Clinical Aspects of Mental Retardation Research Paper

1. Concept of Support

One common theme in current conceptualizations of mental retardation has been the need individuals with this disability have for support. Supports which are resources and strategies that promote the interests and causes of individuals with or without disabilities, (Luckasson et al. 1992) require individualization for several reasons. First, a person’s capacity is influenced by their intelligence, adaptive skills, physical and mental health, and the disability’s etiology. Second, the extent and types of limitations and capabilities exhibited by individuals with mental retardation are influenced contextually by chronological age, community setting, and culture. Mental retardation refers to ‘a specific pattern of intellectual limitation, not a state of global incompetence’ (Luckasson et al. 1992). Third, a person’s support needs are balanced with their capabilities, with the demands made upon the individual by the environments used, and with the individual’s resultant functioning. Capabilities include intellectually dependent competencies such as social, practical, and academic skills. En ironments encompass the home and school but extend to the community and work setting with advancing age. Functioning refers to how one copes with the ordinary challenges of routine life; the significance of one’s limitations in functioning is influenced by the demands made and the supports available in an environment. The intensities and types of support necessary for individuals with mental retardation relate to the interaction between an individual’s capacity and the conditions or requirements of the environments used, and the acceptability of functioning that results. This support triangle conceptualization represents a shift in thinking from a clinical-psychological model of disability to a contextual or social-cultural model.

Four assumptions are central to the application of this definition of mental retardation (Luckasson et al. 1992):

(a) valid assessment considers cultural and linguistic diversity as well as differences in communication and behavioral factors;

(b) the existence of limitations in adaptive skills occurs within the context of community environments typical of the individual’s age peers and is indexed to the person’s individualized needs for supports;

(c) specific adaptive limitations often coexist with strengths in other adaptive skills or other personal capabilities; and

(d) with appropriate supports over a sustained period, the life functioning of the person with mental retardation will generally improve.

2. Diagnosis

Given the framework of these assumptions, several evaluation phases are required to diagnose mental retardation. First, the person’s IQ is tested. Second, their adaptive skills are measured, identifying the strengths and limitations in each applicable area of adaptive skill. Third, the age at which the suspected disability first occurred is determined. Finally, an individual’s performance on these assessments and the age of disability onset are evaluated against the three criteria required for a diagnosis of mental retardation:

(a) intellectual functioning is significantly below average: an IQ approximately 70 to 75 or less;

(b) consequential limitations exist in several or many crucial areas of adaptive skill: two or more of 10 applicable areas including communication, self-care, home living, social skills, community use, self-direction, health and safety, functional academics, leisure, and work; and

(c) the onset of the suspected disability occurs during the developmental period: before age 18.

In most instances, a diagnosis of mental retardation is preceded by observable, early delays in cognitive, social, and communication development. While some etiologies can be associated with a wide range of capability, others are more universally accompanied by mental retardation (e.g., chromosomal disorders like Down’s syndrome, Angelman syndrome, and trisomy 13 syndrome).

3. Procedure for Profiling Supports

When a social-cultural model is used to conceptualize mental retardation, clinicians aim not only to make a diagnosis or a determination of whether mental retardation exists, but also to describe the resources and services that person will require to function satisfactorily during a given period of life. This second aim, referred to as an indi idualized profile of supports, is a complex task requiring input from a team of professionals, family members, and whenever possible, the focus individual. Because a person’s support needs change with time, support profiles must be reexamined regularly and whenever significant changes are predicted or occur.

Like those without mental retardation, the lives of individuals with mental retardation have multiple dimensions: (a) capacity or ability (i.e., intellectual functioning and adaptive skills), (b) psychological or emotional well-being, (c) physical characteristics including health and the etiology of the disability, and (d) environmental influences of home, school, employment, and daily routines. For those who meet the diagnostic criteria for mental retardation, their team members proceed through several steps to construct a profile of supports across these life dimensions. Including diagnosis, this process consists of six steps:

(a) the individual’s strengths and weaknesses in intellectual and adaptive skills are identified;

(b) if significant limitations exist, the individual is assessed against the criteria for intellectual functioning and age of onset and a diagnosis for mental retardation is made or not made;

(c) the individual’s strengths and weaknesses in psychological and emotional wellbeing are identified; (d) the individual’s strengths and weaknesses in physical characteristics, health, and etiological considerations of the disability are determined;

(e) assessment is made of the environmental influences on the individual to determine strengths and weaknesses; and

(f) the types and intensities of support are identified that will onset any limitations across the four dimensions.

4. Classification

After defining mental retardation and determining who has the disability and who does not, additional systems of classification may have value. The modern view is to classify according to a system of intensities of needed supports. In the 1992 American Association for Mental Retardation (AAMR) system, for example, the individual’s support needs in each applicable adaptive skill area of the capability dimension (and in the other dimensions as well) are classified as being Intermittent, Limited, Extensive, or Pervasive. This is sometimes referred to as the ILEP classification system.

Determining the intensities of an individual’s support needs constitutes a team activity but also requires clinical judgment. There are no bright lines between each of the four intensities. However, consideration of five factors contributes to decisions about support intensity: time-duration (how long a support is needed); time-frequency (how often a support is required); settings in which the supports are needed; resources required for the supports (cost, personnel, expertise, etc.); and the degree of intrusiveness in one’s life. A decision grid of the five factors and the four intensities may contribute to team planning with the individual (Luckasson et al. 1996).

An older classification system categorized individuals with mental retardation by IQ ranges rather than classifying their needs for supports. This system was last described in the 1983 AAMR manual (Grossman 1983) (not a part of the current manual) and was retained as an option in DSM-IV (American Psychiatric Association 1994). The system used four to five IQ ranges: mild (IQ 50–55 to 70–75), moderate (IQ 35–40 to 50–55), severe (IQ 20–25 to 35–40), profound (IQ below 20–25), and sometimes borderline, a range between about 70–75 and 85 (technically a score outside the category of mental retardation but nevertheless a score indicating cognitive impairments). This system of classifying according to IQ ranges may have seemed more useful in earlier times when the IQ scores of individuals who did not receive education or who resided in large, isolated institutions were often predictive of functioning or placements. Today in many countries, however, with universal access to education, increasing access to supports, expectations that people will be part of their ordinary communities, and an understanding of the interaction between people and their environments, IQ scores alone are less predictive of functioning. Thus, a classification system that merely transforms the initial eligibility IQ score into a classification of mild, moderate, severe, or profound is less useful and even misleading. For example, to label those scoring in the relatively higher IQ range as ‘mild’ within a group already categorized as having significantly impaired cognitive functioning mischaracterizes the disability.

5. The Lives of People with Mental Retardation

All individuals with mental retardation, regardless of their age or IQ, should expect lives with personal meaning and opportunities to contribute to their families and communities. People with mental retardation will, of course, have different skills, motivations, temperaments, and opportunities. Mental retardation may affect how people find meaning in their lives but should not affect whether they find meaning.

Several principles should guide public policies, services, and supports for people with mental retardation:

(a) normalization: making available the normal opportunities of a society;

(b) inclusion: assuring that the person has the opportunity and support to be part of society; and

(c) choice: supporting the individual’s personal decision-making.

In this section, we consider personal meaning and the guiding principles in the lives of people with mental retardation at four stages: early childhood, school years, adulthood, and older years.

For infants and young children, the primary concern of society should be supporting their families’ ability to raise the child in a loving home and assuring that early intervention services are provided. Depending on the infant’s or child’s needs, services may include medical care, assistive technology, health supports, family supports, physical, occupational, and communication therapy, and early childhood education.

For school-aged children, the primary concern should be providing meaningful access to education for all students, including students with mental retardation. The goal is to provide students with individually functional skills that will contribute to a satisfying adulthood. In the US, the Individuals with Disabilities Education Act (IDEA) guarantees that every child with a disability, ages 3 through 22, has a legal right to a free appropriate public education in the least restrictive setting with any related services necessary to benefit from education. Transition planning and services, beginning at age 14, are required to facilitate a student’s entry to an adult role in society. Being included in schools and classrooms with peers without disabilities throughout their education appears to enhance both the abilities of students with mental retardation and nondisabled peers to learn from each other and establish lifelong relationships.

For adults with mental retardation, the primary concerns will be finding and keeping jobs, and establishing adult personal lives, including homes, families, and friendships. Financial assistance such as social security is critical in laying a financial base for individuals who otherwise will likely face extreme poverty. Job training and supports will also be critical to avoid the problems of unemployment and isolation. Similarly, antidiscrimination legislation such as the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 are important in fighting discriminatory denial of services and benefits.

Many people with mental retardation now live long lives, due to improved medical care and general health care improvements. For people in their older years, the primary support concerns will be maintaining family and community ties and preserving health. Issues of how to spend retirement years in satisfying activities and relationships will build on earlier experiences with work, family, and personal choices.

6. Continuing Controversies

Several areas of continuing controversy effect the concept and assessment of mental retardation. First, there is disagreement on the soundness of adaptive behavior (AB) measures and a lack of consensus on the construct of adaptive competence. AB test results appear to overlap with factors measured by IQ tests. Second, concerns exist about the use of IQ measures with people who have mental retardation. While IQ measures generally yield stable results, they are criticized as being racially discriminating, nonaccommodating to physical, sensory, or behavioral limitations, and impractical guides for interventionists. Some argue that intelligence should be conceptualized broadly as personal competence, and thus involve assessment of physical, affective, adaptive, and everyday competence. Beyond the assessment of IQ in people with disabilities, there is still widespread controversy over the relationships between IQ, culture, and genetics. Third, many US consumer and advocacy groups have rejected the term ‘mental retardation’ as stigmatizing and negative. This stigmatization may be at the root of the otherwise unexplainable reductions in many states of school-aged individuals with mental retardation labels and the corresponding increases in the number of individuals labeled with learning disabilities.

A final area of dispute involves the primacy of professionals over individuals with mental retardation in defining the label and its purpose and in determining needed supports. In recent years, many people with mental retardation have learned to advocate for themselves and have been influential in sensitizing professionals to (a) the value of person-centered planning, (b) the negative implications of the label, (c) the benefits of self-advocacy, and (d) the lowered expectations that result from a deficit orientation. Despite these trends, many people with mental retardation continue to be only minimally involved in decision-making about their own lives.

7. Future Directions

The future of mental retardation will likely be affected by several trends. First, the developed world is just now experiencing the first generation of young people who had universal access to special education and basic supports. These young people and their families have increased expectations of inclusion in their societies, and see themselves and their struggles in a more positive and political light than earlier generations who were neglected, deprived, and isolated because of their disabilities. Second, significant new neurological research on the brain functioning draws many old presumptions into question. It now appears that brain plasticity may extend over many years, that fetal surgery may prevent some brain conditions previously thought inevitable, and that many troubling behaviors have neurological bases and perhaps cures. These and other advances significantly change the prospects for many people with mental retardation.

Third, health-care providers face challenging questions daily about the rationing of health care, care for infants born with significant disabilities, and the value of life when a person has a disability. Societal doubts continue despite the increased demands of people with disabilities and their families for health care systems untainted by discrimination because of disability. It remains to be seen whether societies will genuinely commit to value all people with mental retardation, and to promote their sharing of all the benefits of the society or whether their tenuous place is protected only as long as they are not too disabled. Fourth, the construct of mental retardation is changing. It is changing from a purely scientific construct to incorporate a social construct, from an IQ-based definition to a functional, supports-based definition. These changes have implications both for assessing disability and for providing supports.

Finally, there is a growing acknowledgment of the forgotten generation, people with mild cognitive limitations who do not technically come within the traditional definition of mental retardation but whose daily functioning is limited by lowered intelligence. These individuals, because of their cognitive limitations, live at the margins of society, attempting to cope with poverty and unable to achieve adequate access to healthcare, social services, the justice system, or other benefits of society. They have received none of the specialized education, health care, or justice considerations because they failed the diagnostic criteria for mental retardation; but they have compelling needs. Perhaps societies will draw on lessons learned from addressing the needs of people with disabilities to assist the forgotten generation.

Bibliography:

1. American Psychiatric Association 1994 Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), 4th edn. APA, Washington, DC
2. Grossman H J (ed.) 1983 Classification in Mental Retardation. American Association on Mental Retardation, Washington, DC
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