themselves healthy and involved in various activities. Family support: This is the most important form of support that society can provide to such individuals. It has been seen that a family goes through under considerable stress after learning that the child has been diagnosed with intellectual disability. It is for this purpose many parental programs are arranged by both the government and various NGOs, to help parents cope with their stress. Intellectual disability being a life-long affliction, parental or familial support forms the biggest source of support for such individuals. Parents may have to make various adjustments like change jobs or even change homes, so that a good health care support system and a good school is within an easy reach. Other siblings may help the parents in taking care of the child, and learn how to cope with such cases. Parents may also join various support networks and other advocacy groups, to learn how to deal with such situations better, or teach other parents how to cope. Family support has been seen to the most effective support in 80% cases of individuals with intellectual disabilities. School integration and support: In this case there are two main views that work towards integrating intellectually disabled students within their school. One theory is by mainstreaming these children, while the other is by including them into the regular classes. In the mainstreaming process a student receives specialized education and training through counselors, psychiatrists, psycho-educators, and speech therapists. However the proponents of the inclusive theory claim that by mainstreaming such students, society paves way for further prejudice and the normal children should be allowed to mix freely with such intellectually disabled children. In inclusive classes, a school should be competent enough to handle such cases with proper administrative measures, transport arrangements and budgetary support. Regular class programs have to be modified to suit the need of such children, and there should be a different approach to teaching, through new methods like learning through activity, cooperative teaching, mastery learning, peer teaching, and multiprogramming. Teachers will have to be given special training to handle such children within a regular class. Follow up and close supervision must be done to check whether the process of transition and integration is working out well. Inclusive system of education is extremely difficult, and the parents of such children must be prepared to face a lot of negativity at the beginning. This form of school integration needs an active cooperation between the parents, school authorities, teachers, and other members of the community, like other children of the class and their parents. Job place integration: There are four major types of worker roles for a person with intellectual disabilities that can help them to be integrated into the work environment. These are: an individual practicum, that allows such people to work under normal or regular circumstances by giving them training to learn and develop certain basic work skills; in a sheltered work place where people with intellectual disabilities work in the production sector in an environment that is completely suitable to take care of their needs and wants; group functioning, where a group of individuals with intellectual disabilities would function together as a group to perform specific functions in a regular work environment; and the formation of competitive productive entities in the production sector that are mainly operated by individuals with intellectual disabilities. Barriers to effective early intervention: One of the major barriers to early intervention is the lack of communication between the parents and the affected child, especially in school going children. Parents may not notice that the child is having problems in school, trying to cope with different problem solving skills, not following basic social rules, having less than normal memory skills and showing a delay in learning the adaptive functions. In younger children, parents may dismiss certain symptoms like a delay in learning to walk or crawl or even sit, assuming that the child will learn with time. There is also another possibility where the parents may decide to keep quiet for the fear of their child being socially ostracized. Since it has been seen that mild or moderate intellectual disability if diagnosed early and treated effectively, may later in life allow an individual to learn everything necessary to live and earn independently. So here the parents and also the school teachers to some extent, play an important role in observing the progress of a child and communicating well with him to be able to diagnose any early signs of the condition, and going for immediate early intervention, if necessary. Conclusion Intellectual disability is not a disease of the mind as society once believed. It is simply a medical condition, which if treated early and effectively may even allow an individual to lead a normal life. What is essential in this case is an accumulative help from the community as whole, to allow the person integrate himself into the normal social life. It will not help, if an individual is shunned by the society, to be quietly put away in an institution, and consciously forgotten. What such people need are sympathetic help, understanding, and cooperation, to allow them to lead a normal regular life, in the likes of any other citizen. References American Psychiatric Association. (2000). Diagnostic and Statistical Manual of Mental Disorders (4th Edition, text revision). Washington, DC: American Psychiatric Association. American Association on intellectual and developmental disabilities. (2010). FAQ on intellectual disability. What is intellectual disability? Accessed at http://www.aaidd.org/content_104.cfm Anderson, P. (2009). The role of accommodation for people with disability in the Community Social Role Valorisation (SRV). Accessed at  http://home.people.net.au/~psawa/Theroleofaccommodationforpeoplewithdisabilityinthecommunity.doc. Braddock, D., & Parish, L. (2002). ‘An Institutional Disability of history’. In D. Braddock (ed.) Disability at the dawn of the 21st century and the state of the States. American Association on Mental Retardation, Washington D.C. Davis, L. (2000). ‘Dr. Johnson, Amelia, and the discourse of disability in eighteenth century’. In H. Deutsch and F. Nussbaum (eds.), “defects”: Engendering the Modern Body. Ann Arbor: University of Michigan Press, 54-74. Dorland’ s Medical Dictionary. (2007). Merck Source, Resource library-D. Elsevier Publication. Accessed at http://www.mercksource.com/pp/us/cns/cns_hl_dorlands_split.jsp?pg=/ppdocs/us/common/dorlands/dorland/three/000030411.htm Jacobson, J.W., & Mullick, J.A. (Dir.) (1996). Manual of diagnosis and professional practice in mental retardation. Washington, D.C.: American Psychological Association, Division of Mental Retardation and Developmental Disabilities. L’abbé, Y., Labine, R., Lemieux, N., & Lespinasse, J. (2004). Prévention du retard mental: Causes et conduites à adopter. Montréal : Éditions Sciences et Culture Inc. Secretary of State for Health (2001) Valuing People: a new strategy for learning disability in the 21st century – A White Paper. Cm 5086. London: The Stationery Office. Tassé, M. J., Havercamp, S. M., & Lecavalier, L. (2002). ‘Differential Reinforcement of Other Behavior’. In M. Hersen & W. Sledge (Eds.), Encyclopedia of Psychotherapy, Volume 1 (pp. 633-639). New York: Academic Press. Wolfensberger, W. (1969, January 10). President’s Committee on Mental Retardation, Washington, D.C. The Origin and Nature of Our Institutional Models. Accessed at Disability History Museum, http://www.disabilitymuseum.org/lib/docs/1909card.htm World Health Organisation. (1992). The ICD-10 Classification of Mental and Behavioural Disorders: Clinical descriptions and diagnostic guidelines (World Health Organisation, Geneva, 226. Read More