Support
of the Individual with Mental Retardation
by
Rachel Limon-Luckett
INTRODUCTION
Mental retardation is a general term used to describe an individual that has a significantly subaverage…intellectual functioning existing concurrently with deficits in adaptive behavior and manifested during the developmental period, that adversely affects a child’s educational performance"("General Information about Mental Retardation" 1). The Arc, one of the largest, most respected organizations concerned with issues of the mentally retarded reports the 1990 U.S. census estimated "6.2 to 7.5 million people (2.5 to 3 percent) have mental retardation"("Introduction to Mental Retardation" 1). Mental retardation is "10 times more common than cerebal palsy, 28 times more prevalent than…spina bifida…and affects 25 times as many people as blindness("Introduction to Mental Retardation "1). These demographics have no doubt contributed to the number of organizations such as The Arc and The President’s Committee on Mental Retardation (PCMR) dedication to issues affecting the mentally retarded and most specifically in the area of prevention. Research for the prevention of mental retardation is largely being focused on molecular biology and genetics. As advances continue in these studies, so does the ever rising cost of conducting this type of high tech research. As prevention of mental retardation is important for the future, of more importance are the present needs of the young and aging mentally retarded. Quality of life for these individuals can be hampered as money is filtered towards more research or delayed by beuracratic redtape. Funds must be used more efficiently to better provide for the educational and daily living needs of the "6.2 to 7.5 million" Americans that are being overlooked.
CAUSES OF MENTAL RETARDATION
Many causes have been found responsible for mental retardation, but the majority of experts agree most individuals have a chromosomal anomaly; and Down syndrome is a prime example of this type of genetic abnormality. ("General Information about Mental Retardation" 1; " Introduction to Mental Retardation" 1; Merck Manual 2259). "95 percent" of children born with Down syndrome carry three copies of the 21st chromosome, this is known as "trisomy 21"("About Down Syndrome" 1, "Down Syndrome" 1, Merck Manual 2233). It is not exactly understood why this cellular abnormality occurs but there is a direct correlation with this condition and " advancing age of the mother" at time of conception ("Down Syndrome" 2).
Other causes of mental retardation can occur in utero, during childbirth, and post partum. The ingestion of alcohol, drugs, and or nicotine by the mother during pregnancy are examples of causes of mental retardation that occur before birth ("Introduction to Mental Retardation" 3). Lack of nutrition and infections such as HIV, syphilis, and rubella affect the developing fetus during pregnancy ("Introduction to Mental Retardation" 3).
Lack of oxygen, trauma to the brain, and low birth weight of an infant at birth can cause mental retardation ("Introduction to Mental Retardation" 3). Causes of mental retardation after birth can encompass many childhood illnesses like measles and chicken pox. Meningitis, encephalitis, lead or mercury poisoning, and any type of traumatic brain injury also increases the likelihood of mental retardation due to disruption of the neurological system ("Introduction to Mental Retardation" 3, "General Information about Mental Retardation" 1). Most interesting if not disturbing, is the cause linked to poverty. Children living in low socio-economic conditions can become mentally retarded due to malnutrition, lack of proper medical care and unhealthy, filthy home environments. These children also seem to lack social, cultural, and intellectual stimulation, which can further cause a child to be mentally retarded ("Introduction to Mental Retardation" 3).
PHYSIOLOGICAL MANIFESTATIONS
To describe physiological manifestations of mental retardation one would have to describe each pathology associated with mental retardation and its general manifestations. Because the largest population of individuals with mental retardation have chromosome abnormalities, the physical features of Down syndrome will be discussed. It is important to add that these manifestations also aid the physician in making a clinical diagnosis of Down syndrome ("Down Syndrome" 1)
As described in The Merck Manual, the individual with Down syndrome present’s with " outer sides of the eyes slanted upward…bridge of the nose flattened, the mouth is often held open because of a large protruding tongue that…lacks the central fissure and ears that are small and rounded" (2235). The Merck Manual goes on to describe a single volar crease on the hands with differences in length of fingers and toes (2235). The Down individual is usually a shorter than normal child or adult, with decreased muscle tone, and joint instability caused by hypermobility ("About Down Syndrome" 3, "Down Syndrome: Public Health Information" Sheet 2). Congenital
heart disease exists in almost half of the individuals born with Down syndrome. Other problems may occur in the Down syndrome population such as those associated with the thyroid gland, gastrointestinal, auditory, and visual systems ("Down Syndrome" 3-4). Individuals with Down syndrome have "a 15 to 20 times greater risk of developing leukemia" and "25 percent or more" chance of developing Alzheimer’s over the age of 35 ("About Down Syndrome" 6). Children with Down syndrome are also more susceptible to patella subluxation, hip dislocation, and alantoaxial instability all due to joint hypermobility and unstable ligaments ("Down Syndrome" 3).
CLINICAL SIGNS AND SYMPTOMS
The most significant finding of the mentally affected individual is that of a low IQ (below 70-75) which limit their adaptive skills. According to the article "About Down Syndrome", "Most people with Down syndrome have IQ’s in the mild to moderate range of mental retardation level"(5). When referring to adaptive skills these are the skills which include activities of daily living needed for everyday survival which " include language, self-care, home living, social skills, leisure, health and safety, self direction, functional academics, community use and work" ("Introduction to Mental Retardation" 1, Merck Manual 2261-2262). Many of the physiological manifestations mentioned earlier are also signs and symptoms since many of the obvious physical features of a Down individual are indicative of the chromosomal disorder.
MEDICAL TREATMENT AND PROGNOSIS
The prognosis for the person with Down syndrome may be that of a decreased life span because of their increased risk of heart disease and leukemia (Merck Manual 2236). Through advances in medical care, people with Down syndrome are now living into their fifties and sixties ("About Down Syndrome" 5, Merck Manual 2236).
Currently, there is "no effective medical
treatment available" ("Down Syndrome" 3). Treatment is based mostly in
trying to establish a good learning environment. This early intervention
begins at infancy where the best chances stand at decreasing or even preventing
severe mental deficits (Merck Manual 2263). Counseling the family
to discuss causes, effects, prognosis, and treatment plan for educational
training of the child is key (Merck Manual 2263). Usually, a multidisciplinary
team approach is taken to best evaluate the disabilities of the child.
The team may consist of neurologists, orthopedists, and, of course, a pediatrician.
Physical, occupational, and speech therapists, as well as audiologists,
nutritionists, ophthalmologists, dentists, psychiatrists, teachers, and
social workers may all play intragel parts in the developmental and medical
welfare of the child (Merck Manual 2263).
PHYSICAL THERAPY TREATMENT
Physical therapy can be started as early as two months of age. This will include evaluations and developmental assessments. Treatments are highly individualized and specific to the deficits and needs of the patient. In the early intervention stage, importance is placed on helping the infant to reach developmental milestones and management of motor deficits ("Health Care Guidelines for Individuals with Down Syndrome" 3, Merck Manual 2263). Other treatments can involve "gross and fine motor activities, and instruction in cognitive development" ("Down Syndrome" 3). Physical therapy may be offered in school systems that receive government funds to pay for therapy services. Otherwise, parents may have to pay out of pocket or rely on insurance, which usually have limits to how many treatments will be paid for.
RESEARCH
According to the President’s Committee on Mental Retardation (PCMR),"Nearly 26 million, or one in ten families in the United States are directly affected by a person with mental retardation at some point in their lifetime" (1). In 1966, numbers like these startled Lyndon Johnson and by his executive order he had a committee formed "to focus on this critical subject of national concern"("President’s Committee on Mental Retardation" 1). Government acknowledgement has helped to increase the number of organizations that have been formed to combat mental retardation and the disabilities that accompany it. Many of these organizations are helping to fund the high cost of genetic research "in hope of someday preventing Down syndrome…caused by abnormalities in the number or structure of chromosomes" ("Down Syndrome: Public Health Education Information Sheet" 4). As these are wonderful goals, the quality of life of individuals who currently have Down syndrome or other causes of mental retardation are not entirely being met.
Currently there are "350,000 families…affected by Down syndrome" and " approximately 5,000 children with Down syndrome being born every year" ("About Down Syndrome" 5). Individuals with Down syndrome are living longer and it is predicted "the number of people with Down syndrome will double in the next ten years" ("About Down Syndrome" 5). With this type of population increase expected, it is imperative we do something to assure that the needs of individuals are being met now so that we do not face an even bigger problem later.
According to Julie Ferguson, Special Education teacher for Mesa Public Schools, there are many provisions that her students are without due to lack of "funding". Ferguson provided the examples of lack of therapy services offered to her students, high turnover rates among special education teachers, and long waiting lists for community living. Physical Therapy services are sometimes only offered to the "most severe cases" of mentally retarded students, while other students who are not as severely impaired but clearly in need of therapy services will go without. She goes on to explain that most of the students come from low-income homes and outside options for therapy almost certainly do not exist because of lack of money to pay for services. Julie Ferguson mentions the shortage of special education teachers as having direct implications in the learning process of the Down child. She attributes high turnover rate of teachers to lack of communication between teachers and parents and teachers and administrators. All of this is compounded by the low salaries being paid to teachers and adds to a high "burnout" rate. Julie Ferguson discussed the "waiting" period her students have for the availability of community living or group homes. These student are placed on a "waiting list" in the eighth grade to assure that by the time they are 25 years old they will have a space in a group home! This information is supported by the article titled, "Community Living" which states in " 1992 an estimated 186,000 people in the U.S. waiting for residential, employment, and other services"(3). The article goes on to say "many individuals with mental retardation do not receive the full array of services needed to increase their independence and…many still reside with their families and receive no services whatsoever"(3). These delays for services are due to caps or cutback in funds that provide for them ("Community Living" 3).
A solution must be found to start distributing funds back into areas that have had to cutback such as community living. This could be done by taking a percentage of money that is going to research to build more group homes or give raises to special education teachers. Another avenue that could be taken is restructuring the way money and funds are distributed from the government. Julie Ferguson felt that funding meant for her students some how got lost in "administrative redtape." She also mentioned unfortunately, that many parents receive the money sent by social security and may use it for their own use and not for the needs of the child. One solution might be in changing the method of distribution of money to assure that it goes directly to the services needed by those who so desperately need the assistance. The main issue is that funds must be used more efficiently to improve the quality of life of the young and aging mentally retarded.
CONCLUSION
The lack of services described are but
a few examples of what the individual with mental retardation must do without
because of the decreased availability of funds. Money is needed to train
more people who work with the mentally retarded and sustain the servicesso
needed to improve the life of the person afflicted with mental retardation.
Funds must be allocated for educational and daily living needs in order
to promote independence in the individual with mental retardation. An independent
person with mental retardation will in the long run need less assistance.
This will decrease overall spending and most importantly adds to a happy
and healthy quality of life for that individual who so deserves it.
WORKS CITED
"About Down Syndrome." National Down Syndrome Society. Yahoo. Aug. 1998. 14 Oct. 1999
Beers, H. Mark, and Robert Berkow. The Merck Manual of Diagnosis and Therapy. Whitehouse Station: Merck Research Laboratories, 1999.
"Community Living." The Arc’s Q & A on Community Living. Yahoo. Aug.1997. 14 Oct. 1999
"Down Syndrome."The Arc’s Q & A on Down Syndrome. Yahoo. March 1992. 14 Oct. 1999.
"Down Syndrome." Public Health Education Information Sheet. Yahoo. Sept. 1997. 15 Oct.1999.
Ferguson, Julie. Telephone interview. 11 Nov. 1999.
"General Information about Mental Retardation." National Information Center for Children and Youth with Disabilities. Yahoo. Feb. 1999. 15 Oct. 1999.
"Health Care Guidelines for Individuals with Down Syndrome."Down SyndromePreventive Medical Check List. Yahoo. June 1996. 14 Oct. 1999.
"Introduction to Mental Retardation." The Arc. Yahoo. Sept. 1998. 14 Oct. 1999.
"President’s
Committee on Mental Retardation." Mission. Yahoo. Aug.
1997. 15 Oct.1999 .
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